Have your say

In 2012 the Department of Health (DH) was working towards developing a cross-government strategy on long term conditions. As part of this work we asked people to give us their views on this site about what a long term conditions strategy should include and comments closed on 15 June 2012.

As part of the changes to the health and care system, the NHS Commissioning Board is now responsible for producing proposals on how life can be made better for people with long term conditions. As a result, DH has not produced a long term conditions strategy as planned, but we have shared what we learnt with the Commissioning Board to inform its work.

You can still read the comments that people made below. We asked for views from people who:

  • have a long term condition or care for someone who has
  • work with people with long term conditions or their work affects them, such as health professionals, commissioners and local authorities
  • work in the voluntary sector, either in relation to people with long term conditions, or issues that affect them, such as housing

When people commented, we asked them to consider:

  • what problems they face, either living with a long term condition or in their work affecting people with long term conditions, and how they think these problems could be tackled
  • how local services can work together to make life better for people with long term conditions
  • how people with long term conditions can be experts in their own care and how services can be based on their individual needs
  • their experiences of different ways of working or their ideas about this
  • what common aims they think government departments should be signing up to, relating to all long term conditions

The following comments have been shared with the Commissioning Board.

446 Responses to Have your say

  1. Peter Grand says:

    I am not hearing a great deal about mental health in all of this, yet the mental health of all of there people is crucial in almost every case.

    Please can we have a more joined-up approach between physical health and mental health – it is a great pity that each considers itself to be a seperate part of the health service, and the two are rarely ever seen to meet up.

  2. Alan Rayner says:

    This is a generic subject and so needs a generic approach. A basic principle in Health Care is “Informed Consent”. Each individual needs right of access
    to information about her/his condition AND the right to appoint an agent to
    act as interpreter of such information (with right of access to personal data if
    such is specified by the individual).

    This means pre-planning in situations where there is a prospect of loss of
    mental capacity. In some cases a Lasting Power of Attorney is appropriate
    but wherever possible personal responsibility must be maintained. This
    may mean definition of a secondary role as “advisor” with fewer powers than
    those of the LPA but with a duty of care to the individual and a right to be
    consulted on health care issues – although acceding to the inalienable right
    of the individual to choose her/his treatment. A system of formal appointment
    would ease the administration.

    Greater attention is needed to the subject of Advanced Decisions to Refuse
    Treatment (ADRT) so that there is a greater propensity for them to be
    honoured. A formal registration system may be appropriate.

    However, major benefit could arise from expansion of EPP (the Expert
    Patient Programme) – not as a commercial enterprise but as an embedded
    facility within the community. The NHS could undertake the administration
    but the delivery when based on volunteers has considerable impact. The
    suggestion is that those with LTCs who have been through the EPP visit
    their GP some 17% less.

    This seems like a VERY profitable investment!
    The costs are relatively small (hire/use of a venue, some travelling expenses
    and refreshment costs plus the administration) and even if the fifteen million
    avoided making one call a year to the GP, the savings must be approaching
    hundreds of millions. In practice, they will be more!

    So what is needed.

    1) A culture of self-informed patients – with clinicians and others seeking
    to maximise the realisation of this potential.

    2) A system of encouragement for patients to have “Mackenzie Friends”
    at their appointments – and for training of such accompaniers so as to
    maximise the benefit to the patient.

    3) Greater focus on telecare and other electronic means of access to
    health (especially in rural areas – cf a recent project at Plymouth
    University). This has implications on the roll-out of Broadband.

    4) Development of a secure system for professional access to key records
    (eg ADRT, organ-donation etc) to ensure that patient wishes are known
    and respected.

    5) Expansion/Promotion of the Expert Patient Programme so that the patient
    increases her/his competence at self management of her/his condition.

    All theabove will imply cost but have considerable countervailing (although
    admittedly less transparent!) savings.

    6) The other area for attention is a close look at the interaction of PIP
    (Personal Independence Payments) from DWP with the remit of DH.

    If the public were more fully to understand (informed consent again!)
    the potential and purpose of PIP they could take significant steps to
    manage their condition in an idisyncratic way. Moving away from DLA
    does present a real opportunity which should not be missed.

    Whilst I am sure that there will be many specific ideas arising from this
    consultation, I would hope that some of the themes above will be adopted
    as a context for improving both the wellbeing of those with LTCs and, as a
    consequence, the budgetary position of the DH.

    There is much in the old adage that a patient with high self-esteem and a
    good sense of well-being will cost the system less – even if the objective
    circumstances are worse than those of someone with low self-esteem.
    Let us encourage self-management rather than victimhood!

    Alan Rayner
    EX39 2BA

  3. Emma Waters says:

    I am a public health registrar working at the NHS Sustainable Development Unit (SDU). The NHS SDU provides leadership, support, and technical guidance across the NHS and health system in relation to sustainability.

    The proposed shared goals for the Long Term Conditions Strategy are obviously hugely important to help ensure that steps are taken to help people to remain healthy, to detect and treat illnesses early, to ensure that people receive the healthcare and social support that they need, and to enable people living with long-term conditions to remain as well as possible while living full and independent lives. These are extremely important goals and the strategy should work to ensure that they are achieved for the health and well being of the population. However, it is also important to recognise that preventing ill health, an integrated approach to health and enabling people with long term conditions to remain as independent and well as possible will potentially also significantly reduce the environmental impact of the NHS. Thus the strategy could have important dual co-benefits to health and the environment.

    In England the NHS contributes a significant proportions of all carbon pollution (in 2004 2.6% of carbon emissions in England were attributable to the NHS http://www.sdu.nhs.uk/publications-resources/26/NHS-Carbon-Footprint-/). The NHS is committed to an 80% reduction in its carbon footprint by 2050. If this is to be achieved the NHS will need to embrace low carbon models of healthcare were healthcare, social services and education) are well integrated, and disease prevention is paramount. Low carbon models of healthcare delivery and the proposed goals of the Long Term Conditions Strategy are entirely compatible, and this opportunity should be taken to ensure that environmental and social sustainability are built into this important strategy. Ensuring that the strategy is environmentally and socially sustainable should deliver significant benefits to the health and well being of the population, and reduce the environmental impact of health and social care, as well as potentially delivering long-term cost savings.

    Further information about low carbon healthcare can be found at http://www.sdu.nhs.uk

  4. Barbara says:

    I attended a meeting called ‘Action on Pain’, where a fellow sufferer of chronic pain, who has Ehlers Danlos (otherwise known as a hypermobility syndrome) aired her latest experience. She knows she has a condition and asked her GP for a referral to a specialist centre – but this never happened, which prompts me to ask the following:

    If the GP decided that she was not able to go, surely he was wrong, as he is not the ‘expert’ therefore, not qualified to judge.

    If he chose the details to send, which prompted a refusal then the same thing applies.

    If, however, on the other hand, the centre chose to refuse her on the basis of limited funding and limited resources (therefore, limited appointments) then this is morally wrong (and probably legally wrong) – They should not assess on ‘paper details’, they should clinically assess her in order to make an informed decision.

    The condition this lady suffers from has many varients, many sufferers have symptoms which overlap several ‘varients’. One particular varient has a mortality age of about 48 years old. Can you imagine the fear this person is suffering by not being properly ‘heard’ and properly assessed?

  5. Barbara says:

    Careful test plans need to be developed, so that conditions are better identified. Incorrect methods and types of testing lead to great and unneccesary delay in diagnosis. They also waste much funding. After several of these have been conducted both GP and family & friends start to doubt the reality of your disease saying “well your tests have come back fine” and they deduce from that, that you’re alright – WHICH IS FAR FROM THE TRUTH.

    If you have had an amputation, or you’re paralysed, everyone is sympathetic with your condition because the problem is obvious – they can see it, but, if you have a ‘hidden’ condition, that is only obvious to the ‘expert eye’, if there are no ‘experts’ out there – YOU’VE HAD IT, with regard to obtaining the right diagnosis & treatment and care & support.

    Many conditions, regardless of their label (i.e. ALS, fibromyalgia, POTS, EDS, CFS/ME), share similarites in the manifestation of symptoms. Someone should be looking at this as they have done in the USA (The Driscoll Theory) as it seems for many neurological conditions, the underlying mechanisms that produce those symptoms, is the same.

    To further qualify this, let’s take the exmaple of compression of the vagus nerve; this would manifest in symptoms affecting several (many) body systems. The current NHS procedures are to send you to see an ‘expert’ in each body system, so you’ll be sent to a Neurologist, a Gastro-enetrologist, a Cardiologist, and son on and son on. Month after month, year after year, each time already adding to your already bulging medical file. None of them ever seem to get to the bottom of what is wrong with you. none of them seem to converse with each other and they certainly NEVER sit around a table to get to the root of your problem. This needs to change.

  6. Barbara says:

    Firstly, doctors’ pay increments should be based on ‘new knowledge’, giving them an incentive to keep up with current research.

    Secondly, at the moment the public has no central point it can go to, to immediately find a specialist with the appropriate interest/experience. This facility would be very useful in helping us to chose the most appropriate specialist. It would also be a means of checking where ‘holes’ were appearing in the knowledge base, so that the appropriate training/reaserch could be developed to patch this hole.

  7. Barbara says:

    My elderly aunt suffered a stroke. She was first of all in almost a ‘locked-in’ state, i.e. she was fully aware of what was going on around her but unable to communicate. Basically the staff in the hospital ignored her but I managed to set up a system where I structured the questions to give a YES or NO answer and told her to move the only part she could move, according to her answer. This was great when I was at the hospital but I lived 80 miles away and could only get to see her once a week if I was lucky. There should be some system developed (and training given) to ensure that these patients can communicate!

  8. Siobhain McCurrach says:

    With next year’s new commissioniong arrangements it is essential to have Long Term Conditions a central issue to be supported in primary care. Early diagnosis and referral to appropriate treatment and support can only be fully achieved if health professionals are aware of the the value that patient groups can provide inbetween appointments. Signposting to appropriate patient groups for the long term condition initially diagnosed could prevent a great deal of anxiety for the patient who is experiencing a life changing event. Simple cost-effective mechanisms can be developed if local services work together with the voluntary sector to make life better for people with long term conditions. It could also prevent the patient’s condition deteriorating to the extent that they require expensive and invasive secondary care.

    Improving support for ‘Patient Education’ for people with long term conditions could make it a more realistic goal for patients to become experts in their own care and suggest how services can be based on their individual needs. Patient held records such as the capturing of health data on the ‘howareyou.com’ website could go a long way to developing this.

    Difficulties in accessing physiotherapy, hydrotherapy and continuing physical exercise in a group setting to support to manage long term conditions has often been reported as a problem. Once patients have been through their six weeks of physiotherapy they feel very supported but then do not know how to maintain their commitment to the exercise regime they have been introduced to. Socially isolated people in their own homes are likely to return to bad habits without peer support or attendance at an appropriately geared group session to maintain interest. Concessions for attendance at group exercise classes and healthy lunch clubs or subsidising leisure centres to offer hydrotherapy sessions once a week could go a long way to maintaining the habit of approrpriate regular exercise and diet for people with long term conditions.

    Considering that Long Term Conditions affect around 15 million adults in the UK it is a very large proportion of the population that needs help now to prevent their condition deteriorating. So whilst a ‘prevention agenda’ across government departments will help for some long term conditions we need to support the ‘preventing further deterioration of a long term condition’ agenda to be implemented across government departments.

  9. Tracey says:

    Hearing Loss affects one in six of the population. It is an invisible condition that can lead to high levels of social isolation and consequent mental ill health. It can also have a major impact on people’s social and working life.

    In early life, hearing loss can impact on language development and educational attainment. It can also affect later employment opportunities, result in social isolation, mental health problems, and depression.

    Early identification of hearing loss and access to assistive technologies such as hearings aids and cochlear implants, can improve speech and language development in children and, in older people, improve their quality of life (Chisholm et al, 2007).

    Given the number of people affected, it is important that the Government includes hearing loss as part of its long term conditions strategy, to raise awareness of its prevalence and its impact on people’s lives, to encourage people to seek early intervention, and to reduce the stigma attached to it that prevents people from seeking help sooner (because people think that this is something that only affects old people and has to be accepted as we grow older).

    Whilst the risk of hearing loss, does increase with normal ageing, hearing loss also results from excessive noise arising either as an occupational hazard (eg construction & manufacturing industries), or resulting from the use of MP3 players which is causing increasing levels of hearing loss in much younger age groups (Rabinowitz, 2010). The Medical Research Council estimates that four million UK adolescents are at risk of hearing damage from amplified music (Hughes et al, 1986) and noise exposure is considered to be the major avoidable cause of permanent hearing impairment worldwide (WHO, 1997). It is a growing problem that does not just affect ‘the aged’.

    Hearing loss is often associated with other long term conditions. One study in Austria found evidence that Deaf people are more likely to suffer from heart disease, cancer and diabetes, linking this to differential access to health and prevention services and information. Hearing loss is also associated with conditions such as diabetes (Kakarlapudi et al, 2003; Bainbridge et al, 2008), tinnitus and balance disorders (which contribute as risk factors for falls and other accidental injuries (Davis et al, 2007)), and other potentially limiting conditions such as osteoarthritis.

    Recent research has also found evidence that people with mild hearing loss have nearly twice the chance of developing dementia compared to people with normal hearing. This risk increases threefold for those with moderate and fivefold for severe hearing loss. Influencing factors could be social isolation, loneliness and extra difficulties coping with declining mental functions sometimes brought about by hearing loss (Lin et al, 2011).

    With regard to mental health, one study found mental health problems in 43% of Deaf children compared to 25% in their hearing counterparts (Hindley et al, 1994) and for those who develop age-acquired hearing loss, the majority of which have found this to be significantly associated with the development of depressive symptoms (Wang, 2009).

    The national charity, Action on Hearing Loss (AoHL) has noted the following negative implications for the management of other long term conditions:
    • Unmet communication needs, arising from hearing loss, pose a challenge to the management of long term conditions.
    • People with hearing loss experience greater difficulties in accessing health services and receive a lower standard of health service across the board.
    • Unmanaged hearing loss can bring about particular challenges in terms of the management of particular conditions such as diabetes, where patients can play a large role in self-managing their condition, and effective communication with health professionals as essential.

    The long term conditions strategy therefore needs to recognise the importance of taking a more joined-up approach where someone has hearing loss and another long term condition. I would therefore support the call by AoHL for the Long Term Conditions strategy to include:

    1. Diagnostic procedures for conditions, such as dementia, that take into account the impact of hearing loss.
    2. Guidance around the management of long term conditions that takes into account the impact of hearing loss.
    3. Provision of information in formats that are accessible to people with hearing loss.
    4. Higher rates of cross-referral by healthcare professionals, for instance, audiologists and dementia specialists.
    5. More health promotion activities and health services that are accessible to British Sign Language users.

    I am aware that NICE undertook some initial work on producing guidance on hearing loss that did not come to fruition and I believe that work should continue by NICE to develop a quality standard on hearing loss.

    I would also like the strategy to make clear links to and inform the content of the Public and NHS Outcomes Frameworks, as well as the Commissioning Outcomes Framework, and the Quality and Outcomes Framework used by GPs surgeries.

    Finally, I would like the strategy to recommend that Joint Strategic Needs Assessments undertaken by Local Government, take account of the full scale of the prevalence of hearing loss in their communities, rather than relying on the Local Authority registration that is often used to assess demand, but greatly underestimates, the need for sensory support services.

  10. Unpaid Carer says:

    One final point – there should be AUTOMATIC help with home heating costs (in the form of the discount from energy companies) for carers on low incomes and also for everyone with conditions like ME, endometriosis and hypothyroidism that create low body temperatures meaning that the sufferer is often never warm enough in this climate, and has to use the heating for the vast majority of the year

    Thank you again

  11. Unpaid Carer says:

    From my point-of-view, this is what I would like to see –

    There should definitely be financial support (like Invalid Care Allowance and Home Protection) available to those people who care for people who are getting sickness benefit, but are (often unfairly) excluded from accessing any disability benefit. Such people may actually need just as much/more care than some people who can access DLA and that is not right and so unfair – a MAJOR INEQUALITY

    Action taken on an acknowledgement of the fact that there are many low-income pensioners caring for their adult children as well as their parent(s), and that the burden of caring for either is HUGE, let alone both. On a low pension, the financial strain is also SEVERE and the stress of that compounds all the other problems that an unpaid carer goes through

    All unpaid carers being acknowledged as a very valuable member of society who is saving the country a fortune every year

    For GPs to have carer flags on a patient’s files that actually mean something – i.e. the GP actually asks carers how they are in terms of their wellbeing at each appointment, asks if they require a social services carers assessment of their own needs and suggests national and local carers and patient condition support groups – none of this is my experience of GPs

    For GPs to offer the free flu jab to all carers so that they do not contract it and pass it to those they care for

    Provision of free eye tests, free dental checks and free prescriptions etc to carers on low incomes as these are often the first things to go when finances and energy are low. Also, to offer all patients with LTCs free prescriptions, not only those with thyroid etc who are entitled automatically now

    For GPs to work with local non-NHS practitioners to give carers and the person they care for vouchers for free taster sessions of services like various types of massage. As other respondents have said, all these would be likely to be highly beneficial, both physically and emotionally, but are very sadly not available on the NHS

    Working with businesses to offer carers vouchers for free entry into local attractions, e.g. museums, galleries, National Trust/English Heritage sites, RHS gardens etc so they can have a well earned couple of hours break from time to time

    To provide either free hospital taxis or vouchers for taxis for patients who have nobody to take them (I cannot run a car) to hospitals and struggle with getting to appointments – it very often stops people getting the vital treatment they need

    To ask patients with LTCs about their all-round well-being not just about their symptoms – there may well be many problems (e.g. financial, relationship, home life etc) in their lives that are adding to the burden of their LTCs or a result of the lack of quality of life (QOL) caused by their LTCs

    For GPs to monitor LTC patients in terms of their QOL (asking the patient to rate it on a scale) and if this is low, to work together to try to improve this rating

    Thank you very much for this consultation – I really look forward to seeing the public feedback put into action.

  12. Unpaid Carer says:

    Some suggestions that come from the patient’s (who I care for) point-of-view:

    For all clinicians to respectthe fact that patients know their own bodies and they know when something is wrong with them, therefore they shouldn’t be dismissed and fobbed off, thereby making the situation for the patient much more stressful than it already is

    Similarly, to be believed that they are in pain and particularly the severity of the pain and to be prescribed ADEQUATE pain relief. Often the standard recommendation of ibuprofen and paracetamol do not go anywhere near helping the pain a patient faces. GP’s can seem afraid of prescribing stronger painkillers such as opiates, but they should not be the preserve of cancer sufferers. If the first prescription does not work, to be told to come back and try the next step up. If pain is not lessened, then stress is created and this makes the underlying health problems worse and can potentially lead to other health problems such as heart problems and cancer

    Understanding, sympathetic and compassionate clinicians are needed. Many come across as intimidating, uncaring and as if patients are just numbers to be ticked off a list

    Early diagnosis is crucial, especially in conditions (e.g. ME) where the long-term prognosis starkly declines the longer they go undiagnosed

    Early diagnosis often requires more updates and training for all clinicians than they currently receive

    When test requests (from patients), such as bloods, are not granted, this can often be false-economy for the NHS as the condition(s) can decline in the meantime and then actually eventually require more extensive tests and treatment than would have been the case if the GP/consultant would have initially agreed

    Clinicians could take a more joined-up approach diagnostically and link conditions (e.g. if a patient has two or more auto-immune conditions, to see that the conditions often go hand in hand and can be connected, or one can lead to another etc)

    NICE making faster decisions on drugs would be very much appreciated by those with LTCs – an example being a medicine called ‘Visanne’ (it is licensed in Europe as an endometriosis treatment, but to the best of my knowledge, is still unfathomably nowhere to be seen in the UK – women’s long term health problems very sadly seem to be one of the Cinderella areas of the NHS – and so much focus seems to be placed on NICE deciding on cancer drugs)

    As soon as a patient is diagnosed with a LTC, to AUTOMATICALLY offer NHS counselling sessions (or advise them of a local charitable counselling service) to help them come to terms with the HUGE impact of dealing with the many impacts of having a LTC. This would really help to mitigate the effects of physical LTC’s on mental health

    Furthermore, for all clinicians to understand that physical LTC’s can have a very detrimental effect on the emotional wellbeing, mental health and self-esteem and self-confidence of patients. It is especially difficult to come to terms with getting LTC’s if the patient had always done their best to live healthily (following the DOH’s diet and exercise guideline) and this should be acknowledged by clinicians

    For clinicians to be trained to think how they would feel in a patient’s situation – e.g. if a patient cannot have intimate physical relationships (which are such a meaningful and wonderful part of life) due to the physical limitations/pain caused by their conditions and how this would impact upon them emotionally

    For clinicians to play their part in trying to reduce the stigma that is associated with being long-term ill

    For GP’s to have access to an up-to-date database of local support groups and organisations for particular conditions and offer that information to patients to empower them

    If patients have LTC’s and are trying their best to carry on eating healthily (despite healthy fresh foods very frustratingly often being more costly than junk – that needs addressing), keep their weight at a manageable level and don’t smoke, this should be acknowledged and praised by clinicians, possibly even by prioritising those people for non-urgent operations over those who smoke and choose to only eat junk (there may be circumstances where people sadly may have no choice but to rely on ready meals as they are too ill to cook)

    GP’s could ask patients with LTCs if they smoke and urge them to try to give up using the many NHS provided tools as it is so detrimental to overall health and physical functioning

    For GP’s to ask patients with LTCs (especially those classed as invisible disabilities like IBS and IBD that can easily be overlooked as there are no obvious outward physical signs of these illnesses) if they feel they need any support from other services such as social services or counselling services etc as people with LTCs can often put a brave face on things and feel unable to voice their needs and requirements

    For the DWP – making all illness and disability welfare claim forms shorter and less stressful to complete (the detrimental impact the process of these and the whole experience of having no choice but to claim on the patient’s health and wellbeing cannot be underestimated), allowing medical evidence to be taken into account at the time of the initial assessments, not only at the appeal stage and making the initial assessments much fairer

    Thank you very much for taking the time to read this.

  13. Debbbie Sayers says:

    The problems I and many of the members of my support groups face is a general lack of knowledge or even an agreement on how to treat or in some cases diagnose Fibromyalgia/ME/CFS. What we need are localised centres of excellence in treating long term chronic pain and fatigue. Places where all the various treatments (not just drug therapies) can be treated from, in order to give us a joined up approach to chronic fatigue and pain. This would need to include support agencies as well, like social services or benefits agencies and work support if appropriate, so we can get all our needs dealt with from the same place and through a team working with in the same principled network. Most of the frustration and despair I see is derived from the lack of one part of the so called support network being able or willing to work with or through other elements of the support network. People in chronic pain and fatigue need to be able to organise all their care from one source negating the need to waist fruitless hours and precious energy reserves chasing up treatments between one health provider and another. Additionally they need to be trusted, the amount of disbelief I have encountered in regard to my health has been astonishing, the expert patient program is excellent but is not going to work if we are not trusted to be the expert, this applies to medication as well. We need to know that our medical/social teams believe us and will support us in a joined up way.
    Another issue for FM/ME/and CFS patients is the astonishing lack of medical research in regard to these illnesses the vast majority of research is aimed at physiological causes and treatment which goes against the world health organisations categorising these illnesses as neurological. Psychological treatments for these illnesses are only useful to treat the depression associated with chronic pain and loss of mobility, etc. We need further resources to research better treatments and the underlying cause of these very real physical chronic pain and chronic fatigue disorders/illnesses.

  14. Dr Jo Bibby says:

    Thank you for the opportunity to comment on what should be covered in the long term conditions strategy.

    The Health Foundation is an independent charity working to continuously improve the quality of healthcare in the UK. We are here to inspire and create the space for people to make lasting improvement to health services. Working at every level of the system, we aim to develop the technical skills, leadership, capacity and knowledge, and build the will for change, to secure lasting improvements to healthcare.

    Someone with a long term condition spends on average 3 hours each year in contact with a healthcare professional and 8757 hours looking after themselves. People are already managing their conditions but much more could be done to support those with long term conditions to do this more effectively.

    As well as having a lasting impact on people’s quality of life and wider health outcomes, this support can lead to improved health outcomes and improved levels of patients activation. Patient activation refers to a person’s ability to manage their health and healthcare. As well as exhibiting general health-promoting behaviours, people with higher levels of activation are also more likely to adopt health behaviours specific to their particular long term condition(s). For instance, more activated people with diabetes are more likely to keep a glucose journal and more activated people with arthritis are more likely to exercise. Improved activation is therefore the first, pivotal step on the road to the optimal management of any long term condition.

    However, supporting people to manage their healthcare requires changes in the way healthcare is delivered. There needs to be:
    • Greater emphasis on understanding the motivations and challenges people face in adopting health-promoting behaviours.
    • Recognition of the role of patients in supporting their peers to manage their long term conditions and support for patients to do this.
    • Action to support increased health literacy. We welcome the commitment in ‘The power of information: putting all of us in control of the health and care information we need’ to develop a partnership to engage directly with patients and the public to increase health literacy.
    • Commitment from educators to improving the clinical curriculum to support health professionals to develop necessary skills.
    • Recognition of the importance of measuring both people’s ability to manage their health and the quality of decision making, as well as commitment to develop these.

    We are happy to share our learning with you about how we have supported hundreds of patients across the UK to manage their long term conditions. Since 2007 the Health Foundation’s Co-creating Health programme has been working with NHS sites across England and Scotland to support people to take a more active role in managing their health. It does this by building their confidence, knowledge and skills to self-manage, and supporting these with changes in clinical practice and service delivery.

    We would also like to offer you the opportunity to meet with some of the patients and professionals involved in our Co-creating Health programme as well as the leading thinkers from academia and practice with whom we work. Further information about the programme can be read on the Health Foundation’s website at http://www.health.org.uk/areas-of-work/programmes/co-creating-health/. You may find our review of the evidence for self management support helpful: http://www.health.org.uk/publications/evidence-helping-people-help-themselves.

    With kind regards,

    Jo Bibby
    Director of Strategy, The Health Foundation

  15. Lucy Greenwood says:

    At Parkinson’s UK we welcome the chance to respond to the consultation on Long Term Conditions. Parkinson’s is a long-term, degenerative neurological condition affecting an estimated 127,000 people in the UK. Parkinson’s results from the gradual death of the brain cells that produces the neurotransmitter dopamine. Most people who get Parkinson’s are aged 50 or over but younger people can get it too. Symptoms most often associated with Parkinson’s are tremor, stiffness and slowness of movement but there are many other symptoms that can affect every aspect of daily life. These include, pain, sleep problems, anxiety, depression and difficulties with communication and cognition.

    As the UK Parkinson’s support and research charity we’re committed to improving life and finding a cure for everyone affected by Parkinson’s. Listening to people affected is at the heart of our work and many have contributed their ideas to the long term conditions consultation. The main issues people affected raised to be addressed are:

    • The right specialist care and support for complex conditions like Parkinson’s

    • Automatic signposting to information and support from the point of diagnosis

    • Timely access to therapy provision to maintain independence and optimum quality of life

    • Effective support for carers

    • Service joined up around the needs of the individual across primary, secondary tertiary and social care

    • Impact assessment of policy changes on people with long term conditions

    Here’s a flavour of what they said:

    The right specialist care and support for complex conditions

    “I was diagnosed with PD 5 years ago and consider myself to still be in ‘early stages’. I’m afraid I am a bit like an Ostrich and bury my head in the sand. I take each day as it comes. I don’t really think I want to know what the future holds. My main concern is the possibility of losing my PD Nurse – Judith. My GP has no real understanding of the condition being ‘a general practitioner’ and is not a specialist. Judith is there by email/phone if I have a problem. I would not get that service with my GP. Whatever the current government do I hope these nurses will be retained. I also think my GP, if looking for cuts, will not contribute to a nurse’s cost. I rarely see my GP as I am looked after by Judith so I save my GP time. I cannot imagine only having a GP for support, it fills me with dread. I really don’t think GPs understand the support we get from specialist nurses.”

    “I find that people have no concept of the disease and how it affects sufferers especially because it effects all differently. Professionals on a general level appear not to provide the support we need.”

    Automatic signposting to information and support available from patient organizations from the point of diagnosis

    “On diagnosis information is not readily available about the condition and it is necessary to find things out for yourself. The health professionals should ensure that every newly diagnosed patient receives some simple information as well as details of the nearest Parkinson’s UK branch.”

    Timely access to therapy provision to maintain independence and optimum quality of life

    “Keeping mobile is key to maintaining health for people with Parkinson’s, but most find this hard. Providing the means to be mobile, at home or elsewhere is more cost-effective than not providing it, as we will decline faster if we cannot move. Dance, Tai Chi Chuan, and other forms of therapy, and exercise machines help us. Making it possible to access such things means less cost to the government. For working age people with Parkinson’s it could be the difference between staying in work and not. If people are on low incomes, in or out of work, or retired, they may not be able to afford things like this, so it is important that government recognises the needs of and how disability payments help cut down major costs such as hospitalisation from falls by helping people with Parkinson’s maintain mobility and a life outside of the home.”

    Effective support for carers

    “Daytime visits planned to help with toileting/ changing do not often coincide with need and so I often have to help my husband unaided; no mean feat as he is 6ft 2″ and probably 14 1/2 stone. PCT do not contact me at all to check on our progress coping with this caring situation…PCT have not checked to see whether I have had respite breaks. They will not fund the care system that really works well for my husband; i.e. a well-known carer who moves in to take my place when I take a break. PCT will fund a total stranger, who moves in the day before I leave, to try to understand the complex needs of a very vulnerable man and the workings of the household. This has not worked in the past and has caused much distress to my husband and made me feel very guilty for leaving him in these circumstances. I am therefore not prepared to do this again. I was once persuaded by the PCT to let him go into residential care which was probably a less expensive option for them and again my husband was not happy in this setting.”

    Service joined up around the needs of the individual

    “It would be good if our medical professionals worked together to help monitor and manage Parkinson’s disease with people with Parkinson’s. By this I mean that multi-disciplinary teams of doctors who communicated well with each other. We are the sum total of our whole being, and need to be treated as whole people not as our constituent parts. Likewise each specialist we see should be a part of a team. When there is a failure in communication we get medications that do not mix well together, contradictory advice, missed secondary conditions, and our health suffers. The complex needs of PD are not addressed by a neurologist alone, or by the medication, though you would be forgiven if this is what you thought. Often my needs are due to the complexity itself and not the things that are more easily associated with PD like tremor. The medications have side effects and these have become more intrusive with time.”

    “We need “joined up” treatment where everyone knows what is going on and a more flexible approach to our treatment! When our condition becomes more complex the treatments like DBS and Duodopa should be more readily available.”

    Impact assessment of policy changes on people with long term conditions

    “I feel the government needs to put into place criteria that anyone suffering with a degenerative illness should not have to reapply for benefit unless there is the likelihood that their condition could improve which obviously isn’t the case with Parkinson’s. My sister, at 45 years old, was diagnosed with Parkinson’s which has progressively worsened. She is now 50 and has had an awful time with medication, side effects and trying to cope with this terrible condition on a day to day basis. My brother-in-law is her rock and, as well as being her carer, also holds down two jobs to make ends meet as she had to give up her career some years ago. Financially one of the worst things is that every amount of assistance she has struggled to secure, has to be assessed and then reassessed on a regular basis as if she might be a potential benefit fraudster.”

    “People with Parkinson’s need space to move around. Those who, like myself live in Council property, are considered to be in reasonable housing. Council officials do not understand of the importance of easy mobility. I live in a 1 bed bungalow with no space, I personally find this frightening when I “freeze” and or getting around furniture. We should be campaigning all the time to ensure the Government and local Councils are aware of these needs so to be ensured that everything possible is being done to give us a better way of life.”

    Making a difference
    This selection of comments reflects the scale of the challenge to make sure that people affected by long term conditions like Parkinson’s can get the right information, support and services to manage their condition and achieve the best quality of life.

    The comments demonstrate how important the right leadership and quality drivers will be within the new NHS landscape in order to bring about the level of change needed.

    We hope very much the voices of people who contributed to this consultation will be heard.

  16. Beth Britton says:

    When formulating a long-term conditions strategy, key factors for people developing and living with dementia are around diagnosis (the earlier the better), support and advice throughout EVERY stage of dementia, continual focus on quality of life throughout the disease, making appropriate therapies and examples of best practice in design available to everyone, and most importantly of all, personalisation of services.

    Staff in all sectors of healthcare need more dementia appropriate training, health and social care needs to work in partnership, and current pockets of best practice need to be replicated across the entire country. Given the reliance on the private sector to provide care home placements, there needs to be far greater regulation of these providers, both in terms of the care they provide and the way in which they structure their business. People living with dementia need continuity, familiarity, reassurance and respect – fear of care homes closing due to bad business practice isn’t acceptable. Likewise, greater adherence to standards in care, particularly specialist dementia care, needs addressing.

    It is vital to involve and support family and friends of those living with dementia to understand the disease, support their loved one effectively, help plan for the future, and feel fully engaged in the health and social care systems. Constant battles for services and advice are draining and take the focus away from the person with dementia at the very time when they need their families the most. Families are vital support mechanisms for people with dementia and their contribution, most notably in terms of their caring role, needs far more recognition. Family members often become experts in dementia over the years their loved-one is living with it, and they have a huge amount of knowledge and expertise. It should also be remembered that they generally know the person far better than anyone else, and are therefore best placed to advise on their individual needs and personalisation of services in the latter stages of dementia, when the person themselves may have more limited communication skills.

    Tackling stigma is vital in improving diagnosis rates. If people feel knowledgeable and empowered they are more likely to seek help themselves when they know they are having problems, or indeed family members and friends will be able to broach the subject of seeking help with far more confidence. Dementia isn’t a black hole of nothing – you can live well with dementia, and with access to the right services and therapies, have a good quality of life.

    Clearly, the government’s specific Dementia Challenge will address these issues more in depth, but when formulating the long-term conditions strategy it is vitally important that the needs of people developing and living with dementia are fully recognised and accounted for.

    Beth Britton

  17. Hannah Graff says:

    National Heart Forum response to DH consultation on developing a cross-government strategy:

    The National Heart Forum (NHF) is a leading charitable alliance of 70 national organisations working to reduce the risk of coronary heart disease and related conditions such as stroke, diabetes and cancer. NHF is both a UK forum and an international centre for chronic disease prevention. Our purpose is to co-ordinate public health policy development and advocacy among members drawn from professional representative bodies, consumer groups, voluntary and public sector organisations. Government departments have observer status. The views expressed here do not necessarily reflect the opinions of individual members of the forum.

    Our work aims to address the wider economic, social and environmental determinants of disease, taking into account factors like sustainable development and climate change, and addressing inequalities in health.

    In relation to long term conditions, our focus is the prevention of cardiovascular disease, stroke, type 2 diabetes, cancer, overweight and obesity, respiratory disease and hypertensive disease and the shared, modifiable risk factors of physical inactivity, poor nutrition, tobacco and alcohol use.

    The NHF supports the development of a cross-governmental strategy on long term conditions. The rising rates of overweight and obesity, persistent smoking prevalence and increased alcohol consumption in some social groups, together with advances in medical treatments of many chronic conditions means that more people are living for longer with these conditions. Unless and until we are more successful in primary prevention we urgently need a comprehensive long term conditions strategy with appropriate investment of resources.

    Specifically, we endorse the following points:

    - Working with the voluntary sector, either in relation to people with long term conditions, or issues that affect them, such as housing, transportation and access to food.

    - Prevention priorities that bring policymakers across Government departments and cross-government agencies together.

    - How local services can work together to make life better for people with long term conditions and promote the prevention of chronic disease in their communities.

    - The commitment to supporting individuals and communities to stay healthy and avoid long term conditions in the first place.

    The NHF would like to further encourage the strategy to acknowledge that fully supporting the independence of individuals with long term conditions includes ensuring they are living in communities with accessible and healthy built environments, with opportunities to be physically active and to gain access to affordable healthy foods.

    A cross-government strategy should allow for flexibility at both the national and local level, while addressing the wider economic, social and environmental factors affecting prevention and treatment of long term conditions.

  18. Sally Percy says:

    1. About the Neurological Alliance
    The Neurological Alliance is the only collective voice for more than 70 national and regional brain and spine organisations working together to make life better for 8 million children, young people and adults in England with a neurological condition.

    Our vision is for a better quality of life for each individual diagnosed with a neurological condition. Our mission is to raise awareness and understanding of neurological conditions to ensure that every person diagnosed with a neurological condition has access to high quality, joined up services and information from their first symptoms, throughout their life.

    2. Overview
    The Neurological Alliance welcomes the development of the Long Term Conditions Outcomes Strategy (LTCOS) and fully supports its ambition to enhance outcomes for all people with long term conditions throughout their lives. A large proportion of neurological conditions are long term and given that many of the outcomes desired by people with neurological conditions are common to all long term conditions, we appreciate the potential value of this strategy.

    In order for the LTCOS to achieve its potential and improve outcomes for those with long term neurological conditions, it must address key issues currently not emphasised in its scope such as complexity, specialist needs and rehabilitation.

    Additionally, the LTCOS must be regarded as part of a broader approach to achieve vital improvements in neurological outcomes. The LTCOS alone cannot resolve the years of neglect; only in conjunction with a robust LTCOS implementation plan, Strategic Clinical Network for neurology, the early development of both neurological Quality Standards and NHS Commissioning Board (NHS CB) guidance and the proportionate inclusion of neurology specific indicators in the Commissioning Outcomes Framework will improvement occur. It is unrealistic to expect for appropriate services for people with neurological conditions to be commissioned through the LTCOS without additional levers and incentives.

    Whilst the generic LTCOS has been cited during the Neurological Alliance’s recent ‘Better deal for neurology’ campaign as the strategy under which neurology will sit in the future, not all neurological conditions are long term. In order to meet the needs of the 8 million people with a neurological condition in England equitably under the new health and social care arrangements the Department of Health and NHS CB need to take the full spectrum of neurological conditions into consideration in current and future policy development.

    We believe that, if underpinned by a robust implementation strategy including accountability mechanisms, the LTCOS has the potential to help drive improved outcomes.

    3. The nature of neurological conditions and the scope of the LTCOS
    Conditions on the neurological spectrum are diverse: some are stable, others are characterised by sudden onset, many are intermittent and unpredictable and a large proportion are progressive. The vast majority are rare and all are complex.

    Despite the fact that not all neurological conditions are long term, neurology has been placed wholesale within the scope of the LTCOS from the outset of its development. It remains unclear how the LTCOS will deliver for conditions that are rapidly progressive where life expectancy is very short, such as motor neurone disease, or for those not always long term, such as acquired brain injury.

    With Ministers and the Department of Health continuing to signpost the LTCOS in respect of all neurological conditions, we have real concerns that the conditions that fall outside of the strategy’s scope will be overlooked as commissioners will not have appropriate support and direction on how to deliver the best outcomes for these individuals.

    4. The profile of neurology under the long term conditions umbrella
    Neurological conditions are largely poorly understood by health and social care professionals alike. This has resulted in the historic neglect of neurology which successive administrations have mirrored in terms of their policy priorities, placing neurology in the ‘too difficult’ category.

    Professionals’ lack of awareness and in-depth knowledge around neurological conditions impacts significantly on the quality of life of people with neurological conditions, from diagnosis onwards. This causes stress and anxiety and delays access to treatment and management which may accelerate progression of the condition and increase the consequent burden across multiple systems.

    In order to address the improvements required as outlined in the recent key reports by the Association of British Neurologists and the Royal College of Physicians* and the National Audit Office (NAO)**, professionals need to be encouraged to engage with, and prioritise neurological conditions. A solution to this would be to granting neurology some individual prominence within the strategies, frameworks and levers of the new health and social care system. If neurology sits in the LTCOS under the umbrella of long term conditions, it is inevitable that clinical commissioning groups will prioritise more common conditions in their commissioning decisions.

    Neurology is exclusively categorised under long term conditions in both the NHS Outcomes Framework and Commissioning Outcomes Framework, and without a commitment that the confirmed neurology specific NICE Quality Standards will be prioritised, the new system is not rigged to deliver improvements in neurological outcomes at the pace and scale necessary before the National Audit Office review neurological services in 2014.

    5. What the LTCOS needs to include from a neurological perspective
    In order to ensure that, when implemented, the LTCOS can play a proactive role in improving outcomes for people with long term neurological conditions and others, the strategy must incorporate the following themes:

    5.1 The need for early and accurate diagnosis by and access to a specialist
    Achieving early and accurate diagnosis is essential for all people with neurological conditions, without which they cannot access appropriate and timely care, support and, where available treatment. Delay in diagnosing encephalitis, for example, could result in debilitating acquired brain injury or death.

    5.2 Timely access to rehabilitation
    Whilst rehabilitation is not applicable to all long term conditions, the ability to access rehabilitative services is crucial for people with neurological conditions such as Guillain-Barre syndrome, stroke and multiple sclerosis. Rehabilitation can help prevent further complications, retain independence and allow the individual to return to normal life as quickly as possible; this enhances quality of life, reduces the financial burden on health, social care and welfare budgets and reduces the risk of readmission.

    5.3 The importance of multidisciplinary team working
    Individuals with a neurological condition can access up to 30 different services within their lifetime. It is therefore essential that the individual’s care, from diagnosis through to end of life care, is coordinate by a multidisciplinary team, which works across health and social care and where appropriate includes an individual care plan. For neurology, multidisciplinary team may comprise professionals including but not limited to neurologists, specialist nurses, clinical psychologists, specialist physiotherapist, specialist occupational therapist, social workers, mental health support and speech and language therapist and dentists.

    5.4 Process for and prevention of emergency/unplanned hospital admissions
    Where an individual with a neurological condition attends Accident and Emergency on an unplanned or emergency basis, they need access to neurological expertise and to, where relevant, to be referred to the relevant services urgently, as is the case for epilepsy for example.

    In respect of preventing unplanned hospital admissions, shared protocols and pathways of care between primary and secondary care are essential. Care plans and self management can also prevent unnecessary hospital admissions for those with complex care requirements. This must be a priority within the context of the LTCOS.

    5.5 Ongoing care and monitoring
    The majority of people with neurological conditions are placed back under the care of a GP following diagnosis and the receipt of an initial management plan. As GPs will not necessarily know how to manage a large proportion of neurological conditions, M.E. providing a common example, many people are left with no ongoing care, management or monitoring of their condition, until they deteriorate significantly. The LTCOS presents a real opportunity to highlight the importance of ongoing care and management including end of life care.

    6. Implementation of the LTCOS
    Since 2005, neurological services and outcomes have been driven by the National Service Framework for Long Term Conditions (NSFLTC). By design, the NSFLTC did not have the traditional levers to support implementation, including national monitoring, targets and ring-fenced funding for specific initiatives. As documented by the recent NAO and Public Accounts Committee reports on services for people with neurological conditions, the impact of the NSFLTC on service provision and improving outcomes was limited, characterised by significant variation across the country.

    The NSFLTC represents a vital learning opportunity for the Department of Health and NHS CB and this learning can be applied directly to the LTCOS. We are extremely concerned, however, that implementation of the strategy will be a matter for local determination and will not benefit from the experience of the NSFLTC. We urge the NHS CB to development a robust and adequately resourced implementation strategy, including accountability mechanisms, incentives and national monitoring criteria and call for this requirement to be included in the forthcoming NHS Mandate.

    In the development of both the LTCOS and its implementation strategy, we urge the Department and NHS CB to consider how the LTCOS will work other related strategies, including the forthcoming UK Plan for Rare Diseases and the ‘Fulfilling Potential’ disability strategy, to ensure these strategies are complementary and describe a coherent vision for individuals to whom multiple strategies are relevant.

    * Local adult neurology services for the next decade – Royal College of Physicians and Association of British Neurologists, June 2011

    **Services for people with neurological conditions – National Audit Office, December 2011

    *** Services for people with neurological conditions – National Audit Office, December 2011; Services for people with neurological conditions – Public Accounts Committee, March 2012

  19. Tom Thorpe, Policy Manager, British Geriatrics Society says:

    Comments on each of the goals:

    1. People will be supported to stay healthy and avoid developing a long-term condition, where possible.
    This is a desirable aim. While this is a desirable goal, given the magnitude of the problem (15.4 million), it is a long-term goal. Secondly, ‘avoiding’ may not be possible, but reducing the prevalence of long-term conditions and their consequences may be.

    2. People will have their conditions diagnosed early and quickly.
    While we support the thrust of this but would go further. As a Society we recommend all older people under go a Comprehensive Geriatric Assessment (BGS) to assess their physical, health, social and spiritual needs. This aims to look at their medical issues within their social context to ensure that medical treatment of their condition is a means to an end rather than an end in itself. It is also important that older people are treated on the basis of clinical need not biological age. One advantage of CGA can be the detection of LTCs and the possibility of effective management and a possible reduction in the morbidity that could develop.

    3. Services will be joined up, and based around individuals’ biological, psychological and social needs.
    We agree with this goal. Integrated services based around individuals ensuring smooth transition between care settings is important, especially for those people who have cognitive problems and may be frail. However, integrated services are only a means to an end, not an end in themselves. We need to ensure that services all aim at a common objective to ensure that people are as healthy as possible and supported where possible to live the life they wish in the way that they choose.

    Services also need to account of the specific and different needs of different communities including minorities.

    Services also need to be provided to all people who need them including those in care homes. The BGS’s recent reports Quest for Quality and Failing the Frail suggest that many of the 400,000 older people in care homes have considerable problems accessing the NHS health services they need.

    4. People with long term conditions will be socially included, including succeeding in work and education.
    We agree with this objective. Given most people with long-term conditions are older people tackling ageism among employers, professionals and also the public at large is critically important.

    5. People with long-term conditions will be as independent as possible and in control of their lives (up to and including the end of life).
    We support this goal. One of the key benefits of CGA and what our society has always promoted is for older people with chronic long-term conditions to be as independent within their own homes as possible

    6. People with long term conditions will be supported to stay as well as possible.
    We support this goal. (see response 5)

    Additional goals
    The BGS would like to suggest two other goals for consideration.

    7. People should have, where appropriate, anticipatory and advanced care plans to help make their end of life care comply with their wishes.
    It is possible to predict the events and crises an older person may face with a life limiting conditions such as advanced dementia or cancer but not often when they will occur. To plan for these occasions the BGS recommend that all people, where appropriate, have anticipatory and advanced care plans in place to prepare for these events. These could, for instance, set out where a person may want to die and whether they want to be resuscitated in the case of a cardiac arrest and could prevent an unnecessary and potentially avoidable attendance and admission to hospital. These plans become important especially before people who may have a condition such as dementia that may cause the progressive reduction in cognitive function.

    8. People who may lack capacity through mental or physical impairment must be cared and advocated for within the health and social care system.
    A large number of older people with long-term conditions suffer from conditions which can create significant levels of cognitive impairment such as dementia. People with long term conditions need access to a full range of health and social care professionals but can’t obviously access themselves. Planning needs to ensure that the friends, carers and families of the people affected are given the information and support to make informed decision on behalf of those they care for.

    Action, not words
    The BGS is delighted to respond to this consultation and looks forward to the published document but it is in the implementation of the vision that will make the difference to the people that many of our members meet, treat and care for on a daily basis in their wards and clinics. We look forward to a robust, measurable and comprehensive implementation plan to make this vision a reality to the many millions of people, old and young, who have a long-term condition(s).

    • Barbara says:

      I couldn’t agree more Tom, excellently put. I particularly like your first statement. I have acquired a set of conditions following a head and neck injury – P.O.T.S. (an Autonomic Dysfunction) and Chiari 0 (which causes brain compression) and I also have found out I have a genetic condition called Ehlers Danlos and I suffer bouts of extremely poor short term memory, as do many others I talk to on the various associated Forums, even the young folk. I dread to think what they’ll be like when they are older.

      It would seem that the underlying common factor in these conditions can be mildly raised intracranial pressure (perhaps similar to those who have had a stroke). Recent research shows that simple drug regimes of B vitamins, Diamox (Acetazolamide) and H1 & H2 Antagonists, can be implimented to bring MUCH improvement in the symptoms of short-term memory loss and thereby greatly enhance the lives of these people suffering this terrible disease.

      I know first hand because my elderly aunt has the same underlying genetics as me and has gone off into a ‘world of her own’ following a stroke, which is such a sad shame to witness, as she was a very verbally articulate lady. This didn’t happen immediately, so I know she’s in there somewhere. It’s such a sad shame as between 5-10% of people suffer these underlying conditions and never know they have them. I know that, in these cases, dementia can be much improved if only the right treatments were in place.

  20. Federico Moscogiuri says:

    ARMA welcomes the opportunity to comment on the embryonic long-term conditions ((LTC) strategy.

    While we understand that the LTC strategy will not be condition-specific, it is nonetheless important that it is specific enough to be meaningful, and that it clearly set out clear and robust provisions which effectively address the key requirements for service delivery improvement for all major areas within the very broad family of LTCs. And musculoskeletal disorders (MSDs) make up a very large chunk of LTCs – not considering the many co-morbidities which are also closely associated with MSD, eg depression, heart disease.

    In many ways MSDs are the embodiment of the need for the integrated, person-centred care which lies at the heart of the government’s reform agenda, and which must underpin the need for a long-term conditions strategy. They represent an area of need which offers some of the biggest wins in terms of delivering better, more cost-effective care and improved patient outcomes, and should therefore inform the LTC strategy to a very significant extent.

    MSDs affect 1 in 4 people, many of whom are young and of working age. They are the main cause of physical disability, and account for up to 1 in 3 GP visits, costing the NHS a staggering £5.06 billion in 2011/2012. MSDs were also responsible for up to 10.8 million lost working days in 2008/9. In short, their impact on the NHS, on the economy and on wider society, as well as the individuals themselves, is simply enormous.

    However, MSDs remain largely neglected in the NHS, with no dedicated outcomes strategy, no national clinical lead, few existing indicators and inadequate levels of overall awareness among health professionals, not least GPs.

    A more strategic, coordinated and integrated approach to treating, preventing and managing musculoskeletal conditions which is centred on the needs and wishes of the person living with MSDs is ESSENTIAL if the NHS is to successfully tackle the challenge of an ageing population with increasingly complex care needs – and will lead to greatly improved outcomes, by helping patients remain independent for longer and ensuring that they genuinely receive the care they need and no less, the care they want and no more.

    The LTC strategy must also be fully informed by and clearly reflect the principles of the NHS Constitution.

    In particular, it is important that the LTC address the following:

    1.The link between healthcare with public health, with an emphasis on prevention and early intervention

    The management of MSDs cuts across public health, NHS and social care and makes the case for a long-term conditions strategy. For example, obesity is an important risk factor for osteoarthritis in most joints and data suggests that metabolic as well as mechanical factors mediate the effects of obesity on joints. It is also one of the few risk factors that appear to be important for both initiation and progression of knee osteoarthritis.
    Early intervention is essential to prevent or slow down the progression of MSDs and the associated deterioration of the affected joints, and to better manage the condition. In the case of inflammatory forms of arthritis, early diagnosis and early access to the right drugs can make the difference between potentially bringing the disease into remission and a life of disability and pain. There is abundant evidence which demonstrates, for example, that the first three months since the onset of symptoms are crucial for the successful treatment of rheumatoid arthritis. The LTC strategy must include strong provisions which support effective referral mechanisms and enable early intervention.

    2. Access to treatment, variation and health inequalities

    Persistent – and in some cases, increasing – health inequalities are a serious problem and represent a very significant risk to the NHS, particularly against a backdrop of widespread “efficiency savings” and greater devolution of decision-making to the local level. The LTC must have the reduction of health inequalities as one of its key aims, and clearly protect patients against the risk of postcode lotteries and new restrictions to services or treatment.
    Similarly, insofar as national strategies exist to provide coherence and strategic direction across the entire NHS, one of their key purposes must be to reduce unwarranted variation in service provision. ARMA’s recent audit of musculoskeletal services in England, Joint Delivery?, has uncovered a 13-fold variation in spending between commissioners which cannot be explained by demographics and case mix alone. Many PCTs are commissioning musculoskeletal services without first collecting enough information to make an accurate assessment of the needs of their local population going against existing guidance. Only 38% have identified all long term conditions patients in their area, 37% said that they did not use programme budgeting data to define their resource allocation for certain conditions.

    The King’s Fund report: Variations in Healthcare 2011 and The National Audit office: Services for people with Rheumatoid Arthritis 2009 also highlight the very significant unwarranted variation in musculoskeletal services.

    3. Care planning and support to self-manage

    A key aim of the LTC strategy must be to encourage and incentivise the provision of genuinely holistic, person-centred care, delivered in a joined-up and/or multidisciplinary way. MSDs affect many people in many different ways, but they can be extremely debilitating as well as painful, and often have a very significant impact on a wide range of aspects of people’s lives. In many cases, the care people with MSDs need will be delivered by a range of health professionals in different parts of the NHS, and it is essential that not only is there good communication between the various parts of the system, but that the care which each part delivers forms part of a single “package” tailored to the individual patient’s needs and wishes. The Pennine Musculoskeletal Partnership in Oldham provides an example of a good, scalable model for delivering integrated care across the whole patient pathway for people with MSDs.

    Care planning has a key role to play to improve the integration and personalisation – hence to improve outcomes – of services for people with LTCs. The previous government pledged that every person with an LTC would have a care plan. We are clearly still very far from achieving this, but the LTC strategy provides a perfect opportunity for reaffirming and further articulating this commitment, as it is a very practical measure which is capable of making a very tangible difference to the lives of people with LTCs. There is already evidence to show that outcomes for people with LTCs are consistently better where there is a care plan.

    Supported self-management is also key to a meaningful LTCs strategy. There is abundant evidence that patients who are effectively equipped to self-manage are able to keep their condition under control, are better able to remain independent and productive, achieve a better quality of life and become less reliant on the NHS. Nowhere is this more important than for MSDs: where they are properly equipped to do so, many people with MSDs do successfully manage their condition(s), thereby limiting its impact on their quality of life, their mobility and their ability to remain independent. In this respect, the LTC strategy should recognise the importance of tailored self-management programmes, as opposed to generic models, as these are more likely to meet the specific needs of each group.

    4.Information and choice

    Placing the patient at the heart of decision-making requires that the patient is provided with high-quality, user-friendly information about their treatment options in a timely manner, and receives support to ensure that they understand that information, as necessary. ARMA welcomes the publication of the Information Strategy, and looks forward to participating in further discussions on this issue.

    Increasing patient choice is one of the key principle behind the reforms. While greater choice is in itself a positive thing, it must mean much more than choice of service provider, which for most patients is not nearly as important as choice of treatment, quality of treatment and participation in making shared decisions about their own care. Choice is also only meaningful if it is an informed choice, hence the importance of providing high-quality information tailored to individual needs as a matter of course. For people with MSDs, “choice” must mean choice between undergoing elective surgery or other forms of treatment, including support to self-manage; choice of drugs if one fails; choice in the methods of administering treatment; choice of different sources of information and support, including patient-led organisations, some of which provide a free and confidential helpline service as well as self-management training; and choice in terms of how their treatment should fit around their life.

    5.Patient involvement and shared decision-making

    In line with the above, the LTC strategy must also emphasise the centrality of patient involvement in their care and in decisions which affect them. Together with supported self-management, shared decision making also needs to be properly embedded throughout the care pathways. The use of decision aids has already clearly helped to reduce unnecessary interventions by helping to ensure that patients are not only given a choice about their care, but that they are empowered to make an informed choice based on their own needs and preferences. The LTC strategy must include provisions for embedding shared decision-making at the local level, with clear and robust guidance.

    6. The link between healthcare, social care and welfare support

    If it is to successfully set out and champion an integrated, holistic approach to care for people with LTCs, the LTC strategy must also at the very least take full account of the linkages and interfaces between healthcare, social care and welfare support, as many people with LTCs, not least people with MSDs, have needs which cut across all three, and these need to be addressed holistically. Systematic care planning will go a long way to helping to do this. However, many people with LTCs will also require support to help understand, navigate and where necessary coordinate their care across healthcare and social care in particular. The LTC should recognise the need for this support, and articulate how this “care coordination” can or should be delivered, based on existing models of good practice.

    Commissioners also need to be incentivised to work with providers to design new multidisciplinary team working, with clear arrangements for identifying, risk profiling and case managing their local populations. The ONEL project in Barking and Dagenham is an example of a joint health and social care project aimed at meeting the needs of and maximising the quality of life for people with LTCs by encouraging commissioners to identify local solutions tailored to local needs.

    There is also the reality that many people with MSDs are significantly reliant on welfare support. In considering how best to meet the overall needs of people with LTCs, the government must consider the profound impact that the current cuts and increasing barriers towards claiming disability benefits will have on the mental as well as physical health of many people with LTCs, and their livelihoods generally.


    The LTC strategy must be a robust document with clear and robust indicators for measuring success. Importantly, it must not be so generic or top-line as to be regarded as a fundamentally aspirational or well-meaning but essentially unimportant or even irrelevant document. It must have” teeth”, and accountability for its delivery must be both clearly articulated and widely shared, across CCGs as well as Local Authorities and LHWBBs, in addition to the DH.

    • Siobhain McCurrach says:

      Nice one Federico.
      Thanks for flying the flag for MSDs. Shall add in a short piece just to have AC on the map for this consultation. As always – cutting it fine with my deadlines!

  21. Barbara Parsons says:

    The Pharmaceutical Services Negotiating Committee (PSNC) welcomes the opportunity to contribute to the consultation on the cross Government Long Term Conditions outcomes strategy, and has already contributed to the two day accelerated strategy event held in 14th to 15th March 2012 which provided the main cross cutting themes.

    PSNC promotes and supports the interests of all NHS community pharmacies in England. We are recognised by the Secretary of State for Health as the body that represents NHS pharmacy contractors. We work closely with Local Pharmaceutical Committees to support their role as the local NHS representative organisations.

    There are over 11,000 community pharmacies in England and their convenient locations where people live, work and shop, and their extended opening hours make them the public’s most accessible point of contact for health services. Accordingly, community pharmacy is better able to reach all members of the community and make it easier for certain groups to choose to access services locally.

    Community pharmacy contributes to the creation of positive outcomes and significant savings in health and social care through:
    • a focus on medicines optimisation, which supports people with LTCs;
    • supporting wellbeing, the prevention of avoidable diseases and the provision of public health services, from self-care, through prevention to minimising the impact of a disease; and
    • supporting independent living.

    These contributions can and should be further developed over time.

    Community pharmacists and their teams see people who are well in addition to those who are ill and are readily accessible to ‘hard to reach’ groups, unlike most other healthcare professionals. They are therefore well positioned to provide advice, including self-care, and diagnostic services which aim to prevent, identify or delay the onset of LTCs. Currently preventative measures available in community pharmacies, either through the national NHS pharmacy contract or locally commissioned by PCTs, include public health campaigns, stop smoking/quit kits, NHS Health checks, cancer screening/awareness, supply of Healthy Start vitamins, vaccination (including flu, hepatitis and HPV), weight management, alcohol screening and brief interventions, and COPD screening.

    Under the national contract, all pharmacies pro-actively participate in national/local campaigns, to promote public health messages and provide opportunistic healthy lifestyle advice and public health advice to patients receiving prescriptions who appear to:
    • have diabetes; or
    • be at risk of coronary heart disease, especially those with high blood pressure; or
    • who smoke; or
    • are overweight.
    The majority of services commissioned locally from community pharmacy are public health services and ‘Healthy living pharmacy’ pathfinder sites are piloting a new model in which a range of public health services are commissioned.

    Most people with existing long term conditions take medicines and pharmacists can assist patients to improve the management and thus the outcomes of LTCs by helping them make the most of their medicines. Non-adherence to medicines in patients with LTCs is a major challenge which can seriously affect the progression of an individual’s disease, leading to human and societal costs, including unplanned hospital admissions.

    The NHS community pharmacy contract encourages pharmacists to provide support to people with LTCs, including the repeat dispensing service where a pharmacy can manage a patient’s prescription medicines for up to one year.

    The NHS New Medicine Service (NMS) was introduced in 2011 to allow community pharmacists to provide extra support to people with LTCs when they are prescribed a new medicine to treat their condition. The aims of the service are:
    • to improve patient adherence, generally leading to better health outcomes;
    • to increase patient engagement with their condition and medicines;
    • to support patients in making decisions about their treatment and self-management;
    • to reduce medicines wastage;
    • to reduce hospital admissions due to adverse events from medicines;
    • to support improved pharmacovigilance through increased Yellow Card reporting of adverse reactions to medicines by pharmacists and patients.

    Community pharmacies also provide the NHS Medicines Use Reviews (MUR), which is a structured adherence centred review that aims to help patients to manage their medicines more effectively. MURs focus on the patient’s use of medicines and aim to:
    • improve patients’ understanding of their medicines;
    • highlight problematic side effects and propose solutions where appropriate;
    • improve adherence; and
    • reduce medicines wastage, usually by encouraging the patient only to order the medicines they require.

    From October 2011 at least 50% of all MURs undertaken by each pharmacy in each year must be on patients within the three agreed national target groups, which includes patients with LTCs:
    • patients taking high risk medicines;
    • patients recently discharged from hospital who had changes made to their medicines while they were in hospital; and
    • patients with respiratory disease (particularly asthma and COPD).

    Other ways community pharmacies can assist in the management of LTCs and ensuring progression is delayed for as long as possible include:
    • Anticoagulant clinics;
    • Point of care testing;
    • Falls prevention interventions;
    • Stop smoking services;
    • NHS Health Checks.
    Palliative care services are also provided through some community pharmacy to assist with the end of life.

    Keeping people with LTCs living independently in their own homes for as long as possible is an important aim for individuals and the NHS. Community pharmacies support independent living by providing medicines in monitored dosage systems (dosette boxes), carrying out domiciliary MURs, and delivering medicines to patients’ homes. Many pharmacies also provide services to care homes, supporting optimal use of medicines by people living in care homes and minimising waste.

    What community pharmacy could do in the future?
    Our aims and aspirations for community pharmacies are that they will offer support to our communities, helping people to optimise use of medicines to support their health and care for acute and long-term conditions, and providing individualised information, advice and assistance to support the public’s health and healthy living.
    • All pharmacies will provide a cost-effective and high quality range of services to their patients, encouraged by funding arrangements that motivate service provision, reward positive patient outcomes and offer sustainability to contractors;
    • Pharmacies will be fully integrated into provision of primary care and public health services, and will have a substantial and acknowledged role in the delivery of accessible care at the heart of their community;
    • Pharmacies will be able to deliver a wide range of NHS services to support their customers and patients, and be able to offer them services on equal terms to other primary care providers;
    • Patients will be confident that when they access services from a pharmacy, the pharmacist and other members of the pharmacy team will have the skills and resources necessary to deliver high quality services. Effective communications will ensure seamless integration with other NHS care providers.
    • In some cases arrangements for provision of pharmacy services may include patient registration, but all patients will have a free and unfettered choice of pharmacy.

    We believe that community pharmacy services, such as NMS and MURs, should be better integrated into care pathways in order to complement care provided by other healthcare providers and to allow enhanced partnership working. Achieving this aim requires further effort on the part of community pharmacy, but it also needs willing partners in local and national NHS and social care commissioning organisations.

    In the future, the NMS and MUR services could form the basis for the development of a comprehensive medicines optimisation service offered to all patients with LTCs.

    We are also keen to develop a model that could allow community pharmacists, working in partnership with GPs and their teams, to take on more of the management of patients with LTCs, for example asthma; this would be particularly appropriate in conditions which are largely managed via medication. Transfer of such day to day care and support for the management of some LTCs to the community pharmacy could provide a more convenient service to patients and importantly increase capacity in general practice to allow GPs to undertake more complex LTC management that is currently undertaken by secondary care.

    And what do we need to make it all happen?
    The majority of the responses to this consultation appear to be from individuals and patient groups/charities and have a similar theme – asking for people to be able to manage their conditions – and their lives – better.

    Development and commissioning of truly integrated services requires effective national and local facilitation of discussions by NHS and social care commissioners; the government should encourage this behaviour by national and local commissioners.

    Provision of integrated care also requires improved sharing of information between healthcare providers; allowing patients greater control over the use of their health information should be encouraged as a way of facilitating appropriate information sharing in the patient’s best interests.

    Development of the national NHS community pharmacy contract is the most effective way to support an increased role for community pharmacy, as it avoids inconsistent commissioning at a local level and creates an environment which gives community pharmacy owners confidence to invest in the development of pharmacy services for the long-term.

    Government leadership is required to support the development of real outcome indicators for the management of LTCs which allow the contribution of the range of healthcare providers that provide care across a patient care pathway.

  22. Jane G says:

    Children and adults in tertiary referral suffer uncoordinated service in specialist clinics in different hospitals without shared notes or communication between specialists and any local co-care, should it be available. No one ‘manages the case’, puts the signs together, and investigates an underlying disorder.

    For 4 years, my daughter has been seen in 7 hospitals without shared notes – Bucks PCT, Oxford Hospitals, Great Ormond Street, and Moorfields. The solution has been for me (parent) to request medical records and imaging from each hospital, sometimes with legal application and hefty payment, and to make second copies to give to each other hospital medical record for the child. I also carry a complete set of notes and letters including MRI disks to consultations in a rucksack.

    Each doctor asks again for a fast verbal history and ‘what did x think?’ I have to know the long history very accurately, including data, because this dictates decisions on prescribing long-term management drugs including steroids and immunomodulators. Where the information is insufficient, the child is referred for the same tests again in the new hospital and this includes duplicate CT scans which should be kept to a minimum.

    As an example: we are managing chronic eye + skin inflammation + intracranial hypertension secondary to tetracycline now chronic + signs of joint discomfort.

    There is no coordination or investigation of a systemic inflammatory disorder, and confusion between providers as to who should be doing this. Each specialism hopes the other will investigate and the patient falls between the gaps. Each specialism manages their particular part of the anatomy only, sometimes with hard-hitting treatments, without investigating the systemic cause. It could be that invidual signs are small but, if put together, show systemic disease which, when treated, alleviates these symptoms eg thyroid.

    The GP service has little idea where to refer for investigation for complex conditions, especially out of PCT or into tertiary referral (GOS rarely accepts GP referral). GPs are not comfortable and knowledgeable in managing and prescribing for chronic systemic conditions or considering differential diagnoses. GOS and Oxford Hospitals have confirmed that there is no paediatrician management and overview available there.

    The solution has been to research symptoms on the internet, and self-refer to consultants in private practice and then be admitted into their NHS specialist paediatric clinics.

    There is little communication between specialist clinics in tertiary referral hospitals, and little ‘co-care’ with local hospitals. Astonishingly, eg, the front and back of the eye can rarely be treated the same day or even in the same hospital (eg Moorfields for anterior segment + Barts & London for neuro-ophthalmology). Local eg optometry service co-care is not available even in hospitals ‘if they prescribe it, they should monitor it’. Communication is based entirely on consultants’ letters. 2m delays in getting these typed is not unusual, including letters to GPs about drug prescriptions which are needed immediately.

    Often a hospital prescribes without giving side-effect information and there is no testing either at the hospital or GP, either straight after commencement or regular ongoing. Maybe because the GP assumes the hospital is managing the case, and the hospital clinic assumes the GP is doing it.

    Local paediatricians are not comfortable taking responsibility for overall management of complex conditions in different tertiary referral hospital clinics ‘it’s too specialist’ ‘we cannot manage the drug doses’.

    Independent eye service providers do not want paediatric licences. Chronic disease in paediatric ophthalmology is massively underfunded, not being an NHS target like elderly eye diseases, but also being more high risk and difficult. Childrens’ developing eyes respond differently to treatments and drugs than adults.

    Lack of referral and investigation for chronic long-term systemic inflammatory disease is the norm for adults eg lupus, Sjogrens, erythromyalgia, Lyme. Many patients worsen significantly, still undiagnosed, because symptoms are not recognised and there is no obvious referral pathway. Many adults have to self-refer to regional centres for diagnosis by seeking out specialists themselves or through patient forums.

    GPs do not recognise, or know where to refer, systemic inflammatory disease or metabolic disorders, and are sceptical or refuse, even when rheumatology or immunology testing is suggested. GPs do not test for eg nutritional deficiencies suggesting metabolic causes for skin or joint signs. An example would be a ‘rosacea with eye involvement’ diagnosis that turned out to be erythromyalgia or lupus.

    GP comments to our child have included ‘I don’t have time to read all these letters, you only get 5 minutes’, ‘if you get headaches take paracetamol’ (intracranial hypertension), ‘you’ll know in 3 days, take cocodamol’ (severe IIH reaction to tetracycline with vision loss and collapse). After 7 GPs, the problem has been lack of knowledge.

    Chronic eye inflammation is prioritised low in the overloaded clinics, and patients, including children, are expected to self-manage on eg steroids without frequent eye pressure checks. Inflammation flareups and pain are not always triaged as serious, despite the danger of long-term damage. Glaucoma, cataract monitoring and macular degeneration are better served as a recognised NHS target for community support. Misdiagnosis of chronic eye inflammation in local eye clinics has been serious, eg allergy and virus (it was severe dry eye inflammation due to meibomian gland dysfunction with neovascularisation and lack of tear film). Too many children’s eyes are opacifying before the condition is diagnosed (Dart, J, Moorfields).

    Optometrists cannot support or diagnose patients with long-term eye conditions because training in eye disease through the RCOptom is insufficient. They are not yet fit to prescribe because they are not familiar with differential diagnoses and systemic disease. Diagnosis of inflammatory eye disease depends often on microscopic signs and experience – eg decisions on viral or fungal keratitis need to be made only after swab results.

    Paediatric, there is no help with travel costs, even when children are in specialist services due to lack of local provision. Bizarrely, once a child is 16 they can claim full reimbursement for themselves + carer. This is a terrible financial burden when a parent may be a full-time carer or struggling to balance this with paid work. Appointments are not flexible because of waiting lists ‘do you want this appointment or not?’ ‘first available after that is August, take or leave it’.

    I am concerned that people with long-term inflammatory disorders are not only unsupported in a coordinated way, but not referred for diagnosis even when it is available. There can be no self-management and self-medication without coordinated local monitoring and co-care, even when they are successfully managed by specialist hospital departments which they travel far to.

    I am hoping that our difficult experience is useful to policymakers and:
    - knowledge about conditions can be improved in the GP service
    - communication can be improved between hospital departments
    - complete medical records can be shared online

    We are dreading transition from paediatric to adult service with chronic eye inflammation. These patients are at the bottom of the ‘fixable’ pile and there is little regular provision (see Dryeyezone and Uveitis support forum).

  23. Emily Morton says:

    1. Introduction

    This document is in response to the Department for Health’s call for comments on what should be in a cross-government long term conditions (LTC) strategy. It also includes as an appendix some case studies highlighting concerns that have been voiced by disabled people in Sheffield around current provision for people with long term conditions.

    The response has been jointly written by Sheffield Local Involvement Network (LINk) and Partners for Inclusion (PfI) – the Sheffield Partnership Board for people with physical, sensory and cognitive impairments. It includes the views of disabled people and our partner organisations.

    Sheffield LINk and PfI welcome the opportunity to comment on the contents of the Government’s new LTC strategy but are disappointed that there is no formal consultation, which would have provided a broader range of experiences, views and comments. This strategy has the potential to improve opportunities and services for people with long term conditions but in order to do this it must build on existing strategies, recent consultations and good practice.

    2. The strategy

    Sheffield LINk and PfI are very pleased that the government recognises the importance of the social model of disability but are concerned that this philosophy does not underpin the practical implementation of policies. There are a number of national strategies and policies which state the Government’s commitment to the social model of disability and its intention to improve and uphold the rights of people with long term conditions. The development and implementation of a LTC strategy must be linked to these.

    Government policies include:

    Fulfilling Potential’ Discussion Document (2011)
    • States that the new cross-government disability strategy should be based on the social model of disability and should build on existing protected rights and entitlements, and promote the principles of independent living.

    UN Convention on the rights of Disabled People (2011)
    • Purpose of the Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

    Equality Act (2010)
    • Aims to protect disabled people and prevent disability discrimination.

    National Service Framework for Long Term Conditions (2005)
    • Aims to transform the way health and social care services support people with long-term neurological conditions to live as independently as possible

    3. What disabled people in Sheffield feel is currently missing for people with a LTC

    Consultation carried out in Sheffield with disabled people Promoting independence (2011) identified a number of influences that enable disabled people to be independent. They emphasised how much the physical environment, both inside and out, and awareness and attitudes of nondisabled people towards disability prevented them from achieving independence and their human rights.

    Dismantling barriers preventing independence included:
    • improving the physical environment including the state of roads and pavements
    • improving accessibility to shops and public buildings
    • providing more accessible transport
    • increasing the provision of adapted or purpose built housing
    • enhancing understanding of people’s communication needs
    • improving ways of sharing information within and between organisations
    • Challenging attitudes towards disability by increasing disability awareness and disability equality training

    Other consultation, more specifically related to service delivery has highlighted the need for:
    • A named specialist health professional who co-ordinates care and advice (this is being addressed in Sheffield through the LTC case management system – see below)
    • 24 hour community urgent response service to avoid unnecessary use of A&E and hospital admissions
    • Equity in the provision of free equipment and adaptations across the country. There are significant cost-savings to be made in prevention through the provision of appropriate equipment.
    • Access to appropriate interventions and support as an individual’s conditions progress. This should include essential, specialist services delivered by a range of professionals from primary, secondary and tertiary providers working within a managed clinical network.
    • A review of LTCs that are eligible for free prescriptions

    4. Local practice in Sheffield

    Individuals with a long term condition in Sheffield have identified the lack of joined up services and integrated care as a major barrier to delivering services that meet the needs of the individual. A number of initiatives have been developed by NHS Health Services and the Local Authority in order to begin to improve joined up working and the provision of integrated services in the City recognising that there are major gaps.

    Long Term Neurological Conditions (LTNC) Case Management Service (CMS)
    This is a new community team dedicated to working closely with service users, service providers and other agencies in Sheffield to ensure people with LTNC have timely and appropriate professional support. The team works with the individual and any service provider, whether health or social care, to facilitate change and help provide a seamless service.

    The aim of the team is to:
    • Provide a single point of contact
    • Set up a register of all patients in Sheffield with a long term neurological condition
    • Ensure that a care plan for immediate and future needs is in place, so that it is a system of care focusing on ‘transitions’ rather than focusing on discharge
    • Assist in the co-ordination of neurological conditions which are defined as complex due to the amount of services involved, the diagnosis, and social circumstances.

    Initial feedback suggests that the case management service is both welcomed and valued by service users.

    Integration of community health services
    Sheffield has integrated its community health services, including nursing, health visiting and physiotherapy. This aims to improve coordination and communication between hospital, community, mental health and social care services, resulting in patients experiencing more responsive and seamless care.

    Clinical Commissioning Group and Health & Wellbeing Board
    The shadow Clinical Commissioning Group and Health and Wellbeing Board in Sheffield are exploring how services can be more person-centered and designed around the individual with a move towards joint commissioning of services, and public health functions being transferred to the local authority. This will include a Joint Health and Wellbeing Strategy, based on the Joint Strategic Needs Assessment (JSNA).

    5. Potential way forward
    Overall we believe that the LTC strategy is an opportunity to build on work previously carried out, to ensure the implementation of existing recommendations such as implementation of the NSF national minimum data set, and to look at good practice around the country such as the LTC Case Management Service in Sheffield.

    In order to tackle the barriers to joined-up working and integrated care Sheffield LINk and PfI would like to propose that the strategy should focus on developing a single seamless service for people with a LTC by:
    • Providing a clear definition of what is meant by a LTC
    • Developing a single funding stream, for people with LTCs, that is neither health or social care defined
    • Building on the LTC Case Management Service to ensure that anyone diagnosed with a LTC is automatically referred to the Case Management Service

    Appendix 1.
    Joined up working and integration of care

    One of the Shared Goals of the Long Term Conditions Strategy is that “Services will be joined up, and based around individuals’ biological, psychological and social needs”. We welcome this goal which is a theme that has emerged throughout discussions with disabled people and partner organisations.

    This appendix includes a collection of personal case studies which highlight the effect of a lack of joint working on the provision of services for people with a LTC. They suggest that the breakdown of joined up working happens because of three main issues:
    • Fragmentation/lack of information and communication/lack of overall joined up vision for health and social care
    • Relationship between Continuing health care and social care and the assessment process for continuing healthcare
    • Effect of cuts to LA funding on adult social care – eg initial access to services with charging increases
    The NHS Future Forum report (2011) talks about the need for integrated care, stating that “formal structures are all too often presented as an excuse for fragmented care. The reality is that the provision of integrated services around the needs of patients occurs when the right values and behaviours are allowed to prevail and there is the will to do something different. We need to move beyond arguing for integration to making it happen, whilst exploring the barriers”.

    Case Studies
    The following case studies have been gathered by Sheffield LINks from individual LINks members and partner organisations in the City. They highlight how a lack of joined up working and failures of continuing health care has had an impact on individual’s everyday lives.

    Case Study 1.
    D in his late 70s with dementia. Prior to our involvement, the client was not managing at home and this led to him being admitted to hospital. Following this admission it was decided that the client needed to be cared for within a nursing home. The client was found to lack capacity in regards to this decision and this was deemed to be within his best interest. He was discharged to a nursing home. There was a failure at this time to refer the client to the hospital Social Workers who could have sorted out non-medical affairs, such as benefits and closing his accommodation down.
    When this problem came to light, the advocate endeavoured to find out who was responsible with the aim of pushing them to take the appropriate action and after making enquiries discovered that no one was authorised to sort out his affairs. The advocate raised the matter PCT Continuing Care Funding Team, who were given the task of trying to establish who would be responsible for sorting out the clients affairs. Months passed by as senior managers from both the Health Authority and Social Services disagreed as to who should take responsibility for sorting out the clients affairs, each believing it is to be the responsibility of the other.
    Throughout this time the advocate chased up the manager from the Continuing Care Team, asking for progress reports and reminded them of the impact on the client. The client had no money and was unable to fully understand the situation, regularly getting distressed about having no money, believing that he needed to buy food. The advocate alerted the Continuing Care Team manager to the impact of this matter on the client’s quality of his life as he was unable to pay for things that would enhance this. 6 months later the matter was still unresolved.

    Case Study 2.
    P was admitted to hospital as she was not managing at home. Following this admission the client was diagnosed with Dementia and it was decided that the client needed to be cared for within an EMI nursing home. The client was found to lack capacity in regards to this decision and this was deemed to be within her best interests. The client had no family or friends. She was discharged from hospital without any of her personal belongings or money. She did not have any clothes other than what she was wearing when admitted to hospital.
    The professionals were in dispute as to who had responsibility to sort this out as the hospital social worker had now stopped working with her as she had been discharged. Continuing Healthcare funding (PCT) had been put into place so a new social worker was not appointed. The PCT disputed sorting out the client’s affairs was their role and insisted it was a social worker’s role, Social Services refused to take on the case as the client was healthcare funded. The advocate reported the issue to management at Social Services but in the meantime P was expected to settle into her new accommodation without any access to her own personal belongings or money.

    Case Study 3.
    M was not managing at home and this led to him being admitted to hospital where he was given a diagnosis of Dementia. Following this admission it was decided that the client needed to be cared for within a nursing home. The client was found to lack capacity in regards to this decision and this was deemed to be within his best interest. M was discharged from hospital into an EMI nursing home. His care needs were assessed and it was agreed that his care would be funded by Continuing Healthcare (PCT). The social worker who had worked with M in the community stopped working with him from this point. M was no longer able to manage his finances and there were no appropriate family members to take on this role. The care home took over the role as appointee for M’s DWP’s state pension enabling him to have some access to money. M still had a bank account and a private pension but was unable to access either of these as neither PCT nor Social Services were prepared to take responsibility for taking this to the Court of Protection on his behalf. M was been left without access to his savings and his income could not be assessed for any other entitlements such as Pension Credit. Unfortunately, the client passed away before the matter was resolved.

    Case Study 4.
    LS is 55 and has Korsakoff’s Syndrome he needed to leave hospital and move from an acute hospital bed to an assessment bed but the only assessment bed available for this client was in an elderly unit as there is no age appropriate accommodation for this client group in Sheffield.
    Beth was diagnosed as having a progressive neurological condition (multiple sclerosis) in 1985. Over time Beth’s support workers started carrying out tasks that would more usually be carried out by NHS workers. So, in 2011 a social worker (Kate) carried out a review of Beth’s care package and was advised to apply again for funding from Continuing HealthCare.
    An assessment was carried out on 31 May 2011 by a health assessor Sandra using the Decision Support Tool (DST) and it was recommended that Beth’s support package should now be completely funded by Continuing HealthCare, to take effect immediately. The DST and the recommendation were forwarded to the PCT assessment panel for verification.
    At this time Beth had been diagnosed as having a large bladder stone and was admitted to hospital. When Beth was discharged from hospital she arranged for Sandra to visit her on 4 August to discuss the care package that had been recommended should be fully funded by Continuing HealthCare. The direct payments financial team based in Adult Social Care and Support had been informed of the decision and Beth received a payment to refund contributions that had been made after 31 May and no further contributions were deducted from her direct payment.
    On 4 August, the day of the appointment, Sandra was informed by a leading NHS assessor that nobody from the NHS panel had looked at the DST. She was told that her recommendation could not be accepted because the assessment on 31 May had been made at a time of medical crisis. She was told that she must repeat the assessment. Sandra therefore agreed to resubmit the DST to the panel. Nothing seemed to happen.
    A new health assessor Carol made a further assessment on 21 September 2011 and evidence would be collected in relation to the assessment and a further appointment set for the 7 October 2011. On the day of the appointment it was cancelled because the requests for evidence had not been completed. A further appointment was arranged for 18 October 2011 but shortly before the assessor was due to arrive Beth received a telephone call informing her that she had been delayed and would be in touch later in the day.
    Beth received no further contact either by telephone, e-mail or post from the assessor or her NHS department. By February 2012 the situation remains the same. Beth is still receiving a direct payment from Adult Social Care and Support and no contribution is collected. Beth has no social worker and does not know whether or not her package is funded by the NHS. She does not know who has responsibility for completing an annual review or who she should contact if the package needs changing.

    Case Study 5.
    Carers approach advocates asking what ‘continuing health care’ means and what the process is. They are confused about the terminology, puzzled by the stages of assessment and seek information on why there are the delays. Information given by professionals can sometimes be contradictory – The Carers Centre was told by a carer that she had learned initially from the residential care home where her father was that she should ask for an assessment for support for funding from the LA after savings had dropped below £23k (June) . The LA requested an assessment for health care funding (August). The decision that the person was eligible was made in early October to take effect from November but backdated to September.
    However, the letter sent to the carer gave a start date of December, backdated to July. (As a result of intervention from the Carers Centre the backdating was amended to June.)
    The carer had no proper explanation of process and information wasn’t sent promptly. Information was only provided as a result of persistence by the carer and Carers Centre and persistence was needed to ensure the correct payments were made and backdating properly paid.

    Case Study 6.
    A carer has been in contact with the Carers Centre for a year (beginning in January), seeking support in establishing responsibility for the funding of his wife’s care in a nursing home. The care had been funded by the family with the nursing element paid by Health. A social worker has been involved because of savings falling. As part of the assessment to establish if the LA should be responsible for funding and in dealing with complications because of an overpayment of Attendance Allowance, the need for an assessment for CHC was raised .
    The carer was informed in May that this was being checked and it was reported that there was ‘a good chance of getting continuing health care funding’ by the social worker. No record of the check could later be found and the actual assessment took place in November with a decision made in December that he was not eligible.
    Whilst the bulk of the work undertaken in this case linked to financial issues outside CHC, the question of whether or not the person was eligible for CHC has been an issue throughout. The carer also did not understand about the funding for nursing care being given by Health when the person was self-funding. There were delays in the assessment for health funding which lasted nearly 11 months and information was given by a statutory professional that the person would be eligible when in fact she was not. This delay and lack of clarity has contributed greatly to the carer’s stress and health problems (which is an issue regardless of whether funding is available.

    Case Study 7.
    A carer contacted the Carers Centre extremely distressed because he had been informed informally that the existing careworkers for his mother, funded by CHC, were not going to be able to care for her anymore despite this being a longstanding arrangement with complete satisfaction of the cared for person, her family and the provider. The care was to be transferred to another agency. The carer was told he would receive a letter about this and was not able to challenge or pursue his concerns as he wanted to protect the confidentiality of the person who had shared the information.
    The carer was contacted nearly a fortnight later by phone, with information that the change of provider was to happen a fortnight later. The explanatory letter was received after that and the care provider has been subsequently changed.
    The initial care package had taken considerable effort to establish, but in this change the family appears to have been completely disregarded. The care workers knew two weeks before the family that the care was to change and there should at least have been some discussion with the carer as to what was going to happen as part of the formal care management .
    This change of provider was not something which had to be arranged suddenly (eg because of provider failure), so must have been planned for some time. The relationship between the family and care workers in a case such as this, when detailed care is required, is very important, but was terminated very suddenly with a very short handover period.

  24. Angela Egdell says:

    I work for St Oswalds Hospice in Newcastle upon Tyne

    We provide services for Life limited Children, Young Adults and Adults

    We also provide a specialist Lymphoedema service.

    Lymphoedema is a chronic condition where the patients arm or leg swells as a result of the lymphatic drainage being damaged by cancer, treatment for cancer or as a benign condition. Treatment is focussed around reduction in limb volume and improvement in limb shape alongside increased function and reduction of infection.

    Long term if untreated lymphoedma causes much personal suffering and also causes increased medical intervention due to infections and the consequences of reduced mobility. treatent is often needed by either community nursing or via hospital admission.

    Early treatment can control the condition and prevent these costly interventions.

    Consideration should be given to increasing availabilty of lymphoedema care to all patients who would benifit and the develoopement of a tariff to cover the costs of that treatment

  25. Nick Meade says:

    Joined up services
    It is our experience at Genetic Alliance UK that patients and families living with long term conditions are frequently frustrated by having to repeat themselves to new healthcare providers, care providers or services providers. A common currency of information with common definitions, like a patient passport which applies in education and social care scenarios, would allow service providers to take the verdict of their equivalent colleagues, without reassessing the patient in every new situtation.

    Expert patients
    We have found that patients can frequently be more expert in their condition than local healthcare providers, particularly in the area of rare genetic conditions. The degree of success that patients have in the local, non-specialised healthcare arena is usually a function of how cooperative their local healthcare professionals are. For every case where a healthcare professional is happy to sit down and listen to an expert patient explain the relevant facts about their condition, we hear a story of a healthcare professional ignoring their patient’s protest that their condition is not suitable for a particular therapy. More heathcare professionals need to be aware that patients can be the best source of information about their condition.

    Rare disease plan
    Many rare conditions are chronic, long term conditions. It is important that the long term conditions strategy coordinates well with the UK rare disease plan that was consulted on earlier this year. Rare Disease UK has written a report “Improving Lives…” which details the campaign’s views in this area and is available on their website.

    Nick Meade
    Policy Analyst
    Genetic Alliance UK

  26. Marilyn Ekers says:

    1. As someone living with MS I would like to see the 11 quality requirements (QRs) of the National Service Framework for Long-term Conditions implemented. The NSF would be a good starting point for a LTC strategy.

    The NSF developed the QRs to transform the way health and social care services support people with long-term neurological conditions to live as independently as possible.

    It addresses the issues raised in this consultation.

    Whilst the NSF applies to health and social care services, it recognised that, “people with long-term neurological conditions also need support with a range of issues including transport, housing, employment, education, benefits and pensions. For this reason, arrangements for working together with a full range of other agencies are vital to support people to live independently and to deliver key elements of the NSF.”

    The QRs were based on research and expert evidence specific to neurological conditions, including what people with long-term neurological conditions said about their experiences and needs.
    However, the NSF recognised that much of it can apply to anyone living with a long-term condition, including:
    • prompt diagnosis;
    • providing information and support;
    • person-centred care and choice;
    • care planning and integrated service provision involving different agencies;
    • planning and liaison when people make transitions between services;
    • supporting self care and considering health promotion needs;
    • rehabilitation and support in the community and vocational rehabilitation;
    • providing equipment and adapted accommodation;
    • equitable assessment for fully funded NHS continuing care and adult social care;
    • palliative care for people who have conditions other than cancer;
    • supporting carers;
    • managing long-term conditions effectively when in hospital (or other settings) for other problems.

    The NSF says, “Implementing this NSF by 2015 will improve services significantly, not just for those with neurological conditions but also for many other people living with long-term conditions”.

    2. The Long-Term Neurological Conditions Research Initiative, following the NSF, provides a wealth of information on the nature, quality and outcomes of care for people with Long-Term Neurological Conditions (LTNCs) in England.
    The ten studies set out “to provide a robust evidence-base to inform all those working to improve the quality of services and care”.

    The research aims were to help understanding of:

    ■ the nature of long term neurological conditions and how care services support people living with them.
    ■ the day-to-day experience of adults living with long term neurological conditions.

    The programme of research was set up in partnership with people living with neurological conditions and people or organisations who support them.

    The findings and recommendations are translatable to a wider LTC agenda.

    A Life More Ordinary – Findings from an independent Overview Report for the Department of Health (http://www.ltnc.org.uk) presents the main findings, themes and trends from all the studies in the initiative and draws on these to make recommendations about how future services should be designed.

    Some of the findings were that:

    The main feature of the overall service picture is one of the uneven, patchy nature of current service levels across the whole pathway for people with neurological conditions.

    The experience of feeling in control and having choice in care was variable, with a majority saying they did not have a personalised care plan and support to self-manage.

    On average, caring activities were reported to take up over 80 hours a week, but despite this the carer’s role was often not recognised, with few receiving assessments in their own right.

    Overall, a few aspects of service delivery, including treatment and early rehabilitation, appear satisfactory while other areas, such as continuity and coordination of ongoing care, family support, provision of information, vocational rehabilitation and end of life care, emerge as much less so. There are specialist neurological services demonstrating pockets of excellence, but these are not universally available to all who need them.

  27. Jacqui Pollock says:

    Who we are
    The Expert Patients Programme Community Interest Company (EPP CIC) is the market leader driving the development and delivery of self-management across all channels.
    Our vision is to create a society where individuals have the skills and support to manage their health and to live life to their full potential. Our mission is to establish the principles of self-management as a recognised public health measure delivered in a cost-effective, sustainable way.
    The 2006 White Paper ‘Our health, our care, our say: a new direction for community services’ made a commitment to establish a Community Interest Company (CIC) to market and deliver the Expert Patients Programme (EPP). This was championed by the voluntary sector, and introduced by the Department of Health in 2002.
    In 2007 EPP CIC was set up and became the first national CIC. The company is committed to designing and delivering courses to meet a diverse range of people’s needs, including those in marginalised groups.

    What we do
    EPP CIC provides self-management programmes to improve the lives of individuals and their carers who live with one or more long-term condition.
    Self-management programmes engage patients to manage their conditions more effectively, thereby reducing health costs.
    We work with patients, healthcare providers, clinicians, businesses and other partner organisations to embed self-management across all social sectors and address health inequalities.
    To meet the needs of communities, we work closely with all NHS structures to ensure we can respond to the changes in the health landscape and improve patient outcomes.

    We also provide training, quality assurance and consultative services for other organisations delivering self-management/self care programmes.

    Why self-management?

    Professor Kate Lorig, Stanford University California (1993), emphasised that self-management is not an alternative to medical care and is aimed at helping the person become an active partner with health care providers. The Expert Patients Programme (EPP), as cited by the NHS UK, (2001, p.22), is a ‘formalised patient education programme aimed at providing the patient with the information and skills necessary to manage their condition within the parameters of the medical regime’. It is important to add that the aim of EPP courses is to develop the confidence to self-manage and to motivate the patient to use their own skills. The EPP also encourages patients to work in partnership with their health care professional and supports them to gain the necessary skills to manage general health and well being on a day to day basis. The 2006, White Paper, Our Health, Our Care, Our Say, recognised that services need to be integrated, and tailored to the individuals needs. This supports the ideal of shared-decision making and ‘no decision without me’. (Cited, DH, 2010, p. 3)

    Professor Kate Lorig, (1993, p.11) defines self-management as ‘learning and practising skills necessary to carry on an active and emotionally satisfying life in the face of a chronic condition’. As referred to by Barlow, Wright, Sheasby, Turner, & Hainsworth, (2002, p.178) ‘self management refers to the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition. Efficacious self-management encompasses the ability to monitor one’s conditions and to effect the cognitive, behavioural and emotional responses necessary to maintain a satisfactory quality of life. Thus, a dynamic and continuous process of self-regulation is established’.

    Making a difference
    EPP CIC plays a key role in raising the profile and engaging in activities to increase the availability and accessibility of self-management.
    Partnership working
    EPP CIC works with commissioning groups across the country to embed supported and integrated self-management within their care pathways, which puts patients at the centre of their healthcare, improves the lives of people with long-term conditions and produces genuine savings in primary and secondary care costs. Our Self-Management for Life approach trains both healthcare professionals and patients so that patients are activated to self-manage effectively in partnership with their clinician, with the healthcare professional training being fully accredited by the Royal College of Nursing.
    We work with voluntary groups and other third sector organisations to develop bespoke solutions for their patient communities, for example, National Rheumatoid Arthritis Society, Stroke Association and Mentoring and Befriending Foundation.
    We continue to develop relationships with corporate partners, which can enable access to engaged patients and healthcare professionals, support greater medication compliance, provide CSR opportunities and facilitate research.
    Social value
    Having access to self-management programmes, that encourage responsibility for health and wellbeing, supports people to become part of the local community as productive citizens with meaningful activities, such as volunteering, education and employment.
    Following attendance at one of our self-management programmes participants are invited to train as a volunteer for EPP CIC in a variety of roles, including becoming an accredited tutor. Some go on to become ambassadors for self-management representing EPP CIC in the media and at events. Some also go on to act as patient representatives for other health organisations, for example the Royal College of General Practitioners and the London Deanery.
    An innovative programme, developed by EPP CIC, trains volunteers who are living with a long-term health conditions to become mentors to students on the Foundation Degree in Health and Social Care Long Term Condition Pathways. The Service User Mentorship Programme places healthcare service users at the centre of education of healthcare students, thereby improving health and social care service provision.
    To investigate the social impact of self-management programmes EPP CIC commissioned an independent Social Return on Investment study, which focused on participants in The Wirral with a history of alcohol and substance misuse. This evaluative SROI showed that for every £1 invested approximately £6.50 of social value was created. This research has been independently assured by The SROI Network, and peer reviewed in Self Care – the journal of consumer-led health.

    How self- management can support
    Self-management can be viewed in two ways: as a portfolio of techniques and tools to help patients choose healthy behaviours; and a fundamental transformation of the patient–caregiver relationship into a collaborative partnership (De Sliva 2011, p vii).

    In the 21st century we, as patients, have very different expectations. Probably the defining age group is the ‘baby boomers’. The children born in the 10 years after the end of the Second World War have fundamentally different attitudes to those born in the 10 years prior to the start of the Second World War. They have been born to expect the NHS to be there to pick up the tab for any ailment, whereas their parents were thankful that there was an NHS. They expect new solutions as soon as they are publicised rather than accept what is dispensed. 80% of the current population research the internet for new remedies, whereas previously, 10% of the population would look up the options in an out of date encyclopaedia.

    In England, the estimated number of people currently living with a long-term health condition is 15.4 million, one in three of the population. It is well documented that the demographics of England is changing and, since the 1930’s, the number of people aged over 65 years has more than doubled, with a fifth of the population now being over 60 years (DH, 2001, p. 3). This is one of the main drivers of the Health Act 2009, as this projected increase in age and long-term health conditions will place an enormous burden on the National Health Service, as many are intense users of services. As stated by The Kings Fund, people with long-term health conditions currently, (2011, p.1) ‘account for 52 per cent of GP appointments and 65 per cent of outpatient appointments’. The DH estimates that the treatment and care of long-term health conditions account for 70% of the total health and social care spend in England. (Cited: DH 2010, p4)

    Why empower service users?
    There are real benefits in empowering patients with long-term health conditions and their carers. This means strengthening health literacy, protecting and promoting patients rights, and ensuring participation of patients in decision-making processes. Patient empowerment needs to take place simultaneously at both the population and the individual level. Empowerment is a multi-dimensional social process through which individuals and groups gain better understanding and control over their lives. The benefits of this approach are numerous for patients, carers, healthcare professionals and the health systems.

    Empowerment can bring increases in life expectancy, greater control of symptoms, less anxiety over health issues, enhanced quality of life, more independence and autonomy. It is true to state that it is not just increasing life expectancy, but about boosting the enjoyment and fulfilment of these extra years rather than intensive interventions extending life with zero enjoyment for the individual or the people around them. This is something that EPP and self-management focuses on. The benefits for health professionals and the health system of an empowered patient, someone who has built structure into their lives, is engaged in his or her own care means better communication, better adherence to treatment regimens, more productive consultations and less time in the health centre.

    Why be an active self-manager?
    An active self-manager is able to participate in the management of their health to their level of preference. An active self-manager understands their condition and feels able to participate in making decisions with their healthcare professional, for example, being able to make informed choices about treatment and management options or able to challenge and ask questions of the healthcare professionals providing their care.

    An active self-manager knows their body and often their disease better than anyone else and will take responsibility for protecting and maintaining their health by actively seeking information and making decisions, seeking care when necessary and choosing treatments that are appropriate to their lives.

    Active self-managers are aware of their rights and responsibilities when looking after their health. They are better able to understand how to navigate the many players in the healthcare system, including family, carers, health care professionals, pharmacists and so on, and when unsure what to do next, feel confident to ask for the information they need. They feel confident in following the decisions that they have made with their healthcare professional, which leads to better healthcare outcomes and a satisfied patient.

    Moreover, active self-management is about recognising that not all patients wish to be in complete control of their own decision making. Some people do not wish to make life altering decisions, nor have the skills to interpret the choices offered by the healthcare professional. To give the patient too much responsibility for their own health can also be seen as neglecting the patient. Therefore, healthcare professionals should take the psychological wellbeing of the patient into consideration when giving the patient instructions and choices. Patients need to be able to engage effectively with their health care professional, who can act as a resource to them. The patient and the healthcare professional partnership is very much about involving the patient at all levels and in all decisions.

    Programme delivery
    EPP CIC offers a robust quality assurance for all their products and services commissioned. It is interesting that only around 50% of GPs will be used to an EPP service from their provider arm or its successor. The quality and range of services outside of EPP CIC can vary dramatically, with the focus being on those poorer services being remembered. Around 25% of GP’s will have experienced EPP CIC at some point and the remaining 25% of GP’s will have had no experience as the work was not commissioned in their area. It is important to note that the role of staff in GP practices is key to identify the patients who will most benefit from an EPP course, which will also maximize the return on investment. It is important to add that commissioning EPP is not a totally passive affair where you simply sign an SLA or contract and the problem is taken away. It requires joint activity from all concerned to optimise the outcomes.

    EPPCIC also offers a service for Person Centred Care Planning by a trained and experienced person who can assist the patient and their family/carer by empowering them with the skills and confidence to manage their wellbeing and health and social care needs to assist their own quality independent living and choice.
    How do health systems need to be re-shaped?
    Health systems have initially been organised as a paternalistic delivery of care to patients. In such a model the professional is at the centre of the system – he or she has exclusive access to knowledge and the patient is expected to comply with the instructions given by health professionals. Fortunately, this is changing; health care is considered a process of co-production in which a team of professionals interacts with the patient and his/her family and support group. However, in order to implement such a model, certain changes need to occur:

    • Patients want informed choices which means that both professionals and patients need a change of mindset from one based on hierarchical expectations towards one based on dialogue and co-production
    • Health systems and how they function need to become more ‘readable’, so that patients can navigate easier
    • Health professionals need to be better communicators and listeners
    • Information needs to be much more easily available and in an understandable and appropriate format
    • Patients need to plan and prepare for the interaction with the health care systems, ask questions, express needs and expectations and implement jointly agreed treatment programmes.

    Health services can support active self-managers and empower patients if services and care pathways are designed to have self-management tools and skills as the goal, and involve the patients at all points. This ensures that self-management is not just tagged on but runs throughout the whole service, which means a joined-up integrated service provision, where the whole is greater than the sum of the parts. Therefore, health services and health professionals need to actively support patients by supporting self-management, working with the patient in an equal partnership, on an equal platform. This means that the focus is very much on the patient. Working in an environment where services are joined-up. What is important to note, is that this empowers the lives of not only the patient but also of those who support people with long-term health conditions.
    An integrated approach:
    Key to realising the benefits of EPP is ensuring an integrated approach to self care that incorporates three core spheres of influence:
    Self-Management for Life
    A whole system approach to self-management

    Self-Management for Life provides training and consultancy in all three key areas:
    • ‘choosing Self-Management for Life’ offers bespoke self-management programmes for people living with long-term conditions.
    • ‘supporting Self-Management for Life’ offers interactive, experiential skills training for health professionals.
    • ‘enabling Self-Management for Life’ offers consultancy, training and services which will enable organisations to redesign services and care pathways.

    Why self care/self-management should be part of the long-term conditions strategy:
    Politically, the spotlight on self care and self-management has intensified, with both now being at the centre of the Government’s vision of the Big Society where communities are engaged and proactive in deciding how local services are run and delivered. The idea of the engaged citizen is as important as the engaged patient if poor health and inequality are to be tackled effectively.

    Self care and self-management remain a core element of the Department of Health policy framework with EPP being one of the delivery tools and providers to meet this agenda, with active support for self-management being number one of the ten priorities for commissioners published by the Kings Fund in 2011. It is a significant intervention in the delivery of services to support people with long-term conditions.

    Active self-management empowers people to take control of their lives, as well as being cost effective for all concerned. In fact, all of the above points are reasons why it should be part of the longer term strategy but not in name only. For truly patient centered care, self care/self-management needs to be appropriately financed and supported at all levels, within long-term condition care pathways.

    Barlow, J., Weight, C., Sheasby, T., Turner, A., & Hainsworth, J. (2002), Self-management approaches for people with chronic conditions: A review. Patients Education and Counseling, 48, 177-187
    Department of Health, National Service Framework for Older People, Executive Summary, (March 2001), Department of Health, London
    Department of Health, Our health, our care, our say: a new direction for community services (2006) London
    Department of Health, Improving the health and well-being of people with long term conditions, (January 2010), Department of Health, London
    De Silva D (2011). Evidence: Helping people help themselves. UK: The Health Foundation
    Expert Patients Programme (2010): Self care reduces costs and improves health – the evidence. London
    Lorig, K. (1993), Self-management of chronic illness: A model for the future. Generation, ARAMIS, Stanford University, USA
    The Kings Fund, Long-term conditions, (On-line) http://www.kingsfund.org.uk accessed 21st November 2011

  28. Paul Fennelly says:

    There need to be joint out thinking on mental health and physical health and personal care budgets. Mental health services need to look at the needs of an individual on an individual basis, and also what would benefit their physical and social needs as well. Personal care plan should not be a blanket or cover to fund an organisation but to fund an individual’s needs. Social care and needs of an individual should not be disregarded or ignored but held up by a personal budget plan. Having two mental health disorders, long term or life time physical health condition, your personal care budget should not be swallowed up by administration fees of an organisation however good they are employing interns or STRs seeing you face to face for a limited time when the costs are low, when your personal care budget could be spent more effectively elsewhere. Thus empowering me or someone like me to have a better quality of life, rather than a limited life and the risk of getting ill for the rest of my life rather than moving on with my life.

  29. Peter Chilcott says:

    The range of care situations that carers meet is almost infinite. Silly rules make everyone look stupid. Three examples:

    Tetra: I’m going deaf in one ear, to much wax again.
    Nurse: Get yourself some ear drops, they will help.
    A day later:
    Tetra: I bought the ear drops at the chemist, can you put them in for me?
    Nurse: Sorry, unless they’re prescribed by your GP, I can’t.

    Carer: Your nails need cutting, you’re scratching yourself at night.
    Tetra: Thank you, can you help with that?
    Carer: Sorry, we can’t touch ‘em.

    Carer: How many sugar’s?
    Tetra: Just one, and can you pass me the vitamin C tablet in the saucer.
    Carer: I can’t unless it’s prescribed, sorry.
    Tetra: Can I have 6 sugars then?
    Carer: Really?
    Tetra: No, it’s Ok, just testing for sanity.

    Personalise care by allowing care receivers to ‘sign away’ or ‘take all responsibility for’ many care actions. A simple A4 size checklist could be the first page of the care plan with the necessary words and a signature.

    The nursing and caring professions continually talk of wishing to adopt ‘personalised care’ while actively preventing personalised care by applying the silly rules that prevent it. This simple method, similar to the consent form patients sign before major surgery I assume, would allow it to be implemented.

    It might allow some respect to return to the administration of the care giving organisations.

  30. Jacob Walsh says:

    I was diagnosed as having Ulcerative Colitis in 2010. The effect on my life has been devastating. From someone who had never been in hospital and was resistant to taking painkillers I have numerous hospital admissions, 2 years of steroids, immune suppressant medication, and what I am told will be a lifetime of preventative drugs, whose side-effects make me feel as bad as my condition. Add to this a year (so far) on antidepressants and you might have some idea how I am feeling.

    My personality and outlook have completely changed and this is because fundamentally I have no real recognition of my condition or the way it affects my life. When really ill I go to the toilet 25+ during the day and night and even when I am told I am in remission, I have to go the toilet 10 times a day at very short notice. Imagine travelling an hour a day on tube trains knowing at any point you may need to find a toilet within a few minutes.

    Intitially I had to take 5 months off work to stabilise my condition and when I returned I had a flexible work agreement in place which meant I could work at home (remotely logged into the work computer system, the same as at work) to do the mudane office/computer tasks like report writing, emails etc. This meant I could plan my time around my condition so I could attend all the meetings my job requires.

    I did this for over a year and even though ill at times, I took leave when I went into hospital and was told all my work was fully up-to-date and I had exceeded the expecctations of my work plan. Then I was irrationally told despite this, I had to attend the office so my face could be seen more. Other workers were jealous of the time I could work at home and with that most of my flexibility was gone.

    I tried to fight this but was told all the work adjustments made by my employer were voluntary. As a result of the new pressures on me I couldn’t manage the new arrangements and got sick again. I ended up having 5 months off work til they found the right drugs to stabilise me. In the meantime my department was restructured, the number of jobs reduced by one, and it looks like I’m the one who will lose my job.

    This illness has devastated my life. I have little social life and am in constant fear of not getting to a toilet on time. I suffer chronic pain at times especially in the mornings and feel exhausted and yet I seem to have no offcial recognition of my condition (even though it is mentioned in the DDA) and I have to pay for all my prescriptions.

    I want to work and I can do my job, as I have demonstrated, if I am allowed flexibility. I don’t expect to do less than anyone else just be allowed to manage my workload flexibly to fit around my illness, but I have no real rights it seems. Even the Union says I should take any small concessions my employer offers as employers decide what is reasonable.

    If I do lose my job which I fully expect to happen, how will I ever get another job with my health issues. Yet I am told I won’t get any extra help, so I lose my home and end up on benefits no doubt.

    The system designed to support people like myself and others who develop these long- term illnesses, is failing woefully. It needs an overhaul, people with long-term conditions need to be given rights and given a registered disabled status, so that employers have to work with them to enable them to stay in work. And for those unable to work, extra support is needed so they can find work and maintain it.

    To do anything less is to consign people with long-term health issues to a life where they struggle to manage their conditions until they can no longer do so and end up trapped, unable to work and unable to get the benefits they need to manage.

  31. Anthony John Treadgold says:

    I had a blood vessel burst in my spine at T11/T12 in 2001. At the time I had virtually no physiotherapy for the first 7 week, I then managed to get BUPA to fund my having private treatment, where I had physiotherapy Monday to Saturday and could use the gym 7 days a week. At the end of 5 weeks I was able to walk in a mobile standing frame. BUPA then terminated the treatment.
    The NHS rehabilitation unit treated me for 8 weeks, but then posted me home as unlikely to ever improve. I almost died of kidney failure due to recurrent bladder infections and the dreadful state of my bladder. I had an operation to replace the little valves in the bladder and botox injections which stopped the back flow.
    I then found a solution to my urine infection, I self catheterise 5 times a day. A derivative of sugar called Waterfall D-Mannose, has kept me free from e-coli infection. (www.sweetcures.com)
    In 2003 I had 4 weeks at Stoke Mandeville Hospital but has a massive infection, not e-coli which almost stopped me having any treatment because of continual bowel weakness. I was posted home with a medical report saying I had no strength in my legs.. At that time my Gloucester Health Trust had informed Stpoke Mandeville they would Be unable to give me any followup treatment and have not given any unto the current time.

    I discovered a RECH motomed from our then local hospital in Evesham. It offers two modes of treatment, passive and active and detects if one leg is cheating. I took my unit to Stoke Mandevill because they only had one unit, at that time. I had a Oswestry standing frame and also purchased qa small vibrating plate. So my exercise regimes starts with scenar, then vibrating plate and then standing frame, where I use exercise belts to do real upper body exercises.

    HowefvWe have two friends, Margaret broke he spine ion a horse riding accident. The live in Manchester and Margaret has had NHS hydrotherapy and physiotherapy up to the present time.POSTCODE LOTTERY!

    TECHNOLOGY developed for the Russian Cosmonauts in the 1960s. It is now used throughout Russia by all medical front line staff. It looks like a TV handset set, which when tsroked on your skin, sends signal;into your neural system and the moves into treatment mode. I discovered a local therapist, Sarah, who used the scenar and deep massage, treated me at home for three years.In 2007 I was able to walk 20 metres in parallel bars. She then left to become a mum and my treatment stopped until I met Lindsay who was a nerve reflexologist. She brought a new dimension to my treatment which showed hod how the acupuncture points in the feet can treat all the organs in the body. This links with the scenar methodology and I have been able to use my scenar equipment, which I import from the Ukraine. Lindsay had to stop treatment because of the strain of massage on her fingers.

    AT THIS POINT I DISCOVERED THE MAGNASSAGER A handheld 24 volt device with three rotating shell balls in a large magnetic field. It performed the deep massage without any strain on the therapist hands. Rebecca my next therapist was a Scenar therapist who also used deep massage but our combination took on new paths because I HAD MY OWN SCENAR AND WE DISCOVERED THE BENEFITS of dual scenar treatment. I use remote electrodes place on my spina and we rapidly discovered that all my neural system started working. My large Manassager also restored muscles in my gluts and I was then 2010 able to get on all fours and move forwards and backwards with total stability.My legs were then two strong for rebecca so
    Simon became my next therapist and I made a 6 foot by 4 foot massage tables that he could really stretch my legs and he used my scenar and magnassager.


    ON A VERY POSTIVE FRONT Margaret uses scenar and has all the Russian treatment at. http://www.physability-uk.com

    I am currently challenging the Council reusal to allow me to cut down my Yew trees.
    Watch this space

  32. David Murphy says:

    The British Psychological Society, incorporated by Royal Charter, is the learned and professional body for psychologists in the United Kingdom. We are a registered charity with a total membership of almost 50,000. The Society warmly welcomes the commitment to develop a holistic, cross-government strategy for long term conditions. We very much support the aim of creating and/or improving joined up service provision to place the needs of the person with a long term condition and their families/carers at its heart.

    Living with a long term condition can be demanding. The effective management of long term physical conditions often involves changing health-related behaviours, (e.g. increasing exercise, stopping smoking, dietary changes, regularly taking medicines). Coping with and managing a long term condition involves a number of psychological demands on the individual and their family/carers, such as managing unpleasant symptoms, dealing with stressful medical procedures, making adaptions to the consequences of the condition and negotiating through interactions with the range of health professionals and services with whom they required to engage. As a result of the emotional demands, mental health problems, whilst by no means inevitable, are common. Indeed, people with long term conditions are three to four times more times likely to experience anxiety and depression than members of the general population. Furthermore, the impact that long term psychological difficulties have on family life, working life and a person’s ability to function within society can be quite devastating, and may lead to downward trend in financial status and employability.

    Over recent years a large number of psychologically focussed research programmes have provided strong evidence that rehabilitation and secondary prevention services, that contain integrated and mapped psychological interventions, lead to improved outcomes, across a range of domains, for people who have a long term condition. Psychological interventions ranging from support and information, advocacy, guided self-help, or individual or group-based cognitive behaviour therapy could improve health outcomes through:

    • improving communication
    • enhancing concordance with recommended treatments
    • improving health behaviours (e.g. quitting smoking, healthy diet, regular exercise)
    • improving symptom management
    • treating depression and anxiety and improving psychological well-being
    • reducing disability and enhancing quality of life in LTCs
    • providing appropriate support to carers

    However, despite robust evidence of the effectiveness of integrated psychological services, routine hospital and community management often lacks any psychological framework to guide care.

    Furthermore, the existence of a workforce with the right skill mix is crucial to the implementation of an effective long term condition strategy, a strategy which can deliver effective health care and support people in their homes and community settings to achieve the outcomes they want. Currently there is a shortage of qualified practitioner psychologists with the competencies necessary to deliver these services. In particular, although there are currently nearly 18,000 practitioner psychologists registered by the Health Professions Council there are fewer than 500 registered Health Psychologists.

    In addition to the practitioner psychologist workforce, there is also need for vastly enhanced training in psychological skills and interventions in the wider healthcare workforce since psychological care and psychologically-based interventions can, and should be, delivered by a range of health professionals within a structured psychological framework of appropriate levels of care. This is to ensure that people with long term conditions have access to health professionals who are equipped with the appropriate level of psychological competencies at the right time and in the right place (ranging from nurses on a hospital ward to doctoral level practitioner psychologists working as an integral member of a healthcare team).

    The British Psychological Society is committed to supporting the development of the cross-government strategy in whatever ways it can over the coming year and anticipate huge benefits from the successful development and implementation of the strategy for people with long term conditions, their families and carers, those health professionals involved in their care and more widely to their employers and the government.

    David Murphy
    Chair of the Professional Practice Board
    British Psychological Society

  33. Katie Lane says:

    Citizens Advice Bureaux advise individuals on over 7.1million issues a year and 32% of our clients tell us that they have a disability and/or Long Term Condition.

    It is been interesting to read so many postings where individuals have highlighted the problems they face in their interactions with the welfare support system. This backs up the information from our service users who have LTCs and who tell us how they have been unable to claim the benefits to which they are entitled without support and assistance, often having to go to appeal to overturn wrong decisions, and being called into benefit reviews every few months when their condition has remained unchanged.

    In our initial input into the stakeholder group, we identified three areas that we felt needed addressing.
    1. The CAB service was keen that the strategy was more inclusive than just looking at the condition itself and takes into account the other key factors affecting the daily lives of people with LTCs. We strongly support the need for the wider determinants of health and wellbeing to be considered, addressed and included when planning care – non-medical support can be more important than medical interventions for some individuals, especially those who are managing their condition with little input from the NHS.

    2. The CAB service was keen that inequalities; between geographical areas, individuals from different backgrounds, and different conditions should be identified and tackled. This inequality applies equally to both the support available to individuals to tackle the determinants of health and access to wrap around services, as well as inequality in access to health treatments/interventions.

    3. The third area we initially flagged and continue to be supportive of is that people need the right information, in the right way – whether this is about prevention, managing their conditions, benefit entitlements or getting on with other aspects of their lives.

    Citizens Advice is concerned that these 3 key issues may not be adequately addressed by the 6 shared goals and recognises that the detail behind the goals will be crucial. For example there a risk that the goal to support people to succeed in work is perceived to as address the financial concerns individuals with LTCs face. However, many people with LTCs, are out of work and need to be adequately supported by the welfare state and this must be recognised.

    Finally, the Citizens Advice service is supportive of the goal that individuals with LTCs are supported to stay as well as possible, and this must include financial support where appropriate. However, the welfare reforms risk disproportionally affecting people with Long Term Conditions, with both increased financial concerns and the stress of interacting with the benefit systems leading to worse health and a poorer quality of life for people with Long Term Conditions. Given the significant interactions that individuals with LTCs, including so many of our service users, have with the benefits system then the LTC must take into account the impact of welfare reform. Citizens Advice will shortly be publishing an evaluation of the potential impact of universal credit on people with disabilities and LTCs.

  34. Sharon Simm says:

    My husband worked all his life – not once requesting anything from the “system” when being made redundant, but found work, no matter what it was to keep going. At the age of 54 in 2003 he started with “symptoms” in his left hand – these symptoms consisted of dropping things unable to pick things up etc, after nearly three years of test’s he was finally diagnosed with MND – I must say the hospital staff where second to none and the consultants my husband were very good, however it did not stop us feeling that we were just on a conveyor belt and the condition was just being monitored. When my husband visited our GP his bedside manner was abysmal and all he said was that my husband should just go home and get his house in order – he did not even ask how my husband was feeling about the diagnosis – and just sent him home – we were lost – we had been told that my husband would be unable to claim any benefits as he was not disabled enough at the time – although the condition is rapidly progressing – after two years we found out that he was actually entitled to DLA which he could have claimed on diagnosis – this would have helped. After reading through comments on this forum I notice that some people feel disabled people get far too much help – and that people with broken bones should be looked after better with blue badges etc, these people need to wake up and try and understand what true disabled people have to deal with.
    One other comment on the forum is regarding free prescriptions for anything life threatening – MND is fatal not just life threatening but because MND is not on the relevant list at the pharmacist’s then until you reach the age of 60 you still have to pay for the one drug that is available to help – this is not a cure it is just supposed to prolong life for approx 3 months – there was also times that it was difficult to obtain the drug as distributors were selling it abroad and there wasn’t enough availability in this country – surely these drugs should be a priority.
    Personal budgets are a good idea – however when you are diagnosed with a fatal condition then the last thing you want to think about is managing your own budget for carer’s etc as you have the daily task of just living being very difficult and it is good to have the support of the health & social care services at all times, as your condition deteriorates it becomes increasingly difficult to manage and direct your own care and empower yourself to lead the life that you choose.
    Another comment in the forum is regarding patient records being available amongst professionals – when you are dealing with a consultant your records are held mainly by that department – but if you end up going to your local hospital not everyone knows about your condition and if you cannot explain, certain staff will not listen to the carer as they feel they know better – but who does know better? the person & carer who live daily with their condition or the professionals – staff need to listen more. On stating this the consultant and specialist staff were excellent over the period of time – and eventually after a two year lull we had a GP that would regularly visit my husband to discuss with him how he was feeling generally and would have long discussions with him – this helped greatly with my husbands state of mind.
    It is very important that the person is treated with empathy and not just someone with a condition that no-one can help. Also an approach to holistic therapy which again treats the person as a whole helps to make them feel so much better – they know that there is not a cure but feel that someone is helping them.

  35. Dr Beverly Collett says:

    The Chronic Pain Policy Coalition (CPPC) is a forum established in 2006 to unite patients, professionals and parliamentarians in a mission to develop an improved strategy for the prevention, treatment and management of chronic pain and its associated conditions.

    The long term conditions strategy should ensure that chronic pain is recognised as a long term condition, either in its own right or as a component of other long term conditions and ensure that all those in persistent pain have timely assessments in order to determine the cause of the pain- if a cause can be determined and to advise of on options for treatment including self-management.

    People living with chronic pain should benefit from the preparation of care plans but decisions should be taken on an individual basis depending on the severity of the symptoms and any co-morbidity.

    Pain, both acute and chronic, is a cross-cutting topic that has an effect on all areas of healthcare and needs to be effectively managed across primary, secondary and tertiary care. Those living with chronic pain need to be provided with a key contact point from their interdisciplinary health care team so that they feel confident in knowing where to turn as issues arise or develop.

    There is an important interface with social care particularly through care of older people and those with other long term conditions including mental health conditions, many of whom live alone or with carers provided by social services. Pain management needs to be effective and rigorous in social care settings.

    Self-management is crucial for providing the tools that enable people living with pain to understand how their condition affects their lives and should play a crucial role in the long terms conditions strategy.

  36. Richard Alexandar says:

    Both epilepsy and PNES are subject to the cliched postcode lottery. After many years of haphazard and sometimes ill-informed treatment, I re-located to a different part of the UK, to be within 10 minutes by ambulance of a world-class hospital. The move produced the results I was anticipating: accurate testing & diagnosis, backed up by the right treatment.
    Nobody should have to resort to such a drastic solution at the age of 68. We need more epilepsy specialists at every level, to save suffering, and the money already calculated in the APPG report, “Wasted Money, Wasted Lives”.

  37. Nicola Glover says:

    The aims of the LTC Strategy mirror the aims of the National Cancer Survivorship Initiative and other key national cancer policies. A significant amount of work is underway within the London Cancer Alliance to address these issues for cancer survivors within South and West London. This links with National work being spear-headed by NHS Improvement, National Cancer Action Team and Macmillan.

    A strategy which enables more joined-up thinking and working across long-term condition diagnoses, with an associated increased understanding and recognition can only be a good thing. The work to ensure that this does not become further rhetoric and has an impact on service users will be an exciting opportunity. As may of the comments highlight, the issues and solutions are not new and there are pockets of good practice around the country.

    This strategy will need strong national leadership, with clear mechanisms to mandate change and meaningful adjustment to service provision.

  38. Chris Quince says:

    Alzheimer’s Society, as the UK’s leading support and research charity for people with dementia, their families and carers, welcomes the opportunity to comment on these draft proposals for a cross government long term conditions strategy.

    The Society supports the draft goals, all of which are pertinent to people with dementia. There are currently 800,000 people with dementia in the UK and dementia costs the UK economy £23 billion a year. However, only 41% of people with dementia in England have a formal diagnosis. Emphasis on early diagnosis is therefore essential to meeting the needs of people with dementia and this has been recognised in the Prime Minister’s challenge on dementia, published in March 2012.

    The Prime Minister’s challenge on dementia also sets the ambition for the creation of dementia friendly communities. Dementia friendly communities are towns, villages, cities and organisations who have committed to improving the lives of people with dementia and are taking action to do so. The Society, working with the Department of Health and others, is leading conversations with organisations in retail, banking and other sectors on what steps they can take to support the development of dementia friendly communities. Departments across Government can play a vital role in supporting the Prime Minister’s ambition in this area.

    We hope the long term conditions strategy will highlight the importance of meeting the challenge of dementia and the role action across Government can play in supporting the development of dementia friendly communities.

    More information on dementia friendly communities can be found on Alzheimer’s Society’s website: http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=184

    Copies of the Prime Minister’s Challenge can be found on the Department of Health’s website: http://www.dh.gov.uk/health/2012/03/pm-dementia-challenge

    Chris Quince
    Senior Policy Officer
    Alzheimer’s Society

  39. Peter Austin says:

    Early diagnosis is vital in Ankylosing Spondylitis ( A S ).
    many people, including myself, are /were misdiagnosed for up to 7 years before a proper diagnosis of A S .
    This means that A S patients miss out on proper treatment and advice in the most important phase of their condition.
    Modern drugs along with the correct physiotherapy excercises and couselling advice can slow down the progression of the disease and even prevent patients becoming the worst cases, IE, severe kyphosis of the spine and severe disability.
    Those who unfortunately get really bad and need daily help to live a normal life should get unconditional support from the government, rather than have to undergo degrading interviews and medicals every year or two.
    Those who suffer from A S usually have bad fatigue problems, which affects their ability to hold down even a part time job. Fatigue also makes everyday tasks such as housework or keeping the garden tidy difficult.
    This is even more difficult and often impossible due to the pain suffered in severe cases.
    DLA benefits help A S sufferers to carry on working if they have a non physical and/or stressful demanding job, it also helps A S suffers to have a reasonably good quality of life, as they can afford the extra daily living expenses that being disabled and in chronic pain bring.
    Preparing food is often very painful , therefore,the need to buy pre -prepared food, such as vegetables etc is vital, even though it costs more.

    I don`t think that government realises the trials and struggles that disabled people with chronic illnesses face every day.
    I firmly believe that the new personal independance payment replacement for DLA will mean that a lot of people who can only walk with pain, but don`t or can`t use a wheelchair will lose out on the mobility payments and be reliant on family and friends to ferry them to places, rather than being able to drive themselves.
    The same with the care component, many disabled people live alone and get mid rate care at present, even though they try to do as much as they can for themselves, even though it causes a lot of pain and fatigue.
    I believe that the new criteria, will cut many genuine chronic illness sufferers off of care allowances and that will be severly detrimental to their hygeine and wellbeing. Not to mention that they`ll be unable to integrate into society, as they will not be able to afford to participate in gentle hobbies or go out for the day.
    I am scared for my future, at present I am ok, i`m not living on the breadline, but at the same I have to be careful how i spend my money, just in case an unexpeted emergency, such as a household appliance or disabled aid breaks and needs replacing.
    Over the years, I have steadily got worse with my A S, partially due to a 6 year delay in the correct diagnosis and the fact that in the 90`s and early 21st century, I was involved in 4 non fault car crashes which damaged my spine , due to the weak bone scar tissue which my A S had built up over 35 years. These days i no longer go out socialising at pubs or restaurants, purely because it is impossible for me to drink whilst standing , painful for me to stand and painful for me to sit for too long in a dining chair etc, it is also difficult for me to eat at a table due to my rigid spinal column and spinal kyphosis . Plus I am very conscious of people staring at me or making comments. I have develpoed a phobia of going to public places such as pubs on my own!

  40. Jane Chapman says:

    Thank you for the opportunity to comment.

    Stafford & Surrounds and Cannock Chase CCGs fully support the development of the LTC Strategy and would echo calls for changes outlined in the comments and from the stakeholder event.

    As commissioners we would ask that the strategy gives particular attention to three areas.

    1. To use the tariff to support the development of optimal pathways and consider payments that rewards acute trusts who support outreach into the community through payments for a year of care.

    2. As more people with LTC are managed in the community a mechanism for assessing the GP Practice’s contribution is developed and appropriate funding follows activity.

    3. Urgent attention is given to developing a simple, shared electronic record for people with LTC.

    We trust these comments are constructive and look forward to receiving the strategy at the end of the year.

    Stafford & Surrounds CCG & Cannock Chase CCG
    June 2012

  41. claire moser says:

    Role of speech and language therapists.
    Speech and language therapists have a role to play in supporting people with long term conditions. SLTs assess, diagnose and treat speech, language and communication problems and eating, drinking or swallowing problems in children, adults and older people. Both communication and eating, drinking and swallowing difficulties have a significant impact on a person’s likely need for health and social care services.

    Services need to be able to meet the needs of people with long term conditions including cognitive, emotional and communication problems. People with neurological conditions may have fluctuating conditions which require specialist intervention and support, which is adapted over time.

    There is no doubt that the effective multidisciplinary management can help improve the lives of people with long term conditions. SLTs are members of multi disciplinary team which include other allied health professionals (AHP). AHPs are employed by both health and social care services and are well placed to promote integrated working across sectors and locations.

    A challenge is to enable people to remain in the community rather than being admitted or readmitted to hospital. AHPs can help prevent unnecessary and avoidable admission to hospital by promoting quality of life and independence.

    Access to therapy is essential in the community. Early support discharge teams, due to budget pressures, may ration access to essential therapy services including physical therapy, occupational therapy and speech and language therapy. Support with communication problems requires longer term intervention.

    The RCSLT carried out a survey of access to speech and language therapy and found that out of 500 respondents more than half said they did not receive enough speech and language therapy in the community after discharge from hospital.

    Vocational rehabilitation.
    Our economy has become increasingly dependent on communication-based employment. Language is central to every job, from the boardroom strategy meetings to the manual tasks requiring fine measurements and specific instructions.

    Investment in speech and language therapy to return a client to employment is cost effective in reducing dependence on benefits, and in maintaining emotional health and self esteem. Dame Carol Black stated in her “Review of Health of the UK Working Population” that work is good for both long-term health and well-being. Speech and language therapy allows people with long term communication problems a chance to retain their place in the work force, their self esteem, income, life plans and continued contribution to their community.

  42. John Lowes says:

    Personalised Long Term Care Plans need to “negotiated” and agreed between a “specialist care coordinator” and those concerned. In many cases consideration should be given to inclusion of the principal “carer”.
    Topics covered should include diet and nutrition, appropriate exercise when possible, pain control, an assessment of the effects of fatigue, and sleep “hygiene”. Psychological wellbeing and a sensitive exploration of “substance abuse”, including “over the counter medicines” by both service user and carer will often uncover other aspects of a Long Term Care plan that are missing often because the appropriate support is inadequately resourced, e.g. a specialist pain service.
    Not being well can begin to become a full time occupation unless services are organised from the service user’s perspective. Separate appointments for exercise or physiotherapy, podiatry, orthotics, occupational therapy advice, psychological counselling, advice about pain control and sleep, let alone the management of a specific condition, plus travelling time and cost, particularly if a carer is involved, not only “steal” the time and treasure of a family but have an important environmental impact. Locality based support services,and the use of electronic and videophone based advice and monitoring, ideally including the possibility of linking with services the state cannot afford to provide would improve the quality of my life and I suspect that of many others and even allow many to remain in some form of work or voluntary activity.

  43. Mike Edwards says:

    Despite all the “grand wording” of propsals to reform the NHS, the major fundamental problem seems to be being overlooked…….
    Suggestions to “enable greater patient involvement in the decision making process” sound to be very laudable, and indeed have a great deal of merit.
    However, when the patient is in pain ( for over two years in our case) he/she is in no fit mental state to cope with a confusing barrage of “options” for things that he/she is totally unprepared……. It is at a time like this that the patient need CARE and UNDERSTANDING, not just “options”.

  44. Amanda Cheesley says:

    RCN Submission to DH LTC Strategy ‘Have Your Say’
    Closing Date 15th June 2012
    Treating people living with long-term conditions is one of the largest costs to the NHS; however they also present some of the best opportunities for making improvements, bettering outcomes, and reducing costs.
    Nursing’s role in LTC care and support
    All nurses have a role to play in supporting people with LTC’s and in particular Practice Nurses. Specialist nurses have a crucial role to play not only in the support for patients with complex needs but in education and training of non specialist staff. The RCN publication Specialist Nurses – Changing Lives, Saving Money (2012) highlight the role these nurses play.
    More effort needs to be made in preventing LTCs, especially those for which there is evidence to support intervention, e.g. type 2 Diabetes, coronary heart disease, some cancers, and muscular skeletal problems caused by poor diet, a lack of exercise, obesity and smoking.
    Health and Social Care staff need to receive sufficient training about LTCs to be able to and manage them effectively on a maintenance basis. Education is also vital in supporting the prevention agenda and self management and should be available for people with the LTC, their carers, teachers, employers and Health professionals..
    Information and support
    The NHS needs to do more with the many patient organisations, which have good quality information and support services, for both people living with LTCs and those caring for them.
    People living with a LTC quickly become experts in how their condition affects them, and are often able to manage with relatively little support; however it is vital that they are able to access correct support and advice from suitably qualified people when they need it.
    This may be access to diagnostic support, treatment options or specialist care. Services should be commissioned to support a pathway of support that MUST include Social care, specialist nurses and Allied Health professionals as well as the voluntary sector. The use of technology to support independent living should be considered and training given to support its use. People who might be involved in the long term support of the person must be trained to ensure that this type of care is effective
    Palliative Care and End of Life Support
    Good quality palliative care and End of Life Care is essential for people with LTC, People need to be able to discuss their wishes regarding their care and support including Advanced Decisions to refuse treatment, Do Not attempt resuscitation plans and also where they wish to die. These conversations need to take place as part of the care planning process.
    Whole System
    People living with LTCs must be supported by all the elements of the state that they need to engage with as part of their daily life not just the Health and Social Care elements.
    Transport, Housing, Adaptations, Access, Community Support, Family support, Social support from non statutary services, access to work, training and education. Co-ordinated care so that obtaining help or assessment from another area is timely and does not involve lengthly assessment and re-evaluation.
    Care homes and hospices need to be able to access the same quality training and support as those within the statutory system so that people living with a LTC can be assured that wherever they live they can access suitable skilled support.
    Many of these components are already in place in some form in some places, what needs to happen is the adoption of all elements of this across the Health and Social Care system. .

  45. Anne Meader says:

    Long Term Conditions
    There are three aspects to long term conditions that need to be addressed
     Diagnosis and what happens at that time
     Continuing professional support and how it is implemented
     Self-management and community support
    Many are in shock and cannot take in the information they are told – there should be clear paperwork (simple, plain English – co-produced) that they can take away to consider and then an opportunity to ask the questions that arise. In most cases there is such a lot of information available (especially on the web) that overload can mean an inability to take in the important factors
    A simple, effective introduction pack that highlights the important steps and milestones could be helpful. Appointments for follow up could be with a GP or could be through other appropriate professionals or voluntary organisations that are often run by ‘experts by experience’.
    The essential process is to support knowledge and activity – not take over the person’s life – the condition is not the person – the person has the condition e.g. the person has diabetes – they are not a diabetic. They still have choices as person and may have other conditions that affect their lives. It is essential to let the person adapt to having the condition, ask the questions they need answering and give them enough information and support to allow them to move forward. An introduction course may be helpful and may need to be developed with patients to ensure they are not taking over their lives but offering them opportunities to make choices
    Continuing professional support and how it is implemented
    The courses above should also be made available for people who have had the condition for some time but have not had the introduction as above
    There has been a massive step forward in how continuing support is offered and provided – but it is still based on the professional working with the individual. Although this is useful and in some cases essential – there is another parameter which is encouraging people to link together in support networks that do not need to be linked to or run by professionals. In fact they are often better when separate as they allow people to talk to each other, share information and advice and challenge some often difficult concepts in a non- clinical environment
    There is however need to provide a range of services, information and advice so that people can find the amount, level and method they prefer and need.
    Self-management and community support

    There is a wealth of knowledge and support in the community which is available for every citizen including those with long term conditions and their carers. Anyone is first of all a person with a personality of their own and secondly may be someone with a long term condition. An individual can be someone with a condition who is also a carer. The roles are not always separate or different. A person with a long term condition needs to identify themselves as a person first, accessing the range of support available in the community and also be able to access any specialist knowledge and support whilst remaining and retaining their individuality. They should be encouraged to take responsibility for themselves but also be supported with information and advice to help them manage and cope with their condition or conditions – often there is more than one which affects an individual.

    Support for families should include information, advice and support to find out more about the condition and how to best support the person with it.

    Essentially we should be recognising the need for everyone to have choice and control over their lives and to take responsibility for their own ‘pathway’ with appropriate support and help. The support should be comprehensive but sensitive to individual wants and needs. The best support is usually peer support which recognises the tensions and stresses of the person as an individual. This should be enhanced by access to the best clinical and professional expertise available as and when needed and wanted.

    The key activities should all be implemented under the terminology of personalisation and co-production. They should also stop separating health, social care and wellbeing – they are all part of the whole person.

  46. Laura Hayward says:

    I work within a physical health setting supporting people with a range of difficulties, including long term conditions. The window for responding has been tight for me so I will keep it succinct. I am responding to the consultation not just as a professional; I am responding first and foremost as a human being.

    Firstly, I am often amazed at the personal resilience I encounter. I meet people with a range of life limiting and life changing conditions, and their families, who are learning to live alongside their difficulties despite constant pain, exhaustion, fear and ongoing uncertainty. The human spirit is truly amazing.

    However, I spend most of my time working with people who have experienced significant loss and trauma (e.g., of function, identity, relationships, of life), who feel unable to manage for a variety of reasons and who perhaps do not have the psychological resources, family and social network, and environmental supports necessary to facilitate their recovery.

    Based on my experiences my main recommendations and points for further thought include working towards:

    • Defining what it means to have a long term condition
    • Learning from those who do it well
    • Joined up, effective communication and integrated working that enables better care and caring experiences for patients, families and staff. This includes health and social care, voluntary agencies, charities and other public and private providers.
    • Better recognition of psychological distress in relation to LTCs as the research clearly shows that people who experience significant distress have poorer outcomes.
    • Timely interventions for people identified as experiencing significant psychological distress, including anxiety and depression but also adjustment issues, some of which are to be regarded as normal human reactions. Further thought would be needed in relation to what this would look like and which professionals are appropriately skilled enough to facilitate it (e.g., clinical psychology, trained nurses etc).
    • Recognising the needs of families who are also affected by LTCs.
    • Recognising the needs of staff who often work in difficult and high pressured environments and who are regularly working alongside trauma and loss. Training, support and supervision are essential.
    • Providing assessment and interventions that are needs based, not condition based.
    • Listening and learning from the experiences of people who use our services.

    There is much more I would like to say about this but as mentioned, time is circumscribed. May I take this opportunity to thank you for opening up the discussion and I will look forward to the response.

    Best wishes,

    Dr Laura Hayward

  47. Motor Neurone Disease Association says:

    Few conditions are as devastating as motor neurone disease (MND). It is rapidly progressive in the majority of cases, and is always fatal. People with MND will, in varying sequences and combinations, lose the ability to speak, swallow and use their limbs; the most common cause of death is respiratory failure. Most commonly the individual will remain mentally alert as they become trapped within a failing body, although some experience dementia or cognitive change. There are about 5,000 people living with MND in the UK. Half of people with the disease die within 14 months of diagnosis. There is no cure.

    The MND Association is the only national organisation supporting people affected by MND in England, Wales and Northern Ireland, with approximately 90 volunteer led branches and 3,000 volunteers. The MND Association’s vision is of a World Free of MND. Until that time we will do everything we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity.

    We have engaged with the process for developing this ‘outcomes strategy’ from the start, both in our own right and as part of the Neurological Alliance, including attendance at the two-day ‘accelerated learning event’. While many of the long-term conditions addressed by this document will be conditions with which the individual can live for a prolonged period, there are other such as MND that entail rapid progression and degeneration. These must be taken into account, and we are pleased to have had indications that they are being kept in mind during the development of the document.

    It must be appreciated that MND creates extreme and complex needs: in the bewildering maelstrom of living with MND or caring for someone who is doing so, it can be hard to understand what support is available, or even where each element of support is coming from – many people with MND would not be able to pinpoint with accuracy which elements of their support are from social care, the NHS or the DWP; nor do many especially care, so long as the support is available quickly and to a high standard.

    Recent reports by the National Audit Office and Public Accounts Committee have found that services for people with degenerative neurological conditions are of unacceptably variable quality, and provide poor value for money. This has arisen from a long-standing neglect of neurology within the NHS in particular: unlike other disease areas, it has not had national clinical leadership or other well-resourced implementation for its National Service Framework; accordingly, it has not seen the progress enjoyed by other disease areas such as cancer and heart disease.

    As we understand it, this ‘outcomes strategy’ is not a successor to the NSFs, in that it will be a high-level vision document, without recommendations or any resource for implementation. Accordingly, we do not believe it will address the concerns raised by the NAO and PAC. The NAO will be revisiting the topic in 2014: we look forward to working with the Government on initiatives over and above this ‘strategy’ to ensure that it does not find an unchanged situation when it does so. In particular we recommend that dedicated national clinical leadership for neurology and a strategic clinical network be established.

    A vision of how services should join up around the individual will be welcome in as far as it goes, but we feel bound to observe that it is coming at the wrong end of numerous reform processes: many major decisions have already been taken, and it is too late for this ‘strategy’ to influence them towards joining up services. For instance:
    - The shape of NHS reforms has already been determined – as integration and co-operation are unlikely to be revenue-earning activities within the NHS, providers are unlikely to prioritise them (this has already been seen in some Foundation Trusts)
    - Recognition of the challenges posed by specific diseases is in direct conflict with current DWP thinking and policy
    - Opportunities have been missed for health and social care integration: both have been structured to be driven by market forces, but the budgetary divide between them means that there is no market driver for integration; instead, from a market perspective cost-shunting will often be the rational choice
    - Housing is vitally important, but the availability of modified housing is very constrained, with little or no new money or building likely; we know local authorities sometimes put people with MND to the back of queue because they will die relatively soon after moving into any new home, and there is no driver within this ‘strategy’ to change this.

  48. Heidi Wright says:

    The majority of patients who live with a long term condition are taking medicines. Pharmacists working in all sectors of the NHS are the experts in medicines use and therefore, need to be involved in all care pathways for LTCs. They are the healthcare professional who can help patients to get the most benefits out of their medicines i.e. medicines optimisation. Pharmacists are in an ideal position to help people manage their health, including their medicines. They can assess the risks of medicines prescribed to ensure that the patient’s quality of life is maintained or improved and that the medicines are not causing any harm e.g. falls prevention.

    In order to look after patients properly, all health and social care professionals should have appropriate read and write access to patient records, and patient should also have access to their records as outlined in the recently published Information Strategy.

    Self care is a large component of the management of LTCs. Pharmacists are ideally placed and have the expertise to help people to manage their conditions and to help them understand what to do when something changes e.g. blood glucose levels change, they are sick etc

    Pharmacists and their staff also play a significant public health role in the prevention of LTCs. They offer support and advice in a number of areas such as smoking cessation, weight management, alcohol intake etc. They also are able to help identify early symptoms of LTCs such as diabetes and asthma and refer patients to their GPs for further examinations. A number of pharmacies across the country are now ‘Healthy Living Pharmacies’ where a range of public health services are available. Pharmacists are becoming more involved in the early detection of cancer and have demonstrated they make appropriate referrals to a patient’s GP, or in one area, secondary care.
    Usually pharmacies are sited in towns and communities with high levels of deprivation, higher than average morbidity and low levels of health literacy. Pharmacists are well positioned to identify and approach people from target groups e.g. persons from ethnic communities, the older people and the vulnerable, asylum seekers, travellers and the homeless, and can and do offer services that more traditional NHS services may not offer, and in premises which are more local and convenient, thereby improving access and uptake.

    Some solutions to the problems that are faced by the pharmacy profession that affects people with LTCs
    • Communication and co-ordination of services across the interface needs to be improved so patients with LTCs are better supported as they transfer between care providers. This also includes the interface between health and social care.
    • National support to help identify patients at risk and who would benefit from some of the services available to them from community pharmacies such as targeted medicines use reviews (MURs) and the New Medicine Service (NMS)
    • Appropriate access to patient records by all health and social care providers involved in a patient’s care would assist the management of LTCs
    • Training of health care staff to use a coaching approach when working with patients who have a LTC, the use of short interventions to use ‘every contact counts’ which is especially relevant to community pharmacists as they are the accessible health professional on the high street

  49. Matthew Weaver says:

    As a person who has suffered from deep depression and has a friend with a bi-polar condition, I find it a hard pill to swallow that the government are going to scale back on the support for these types of mental conditions. The government shouldn’t be allowed to let people suffering go unheard, I sincerely hope they reconsider the current plans as they are plain ludicrous.

  50. Sam Gallop says:

    I very much agreed with Amy Edward’s comments.

    Despite the risks, I would plead for more endeavours to produce and implement for common locations providing various vital professional services, integrated IT and comunication systems. (see latest MONITOR
    information on barriers to integrated care).
    And of course really and truly consult – and pretending to listen is even more irritating than not listening at all!

  51. Peter Mansbach says:

    SLEEP: Essential to treating long term conditions is the proper diagnosis. Chronic lack of sleep produces symptoms that mimic other conditions such as depression, ADHD (attention deficit hyperactivity disorder), fibromyalgia, and others. Often these other conditions are diagnosed, when in fact the underlying cause is a sleep disorder. Treating the secondary condition is a waste of resources, and often does not help the patient. In addition, lack of sleep can lead to more serious long term conditions such as diabetes or cancer.

    A critical first step is the recognition of the various sleep disorders, including circadian rhythm sleep disorders (delayed sleep phase syndrome, non-24-hour sleep wake disorder, etc), and their seriousness when chronic sleep deprivation results. Too many doctors discount the extreme fatigue, and think that simply sticking to a schedule will cure a circadian disorder. It will not. The next step is direct treatment of the sleep disorder, along with the recognition that, for some individuals, treatment fails and the patient will have to live on his body’s natural schedule rather than one imposed by society and employment.

    We estimate roughly 100,000 people in the UK suffer from lifelong DSPS, and 15,000 from non-24-hour disorder. Too many to be ignored.

    Peter Mansbach, President
    Circadian Sleep Disorders Network

  52. Kathryn Roberts says:

    One of the goals suggested is around being as independent as possible. Housing adaptations are critical in delivering this goal and therefore it is essential that the Department of Communities and Local Government (which is on the list) ensures adequate funding is provided to the Disabled Facilities Grant to allow adaptations to be delivered.

    Other considerations
    1) In service planning, we need to provide holistic, multiagency & MDT and well joined up services. In our experience services which are not joined up cause more money and as well as more suffering.

    Ideally, they need to be commissioned against agreed service standards and provide urgent response.

    2) Flexibility is the key and young people’s / parents view need to be taken in to account.

    3) Services need to provide interventions, in my view, phenomenological ( physical, psychological and social)

    4) Never forget carers and siblings struggles

    5) Culturally sensitive, in line with confidentiality and consent

    6) Awareness of mental health difficulties in all chronic conditions without stigmatizing

    7) Easy access, CPA framework and clear line of leadership and accountability

  53. Dave Marsay says:

    As a carer and advisor to my mum, and as a LTC sufferer, the three big problems are:
    1) lack of advice for people who can afford to pay for care etc, let alone joined-up advice.
    2) when I or my mum have had conditions that the NHS could not afford to treat, but where a short term cost would save long-term problems, NHS staff seem to be reluctant to suggest private options.
    3) when your file is more than a screen full doctors can seem to lose sight (literally) of relevant factors, and I do not always know what is relevant.

    The occassional longer consultation might help.

  54. GMNA says:

    We are a charity working towards improving the quality of lives for people with Long-term neurological conditions (LTNC), and their carers and families. We currently represent 26 Neurological charities/voluntary groups and their users and carers. For many years we have been aware of the issues that people with a LTNC face in their day to day lives. The difficulties that these people face are exaceberated by the lack of adequate health and social care services, the lack of joined up services, the stigma that sometimes surrounds LTNC’s, and the lack of knowledge and expertise about LTNC’s amongst some of the workforce. In 2005 we were hopeful that the introduction of the NSF for LTNC, followed by it’s implementation, would help to improve these health and social care services, encouraging more joined up thinking, better communication and thus improving the qulaity of lives for people with LTNC. Despite the new governement dismissing this document, the 11 Quality requirements listed are still relevant and need to be implementation if the services are to be improved. In addtion, these 11 QR’s (if implemented) would actually help to develop and improve services for all of the Long term Conditions. Some of the most common issues that we hear from our service users and carers is about the lack of service provision (particularly in regards to therapeutic services like physio and neuro psychology) and/or extremely long waiting lists. People often comment about being given a diagnosis and then “left” to get on with it. Very few people receive any supporting information or information packs. Service users also comment on the difficulties they face re adult social care services including housing and benefits. Assessments are often conducted by someone that has no knowledge, awareness or understanding of an individuals condition and what they will need in terms of care and support. People with rarer conditions have to fight harder to prove their “disability” is real and life limiting. They often have to jump through hoops in order to receive the necessary financial support that they are clearly entitled to. In addition some individuals have conditions which are met with a negative response, i.e. not believing that the condition really exists, or that a person really has it. Many of these people are already vulnerable and having to fight for services/benefits can cause alot of distress and anxiety. The delay of awarding services and benefits can also in some cases result in that person going into crisis and admitted to the Acute services and therefore costing more. Mnay people with LTNC would like to be able to work but the reality of the situation is that they often cannot. Most people with LTNC will experience a lot of fatigue and there symptoms vary from day to day. There are not many employers who are able or willing to take on a new employee knowing that they are likely to accumulate a high percentage of sickness leave. Many workplaces are still not disability friendly and smaller businesses will not be able to afford buying specialist equipment or cover for absences.
    There needs to be better training and awareness about LTNC and what that actually means on a daily basis across all services. Communication between health and social care needs to be vastly improved. Listening to the patient – as the expert – needs to be further encouraged and patients should have more involvement right at the beginning of any service re-designs or developments.
    June 2012

  55. P.A.Goulding says:

    Many patients with LTHC are willing and able to become self managers.
    People with LTHC use a disproportionate percentage of the services, the only way to reduce this is to offer the support needed to enable and empower the willing and able.
    This needs to involve not only the patients but also clinicians, for many of whom this will be a radically new and threatening way of working.
    Patients who ask questions!!!!
    It may appear expensive in the short term but as with so much ‘preventive’ stuff the long term savings are enormous.
    Statistically I believe 30+% of us can do it. This will free up the resources to better support those who cannot self manage.

  56. Jamie Hewitt, Government Affairs Manager, National Rheumatoid Arthritis Society says:

    The National Rheumatoid Arthritis Society welcomes the principle of producing a Long-Term Conditions Outcomes Strategy, but remains concerned that the strategy, as currently framed, will not lead to the desired goal of making real improvements to outcomes for this group of patients.

    The recommendations arising from the second day of the accelerated learning event in March 2012 are largely an aspirational wish-list and we would like to see much greater emphasis placed upon producing clear, practical recommendations that make use of the main levers in the new quality system, such as the NHS Outcomes Strategy, the Commissioning Outcomes Strategy, NICE Quality Standards and NHS payment mechanisms such as Best Practice Tariffs, CQUINs and the Quality Outcomes Framework for GPs.

    We welcome action point 12.f in the summary of the accelerated learning event (‘Health and wellbeing boards take responsibility for implementing the LTC Outcomes Strategy, through effective, active localised needs assessment’). However we wonder how Health and Wellbeing Boards will be held to account if they do not deliver on the principles and recommendations set out in the strategy. Moreover, we do not believe that responsibilities to deliver should be confined to Health and Wellbeing Boards. We see no reason why responsibilities should not be extended further to ensure that a proper duty is placed upon all GP Leads for Long-Term Conditions at each of the Clinical Commissioning Groups.

    To support accountability we believe it is imperative that indicators are developed to properly measure implementation and quality and we therefore strongly support action point 12.g in the summary of the accelerated learning event (‘Design consistent measurement systems with local accountability which enable us to know whether people with long-term conditions are living the lives they want’). The strategy should include a clear recommendation for the NHS Information Centre to develop a set of indicators for inclusion in the NHS Outcomes Framework and the Commissioning Outcomes Framework, and for a NICE Quality Standard to be developed, which describes the common features of high quality care that all people with a long-term condition should receive. We note that both the NHS Outcomes Framework and the Commissioning Outcomes Frameworks contain a Domain on ‘Enhancing the Quality of Life for People with Long-Term Conditions’. However, we do not believe that the indicators for measuring quality of life have been well enough articulated in these strategies yet. Evaluation is absolutely critical and consideration should be given to introducing a toolkit to enable patients and patient organisations to approach Health and Wellbeing Boards and Clinical Commissioning Groups to assess whether the strategy is being implemented.

    We are particularly keen for the new Long-Term Conditions Outcomes Strategy to include action point 12.j (‘If person is not diagnosed within 12 weeks they have a right to an urgent referral to speciality diagnostic service’). This is because research for diseases such as Rheumatoid Arthritis shows that there is a “window of opportunity”. Those patients diagnosed and started on appropriate treatment within 12 weeks of symptom onset stand a much better chance of achieving remission, and hence altering the course of the disease (van der Linden et al, Arthritis and Rheumatism 2010 (62) 12:3537–3546). NICE also recommends referral for any person with persistent suspected synovitis, and urgent referral where there has been a delay of 3 months or longer between onset of symptoms and seeking medical advice (NICE Clinical Guideline 79 – Rheumatoid Arthritis, 2009:7). However, despite this, less than half of people with RA are referred to a specialist within 3 months of onset of symptoms (Services for People with Rheumatoid Arthritis, National Audit Office, 2009:18), even though early referral and diagnosis could generate savings of £2 million annually for the NHS (Services for People with Rheumatoid Arthritis, National Audit Office, 2009:22). We believe that a commitment in the new Long-Term Conditions Outcomes Strategy, appropriately cross-referenced to other quality levers, could help improve rates of early diagnosis for RA and other forms of inflammatory arthritis.

    Action point 12.h (‘Timely access to appropriate information and advocacy that enables the person to exercise choice and control wherever they are’) is also to be welcomed and we therefore believe that the new strategy should include a commitment to provide all people with a long-term condition with access to an electronic patient record, to reflect the ambitions set out in the Information Strategy, as well as to include a commitment to produce an Information Prescription for long-term conditions to help ensure newly diagnosed people with long-term conditions have access to relevant information in a easily digestible format. It was also promised some considerable time ago by the previous Government, by Lord Darzi, that everybody with a long-term condition would have access to a care plan, and this has not happened yet. We would therefore like to see the strategy include a firm commitment that all patients with a long-term condition have a properly structured care plan, which will enable them to exercise greater choice and help them to make more informed decisions about their care.

    We also believe that the themes emerging from the strategy so far have tended to overlook the complex conditions that require specialist input. For example, despite talk of establishing a cross-departmental working group, there was no mention in the write-up of the accelerated learning event about linkages to welfare benefits and social care. There needs to be much more detailed consideration in the strategy of the roles of practitioners in supporting patients, and the need for early intervention and preventative work.

    Lastly, we remain concerned about the balance of the strategy, in terms of its referencing to general principles versus being condition specific. If the strategy is cloaked in too general terms then our fear is that it will prove to be harder to measure implementation and also miss an important opportunity to help mobilise activity around certain clusters of long-term conditions which have been historically overlooked, such as musculoskeletal diseases. Musculoskeletal diseases remain a major area of NHS expenditure, comprising a separate programme budget which in 2008-09 consumed £4.2 billion, which continues to expand rapidly. In spite of this, musculoskeletal diseases have never been a priority for NHS improvement. Although a Musculoskeletal Framework was published in 2006 by the Department of Health, it did not carry any formal standards, there was no funding attached to it, and no clinical lead was appointed to help drive forward the recommendations. Including some more specific recommendations in the strategy in relation to musculoskeletal diseases would be synergistic and help to offset some of the sectors ongoing concerns.

  57. Simon Lawton-Smith, Mental Health Foundation says:

    The Mental Health Foundation is the UK’s leading mental health research, policy and service improvement charity, with offices in England, Scotland and Wales. We are committed to reducing the suffering caused by mental ill health and to help everyone lead mentally healthier lives. We help people to survive, recover from and prevent mental health problems.

    The Mental Health Foundation has called for the better integration of physical and mental health services in the light of the huge numbers of people across the UK not just with a long term condition (LTC), but with comorbidity or multiple morbidity – often including mental health problems.

    Mental health problems such as schizophrenia or bipolar disorder or chronic depression can also be LTCs themselves. Poor mental health is associated with an increased risk of LTCs such as cardiovascular disease and diabetes. Good mental health is a known protective factor against these and other long term conditions. Poor physical health, including LTCs, also increases the risk of people developing mental health problems.

    The evidence is clear, as summarised by the Royal College of Psychiatrists in No Health Without Public Mental Health (2010):

    Depression is associated with 67% increased mortality from cardiovascular disease, 50% increased mortality from cancer, two-fold increased mortality from respiratory disease and three-fold increased mortality from metabolic disease.

    Rates of depression are double in those with diabetes, hypertension, coronary artery disease and heart failure, and triple in end-stage renal failure, chronic obstructive pulmonary disease and cerebrovascular disease.

    Depression almost doubles the risk of later development of coronary heart disease. Increased psychological distress is associated with 11%-increased risk of stroke. Depression predicts colorectal cancer, back pain and irritable bowel syndrome later in life.

    People with schizophrenia and bipolar disorder die an average 25 years earlier than the general population, largely because of physical health problems. Schizophrenia is associated increased death rates from cardiovascular disease (two-fold), respiratory disease (three-fold) and infectious disease (four-fold).

    The Foundation would therefore like to see a LTC Strategy that (among other things) makes clear the link between LTCs and mental health, and contains specific outcomes around

    a) improving the mental health of people with LTCs, and reducing the risk of comorbid mental health problems
    b) reducing the risk of developing LTCs among people with mental health problems.

    We would also want a link to, or overlap with, the Public Health Outcomes Framework that suggests an indicator on ‘mortality rates from CVD and chronic respiratory diseases, which will be influenced by improvements in the mental health of people with these conditions’; and the NHS Outcomes Framework indicator of ‘reducing premature death in people with serious mental illness’.

    To help achieve these outcomes, the LTC strategy should specify a requirement of

    • regular physical health checks and accessible physical health care for people with severe mental illness
    • routine assessment of the psychological needs of patients suffering from LTCs.

    This is an area that has traditionally been overlooked, with either a mental illness diagnosis ‘overshadowing’ potential LTC issues, or a LTC diagnosis ‘overshadowing’ mental health issues. This fails to take into account the strong evidence of the inter-relationship and connectivity between physical health problems and mental health, and increases the risk of both LTCs and mental health problems. The strategy needs to ensure that all staff supporting patients with a primary diagnosis of an LTC or a mental health problem are fully aware of the connectivity between the two and are able to facilitate assessments and, where there is an assessed need, care and treatment. This is a matter of clinical training as well as ongoing professional development.

  58. Suzzy says:

    My daughter was diagnosed with Myasthenia Gravis (MG) aged 11. I appreciate that she has a rare condition but we have found the lack of knowledge in G.P’s and also hospital nurses to be a concern. More training needs to be provided in how to spot the signs of ‘rarer conditions’ so that treatment can be provided more quickly and before it becomes life threatening. Also so that nursing staff can understand the vital importance of medication at a specific time, not just when they remember to bring it.
    More support for families would be a big help, especially when you have to stay away from home when your child is in a specialised hospital for their condition. Two parents to a bed in this instance would help or at least have a room in a parents area for those who do not live locally. Not all hospitals are lucky enough to have a Ronald McDonald house attached to them, certainly we were not lucky enough when our daughter was in hospital. It is not acceptable for one parent to be miles and miles away if there is an emergency crisis in her condition.
    School brings another challenge, with MG the symptoms can vary throughout the day and be better on some than others depending on tiredess, stress, when medication was taken etc. Trusting schools to give medication on time, to understand her condition and make all her teachers aware is an ongoing battle. This was easier when she just had one teacher but the move to different teachers for different subjects at high school has caused problems.

  59. Chris Thomas says:

    I look forward to being kept informed of the the implementation of the ‘Developing the LTC Outcomes Strategy’ drafted from the NHS Institute for Innovation and Improvement event, on 14-15 March 2012. The ambitious aims for 2020 are exciting if they receive cross-party support?!
    An integrated pain management strategy would also lend much support, collaboration with NICE to develop the ‘specific’ & ‘generalised’ Pathways for health professionals would be a focus for this development.

  60. Gemma Scotcher says:

    BIVDA welcomes a cross-cutting long term conditions strategy but also acknowledges that specific conditions will require either their own strategies for their own dedicated sections in the cross-cutting strategy. Given our organisation’s focus, our response focuses on issues relating to diagnosis. 70% of clinical decisions are based on the results of laboratory or point of care tests using in vitro diagnostic (IVD) products. Diagnostics can be a key factor in patient experience for patients with long-term conditions, especially when they enable independent management of care from the home.

    A significant problem faced by patients with long term conditions is that they require regular testing and treatment. This can mean regular visits to hospitals or clinics. This can be tackled by shifting the management of long term conditions into the community or home. This can reduce the need for travel for immobile patients and save NHS resources. Where possible, GPs should offer point of care testing to reduce the burden on the patient in accessing tests and in receiving their results. This could also be provided in other community settings such as pharmacies.

    Although diagnosis is perhaps the most established reason for performing a test, it is certainly not the only one. Diagnosis is just the start of a pathway which can lead to tests being used to monitor the progress of treatments. The most established use of diagnostics allowing patients to become experts in their own care is in the self management of diabetes. Testing strips and blood glucose meters provide patients with blood glucose level readings. This then allows the patient to alter their diet, exercise or medication as suits them individually. This helps to keep them out of hospital for longer, working to prevent complications brought on by an unmanaged blood glucose level. Although self-management is most established for diabetes, we expect to see other long term conditions incorporate self-management in the future.

    Patients should be made aware by health care professionals of the clinically appropriate options available to them. Some patients may wish, for example, to have their phlebotomy (blood testing) carried out in the community. It is therefore essential that patients and care providers have access to accurate, clear and personalised information—especially those managing a long term condition. Information on available treatments and tests, coupled with detailed medical history and information on their conditions will not only allow patients to make decisions about their care. It will also give local healthcare services a clearer picture of each patients care requirements and preferences. Knowing that a test was undertaken at point of care will avoid it being duplicated at referral stage, for example.

  61. Jon Burke says:

    NAVCA is the national voice of local support and development organisations in England. We are Voluntary Sector Strategic Partners with the Department of Health.

    We believe that the Long Term Conditions (LTC) Strategy should be written from the perspective of the social model of disability. In simple terms this means that it is the services, facilities and opportunities available to a person with a long term condition that needs fixing, not the individual themselves. In this case we strongly support the idea of the strategy being cross-government and not one that is the responsibility of the NHS or Department of Health. We would like to see this cross-sector approach also taken when the strategy is implemented at local level.

    We agree that the strategy should be focussed towards people at risk of, or in the early stages of developing a long term condition, but we do not want this emphasis to detract from support for people with existing LTC’s. There should be just as much focus on reducing deterioration or maintaining a stable condition.

    We hope that the strategy will promote the enormous contribution local voluntary and community organisations play in supporting people through prevention, early diagnosis, coping with changing situations and keeping existing ones stable. We also hope the strategy will help this work to be increasingly recognised and supported at local level.

    We agree with and strongly support all those other comments which have stressed the need to enable people with LTC’s to be given much greater and easier access to self care and to manage the choices and responsibilities this will bring. Again, local voluntary organisations can play a key role in providing these opportunities.

    We believe that the role carers play in supporting people with LTC’s is rarely acknowledged early enough and that any support given to enable them to fulfil their caring role is frequently inadequate. We therefore hope that the strategy will call for a drastic improvement in this situation.

    Jon Burke
    Health & Social Care Policy & Development Advisor, NAVCA

  62. Nicole Crosby-McKenna says:

    Epilepsy Action, the UK’s leading member-led epilepsy charity, aims to improve quality of life, represent and promote the interests of the 600,000 people living with epilepsy in the UK. Epilepsy is an individualised condition, and there are more than 40 types of epilepsy and seizure types. How it effects one person can differ dramatically from how it affects another. Like any long term condition, it can have a detrimental impact on education, employment, social mobility, social and family life.

    The treatment, care and social/educational support required is very individual, even among people with similar conditions and backgrounds. For this reason the strategy must have the individual at the heart of it, and develop pathways that deal with LTCs holistically (health, care, employment, education, benefits and housing). We welcome the Department of Health’s push to encourage a joined up approach among different professionals and agencies.

    In broad terms people with any long term condition need:
    • Quick, accurate diagnosis of their condition. This should be a priority issue for the LTC strategy. Effective diagnosis (and thus treatment) reduces the impact LTC has on the person. Timely diagnosis requires robust referral pathways between:
    o GPs and specialists physicians
    o Emergency departments, GPS and specialists physicians
    o Specialist physicians and those performing diagnostic tests,
    o Primary, secondary and tertiary care.
    • An individual care plan. The care plan will document all care and treatment decisions made between the patient and their care professionals, and aides the management of co-morbidities.
    • All individuals with long-term conditions should have regular and timely access to information about their condition and their treatment. This should be embedded in their care package and should be a consideration at each stage of their care pathway.
    • Empowering to manage their condition, treatment and care. This requires:
    o Their opinions being invited, effectively heard, acted upon and respected by the professionals involved in their care
    o Timely access to meaningful and accessible advice and information (including information on risks and importance of compliance with care and treatment prescribed)
    o Presentation of different care/ treatment option and benefit / risk profile of those options
    o Time to digest information and make decisions (where possible)
    o Information about relevant patients groups and support organisations
    o On going access to support to self-manage their condition and notify their physician of important changes or symptoms.
    • Effective treatments and treatment reviews. All individuals with epilepsy should have a regular annual structured review, carried out by a healthcare professional that has attended an epilepsy training course within the past 5 years or can demonstrate equivalent experience from CPD. At the review, individuals should have access to: written and visual information; counselling services; information about voluntary organisations; epilepsy specialist nurses; timely and appropriate investigations; referral to tertiary services, including surgery if appropriate.
    • More robust referrals for people with poor seizures control to investigate the use of VNS, ketogenic diet and brain surgery. The potential benefits and reduced costs in the longer-term outweigh the high initial cost of the treatment.
    • All patients should have access to the relevant multi-disciplinary team, including access to specialists and to neuropsychological services to evaluate learning disabilities and cognitive dysfunction, particularly in regard to language and memory where relevant. Timely referrals to other practitioners to manage any other co-morbidities or areas impacted by their condition (for example pre-conception counsellors, mental health professionals, falls specialists, geriatricians, occupational therapists, social workers).
    • During adolescence a named clinician should assume responsibility for the ongoing management of the young person with epilepsy and ensure smooth transition of care to adult services, and be aware of the need for continuing multi-agency support.
    • Better implementation of condition specific NICE clinical Guidelines (ie NICE Clinical Guideline and NICE Quality Standards) across all hospitals, trusts and CCGs, to reduce wide variation in quality of services experienced by our members.
    • There should be a shared protocol between and accessible to primary and secondary care, with a clear pathway of care that enables information to be shared upon hospitalisation. There should also be robust transitional care pathways between
    o Paediatric and adult services
    o Adult services and geriatric care
    o Hospital, community care, local authorities and social care providers.
    • Community pharmacists to be better utilised within the LTC strategy. As an on-going source of support and advice on issues such as: how to take medicines, aides and tips for improving compliance, potential interactions between treatments and contraceptives and other medicines.
    • Information and data should be retained by commissioners and clinicians on key output and outcome indicators. For epilepsy, this should include number of unplanned admissions, number of people with a diagnosis of epilepsy, waiting times for access to specialists and tests, perceptions of the epilepsy health service, and any other relevant information that aids service development and evaluation.
    • We welcome greater focus on outcomes – with the most visible outcomes for epilepsy being seizure-freedom rates, rates of unplanned hospitalisations and incidences of epilepsy related deaths. We believe these are suitable measures to be included in any Long Term Conditions Strategy. Further evidence information on the background to these measures is available from Epilepsy Action.
    • Carers and family members (where appropriate) to receive support and information about care planning, how to access respite care / short-term care schemes (ie day car, play schemes) / social services help, advice on eligible benefits open to carers and the disabled person, advice on educational support (when the person with disabilities is under 18).
    We would also like to repeat the call of Melissa Echalier (Action on Hearing Loss) for this strategy to make clear links to and inform the content of the Public and NHS Outcomes Frameworks, as well as the Commissioning Outcomes Framework, and the Quality and Outcomes Framework used by GPs surgeries.

  63. Sophie Matthew says:

    I have ankylosing spondylitis (AS) which is a painful, progressive rheumatic condition characterized by inflammation of the spine. It effects around 200,000 people in the UK. AS is a musculoskeletal condition (MSK) and, despite the fact that these conditions account for the fourth largest area of spend in the NHS, they have failed to get the attention they deserve. Musculoskeletal conditions such as AS must be recognized as long term conditions and treated accordingly.Sadly this is currently often not the case.

    Self care is crucial in long term conditions like AS,as well as being cost effective for the NHS, and yet often patients are not provided with information to support self care and opportunities to work with voluntary organisations which can help with this are often not taken. In terms of AS regular exercise is a cornerstone of treatment and also reduces the need for unplanned outpatient appointments. The National Ankylosing Spondylitis Society (NASS) provides a range of support and information as well as running a network of over 80 branches around the UK which provide access to at least 40 hours of group physiotherapy and hydrotherapy a year, almost 7 times the average number provided by the NHS. These therefore provide a resource for patients in terms of the self management of a long term condition which should be recognized and used by commissioners. Commissioners should provide information on self management to patients with long term conditions such as AS, and information on voluntary organisations which can provide support with this.

    MSKs also account for nearly half the overall burden of disease on people’s quality of life and they are the second biggest cause of sickness absence, accounting for for the loss of 10.8 million working days a year, and 22 % of long term incapacity. It is, therefore, crucial that they are recognized and accounted for in long term conditions strategies.

    Research by NASS published in the report ‘Working with Ankylosing Spondylitis’ has shown that AS has a great impact on work in terms of productivity, job satisfaction, career progression and job security. Over half of respondents to the survey of our members identified work as the area of their lives most effected by their condition. The survey also showed that people who receive effective treatment for their AS are more able to stay in work and be productive. This underlines the importance of swiftly diagnosing people with long term conditions and giving them access to appropriate treatment as soon as possible.

    • George Coxon says:

      The key principle in the mgt of LTCs must be greater effort and energy to support people live full and active lives and KPOOH – keeping people out of hospital as much as is safe and possible – particularly those with dementia – at least 1:4 hospital beds are occupied by someone with cognitive impairment or dementia and we must do more to address this. A huge proportion of dementia sufferers have a co existing LTC. With over 10m people over 65yrs of whom well over 1m are over 85yrs the imperative must be a greater collective ‘can do’ approach to better diagnosis and proactive support. Residential care is part of the solution to the means of giving people choices and a safe, high quality of life in older old age or indeed for some younger old age where disability, LTC instability and isolation are present. This consultation I hope will concentrate on how KPOOH can become the new acronym that focuses our efforts both for quality of life reasons and cost factors. Clinical Commissioning Groups – the new healthcare custodians charged with leading and prioritising healthcare outcomes are now working hard to deliver better outcomes and sort out their plans to save money under the so called QIPP agenda – meaning Quality, Innovation, Prevention and Productivity in doing so will be expected to save 20% of the £106b NHS budget. 10% of the total NHS spend alone is attributed to diabetes where over 1,000,000 hospital admissions take place each year. The overall admission patterns is that 65% of all admissions are emergency or unplanned care. – so LTCs account for a huge volume of hospital activity most of which can be both anticipated and prevented. I do hope there will be new thinking on actions from this LTC renewed focus. Many thanks for the opportunity to have my say and attempt to influence next steps.

  64. Peter F Chilcott says:

    Any general solutions should not rule out the possibility of work. As a quadriplegic I would not meet any criteria intended to test my ability to work.
    However, after 10 years of Open University study and voluntary work I started my own business, at one time employing 30 people, before closing it 2007. I still, at 67 years, work part-time and continue to pay taxes. I also work with several local groups. I know I am not alone – I have met other wheelchair living business people. Many conditions do not affect mental acuity, are stable, and allow a positive attitude to achieve a great deal. Please try not to prevent this positive attitude being expressed.

  65. Roy Johnson says:

    The NHS diabetes bill is running at £10 billion/yr, 80% of this is spent on complications. Many organisations are stressing prevention by education and timely checks on a yearly basis. This would reduce the bill and give people better quality of life. This said the Expert Patient Program is being cut back and not available to many people now. Seems a big loss.

  66. andrew moore says:

    General comments

    The method chosen to seek views will exclude many people who don’t have access to the internet or those who prefer to receive information on paper. The visually impaired representatives were unable to access the information easily as accessible versions were not apparent. In addition the timescale for responding was short so there wasn’t time to produce large print or Braille versions.

    Further more the purpose of this exercise to gather opinion was not clear – is it consultation or not? What is the benefit of asking for informal views?

    It is vital that all levels of the system are informed by the shared goals and the priorities identified in the strategy. This must be from the cross Government groups through local authorities, NHS and other service providers – it must inform & change practice.

    There is already extensive research and perspectives from users that have been gathered by interest groups and organisations, including work by the MS Society, the RNIB etc. Also the findings of the Dilnot Review – all of these sources of evidence should inform the long term conditions strategy.

    Comments on the current changes in the health and social care provision

    People with long term conditions are the experts about their conditions – not the professionals

    Review processes for Independent Living Fund & other entitlements do not always allow people enough time to prepare for meetings, e.g. being given two days notice of a full review of entitlements and asked to submit paperwork and medical reports etc.

    Many people with long term conditions are scared about the implications of the changes to the benefits system. Reductions in benefits and support hours seriously affect people’s ability to achieve equal chances and quality of life.

    The personalisation process is flawed – some of the resulting cuts to services may potentially endanger people’s health and in extreme cased their life, e.g. removal of overnight care for someone with a history of frequently occurring epilepsy.

    Aside from the implications for individuals the cuts may be false economy as they could lead to expensive legal challenges, or at a lower level, local disputes that take time and staff resources to manage.

    Many people have multiple conditions or symptoms which fluctuate daily and at different times – neither the health service, care services nor the benefits system seems able to account for any level of complexity. People are compartmentalised and treated by condition, as the health & social care sector is dominated by a reductionist, medicalised model. There is a lack of a whole systems approach that would treat the person as a whole.

    As more services move out of local authority provision to contracted and commissioned services the local authorities should take on an impartial advice role to support people – especially those new claimants.

    Comments on shared goals

    The statements here seem to relate to people who are ‘well’ or at least not yet diagnosed. The health and social care systems are not yet ‘joined up’ and people suffer because of this. The current cuts in budgets are actually reducing the potential for Government to achieve the shared goals, such as improving the emotional and social health of people with long term conditions. Poor emotional health and social contact will exacerbate physical health conditions and will be counter productive to maintaining wellbeing & independence.

    On work – the level of unemployment in the UK currently makes it very hard for well, able bodied people to find employment and those with a disability of limiting condition are even less likely to gain work. Additionally in our experience employers are reluctant to carry the additional cost of employing someone who needs support.

    The access to work scheme worked really well but we are aware that some disabled people employed via this route are having hours cut to make room for other unemployed people.

    In summary the goals are good as principles but there are no clues here as to how this is going to happen.

    Responses to the specific questions

    What problems you face, either living with a long term condition or in your work affecting people with long term conditions, and how do you think these problems could be tackled?

    The severity of cuts should be reconsidered – people with substantial needs are losing care hours and where this support is cut is becomes impossible to fully use the entitlement granted through a personal budget.

    Correct implementation of personal budgets (as originally intended) would maximise choice and would increase wellbeing. Personalisation was working really well for many people but local authorities are now restricting or at best limiting choice.

    Social care providers are in competition – there is no benefit to them to collaborate and they are able to pass responsibility for people around the system to reduce their costs.

    How local services can work together to make life better for people with long term conditions?

    More imagination about the use of personal budgets. Adopt a whole system approach, map and share resources and ‘require’ local authorities/service providers to collaborate, pool budgets and take shared responsibility for outcomes.

    Make best use of the assets in local areas, e.g the skills and talents of individuals & communities, such as community buildings, sports clubs, groups and societies.

    How people with long term conditions can be experts in their own care and how services can be based on their individual needs?

    All conditions change daily – they fluctuate. People have good and bad days. The system of assessments and those that administer it cannot account for this level of complexity. It is just not flexible enough. The preferred model is to construct a universal model to fit everyone into – if you don’t fit you loose out.

    Many people lack the confidence and opportunity to act as experts or to represent their views and advocate for their own needs. Also advocates may not always represent the views of the entire group or condition.

    Your experiences of different ways of working or your ideas about this.

    Some people have a good medical/care team – what can we learn from the good experiences and apply them across services.

    Increase pressure on energy companies to subsidise fuel bills for disabled and older people – because many conditions or being sedentary due to mobility problems means that many people suffer from feeling very cold. We understand that individuals often just go to bed to keep warm – subsequently they become more isolated and may have greatly reduced wellbeing.

    Care professionals need to be advised by individuals and take account of preferences/choice. Don’t apply a universal framework. Try to discover the skills and abilities of people – you may just find efficiencies in this way!!

    The Health and care system needs a fundamental ‘mind shift’ to understand what really makes people healthy – this is not necessarily formal service.

    What common aims you think government departments should be signing up to, relating to long term conditions.

    Genuine involvement
    Better awareness = equality
    Person centred approach
    Commit to whole system approach
    Adopt social model – challenge medicalisation
    Outcomes not outputs

  67. Enid Bensa says:

    4 points:

    1. The Expert Patients’ Programme – self management course – not only gives participants information about medical and other aspects of managing a condition but it gives strategies for identifying and ‘working on’ problems.

    One important plus is that participants work together in most situations and often make relationships which continue to provide mutual support.

    Because the sessions are confidential participants discuss issues which they might not raise with health proffessionals so that tutuors build up a picture of the experience of patients which could give useful input into decision making..

    the course should be on offer to relevant patients.

    2. Someone I know with a pastoral role in secondary education asked me to help her find access to ways in which young cares can be supported. Obviously support for carers is vital but there areparticular issues for young – sometimes very young – carers.

    3. The criteria for measuring health care include the issue of life expectancy. Whilst this is important in many discussions in which I have been involved participants have said that we need QUALITY of life not just LENGTH of life.

    4. An issue which can arise is difficulty in preparing healthy food. An organisation to which I belong has expressed the need for a short, practical course to help people to eat helthily with as litlle effort and cost (income is often very restricted) as possible. An academic at one of our localuniversities siad this could make an interesting topic for some post graduate students.

    Although I have fairly wide experience of IT I had to be advised that I needed to scroll down through all the existing messages to be able to send my own. Is this a helpful design of this part of the website? Apart from anything else it takes ages!
    Hope we get something better from the design of the strategy which comes out of the consuktation

  68. Sarah Collis says:

    ■The biggest problems people face when living with a long term condition is the lack of support and easy to understand advice when you need it – i.e. when you are able to take in what you are being told and when you are ready to action the advice. The next problem is actually recevieving a joined up service which supports you as the person living with the condition to take as much control as possible. Help to manage your own condition, being given clear expectations of what you will receive from your health care professionals and what will be expected of you. Changing our behaviour about self care and self management needs a sea change of attitude both by professionals and by patients to take more responsibility where they can and to be signposted to support to enable them to do it effectively. The experience of Self Help Nottingham is that signposting to a local support group offers peole more ‘choice’ to find out form others what helps and what hinders and to share experiences and not feel so alone.
    Providing people with more self management information and courses supported by longer term group support is vital to ensuring people are given a realistic chance of changing lifestyle behaviours which effect thier LTC and which can value the individual as the expert in their own needs.
    Care pathways need to explore the whole individual to ensure that there is a more holstic view of patients needs and support services, ones which are culturally and peer appropriate to maximise the impact of support services.

  69. David Butler says:

    My wife Sybil and I live in North Devon. Sybil was diagnosed as suffering from MS about 20 years ago. Since then her condition has gradually deteriorated (she has primary progessive MS) so that matters such as personal care (air washing and bathing etc), communication (through talk and writing etc), walking, eating and drinking etc are now becoming difficult.
    Apart from regular contact with our own GP and an annual meeting with the consultant neurologist two other ‘contacts’ are invaluable. The first is the MS nurse who for consultation and help is available at virtually any time. The second is the trained physiotherapist who with an assistant runs weekly activity classes for the local North Devon MS group. As my wife’s carer I value enormously the MS nurse and the physio without whose help and advice (which I regularly seek) I would find life and the quality of help that I can give my wife almost impossible.
    What ever happens to the Dept of Health in the coming months/years I urge that funding for Specialist Nurses and Physiotherapists, particularly in relation to the treatment and care of MS sufferers be retained.

  70. Mel says:

    I was born with Spina Bifida and now have Fibromyalgia. When diagnosed I was referred back to my GP by the rheumatologist and have very little support for my condition ever since. I take Tramadol slow release tablets but still have breakthrough pain. I manage to work part time and have a care package from social services due to limitations caused by the Spina Bifida but recently had a review and had my funding cut so I can no longer go swimming, the only exercise I can do.

    Providing support to people with lower level needs would help to slow down or even prevent deterioration and so save money in the long run. Without this support people could end up needing a lot more care/funding to manage when their condition becomes critical.

    I also feel people with LTC need access to information about alternative treatments to enable them to manage their conditions. Dosing people up on pain killers seems to be the easy option.

  71. Christine Hughes says:

    The long term conditions strategy must ensure that the management of pain is central to its goals on managing peoples health and to prevent long term conditions developing. Paul Burstow acknowledged that chronic pain was a long-term condition in its own right in parliament in February this year, and pain is part of almost all long term conditions. Having pain recorded and treated routinely at each patient contact would go along way to meeting the goals of the strategy, as would good information on services and what is available to the patient. A documented’ flare up’ policy both in terms of health care and employment would also be of benefit to those able to work and help keep them in employment.Hopefully the fact that pain is now part of the quality standard for the Adult Experience of the NHS and the new pain pathways being developed by the British Pain Society, will help inform the strategy and lead to a joined up service

  72. Linda Webb says:

    I am writing here in a personal capacity but drawing on my expereince of our memebrs.

    We face lack of understanding of ME from health professionals. The severity of the condition is routinely underestimated. There is no one with expertise in ME and no specific services for people with ME in Richmond or Kingston.
    Many people with ME especially those who live alone with severe ME experience social isolation.

    Local services can work together to make life better for people with long term conditions by providing a clinical pathway with named local health professional. This is not currently available for people with ME in this area.

    People with long term conditions are experts in their own care so health commissioning needs to build on this working with local support groups. Need to recognise both the specificity and potential severity of ME and that it is a fluctuating condition.

    We need a named professional locally cf specialist MS nurse who can be contacted in person, by phone, by email and provide domiciliary care for people with severe ME. Problem of having to start from the beginning each time you have a consultation with new person

    Because of the cognitive difficulties associated with ME, people with ME need an advocacy service in order to express their needs. Main experience of people with ME is that we fall beneath the radar either of local medical services with housebound people who haven’t seen a health professional for years and under the broadbrush generalisations of central government and commissioning bodies.

    Joined up policy means that government departments need to realise that long term conditions are just that so no three monthly benefits reviews etc. Need some reassurance that benefits are long term not endlessly up for grab. many of our memebrs have suffered severe relapses because of the endless reassessments.

  73. Steven Wilkinson says:

    As a person with Multiple Sclerosis (MS) it is often seen by other people in the best possible light. I am now into the secondary progressive stage and am finding walking any useful distance impossible now and am having to try and sort out ways of supporting my legs/knees. Have had to have support of my parents to buy a mobility scooter to carry in the motability car I now have in order to get around and within work. Accessing many public, council and government buildings has become impossible whereas private enterprises are often going out of their way to accommodate.

    I would love walk more but waiting lists to get electro-stimulation is currently 2 years. Electrostimulation may also reduce the number of times I am falling now (approx 6 times/week) due to spacicity stiffness.

    My toilet is upstairs at home and it is becoming increasingly difficult as the day progresses to get up the stairs. I have had situations where I have had to go outside to relieve myself in the garden but have had crawl out just on hands and knees. I have more or less given up trying to get help with getting stairlift/lift installed as the ticking boxes cannot take into account variable conditions. I am currently working but as the only wage earner in my family there is nothing to spare for things like lifts given it is a two year post. I could get jobs at other universities (non university jobs do not seem to cope well when considering clearly disabled workers) but cannot now move as I require the support of my parents. Using public transport is out.

    Well that is a little input mentioning just one condition that is extremely changeable not just daily but within half an hour. dependent on temperature and brings in symptoms suffered by people with this and other conditions i.e. spasticity and awareness I can suffer seizures.

    I am well aware of what is happening and what needs to be tackled and as such am tending to get things done. There needs to be more help for patients that may not be quite as able/connected or the wrong postcode to get at the very necessary help which I am finding hard but mostly possible eventually.

    I am a scientific rather than medical doctor but often have more knowledge than all but specialists within the medical profession regarding my condition.

    Dr. Steven J. Wilkinson
    June 2012

    • Elizabeth Sparke says:

      I agree with what you say – but would like to add my own insights

      I have arthritis, severely reduced lung function, a blood disorder & an endocrine disorder. I have also had several operations for cancer.

      More joined up care within the NHS & Social Service provision is essential.

      I am currently under the care of four different consultants at the same hospital & there appears to be great difficultly in having appropriate & timely communication between them & myself. If there could be one consultation involving all Specialists, say every 3 months, I would need fewer appointments are get better, faster care. As often one Consultant has to wait for the results or decision made by another Consultant.

      I often have to make repeated visits to hospital on consecutive days to see different consultants. This is exhausting, time consuming and cost me extra monies that my Direct Payments budget does not cover.

      My inner London local authority will not increase my care hours from 17hrs per week, despite the fact that I need over 3 hours personal care per day. This does not include time for shopping, housework, hospital visits, Synagogue attendance, or being taken out to get fresh air and sunlight. I have very low Vitamin D levels because I cannot get out to sit in the sun. This has had a negative impact on my pain & energy levels.

      To give another example, my Social Services Care Plan gives me only 30mins care during an evening visit during which my carer is expected to get me a meal and then put me straight to bed. Social workers tell me this is acceptable. Every other professional I have spoken to believes this is totally inappropriate.

      I use a BiPap machine, which needs setting up and cleaning twice a day. Social Services tell me my carer should not being doing this, despite the fact she has been trained to do so. They have said this should be done by a qualified nurse. But both my GP & Respiratory Consultant said this is not practical, possible or appropriate.

      I live in a flat were I cannot access my kitchen & cannot leave my flat without assistance as the rooms, hallway & front door are too narrow to accommodate my wheelchair and there are steps out side the front door, which cannot be ramped. I also cannot access the garden as there are 20 steps down to it.

      I have been on the waiting list to move for over three years to a fully adapted flat, but there are very few available in my Borough. I have offered to move Boroughs, but have been told this is not possible and that if I did so my care package would not move with me and that I may have to wait for at least three months o be re-assessed. With no access to care in the meantime.

      I have had to purchase my own folding electric wheelchair, with a grant from a Charity as I cannot get a NHS wheelchair, because my flat is unsuitable.

      Recently my health has deteriorated and I now need care during the night as well as during the day. I am waiting for assessment for this, yet I have not been given any information about who is coming to do this and how long I will have to wait.

      If I have a night carer, they will need a room to sleep over in and I only have one bedroom. I cannot find out if and when I move If I will be allowed an extra bedroom for a carer.

      All of the above with the concordant uncertainty causes me stress, has a negative effect on my well being and my overall health.

      So much could be changed with greater co-ordinated care amongst all professional disciplines.

      If I had a basic individual care package, paid for by a central fund, possibly based on the DLA I receive (I am on the Higher Rate for both Care & Mobility – which recognises I need night care) to which I could appeal if my condition worsens and receive extra monies based on the assessment of Nursing and Medical Professionals who see me on a regular basis – not that of a Social Worker (who only sees me for a short time) who cannot possibly understand the complexities of my various medical conditions and the inter-action one condition has on on another – my quality of life would be greatly improved.

      Add to this a statutory duty on Local Authorities to rehouse physically disabled people appropriately within 6 months of a long term condition being diagnosed, and I might just stand a chance of living a “normal” life.

  74. Laura Dunkeyson says:

    Thirty years ago, in the absence of effective treatment, HIV was not a long term condition. However, with the development of antiretroviral treatment, for most people today (as long as they are diagnosed early enough) HIV is a long term condition. However public perception has not kept up with advances in treatment and specific mention that HIV is covered by this strategy would help to challenge misconceptions.

    NAT is the UK’s leading charity dedicated to transforming society’s response to HIV. We provide fresh thinking, expertise and practical resources. We champion the rights of people living with HIV and campaign for change. We work with people living with HIV across the country both directly and via a network of local service-provider organisations. We welcome the opportunity to feed into the development of this strategy.

    People living with HIV face a number of specific issues as a result of their HIV status and it is important these are considered as the strategy is developed. The key issues we believe need to be considered are: the effect of HIV stigma, the impact of fluctuating conditions, the importance of social care and psychological issues, the disproportionate impact of poverty and the need for effective government support.

    People living with HIV still experience stigma and discrimination as a result of their HIV status and it is important that the impact of this is taken into account in the strategy. In previous research one in three people with HIV report having experienced stigma, and half of those who reported experiencing HIV-related discrimination said this had taken place in a healthcare setting. Additionally a poll on public attitudes and awareness of HIV carried out by Ipsos MORI on behalf of NAT in 2010 (http://www.nat.org.uk/Media%20library/Files/Communications%20and%20Media/HIV_awareness_report_2011DOWNLOAD.pdf) showed a significant lack of knowledge about HIV amongst the general public, and highlighted some concerning attitudes towards people living with HIV. Stigma and fear of stigma have a significant impact of the ability of many people living to interact socially, leading to social isolation which can in turn affect their emotional wellbeing and their ability to live well with HIV. Any strategy needs to consider how to combat the stigma faced by some people living with long term conditions such as HIV and the support people need in the face of discrimination.

    Many people living with HIV experience symptoms that fluctuate over time. The lack of consistency and predictability of such symptoms can increase their impact on daily life and make them harder to cope with psychologically. NAT carried out a survey in 2011 of the impact of fluctuating symptoms on people living with HIV (http://www.nat.org.uk/media/Files/Policy/2011/September-2011-Report_Fluctuating_symptoms_of_HIV.pdf). The most commonly reported symptoms were fatigue, depression or anxiety, gastro-intestinal problems, insomnia and neuropathy. The experience of these symptoms is a cause of real distress for many people living with HIV and creates significant barriers to daily living, social participation and work. The long term impact of fluctuating symptoms must not be underestimated and must be taken into account in this strategy.

    The preventative value of social care should also be taken into account in the strategy. The provision of simple and often low-cost social care interventions when people first need them, rather than when they have reached crisis point, has significant benefits for individual health and peoples ability to manage long term conditions. However access to this type of social care is increasingly restricted by local authorities tightening their eligibility thresholds for social care. If people living with HIV do not have access to support until they have deteriorated to the point of experiencing ‘substantial’ needs, their care is likely to be more complex and costly, and have a significant impact on their long term outcomes.

    In addition psychological distress is a significant problem for many people living with HIV. There is a growing body of research suggesting that people with HIV are more likely to experience psychological problems than the general public, and that these problems are more likely to be serious and wide ranging. Depression, anxiety, and suicidal thoughts and behavior are all commonly reported and have significant impact on people’s lives and on their physical health. The need for support to manage distress must be taken into account in the strategy.

    People living with HIV are also disproportionately affected by poverty. Poverty-related support needs, such as housing, benefits advice and financial problems were the most frequently cited support needs in a recent survey of HIV healthcare professionals carried out by NAT (http://www.nat.org.uk/Media%20library/Files/Policy/2011/Social%20Care%20Survey%20June%202011%20FINAL.pdf). The impact of poverty on managing a long term condition, and in particular on managing HIV, can be acute and should be taken into account in the strategy. It is vital that people living with HIV who need it have access to benefits and good quality housing, as well as support to help them get into employment.

    People living with long term conditions, including those with HIV, come into contact with many different government departments. Therefore effective integration of health, social care, welfare and housing services is vital. Simple processes to refer someone to support services and comprehensive, transferable assessments which take account of the specific barriers faced by people living with HIV would improve people’s experiences of seeking support. The strategy should ensure that different support systems are integrated to create a single, simple care pathway.

    This strategy has the potential to significantly improve the lives of people living with long term conditions, including HIV. It is important that the Government adopts a holistic approach to support for people living with long term conditions. This approach will not only deliver the care and support people need, but also generate economic savings in the long term.

    Laura Dunkeyson
    June 2012

  75. Jenni Kirkland says:

    I have a non-clinical programme lead for LTCs within the NHS and one of the key elements we are concentrating on which i would like to see reflected in the strategy is Self-Management programmes for patients. In the US they have a vast range on offer some free and some at cost but i think we are lacking in this department in the UK.
    By educating patients of their condition it not only gives them independence to manage but also helps the number of unnecessary admissions to hospital for issues that could be resolved within the community or primary care.

  76. Astrid Llewellyn says:

    DoB 30.07.40 SRN 1963 (St Thomas’) Bi Polar and, now, Pulmonary Fibrosis. An advocate of the Expert Patient Programme (EPP) courses which give the patient help and support in caring for themselves and coping with their long term condition in the company of others similarly suffering.

    As a participant I found it extremely helpful in giving me the tools to cope and as a facilitator I am inspired by the bravery of the patients and the benefits they gain. Any health programme should include sufficient funding to enable this course to be offered to all in need. This would actually end up as a net gain in the budget – less calls on doctors and social services.

  77. Carol Boswell says:

    One of the main problems at present with any government intervention that affects both myself and my partner is a lack of a holistic approach. We see various consultants for each condition, but not one who can look at us as a whole. If people are going to be given a set amount for long term care, will it look at how many conditions each person has, will there be varying amounts and will some one, look at how each condition can affect another? We would love to work, but over any 12 month period do not have any reasonable amount of time when we could successfully compete in the work place due to our conditions. What would happen to people like ourselves, will provision be made?

  78. Marion McAllister says:

    I have worked in NHS healthcare for over 10 years. My research (with families affected by genetic conditions, most of which are long term conditions (LTCs)) has taught me that patient empowerment can be a valued outcome from using healthcare, even for patients who may not or cannot derive dramatic health status benefits from their use of that healthcare. It is well known that feeling in control of our life and health is psychologically good for us and protects us from depression.

    At present, we know that many patients with LTCs do not comply fully with what their clinicians recommend. But we don’t know whether this is mainly because patients want to comply, but struggle to and want help, or because they have priorities other than maximizing their health status. Of course, most healthcare professionals and their patients together strive to ensure that both better health and better lives are achieved. But sometimes trade-offs are inevitable, and we need to help patients to make those trade-offs in ways that enable them to achieve their life goals. People with LTCs may sometimes be reluctant to comply with what clinicians recommend is good for them, if what is recommended interferes with their capacity to live the lives they want to live, even if they know their lives might be shorter as a result. Instead, people with LTCs want health and social care services that enable them to get on with the lives they want to live according to the values they hold dear. They may value other things more highly than their length of life, such as spending quality time with their family or being available to collect their grandchildren from school.

    So I am pleased that health policy in the UK is prioritising patient empowerment and patient evaluations of health and social care. The new strategy for LTCs is a wonderful opportunity to improve services for people affected by LTCs. I would like to see the new LTCs strategy pay more than lip service to patient empowerment by building in some real assurances that future health and social care service provision will indeed empower patients. It is not enough to show that people are satisfied with their health and social care. Most people, when asked, say they are satisfied. To ensure that new innovations / interventions in health and social care can actually empower people affected by LTCs, requires those innovations to be evaluated on that basis, using measures designed to capture change in patient empowerment levels. Ideally, such innovations should be evaluated on that basis in appropriately designed clinical trials before introduction into service. Furthermore, funding of services should be contingent upon performance against measures of patient empowerment as well as measures of health status. These measures should be designed to capture whether or not the innovations / interventions do, in fact, empower people to live the lives they want to live. Importantly, this approach relies on the ability of clinicians to facilitate good informed patient decision-making, taking account of the goals that really matter to patients.

    One difficulty in adopting the patient empowerment perspective, is the impact this may have on clinician-patient relationships. It may require clinicians to relinquish some control and to become less focused on whether or not their patients comply with health and lifestyle recommendations. This could shift the balance of power away from clinicians and towards patients, and might be uncomfortable for some clinicians and their patients. But this shift in the balance of power is happening in our society anyway, facilitated by the internet, by a service-oriented culture, and by empowerment of patient organisations, who are increasingly setting the agenda in healthcare and in health research. One strategy for clinicians could be to decide to embrace this cultural change, rather than by resisting it, by generating evidence that they can contribute to patient empowerment. Indeed, if clinicians can see evidence that their patients are benefiting by improved empowerment levels, this might help them to cope with their own feelings of powerlessness to improve patient health status in some circumstances.

    Patient reported outcome measures (PROMs) now take centre-stage in implementing strategies to increase patient empowerment. One way of ensuring that new services and interventions do, indeed, empower patients with LTCs is to evaluate those services and interventions on that basis, by using a properly designed, theoretically driven PROM of patient empowerment in appropriately designed clinical trials.

    For further discussion of these issues, please see http://www.biomedcentral.com/1472-6963/12/157/abstract

  79. Claire Madsen says:

    Bristol Community Health OT’s and Physios looked at the Strategy in a team meeting and made the following comments suggestions :

    Overall we support the vision, but it needs to come with funding, guidance and organisation.
    This should not be target driven and provide guidelines that cannot be achieved without funding.
    The strategy should provide minimum standards for commissioners with timescales.
    We think to save money and prevent wastage in the health services generally there should be better management of DNA’s – we suggest a major media campaign from central government.
    We also think the media campaign should cover:
    • Informing patients of what is happening to NHS (in an understandable way)
    • The expectation on patients for their future healthcare
    • What patients can expect from healthcare
    • Some honesty about rationing.

    1 Issues that should be considered:

    • Joined up computer systems – government directed, we still cannot share information!
    • Better information sharing amongst health professionals
    • Equitable access to services – likely to worsen with the scatter gun approach to tendering – there is a worsening post code lottery
    • Improved access to transport for patients
    • Access to specialists in the community setting, including consultants
    • Contact files in patient’s house – patient held records? though controversial
    • Timely and equitable access to equipment especially urgent access; MND patients often don’t get vital equipment before they die!
    • Pressure care services inadequate – joined up thinking required e.g. if a patient qualifies for a pressure care mattress they don’t automatically get a pressure care cushion and are therefore confined to bed!
    • Quality care in residential homes and nursing homes is variable and often poor. Very inadequate provision of equipment. Should be a quality life priority.
    • Scatter gun approach to commissioning.
    • No over all vision / guidance for commissioning. How stop local favourites being commissioned?
    • Better system for patient feedback that is inclusive – all media considered.
    • Access for BME – interpreter access problematic.
    • English language education for all when arrive in UK.
    • Support for carers should be improved and publicised better
    • Paediatrics / adult cross over, very poor e.g. CP patients are often lost
    • GP follow up after hospital discharge is poor
    • Patients that don’t fit in defined groups e.g. Head injured patients with behavioural problems are not supported by MH, nor LD and don’t fit anywhere else
    • Constant change makes communication and knowledge difficult, especially difficult with short term projects and tendering
    • Housebound patients still do not have the same access to care
    • Realistic targets need to be set to start to meet demands of increasingly complex patients.
    • Stop tendered services being allowed to cherry pick patients e.g. they often exclude complex, obese, multipathology patients
    • GP gate holding is problematic – they have limited time, don’t know services / professions, conflict of interest, ageist
    • Access to psychological services / MH services. Easier and earlier access – not just in crisis.
    • Managing private services profits is controversial and how balances value for tax payer money.
    • Self management / empowerment for patients. Some patients don’t want responsibility. Traditionally paternalistic attitudes in staff. How do we educate patients about their condition – takes time – not 7 min consultation.
    • Government needs to educate patients about the expectations on them as well as on clinicians.
    • Need a health advocacy service like Citizens Advice Bureau to help with people who make it difficult to make decisions

    2 Realistic Services
    • Better open access / self referral to specialist services that patients need – allow self management and self expertise. Specialist services e.g. falls classes in the community.
    • Constant Pilots that end – raise expectations and then no service.
    • Short term funding is problematic e.g. 6 month follow up for stroke – not evaluated and stopped.
    • Accessible exercise groups etc. real access for the disabled.

    • Improved working relations and more integrated working with the 3rd sector organisations.
    • Unrealistic expectations from projects / new services e.g. prevention of admission with falls class – can’t measure long term effect.
    • Bariatric management is a nightmare. Not managing obesity in the community, obesity is becoming the new LTC.
    • No investment or money for prevention – clinicians are all fire fighting.
    • Very limited access to day care / respite care etc to address social isolation, carer over burden, psychological care, mitigation of risk.
    • Ensure access for the disabled really is accessible for all.
    • Investment in supporting people with LTC to return to work. Working in partnership with other organisations e.g. job centres working with clinicians and occupational health. Support for business to support people with disability and encourage them to work with them.
    There have been very few responses to this strategy, so are the DoH asking the right people – accessing the right advice and guidance?

  80. Audrey Drake says:

    I have an orphan disease ( one that is rare). My problem is that professionals have taken away my independence and desire to be involved in the decisions about my care. I do not have contact with other people with this illness as they are few and far between and I do not look particularly ill. It is a neurological disease and causes fluctuating muscle weakness which affects all areas of my body especially swallowing, breathing and vision. I find that I am constantly trying to explain my limitations to professionals who are expecting me to be able to do far more than I can. I need a champion who understands my needs and can sort through the maze of medical help that I require.

  81. Pete Moore says:

    Please can the DH, and government follow the recommendations from the Pain Summit recommending more education for patients and also health care professionals http://www.painsummit.org.uk/ The Canadian and Australian Pain Summits also made the same recommendations.

    Also PCT’s / CCG’s are still in the commissioning mode of offering treatment, rather than self-management. This is poor and expensive decision making. I know this because when I was stuck in the medical model back in the 90′s I cost the tax payer £350k

    The other week I sent a proposal to my SHA with a low-cost and effective of activating armies of patients in their communities to learn self-management skills. My emails have been read by never answered.

    The main answer to lowering the cost, time, resources etc or long-term health conditions is teamwork between the patient, health care professional / provider, NHS, Dept or Health and government. I think we are still a decade or two off from this.

    I’m trying to promote this ethos in my own work, but many commissioners as I say are still commissioning in treatment options. In my own area North East Essex, they are offering patients with long-term back pain Osteopathic treatment. They also need to learn self-management.

    Happy to support the DH / government with support and ideas to promote more self-management in the community.

  82. Adrian Harrison says:

    I have epilesy and due to this I struggle in work and found that the management of the organisation did not want to spend time to understand my situation, rather than mental bullying. This however, cause me stress and anxiety which led to me having a nervous break down. I was then made redundant and nearly ended my life. However, by the work I did with EPP, (Expert Patience Programme) my life become much more valuable. To the point I continued to support other poeple who were having simular problems I had previously. Now, I am about to start a new job in higher management. This was due to the support I recieved and had the opportunity to gave out to other and see thier positive progress. To me this is an area which would benifit with more government support. For this would long term help pople with long-term illness become more self-mangement and more effective in society.

  83. Nigel says:

    Thank you for inviting input into the Long Term Conditions Strategy. It is unfortunate that the only way to contribute is by post or by posting comments on an open forum. The ability to complete a structured online survey and/or email would have improved on a low response rate. Not everyone will feel comfortable with or be able to post on line and given that the process is aimed at people living with long term illness, for various and obvious reasons.

    A ‘joined up’ approach to helping those of us with chronic health conditions, in my case HIV and other co-morbidities including severe polyneuropathy, is a worthy aim but not one I think that is achievable without a very significant change in policy across government.

    The first aim is:

     People will be supported to stay healthy and avoid developing a long term condition, where possible.

    This cannot be done while the government remains committed to a punitive approach to work and welfare and remains disengaged from addressing inequalities. Poverty kills people, but before that, it limits their opportunities in life and isolates and stigmatises them. The solution to keeping people with long term health conditions out of poverty may be suitable and appropriate work, when and where it is available, for those for whom it would not have an adverse impact of their health or their ability to manage their condition.

    If people are asked to choose between work or their health the only sensible response is to choose their health and this creates very significant barriers to employment because naturally employers want healthy reliable workers.

    Consequently the importance of a dignified, compassionate, competent and sustainable benefits system and access to good quality housing cannot be overstated.

    The second aspiration is that:
     People will have their conditions diagnosed early and quickly.

    This assumes people are able to access quality health care, consistently and in a timely manner, something made harder by the fragmentation of the health service and the lack of clarity between providers about who does what.
    We need good quality and easily available information to enable us to choose services. In particular, the information available and the means via which it is available should be informed by people living with chronic health conditions. Being informed is only one aspect of having choice. There must be appropriate services available for people to choose from, in particular there must be services within which there is specialist knowledge to ensure people are actually able to choose the right services for them.


     Services will be joined up, and based around individuals’ biological, psychological and social needs.

    This implies a significant degree of co-ordination and planning as well as diversity among providers and the sharing of data between them. Lack of choice of providers resulting from ‘economies of scale’ and issues of confidentiality are key issues here, though the points made above are also relevant.

     People with long term conditions will be socially included, including succeeding in work and education.

    and yet poverty is one of the greatest barriers to inclusion, but a process of impoverishment is what the governments Welfare policy is all about. It is also averse to regulation and it is hard enough to enforce those employment rights those with chronic health conditions currently have without seeing them limited further or removed. There is a perception among many people living with chronic conditions that the government is not on our side, something too often reflected in the media.

    Social inclusion also means addressing the issues of stigma, prejudice and discrimination, firmly and consistently and not relying on those on the receiving end to do so either.

     People with long term conditions will be as independent as possible and in control of their lives (up to and including the end of life).

    Without money, no one is independent… those too ill to work have no money and so how can they be independent?

     People with long term conditions will be supported to stay as well as possible

    The best way to ensure that this is achieved is to allow those with chronic conditions to make their health their top priority and to ensure that they do not fall into poverty. Living with a chronic health condition is already a full time job and of course for those with ‘fluctuating conditions’ life is very unpredictable and fragile, it does not get easier the longer one lives with it.

    All of the issues associated with pain, chronic fatigue and ageing with a chronic illness are poorly addressed by the NHS and by the DWP in its processes. However they have a huge impact on the lived experience of many people with chronic health conditions, especially where the cause is not obvious and the official attitude is one of ‘suspicion of malingering’ or at the very least one of ‘irritation’. I appreciate that a degree of scepticism is natural but it is one of life’s constant annoyances when people say things like: ‘but you don’t LOOK ill’ or ‘you could do that yesterday, why can’t you do it today?’ or ‘yes, I get tired too all you need is a good night’s sleep’ Yet how one does that through chronic pain is anyone’s guess, though of course people ask ‘well how much pain are you in? What’s it like? It can’t be THAT bad, I mean your not crying with it’, to which the answer is ‘ No, not in public I’m not’

    Some people can manage their own conditions some of the time…it assumes that they are willing and able to do so and not everyone is going to be in that position consistently throughout their lives. The trend towards ‘punishing’ those who do not, needs to end, there needs to be a recognition that complex life long illnesses require sophisticated, creative on-going solutions. Peer support is vitally important for anyone living with a chronic illness, the preventative value of this and of quality social care is often overlooked, however it is so important not only in terms of keeping people healthy but supporting them in adhering to medication and therefore staying well.

    The social care ‘market’ in the UK is an ‘emerging market’, supply can barely keep pace with demand and overall the standard of care is poor…mainly because providers compete on price and that leads to a low waged and low skilled workforce. Yet these are the very people required to provide very personal and essential services to vulnerable people. More effective regulation may help but it is cost cutting, the ‘drive to the bottom’ that needs to stop, those providing the care need to be compassionate, competent and motivated and paying people a little over the minimum wage doesn’t do that.

    Peer and social care support can only go so far, many people with long term chronic conditions will also need access to psychological support. People living with chronic health conditions are more susceptible to depression and anxiety, therefore ensuring that appropriate psychological support services are integrated into the support provided is vital. By ‘appropriate’ I mean skilled, qualified, practitioners, experienced in providing support to specific client groups.

    Ageing with a chronic illness is a scary thing….because a person with a chronic illness will rarely only have one thing wrong with them, they will often have co-morbidities and this is particularly the case as they age. This makes life a lot more challenging, complex and harder to manage and can be overwhelming both physically and psychologically and this is even harder to deal with if those co-morbidities are unseen or if they are fluctuating because of how they are perceived by others. There is certainly a ‘compassion deficit’ at the heart of many government policies, in practice if not in theory. People with long term health conditions are asked for their input, the government listens but it does not hear though of course one lives in hope of being proven wrong.

  84. Terry Kaye says:

    I’ve had arthritis for over 20 years. I’ve had injections, pain stimulator implant (16 yeas) take opiate based high dose medication & wear an opiate based patch that slow releases the drug through the skin, I use ibrufen topical cream & paracetamol tablets all of this only dents the surface of the pain.
    I’m in constant unremitting pain the side effects of the drugs cause health problems of their own.
    There’s no public money spent on research so far as I know, the waiting period between a GP agreeing that action is needed & an appointment is too great. The time between a consultant accepting that something might be done is too long etc, etc…
    Terry Kaye

  85. Mills says:

    Something I feel needs to be considered, as it is likely to become a much more common situation, is the position of family or friend returning to the uk from overseas to care for loved ones. Currently we have no rights if our normal abode is outside the EU, obviously no carers allowance but more importantly no access to NHS etc.
    Having returned temporarily to care for someone with terminal cancer over the last 2 months I am becoming exceedingly concerned at the stresses being incurred to my own sanity and physical health and the complete lack of rights someone in my position actually has.
    Caring for a terminal patient 24/7 living in unsuitable accomodation in order to do so, doing literally everything for them on their bad days I find there is nowhere for me to turn when my own health is inevitably affected.

  86. Dee Westwood says:

    Access to Doctors who are ready to actively listen and not make you feel like you are wasting their time. Doctors and their receptionists seem to be more than gate keepers. They are the people on the front line who should be accessible and have the capacity to offer unconditional support.

    Self management. What is this exactly? A person with the LTC is the expert on their problems and will have developed strategies that work for them. A way to hear and learn about, a way to try out the strategies used by others might provide hope and better self management.

    However LTC suffers tend to simply manage or get by. Largely the stress of this will result in depression. Or in the worst cases struggle until a crisis point develops.

    Depression and managing it, does become an added problem regardless of the condition on natural personality of the patient. Some will be more resilient than others. Some people benefit from better support systems than others.

    I have just been pushed through a programme of so called individual care. I felt very much like I was part of a tick box culture on a programme made to make certain departments appear to be doing their jobs and improving patients lives. The care was not individual at any point in the process. Having put patients 1 – 10 through this 6 week course, you are then sent out into the community and off the books making it appear that following each course 10 patients have benefited and improved.

    It’s a ruse and simply justifies on paper that these departments are doing worthwhile work. It also means that they write off 10 patients making room for 10 more to come off a waiting list which ticks more boxes in providing care for more people who then are pushed out of the door in the same way.

    I am meant to take away a feeling of general improvement in my health and wellbeing.

    Listen – be actually interested..or make it possible for medical professionals to have time and energy to actually care. Not work to protect their departments and ultimately their jobs.

    Support…. people with chronic issues need to know they are taken seriously, not simply draining the system of resources …

    Appropriate help. HSC is supposed to provide individual care. This is difficult with so many cultures and needs to cater for. So get more resources.

    Offer provision of person centred, humanistic counselling. Not drugs or CBT as a first option. Im not saying drugs or CBT dont help but they are not the answer. A person with a LTC needs the strength to keep facing each day. Provide a way for them to achieve this in an appropriate and caring way.

    Research tends to show the results the drug companies and those who stand to make profit want us to see.

    I realise that providing individual care plans are costly. I realise that care provision has to be planned and measured on what helps the most people, most of the time.

    As a patient I mostly feel helpless. I feel I cant be honest because what’s the point. If I try to seek help I am channelled. Or jollied along. Maybe because care providers have tied hands or no real aid to offer and simply seek to pacify. Goodbye. Next patient please

    This simply doesn’t work. Eventually the patient will give up seeking help and their problems will likely become worse. Later they may pluck up the courage to ask for help again… either that or they will go on suffering on their own, inflicting anxiety on those around them and creating more stress to those who care for them under enormous stress.

    Sadly there is no real or easily provided answer. If there was we would have healed ourselves, believe me. We patients do not seek to be “Non-Compliant”. Some need more help than others to comply, or more help to understand how to comply and why they are doing it. Real goals with success they can feel and experience.

    I think the suggestion to re-assess medications regularly is a great idea. I can see so many benefits in doing this.

    You have to go on asking the questions and it is a credit to you to have a forum for patients to be heard…. however in my experience it is hard enough to see a doctor, let alone have one with time or ability to listen or act.

  87. Keith Fitton says:

    I have a traumatic brachial plexus injury from 2004 resulting in total loss of use in right arm/hand. As a consequence of this neurological injury I suffer constant pain, much of it very severe.I have successfully completed the Expert Patient Programme.

    The basic problem is that the NHS is totally geared to getting people better, using the antiquated medical model of diagnosis and treatment. A complete cultural shift is required to enable services to work in a genuine empowering way with people like myself. The contemporary attitude from professionals towards patients is very often condescending and dismissive. I don’t blame them. This is a systemic failure and is rooted in the dehumanisation of the NHS that has occurred over the last forty years. The solution? Here’s three suggestions for a start:-

    Give long-term patients personal budgets so that they can purchase their own healthcare. Never mind GP’s holding budgets. If the Government is sincere about people centred services then give people the power – i.e. give people the money.

    Give people with a long-term disability a constitutional right of representation on the boards on health trusts and commissioning boards. That way our views would be heard.

    Undertake a radical and far-reaching review of the way nurses and doctors are trained up to and following professional qualification so as to ensure practice is informed and underpinned by the right basic human values of respect, dignity and worth. Some of the way patients are being treated these days is beyond belief. Let’s do something positive about it – right now.

    Thank you for the opportunity to contribute.

    Respectfully yours

    Keith Fitton

  88. Michael Brennan says:

    ‘I have benefitted from insight gained in short sessions viz diabetes and joint replacement/arthritic pain management.
    ‘Aware too of a situation where people with new hip/knee joints lived only at ground level until a monitored return to best practice for all, was initiated.
    ‘UK population at large know the no-smoking campaign zoomed with applied education bringing clarity and personalition in context.
    Obesity now gathers impetus and a new scourge to general health looms and strategic education is an economic and health preservation imperative in context from school infants through parenthood embracing multi-disciplinary

  89. Sally Dunkley says:

    I was fobbed off for years (10) until finally being refered to pain clinic. (not to sort the problem) Once refered I had to wait 4 months for an appointment in which time the pain was so unbarable I felt I couldn’t go on. My GP said he couldn’t do anything because he had refered me and the pain clinic said they couldn’t do anything because I had an appointment and they didn’t have any earlier ones!!!
    Good news is my symptoms are now being treated not just the pain controlled (to a point) , all but belatedly. The staff at the Nuffield Physio and JR neurosurgury are brilliant, but totally overworked and embarrassed by how long it takes to get an appointment.
    The pain clinic at the chuchhill is the same story. All they can do is try and help manage the pain but you have to wait months for an appointment and however hard the staff work they don’t have the resources to stay on top of things.

  90. Marjorie Kent says:


    I have suffered from allergies for most of my life which cause problems all the time, in every aspect of life and this in turn causes depression and anger that you cannot control the allergies. I have had IBS for a number of years and never know when it will flare up or why. Recently I have suffered more with what I thought was IBS but is in fact more serious than I thought. I am having tests to find out what it is and even that might not give me any answers! It could be Crohns disease but they dont know and the tests that I have to have are affected by my allergies!

    The fact that you feel very very ill at times, tired and running to the loo with stomach pains or to throw up causes depression, anger and a feeling of hopelessness !! I even thought that it was all in my mind that I was being a nuisance ! Some doctors and health officials treat you as if you are wasting their time or you are imagining it and dont have time for you and ordinary people just think you are fine because you look well and fit! At times I just want to go to sleep as I am that tired and nobody can understand why!!

    I also feel that I dare not ask if I can go to the toilet first as I might not be able to wait and will end up in a mess!!! I constantly look for places now with toilets and if I cannot find somewhere with a toilet near do not like to go out just in case. I take imodium but sometimes it works, sometimes it doesnt. My life is ruled by having a toilet near- just in case!

    If I bend over in pain people just think you want attention but that is the last thing that I need!!! I just want to be left alone and to have a normal life again!!!

  91. Mark Galvin says:

    I am also a sufferer of the rare neurological condition “Non-24-hour circadian rhythm disorder”. There are different circadian disorders (see: http://www.circadiansleepdisorders.org/ ) but mine is “Non-24″. I should point out that while this condition mostly affects blind people, I am sighted.

    To anyone reading: if you know somebody who has odd or troublesome sleeping issues, please visit the Circadian Sleep Disorders Network link above even if you don’t read what I’ve written below this line. You may help somebody you love or care about to avoid decades of misery.

    Non-24 is hard to explain in a way that anyone who doesn’t have a circadian disorder can understand. It means that my bodyclock cannot sense (or react to – the condition is so little understood that medical professionals don’t seem to know) the change between night and day, and as a result the length of a full day/night cycle for me (it’s different for each sufferer) is not 24 hours but currently closer to 25.5 (it fluctuates quite a lot though, sometimes it seems to be about 24.75 hours, sometimes it can be as long as 30 hours) – the effect of this is that each day, I wake and sleep about 1.5 hours later than the day before. That’s when it’s being consistent. Sometimes it goes backwards. I never know when this is going to happen.

    None of this is something I can override – I did try for many, many years and failed time-and-again, with the side effects of massive sleep deprivation leading to a compromised immune system and constant infections, migraines and concentration lapses amongst several other things.

    When I sleep, it’s generally for the normal 7 to 8 hours – it’s just that I don’t know WHICH 7 to 8 hours it will be.

    It’s apparently like having permanent Jet Lag.

    There are also the times when something seems to go haywire, and I’ll be unable to sleep for a full 24 to 72 hours, and those other times when I’ll sleep solidly for over 24 hours. These occasions can be triggered by stress (e.g. an appointment that cannot –or will not – be rearranged, such as with ATOS) but often I have no idea why they happen.

    There is a huge stigma with the disease as everybody assumes you’re just being lazy or aren’t trying hard enough. They can sleep/wake when they need to, everybody can – it’s natural – and therefore so can you. Just try harder. Have you tried warm milk? Have you tried Niteol? Try exercising. Try not exercising. Try bananas. Don’t eat bananas! Give up caffeine. Give up sugar. Et cetera.

    This horrible disease has ruined my life. I had no idea that I had it, and nor did anybody else. I had solid A exam results at the beginning of senior school, but over time the condition worsened.
    I was so often late at school that I was on detention every week for over 2 years.
    At sixth-form, I barely passed my A-Levels at all. I couldn’t face the thought of failing University so never submitted my application with UCAS, leaving my plans to study Astrophysics to one side.
    At home, our family had constant arguments over my odd sleeping habits and difficulty to wake up at the required times. This went on long past my school years and into my working life.
    From age 18 until 31 I worked, but was sacked from almost every job I’ve had, always with the same reason – “Good worker but unacceptable lack of punctuality” – this includes when I was fired after a long stint working in the NHS. My direct manager and colleagues knew I always made up any lost time and that I worked well, however the senior managers did not care – I was just a number on a screen and that number had too many late marks next to it.
    Nobody ever considered it could be a medical problem. They just assumed I was out partying – I know this, because I heard the talk behind my back more than once.

    My personal life has suffered enormously – how do you hold down a relationship when you’re completely out of sync with your partner? They want to sleep, you’re waking up; they want to go see a film, you’re exhausted from being awake for 30 hours solid; You’re feeling “in the mood” but it’s 4am and they’re fast asleep; they’re feeling “in the mood” but it’s 9pm and you’ve not even had your breakfast yet; they get annoyed when you’re making noise in the house at night (even though you’re doing your best to be quiet) – the list goes on and on.
    Mostly though, for me, are the feelings of guilt when you miss the events that are special in their lives. That’s what’s really ended my long-term relationships. There are only so many times you can oversleep for a birthday/Christmas/St. Valentine’s Day.
    Meeting new people is also pretty much impossible.
    Non-24 also affects my friendships – I missed the funeral of a friend because I wasn’t able to wake up at the right time.
    It’s even put my life at risk – some time ago, there was an explosion in my street. All the houses were evacuated, and my neighbours taken to a safe distance, but I slept through the entire thing. I awoke many hours later to find the road littered with glass and other debris.
    When I spoke to the police officers present, they’d attempted to wake me and had hammered on the door. My neighbours had called my phone. None of it even registered as I was too deeply asleep.
    Luckily there were no secondary explosions or, very simply put, I would not be alive to write this now.

    It took until I was 30 for my condition to be diagnosed, as the medical community simply doesn’t know about it. Before that, I was misdiagnosed with many things including insomnia and depression, and treated for them – to no avail and at great expense, both to me (and my family, and friends) physically and emotionally, and to the NHS in the cost of treatments that could not work as they were not treating the actual problem.
    I attempted to physically knock myself out on more than occasion, simply because I was so desperate to sleep at the same time as everybody else.
    At one point, when I was 18, I was referred to a sleep apnoea clinic. In hindsight it wouldn’t have done much for me, as sleep apnoea is a very different illness, albeit one that can also have fatal consequences, but it may have helped speed up my true diagnosis. As it was, the appointment was for 9am, and was a 2 hour bus ride away. I begged them to make a later appointment but, well, to paraphrase, “computer says no”. I overslept of course. When I called them I was told that because I’d missed the appointment, I would not be getting another and that another referral would be declined.

    My diagnosis eventually came about through pure fluke – when I was about 28, a friend came across a study of circadian disorders in a journal and recognised that the symptoms sounded familiar. She passed the info to me and I found some information on Wikipedia which matched my experiences almost exactly. I’m not ashamed to admit that I cried when I read it – it was the first time in my life, ever, that I realised I was not the only person in the entire world who’s waking and sleeping didn’t seem to work like everybody else’s.

    I took a print out to my GP who agreed that it did look very similar, and from then it took another 18 months before I was referred to a circadian rhythm specialist neurologist. Incidentally, during that 18 months I had a preliminary diagnosis, which the senior manager in charge of my employment termination at the NHS refused to take into account during my dismissal for unpunctuality.
    At my sleep specialist neurology referral appointment, 18 months after the chance finding of the information, I was officially diagnosed.

    It took TWENTY YEARS from the first symptoms to diagnosis and in the meantime my life was hell (and to be honest, other than KNOWING that what I have is real and that it has a name, my life’s not much better now.)

    I continued working in another post, however I finally had to admit defeat just over a year ago, as the health problems associated with chronic sleep deprivation became too much for my body to handle. I can no longer push my body into forcibly staying awake for days at a time in order to be sitting a desk between, what are in this modern age, frankly arbitrary times (e.g. 9am-5pm).

    If I could work to my own bodyclock, I wouldn’t suffer from the sleep deprivation that has effectively ended my career, however no employer will take on somebody who has such an unpredictable schedule.
    Employers claim to be “flexible” but they are not.
    Flexibility to an employer is half an hour or an hour differences, not wildly erratic differences of many hours.

    Even allowing my bodyclock to do as it wishes is problematic as not all the body’s systems follow the sleep/wake cycle. This leads to, for example, problems in digestion, amongst other things.

    I am now unable to work at all, and I’ve had to fight and I MEAN *FIGHT* to get ESA. I had to go through the “medical assessment” done by ATOS and soon I have to go through it all again, just in case my life-long condition has miraculously fixed itself.
    I’m apparently not entitled to DLA, despite having a condition which impacts my life to such a huge degree, and is recognised in the USA as a disability.
    I can’t even get help from Social Services as I don’t fall into the right categories.
    Circadian disorders are ‘invisible disabilities’, and I might as well be invisible as far as the UK Government and the NHS are concerned.
    I have been prescribed melatonin which has to be ordered in from abroad at great expense to the NHS. It can be bought over the counter in the USA.
    I am supposed to be using a lightbox to try and regulate my sleep patterns, however I can’t afford one and the NHS is unwilling to pay for it.

    I struggle to get by financially. At the age of 32 I have to rely on my parents to help me pay for such a frivolous luxury as gas.
    I had to learn how to fix my waching machine as I simply couldn’t afford to have it repaired, and I certainly couldn’t afford a new one.

    My social life is gone – even if I could afford to go to a pub my condition makes it next to impossible. My friends very rarely try contacting me at all now as there is every chance I’ll be asleep.
    I haven’t been on a holiday in years. Stuck in this miserable grey country for years on end with no break.

    Shopping is difficult as I can no longer afford to drive and the nearest 24-hour supermarket is too far to walk with carrier bags holding weeks and weeks of food. I can’t afford a taxi either.

    Even if I could afford a car, I can’t afford the insurance, partly due to my postcode and partly due to having no job – both have pushed the quotes up beyond any reasonable amount. I ran a quote out of curiosity, for a 10 year old 1 litre Renault – the cheapest was £1400/year. The average was £7500/year and the highest was £18500/year.

    When my bodyclock is operating on “night-time is daytime” I can’t even clean the house properly – I live in a Victorian terrace and the vacuum cleaner (any vacuum cleaner) is too loud to operate after about 10pm. Even sweeping the stairs can be heard loudly through the walls.

    Social Services can’t help me with either shopping or cleaning as two of the things they can’t provide support for is… shopping and cleaning.
    It’s not like I want a personal maid, I just want to be able to try and live as normally as possible. I want to be able to wake up and have a cup of tea and not worry that I can’t get any more milk for another 7 hours.

    I’m sorry for such a long message, but this is probably my one chance to be heard. I feel that I’ve been let down so badly with regards to everything about this disease.

    Please help sufferers of circadian disorders and other ‘invisible disabilities’ to regain our lives.
    Make sure the medical community knows that we exist.
    Help us to stop being invisible.

    Mark Galvin

  92. Gabriella Stevenson says:

    1) prevention. I’m afraid that for many conditions there is no prevention. In fact, I’m fed up with people (not doctors) asking why I got ill. Stressing prevention can often put the blame on the patient. I know that some conditions can be prevented and then there is the general keeping healthy aspect too. But stress makes ill people even sicker.

    2) sharing. Sharing is good, but sometimes I wish there was less of it. I’ve lost track of the number of doctors, nurses, etc that are involved in my care. They are careful not to step on eachothers’ toes but the end result of that is that I’m often left waiting for answers and actions (=medication).

    3) early diagnosis. When I got rheumatoid arthritis, I was lucky and happy that my hospital has emphasis on this. But the same was not true for oncology – me and one of the nurses had to chase up my appointment and it took 5 weeks which felt like forever. Early diagnosis, confirmation of what tests suggest (or the opposite, being given the ok) and getting to see a consultant is so important.

    4) independent. Again this can be good or bad. Not everyone can take that responsibility so it must not be a pressure or stress.

    5) control. I doubt this exists. But such is life.

    6) supported. Now this is an area where improvement can be made. Patients require different support so there is no one-way fits all option. I’ve been fairly lucky in getting support. EPP was offered to me and that was so good – I only wish it had been available earlier. Physio, I had to chase and chase, but I did get access in the end and that changed a lot for me. It should be easier for patients to get their preference heard.

  93. Kevin Davies says:

    Looking back the kindest moment I had with the sevices from the NHS was when the Doctors said there was nothing they could do for me with my condition.
    I was very depressed and at the time I did not understand their position or how to get myself better.
    All I wanted to do was to get well again. Some Health Service we got here, I thought.
    On top of poor health was poor mobility, social isolation, confusion and dismissal from my job with dramatic decrease in income.

    Eventually I found a way.

    I have also volunteered with the Expert Patient Programme that taught me a lot about coping with my condition, but I wanted to get well again.

    With further research I started to figure out how important nutrition was. I am not talking here about your five a day and no cream on Sunday, but the beneficial effects of taking therapeutic levels of Vitamins, Minerals and Herbs.

    I wanted to get well, the EPP was too prescriptive for me.

    If the Doctors, Consultants, Health Care professionals had added the importance of therapeutic levels of vitamins and minerals to their education, not just medicine with the idea of a pill for each ill, I have no doubt that my condition could have stabilised a lot sooner and my recovery would have been greatly hastened.

    If the Department of Heallth are serious about their aims to keep and get people well, they need to learn some lessons from the Orthomolecular Medicine for Everyone, Megavitamin Therapeutics for Families and Physicians and send all the people they can to learn and develop their practice to get and keep people well not just stable and managing their condition as best they can.

    Please feel free to contact me for further information.



  94. Paul COOK says:

    I have been diagnosed with COPD (asthma and emphesma) for 3 years now, I know the condition will not improve and have been lucky to find a stabilising medication. What I find frustrating is having to go to my surgery every month for my inhaler prescription. I would like to have a ticket prescription where I can go to the chemist when I need a replacement. I am happy for the annual check up and will of course contact the surgery if there is a major shift in my condition. It seems to be a waste of everyone’s time filling out forms every month for something that is not going to change.

  95. Peter Murphy says:

    The stated definition for a LTC says ” controlled by medication”. The word ‘controlled’ indicates a degree of power that is not there. Maybe use ameliorated ,or modified, instead. Crucial for all that follows.

    Later on , bullet point 3, you omit the term emotional from the list yet note the presence of depression for many people. The word psychological does not have the same meaning.

  96. Peter Wasson says:

    Thousands of patients across the country suffer from long term and chronic conditions which affect every moment of their lives. We believe that the NHS needs to be able to provide better care and as importantly improved continuity of care for patients.

    One key issue is that many patients find the pathways for chronic conditions confusing and muddled. This is particularly true for chronic pain. The Patients Association published a report, Public Attitudes to Pain, in 2010 which found that for the majority of chronic pain sufferers, there is no clear care pathway for chronic pain. This is despite evidence from the Chief Medical Officer’s report in 2008 that 7.8 million people in the UK suffer from chronic pain.

    We need clearer care pathway for all conditions which is discussed and agreed with patients at the outset of their treatment so that they understand what is happening to them and what to expect from their treatment. Any changes that might need to happen to the care pathway must also be discussed and agreed with patients.

    There is also the issue of continuity of care. When patients are being moved between care settings, we have heard that oftentimes their medical records and information about their ongoing care are not properly passed on. There must be effective systems in place to ensure that when patients are moving between care settings, the information about their care follows them and that all professional involved in their care are fully prepared to treat their condition holistically.

    Finally, it is important to remember that patients are not only the long term condition they suffer from. They will suffer from the same seasonal and chance diseases as everyone else. If a patient with a long term condition develops a cold or another ailment unlinked to their condition, they should be able to access effective healthcare services without their long term condition getting in the way.

  97. Joanne Cole says:

    The first core principle of this strategy should be that the gate keeping has to stop.
    I have osteoarthritis, chronic since the age of 34. At 47, barely able to stand up was offered crutches to stave off a knee replacement operation because I was too young. 2 years on crutches, a knee replacement later and told they had left me too late and diseased bone holds the metal joint in place. At 56, I am riddled throughout my body with arthritis but the medical profession still deems arthritis a disease of the elderly.
    I will not be able to work to 66.
    There is a perverse ignorance and short-sightedness to service design and delivery that cuts costs on one side and actively prevents a person being ecomonically productive and living independently on the other.

    The second core principle is for the UK to stop failing young people with health conditions.
    Anyone with a neurological condition, such as Chronic Fatigue, Huntington’s, MS or Epilepsy has a propensity to depression. Young people are told by medical professionals to ‘buck their ideas up’ or worse even when they show clinical signs of depression. If this goes unrecognised, families have to contend with behaviour that grows worse over time, resulting in assault, household damage, self-harming and suicide attempts. Parents of young people with mental health problems have absolutely no rights at all, yet they need support to make sure any interventions they put in place are not counterproductive to the future well-being of a son or daughter. Families are forced to live through hell whilst young people go without a diagnosis in favour of pre-conceived ideas. Peer group pressure is a picnic compared to the peer group isolation that occurs following a diagnosis with every conceivable form of prejudice coming to the fore.
    Society does need to stop tarring everyone with an LTC as a burden or a malingerer and the training medical profession needs to be educated right from the start to understand that LTC’s can happen to anybody at any time and mental health interventions may be necessary as part of the care pathway.

    • Mark Silverman says:

      Action Duchenne is the leading national charity funding research and campaigning for improved standards of care for those living with Duchenne Muscular Dystrophy.  Whilst it is not entirely clear what is being sought from this particular consultation, given that it would appear to be a very high level and general strategy, it is likely that some of the issues affected by those living with Duchenne are not unique.  Healthcare provision for Duchenne remains a lottery across England and the charity has developed a four point plan, as part of its Boys to Men campaign.  
      In particular and of relevance to this consultation, the charity wishes to see the creation of 9 specialist Centres of Excellence across the UK to meet the medical care needs for this severe muscle wasting condition and deliver new gene therapies.  This would build on our DMD Centres work, launched in 2011, which was highly commended by Minister of State for Care Services, Paul Burstow MP.   The charity also wishes to see improved access to specialist educational assessments and interventions, careers advice and support for independence.  
      The principles set out in our campaign have applications across a number of serious, long term conditions and the charity wishes to engage with the government and NICE to ensure that those living with Duchenne receive the joined up care that they need.
      Our campaign documents can be viewed at:


    • Jayne says:

      Dear Joanne,
      I am shocked, as I thought it was just me they were saying this “you are too young” for such conditions as Osteoarthritis, I have been diagnosed with fibromyalga 4 years now. I have had problems since a teenager with my reproductive system, and told I could not have children at 20yr’s, but to young for a hysterectomy, never was I given the oppurtunity to have IVF. I had Depression and Pain have been big issue’s with me since the age of 11. I still have only in the last 5yr’s been able to get a doctor to send me to a gynocologist. who removed my tubs for me at which point he told me they were deformed. I was 42 when this was done so had been in pain there for 31yr’s. I was in a car crash at 23 yr’s and had been in pain with my back and neck. Doctors would dismiss my pleas for help, with no investigastion. I went to a chiropractor who told me I had Osteoarthritis, in my neck and lower back, I had to take these ex-ray’s to my Doctor and then to a consultant Rheumatoligist. Who sent me to a pain management course, no medication except by this time highly addictive pain killers. I also have Arthritis in my shoulders and hand’s, knee’s are painful and feet.
      Yours was the first post I have read. There are 300 and more to go. The treatment I have had since a teenager, have had a great in packet on my life, and are still ongoing. I just wonted to say thank you. you have given me the courage to take my health care further. At 47 I am totally incapacitated in so many ways. I can only hope that someone in charge takes note and does something for the thousands, millions even of people who have been miss treated, miss diagnosed and are suffering. Thank you sincerely Jayne

  98. Richard W Caley says:

    I have worked for over 25 NHS years in rehabilitation providing electronic assistive technology to people in the community with long-term neurological conditions. My experience is that provision is still service led, uncoordinated and restricted by individuals who are determined to think and remain firmly inside the box.
    A significant service improvement can be made by having firstly a Medical lead (to ensure the patient is clinically optimised) and secondly, an Electronic Assistive Technology lead. This will ensure that a coordinated patient focussed solution is found, optimally funded, well managed and supported, and will provide a long-term positive outcome for the patient. Further discussion is welcome.

  99. Sarah Fox says:

    I have a fifteen year old son who was diagnoised with M.E. in May 2007. Firstly it took over six months for him to get a diagnosis. The local M.E. Clinic is run by two Specialist Occupational Therapists, there is no Consultant Specialist in M.E. in the region. With no access to an NHS specialist we have, in desperation, ended up paying for so many different treatments which might help; chiropractor, homeopath, supplements, etc. My son does not have a care plan, we just do our best.

    Education is a nightmare. Having missed so many winters of education, we finally got a home tutor in December last year (2011). The school and the home tutor do not work together. Everything still seems to be left to the parent/carer. My son is desperate to get an education but everything seems to be against him. Lack of medical support, lack of communication, lack of resources from school. I have ended up spending such a lot of money on resources.

    Trying to claim DLA is a nightmare. Took me three years to be awarded the lowest rate of DLA care after having to attend a Tribunal in June 2011.

    There are many, many people who suffer with M.E. and they are not getting the professional medical support and care that they are entitled to. We need more joined up care for this disease so that people who have it can have the support that they should get. In cases where the disease is diagnosed early, the prognosis is much better.

  100. Mira Haynes says:

    The Department of Health is seeking views from individuals with long term conditions, their carers and practitioners. The Department of Health wants to understand the problems individuals face and how different ways of working can overcome the obstacles individuals have come across.

    Bracknell Forest Council consulted the community to inform the development of the Long Term Conditions Strategy between November 2011 and February 2012. The priorities identified by the residents of Bracknell Forest with or affected by long term conditions are as follows.

    The individuals who responded to the consultation want;
    -Services and support reviewed to ensure what we are providing meets the needs and aspirations of local people
    -The Council to develop, in partnership, employment and social opportunities, through projects like workplace awareness and supporting the development of user-led organisations
    -A general promotion of awareness of long term conditions, enabling greater understanding, acceptance and respect of conditions not only with the professionals charged with their care but also in the community
    -Suitable housing options to be available to support independent living
    -Increased access to support and services, both physically and technologically
    -Joined-up services with partner organisations, so people only have to tell their story once
    -The opportunity and responsibility to exercise choice, independence and self-management of conditions
    -Information to be readily available in a variety of formats
    -Carers to feel supported, for example, in care planning and benefits advice
    -Opportunities for on-going engagement, participation and contribution

    Many of these priorities are themes throughout the Council’s various commissioning strategies and action plans. Understanding the action plans of PCTs/CCGs and other Local Authorities in the South East region could unlock common themes regionally and perhaps even nationally. Where this is the case, economies of scale would suggest that some of these priorities could be met through joint commissioning or partnership work. This shouldn’t be done to the detriment of localism of services.
    The challenges we face in delivering these priorities, with their subsequent actions, is finding the equilibrium where the financial resources available, local social needs and effective service delivery meet.

    We are entering a time of organisational change; the introduction of Clinical Commissioning Groups, the formation of Local HealthWatch and the establishment of Health Watch England, and the transition of Public Health responsibilities to local authority. All of these will impact on the way the Council work with individuals with long term conditions and their families and the services and support we offer. Whilst the Council has some indications as to how these organisational shifts will affect the shape and responsibilities of the department over the coming years, the landscape is still changing and will continue to do so for some time.

    In delivering the Council’s commissioning strategy over the next five years the Council need to listen to what people say and aim to meet their expectations. The Council should take an approach which adopts a wellbeing and prevention model rather than intervention at a point of crisis. The future direction for support and services for people with a long term condition is achieving a goal whereby they are encouraged to make choices, fulfil their aspirations and achieve their desired outcomes.

  101. Debbie Cook says:

    Ankylosing Spondylitis (AS) is a progressive form of inflammatory arthritis which can cause irreversible fusing of the spine and may affect many other areas of the body including the eyes, lungs, bowels and heart. The condition lasts a lifetime and there is no cure. AS should therefore be defined as a Long-Term Condition.

    Around 200,000 people in the UK have been diagnosed with AS. Symptoms usually start in the late teens and early twenties. AS can have a devastating impact on education, work, social and family life. This highlights how the Long-Term Conditions Strategy needs to take a holistic view of the individual; it is not sufficient to look at their health needs alone. People with AS might need support into higher education for example, help with accessing social services and relevant benefits.

    Working life is one of the most affected areas of life for people with AS. A NASS survey conducted in 2010 presented strong evidence of the need to provide the right joined-up services and support, to enable people with conditions such as AS to access employment and achieve their ambitions in the workplace. In addition the NASS report suggested that a shared DWP and DOH budget should be identified to help deliver better harmonisation of improved health and lower welfare expenditure outcomes for people with debilitating conditions.

    Regular exercise is already in line with DOH strategy for self-management of LTCs but people with AS are only receiving a fraction of this vital treatment through the NHS. NASS currently provides people with AS access to at least 41 hours of group physiotherapy every year, almost 7 times the average number of hours provided by the NHS. NASS as a patient group provides a vital role in educating people with AS about the importance of exercise and self-management. The role that organisations like NASS play in supporting people with a LTC needs to be recognised and built into this strategy.

    The LTC Strategy should consider the ‘whole person’ and ensure that a long-term view of an individual’s needs is taken. Spend on treatment in the short-term will likely result in overall savings to the economy in the longer-term and this is likely true of many LTCs.

  102. Dr Andrew Davies says:

    The APM broadly welcomes / supports the proposed strategy on long term conditions. We feel that patients with long term conditions should have access to specialist palliative care as necessary, and that referrals should not be limited to patients at the end of life, but should include patients with difficult-to-control pain and other symptoms (“supportive care”).
    We feel that integration of care is important, and that all patients should have a “key worker” to co-ordinate their care. Equally, it is important that someone takes overall responsibility for the medical aspects of their care, and that as the patient’s condition deteriorates there is an orderly shift in responsibility towards primary care (from secondary care).
    It is important that this strategy endorses / reinforces other relevant publications such as the End-of-Life Care Strategy (2008). For example, patients with progressive / advanced conditions should be encouraged to complete an advance care plan, as well as an advance directive to refuse treatment (if appropriate).
    It is also important that all professionals involved in the care of patients with long term conditions are educated / trained in the principles of palliative care, so that all patients have access to good symptom control, and that all patients are appropriately supported and managed during the latter stages of their illness.

  103. Monica Young says:

    I am a Rehabilitation Engineer in a wheelchair service and also share a lot of the concerns facing people with LTC. The lack of funding for appropriate equipment and physiotherapy to prevent deteriation has grave effects on those in wheelchairs with LTC. There are no integrated funding solutions and no preventative resources available to help ease the burden on resources. Easier access and integrated services would greatly improve the service available for LTC however individual budgets prevent the NHS ever moving forwards on this issue. Unfortunately I don’t have the solutions but feel joint funding must move forward in order for the NHS to survive.

  104. Julia Greenwood says:

    As a palliative care practitioner, my focus is always on the holistic needs of our client group, including integrated working, good communication with all practitioners and engagement with the patient and their loved ones in ensuring all needs are met, including sensitive discussions about advance care planning and preferred place of care when health deteriorates. My dad (83) has had several protracted admissions to the same West Yorkshire hospital in the last year. Whilst I fully appreciate the complexity of managing the physiology of multiple system problems (renal, cardiac, upper GI, thyroid, diabetes), he has been discharged inappropriately and without proper assessment and support on several occasions only to have him re-admitted within days to weeks as his problems have not been adequately addressed. Not only does this cause significant disruption and distress, but must cost the health service thousands of pounds(!!) – indeed on this occasion he has spent several days waiting for a decision to be made by a Consultant who was on holiday! Sensitive and caring communication with patient and family could also be significantly improved. I fully recognise there are many competent and caring professionals working hard in our hospitals, but I would like to see appropriate policy changes made to enable more efficient holistic care in acute health care settings, so that good health care can be sustained in his preferred place of care.

  105. Fred Ward says:

    First let me commend the civil servants who devised this site and the DoH for successfully hiding it.
    Please! Can you not tell that 290 comments from the 7,000,000 people who have Long term conditions shows you are not being heard and shows that the ‘consultation’ is a complete farce which should have been taken off the first night.. But possibly that is the point of it all. Not advertised at all only means it is a silly, expensive exercise and not worthwhile at all. I am ashamed to say it is in keeping with many other failures from every political hue.
    The point is, that people with LTCs have the knowledge because they are living with them and are the only individuals who know for sure what it is like. Most, not all, H C Professionals, living in their own sterilised bubble of specialisation, never talk to another department. Consequently a ‘patient’ with diabetes and gout has to deal with that himself as there is no overlap in the NHS. If he followed both diets from each department he would certainly shorten his life with starvation. Again, perhaps that is the point, it gets cheaper.
    How is it that the Service cannot, with all its brain power and all those civil servant minions not have thought of that? Or is power the key? Too many pills being prescribed to too many people providing a dependence. All these have many side-effects which then give other symptoms for the patient to deal with. There are many people out there sitting in a blue-haze unnecessarily.
    I, fairly recently, attended an Expert Patients Programme course. I found out about this excellent service, free with the NHS, after struggling for many months trying to get answers that I had no experience to ask questions for. I went through a local hospital to a diabetes group then to another and then onto PALS who gave me the phone number of the coordinator in my NHS Trust area. The course was an eye-opener, tutored by people with LTCs who therefore understood my feelings and symptoms.
    The course changed my life as I learned how to be a ‘self-manager’ of my conditions. It is still a constant struggle with HCPs to get them to let other members of my health-care team know about that particular side of my conditions.
    The NHS would save millions a month simply by promoting this service.
    I strongly feel that I am wasting my time putting this comment on the site but saying this and putting it on paper makes me feel better. It doesn’t empower me to hold my LTCs at bay but it certainly works as a distraction technique to break the Symptom Cycle and crush the depression for a short while.
    It’s a horrible feeling when her Majesty’s government lets her and her people down. Shame on you!
    Feel free to NOT answer the question as usual. We, who are aware of this comment page, are not expecting anything except a sticking plaster to cure all.
    There is more chance of the English football team winning than you lot doing anything. Prove me wrong! P L E A S E.

  106. Victoria Dean says:

    My daughter developed a profound depression with what she thought were voices. She was treated for psychosis for 8 months – gained four stone in weight and showed now improvement in mood. She was admitted to an adolescent unit and within 3 days was diagnosed appropriately, medication was withdrawn over 3 months stay in hospital and she was prescribed an antidepressant.

    My point is that the community team could not assess her condition because they did not have the right environment to do so. Had my daughter had an admission for assessment when she first became ill then she would not have gained 4 stone in weight and lost 8 months on the wrong, expensive treatment. She now is obese and is fighting to loose the weight gained. As a teenager this has been devastating.

  107. Victoria Dean says:

    I have interstitial cystitis, which doesn’t neccessarily sound severe but can be incredibly disabilitating.

    The main problem I have found is in getting GPs to take it seriously. Obviously at first not knowing what was happeneing meant that I relied on GPs to help and inform, but I was met with a culture of ‘oh it’s a woman’s problem. You’ll just have to deal with it. Drink cranberry juice and plenty of water.’ However, when it’s not the type of cystitis that is caused by bacteria, so antibiotics are useless (and I have since found out can do more damage), I was unable to control it. I was once REFUSED access to a bladder specialist because the GP said she didn’t think it would make any difference. It was only when I persisted and finally saw a specialist after 4 or 5 years of trying to manage it myself without success, that I was told what was going on, and the type of thing that can exacerbate it.

    I have since been managing it, but then after two years, I had two very bad attacks which made me wonder how I might continue my life in this state. I’m only 28 and I was seriously wondering if this would affect what I can do in the future. I’ve seen the specialist again, though I felt like the GP would not be on my side and I had to gear myself up to speak to her. I’m currently taking a course of treatment to help. This treatment was never mentioned by any GP.

    I believe my GPs think I’m a hypochondriac. It makes me not go the doctors when I have an attack unless it’s severe, and I feel like I have to fight them to get them to take it seriously. There was minimal information given to me about it, and the information and advice I did receive was geared towards the bacterial cystitis, which didn’t necessarily help me at all. I have to say though, that in comparison, the specialist and the nurse I have seen and am currently seeing have been very helpful and considerate, and they actually understand how much this condition can affect a person’s life. This helps so much: after years of feeling like GPs are fobbing me off and not caring, it makes the world of difference to have people available to me who understand and care.

    • jane wallin says:

      I totally agree with Victoria. GPs in my experience have litttle or no knowledge at all of complex or rare conditions and are all too ready to fob me off with a bit of a chat and then no treatment at all. They come across as arrogant and condescending and I always leave the surgery feeling as if I have not been heard or understood and have been viewed as a time waster and a neurotic. I no longer visit my doctor as it seems to be a pointless and very stressful exercise. My original extremely life threatening illness was never diagnosed by my GP. Who just kept giving me higher and higher doses of Diazepam for back pain. My sister in the end took me to A & E where, after tests, I was diagnosed with a Spinal Cord Abscess and spent 8 weeks in hospital. I nearly died. Even when I came out of hospital my GP was contradicting and arguing with the consultant surgeon about the condition and I was piggy in the middle. I have never recovered fully from this condition and now live my life in constant pain and other consequential conditions such as anxiety and depression.

  108. Melissa Echalier says:

    Action on Hearing Loss is a charity that works towards better recognition of and services for people with hearing loss. Hearing Loss affects one in six of the population; as such, it is a serious public issue that has significant personal and social costs and leads to high levels of social isolation and consequent mental ill health. In turn, effective diagnosis and management of hearing loss can work to minimise some of these impacts on peoples’ lives.

    For this reason, we have campaigned for hearing loss to be considered a long term condition and welcome the Department of Health’s recent commitment to consider how hearing loss should be taken on board as the Department of Health’s Long Term Conditions Outcomes Strategy develops.
    We also know that there is a variation in quality of services for people with hearing loss, and are looking to the long term conditions strategy to address this.

    We support the goals outlined for the long term conditions strategy. It is essential that service are joined up and based around people’s needs, for long term conditions to be managed as effectively as possible. It is important that the strategy is truly cross-governmental and we look forward to finding out how this will work in practice.

    We are calling for hearing loss itself to be recognised as a long term condition so that people are able to benefit from improved quality of life brought about by better management of hearing loss. At the same time, it is important that the long term conditions strategy considers the implications of hearing loss for the management of other long term conditions.

    As many long term conditions are concentrated within older groups, this means that a large proportion of people will have age-related hearing loss and at least one other long term condition, such as diabetes or cardiovascular disease. Moreover, there is a direct link between hearing loss and some conditions, such as dementia and depression. People with mild hearing loss have nearly twice the chance of going on to develop dementia as people with normal hearing. The risk increases threefold for those with moderate and fivefold for those with severe hearing loss.

    Hearing loss has the following negative implications for the management of other long term conditions:

    • Unmet communication needs, arising from hearing loss, pose a challenge to the management of long term conditions.

    • People with hearing loss experience greater difficulties in accessing health services and receive a lower standard of health service across the board.

    • Unmanaged hearing loss can bring about particular challenges in terms of the management of particular conditions such as diabetes, where patients can play a large role in self-managing their condition, and effective communication with health professionals as essential.

    We would like the long term conditions strategy to recognise the importance of taking a more joined-up approach where someone has hearing loss and another long term condition. We would like it to include recommendations such as:

    1. Diagnostic procedures for conditions, such as dementia, that take into account the impact of hearing loss.

    2. Guidance around the management of long term conditions that takes into account the impact of hearing loss.

    3. Provision of information in formats that are accessible to people with hearing loss.

    4. Higher rates of cross-referral by healthcare professionals, for instance, audiologists and dementia specialists.

    5. More health promotion activities and health services that are accessible to British Sign Language users.

    Changes, that aim to make NHS services more accessible and person-centred, are already in train, for instance, the extension of Any Qualified Provider to adult hearing services. We would like the strategy to take account of this, and to inform the development of the NICE quality standard on hearing loss.

    We would also like the strategy to make clear links to and inform the content of the Public and NHS Outcomes Frameworks, as well as the Commissioning Outcomes Framework, and the Quality and Outcomes Framework used by GPs surgeries.

    Melissa Echalier
    Senior Research and Policy Officer
    Action on Hearing Loss

  109. Janis Cottee says:

    I would like to see more Day Centre’s with staff trained in Early on-set, which is a completely different set of needs to Age related Alzheimer’s. I would like to see Nurses and Doctors listening to the carer’s of people with Alzheimer’s. It took three years to get a dianosis for us, and even now I am told “professionals know best” when they don’t even know my husband!
    I would like to see Care co-ordinators appointed to all long term illness sufferers. Ours has been great and such a support through all our tough times.
    We also need more Admiral Nurses. Mine trained me so well, I surprise even some of the professionals with the knowledge he imparted to me.
    I would also like to see more regular checks by the Care Quality Commission on Nursing Homes for people with Alzheimer’s. They are, after all, some of the most vulnerable people in society. Their carer’s, by the stage they go into a home, can no longer cope alone, but still worry about them frantically. More frequent checks would give them peace of mind.
    I would also like to see at least one trained Admiral Nurse permanently attached to every hospital to ensure in-patients with the illness are properly understood.
    Thank you for the opportunity to voice some of my concerns.

    • Rose Nepean says:

      I endorse this comment about the need for Admiral Nurses to be made available to everyone caring for people with this terrible ILLNESS (not just a social need) and the NHS and Social Services to recognise that caring for someone with this disease is not as straightforward as inputting care for say 1/2 hour to change a nd feed a patient, it requires skilled and dementia trained staff to meet the many needs of these poor people.

  110. josephine chimes says:

    i have a rare neurological disorder, which affects the circadian rythm. The most noticeable part is the sleep pattern is irregular and serverely erratic. I haven’t been able to work due to this condition, as i have no control over when i fall asleep and when i can wake up, it happens at different times each day. A lot of daily things require you to be somewhere at a certain time, this can include shop opening times, public transport timetables, various appointments, including ones for the medical assessment for the dwp.

    The nature of my condition and its serverity of how it affects me on a daily basis, means it won’t ever change. It is also uncurable.

    As much as the condition disrupts my life, there are other factors that contribute to the upset. This includes various different programmes/organisations/associations/service that have helped me in the past that have been closed down due to government cuts. Consequently, i have no where to go for help and advice, except the citizen advice bureau who don’t know how to help me. There is also no support groups of legislation on non-24 circadian rhythm disorder to help people with this condition. We may be a relatively small number, but we still exist and live in this country and desperately require help and support.

    I believe that the government should put in place as benefit for people with long term illness’s who aren’t eligible for DLA but have a long term illness which means they’re limited in some way. Household income should not affect the rate they get, as alot of household with a disabled person due to a long term condition struggle, as the pressue is put on the non-disabled person to support the one who is. In this day of age, households are suplemented by two incomes, one from each, and this just about covers most living expenses, yet couples where one has a long term condition and cannot work are expected to live on just one form of income.

    I think the government should put a safety net in place, for those who have rare long term conditions where they have limited capacity for work, for them not to fall through the cracks in the system as we so often do. I recently had a medical assessment for ESA and was deemed fit to work, despite them stating i have an erractic and irregular sleep pattern and cannot do things that require set times. What sense does that make? Well, it’s because i didn’t fit any of the tick boxes because non-24 circadian rhythm disorder is rare and widely unknown about, even in the medical practise, except for sleep clinics.

    Even then there is a fight going on between sleep specialists and GPs, as the medication for non-24 is melatonin, which is still unlicensed in this country despite being used by many people for various conditions, which costs practices money to perscribe, so they start trying to not perscribe it, even if the sleep clinic says i need it. I have been told by my sleep specialist, that if i have trouble with my doctor perscribing it, i would have to get a years supply once a year when i see them.

    I feel that because i’m seen as a small statistic, my needs and rights as a human being do not matter and i have to fight all the time to survive. Consequently because i’ve been deemed ‘fit to work’ by the DWP, i will be forced into work which makes the effects of my condition a lot worse. It’s well documented that people can die from extreme sleep deprivation and people with non-24 circadian rhythm disorder accue sleep debt on a regular daily basis, but generally when we’re not having to force ourselves awake at the same time everyday, we’re ok, but when we do have to force ourselves up at a set hour, the sleep debt increases dramatically and on a long term scale, this can become dangerous, with many of us having to be institutionalized due to effects on our mentality aswell as affecting us physically. We are also one of the groups of people who have the highest rate of depression and suicide as we are isolated from any form of human contact on a regular basis.

  111. Brady says:

    Circadian Issues – N24/DSPS.

    I have N24 and have been living with it for most of my life, but was only diagnosed a couple of years ago. I’ve been in and out of hospitals and GPs on all sorts of different meds, blood test, exams, consultations and trying different therapies to no avail. The main problem with this is the stigma of the word “sleep”, which is immediately associated with “lazy” to anyone who doesn’t know about what is otherwise an extremely rare condition. It took me far too long to get diagnosed and even during the process required a lot of checks and sleep logs as well as having to point out the problems it causes in life.

    Because of the way I sleep, I have the option of forcing an irregular sleep pattern (which is much, much harder than it sounds and far worse for your general health than anyone who sleeps regularly will understand at first) to get into work, college etc, and then become chronically ill and fatigued, also leading to various other problems such as insomnia, microsleeps, extreme and long-lasting vertigo (which has taken me out of work for months at a time).

    The problem, and reason I’m posting, is the other option = sleep naturally. This way I can remain healthy and feel good, but be on a non-24 hour sleeping schedule that will screw with my life nine ways to Sunday…but because I’m suddenly healthy, people expect me to remain healthy on a 24 hour sleep pattern. Employers make no effort to understand the issue, and although I recognise that employing someone with an awful sleep pattern is not in their best interests, and understand why they can’t hire me, it’s not exactly ideal for me either.
    Despite this being, by definition, a disability, I can’t make any kind of claims or get help with this situation because when you say to someone “I have a sleeping problem”, nobody wants to help, the only response is “go to bed earlier” or “set an alarm” or “try harder” which is a bit like telling a parapalegic to “just get up”. When I’m unable to work and can’t get any support or help with the problem things start getting worse fast for me, forcing me to push my disorder to the limits which is detrimental to my health.

    The lack of support I get from the government and society in general due to the stigma of the issue literally forces me to sacrifice my health to work around it, and I view that as pretty damn unfair considering I’m the one that gets blamed when my bad health finally knocks me out of work. I’d like to see circadian disorders more recognised and supported as the real issue they are, not as the joke people treat it as.


  112. Stephanie says:

    I have suffered with panic disorder with agoraphobia for many years. I had to leave my employment as a sales executive when I became unable to drive my car to work and suffered from catastrophic panic attacks at work too. I was unable to function in my job and I have not been able to return to work. This condition has completely destroyed my quality of life for the last decade and left me financially dependent on incapacity benefits. Which incidentally, I am now having to fight for. I was transferred to the new employment and support allowance and after the work capability assessment I was found ‘fit for work’. Since this happened last November I have been living in a state of fear. I simply cannot travel without becoming distressed and agitated or go anywhere without support from closest family. I would also have extreme difficulty attending a tribunal. This situation has exacerbated the stress, panic, depression and insomnia associated with anxiety. It absolutely needs to be mentioned and considered here because for people with long term conditions the potential loss of income, pressure of constant form filling and reassessment, dealing endlessly with the DWP and facing an appeal tribunal, combined with the time limiting aspect of this benefit is a real threat to health. Destitution is not a cure for a long term condition.

    Without support I cannot go shopping or attend hospital appointments and so forth. I have in fact missed vital appointments because I have so much anticipatory anxiety and I have become too panicked. I do not function well outside of my home and stay within a limited ‘safe zone’ with which I am extremely familiar. I become intolerably anxious as a car passenger and can only be driven short distances by a member of my close family. I cannot use public transport. I am very restricted by this condition, missing out on exercise, days out, cinema, theatre, concerts, social interaction, education, and pretty much everything that I took for granted before the panic attacks started.

    I feel that my condition has been poorly managed from the start. The panic attacks were so severe that I was taken to A&E on several occasions and told that it was ‘just anxiety’ and sent home. My doctor offered anti-depressants but after a couple of years they became ineffective. If intervention via counselling, cognitive therapy or the support and guidance of a mental health nurse had occurred at an early stage I believe that the agoraphobia may have been prevented from developing so severely. Slowly doors close behind you and yet you are not aware of that you are becoming increasingly withdrawn and phobic until you are too frightened to go anywhere.

    Anti-depressants have failed. More support whilst attempting to try new medication would have been beneficial. They caused thoughts of self harm with increased and more severe panic. I could not cope with the side effects on my own unsupervised and with no one to look out for me so have declined to try any more, too frightened that I will harm myself or worse. I have been referred to mental health services many times but the waiting times were very long and I was left to cope alone for months and sometimes years without help. The best support I ever had was a community mental health nurse who visited one hour per week. She enabled me to go shopping and took me for short walks. I felt as if I was supported and had someone to discuss my difficulties with and she offered counselling and solutions. Ideally, anxiety disorders need long term and regular support.

    The nurse was withdrawn when I finally got an appointment with a psychologist. I was given a one to one course of CBT. However, this was cut short when the psychologist was made redundant due to cuts.

    In all I have attended three courses of cognitive behaviour therapy. Each has had small short term results but once they ended after the 12 week limit of one hour each week, I was again left to struggle alone. I strongly believe that these courses should run as long as they are required. You would not, for example, limit chemotherapy to a prescribed amount of sessions if a few more might cure the disease. One psychologist made our meetings stretch out longer by arranging appointments every three weeks instead of weekly. Without regular meetings to discuss progress and action plans all of the coping strategies are quickly forgotten when you in panic inducing situation.

    I can only speak for my own condition and have found this consultation at short notice.

    I feel that mental health is the poor relation regards to access to care and long term support. Ideally, for me, I would like to have an open door policy, a sort of drop in centre with telephone access too. To know that someone is at the end of the line to help when you need it. I would like to attend courses locally, leisure, or to improve my employment prospects for the future but being agoraphobic I need someone to come with me to encourage and support. Some organised social activities would be brilliant. A group of like minded individuals organising a trip to the swimming pool for example, helping each other to deal with their conditions. What happens if you need someone to enable you to do something but there is simply no one to ask and you are completely isolated? It doesn’t matter if this is within the NHS or offered via a charitable organisation. In ten years the only way I have been able to get help is via my GP who refers me to the local mental health team (which is constantly in a state of reorganisation and relocation). I attend the CBT courses and I don’t improve and nothing changes.

    Agoraphobia can be crippling but there appears to be very little help. Mental health teams could do much more and follow up on therapy courses over a longer period of time to make sure the individual is coping or needs more help. It is all very disjointed. Why don’t mental health teams refer patients to groups, organisations and offer further support?

  113. Maggie Brown says:

    I care for my brother, who was diagnosed with Schizophrenia almost 30 years ago. I am extremely concerned that the new government strategy to get as many long term sick people working as possible. Whilst there is something to recommend the ethos of work to those who are able to benefit from having a regular place to go where they can feel a useful member of society and a contributor to the community, allownace has to be made for those with severe mental illnesses who may be unable to sustain this in the long term.
    We seem to have replaced the ‘carrot’ with the ‘stick’ these days, only financially penalising those who can’t work and offering very little in the way of incentives. I fear that my brother may be made to work due to the threat of a reduction in his benefits, only to relapse when he is unable to sustain the constant pressure to maintain what to most people is a ‘normal’ routine but which to him is torture due to his condition.
    Mental illness is a tricky thing to assess and only those professionals who have known him most of his adult life are qualified to make a judgement as to whether or how much he could work. It is a sad day indeed when a poorly qualified stranger is asked to make this judgement call. It could drive a mentally frail individual to suicide.
    If these vulnerable people are forced into relapse by this ill conceived system of budgeting (it is, after all, a cost-cutting exercise) who is going to pick up the pieces, physically and financially? The burden of care will fall on the silent majority of carers like myself and we will be expected to put our own lives on hold while we hope and pray that we ourselves don’t crack under the pressure.
    Meanwhile-who cares? Who truly cares?

  114. Jo Black says:

    Key comments from people with personal experience of palliative and end of life care:
    Services need to be coordinated by a single point of conduct, across health and social care
    End of life care should be included in the strategy both in terms of speaking early on about people’s wishes and in providing excellent care right to the end of a person’s life.
    There should be clear links with the carers and end of life care strategies.

  115. Dorothy says:

    Involving the individual in deciding what they want is fine so long as they are mentally competent – dementia takes that away, yet we’ve encountered inexperienced social workers and medical personnel who seem unable to recognise this and insist on asking questions the person with dementia will answer despite their mental confusion, and then take those answers as gospel!

    Like so many carers I’ve had to manage the situation for ourselves, sort out care, pay for everything ourselves, fight our own corner completely alone and suffer the health consequences. Perhaps you’d take the time to read my book, One Day at a Time published by SPCK, to find out what it’s really like from the inside.

    If there is any strategy, I haven’t heard of it. If there is any government back-up or help apart from the derisory Attendance Allowance, I don’t know about it. Our wonderful Suffolk Family Carers organisation is radically overstretched.

    For as long as we have a government who thinks everything has a cash price and that cheapest is best when it comes to public services, the vulnerable will come bottom of the heap and their overworked and exhausted carers will go on carrying a burden that should be relieved by the state into whose coffers they’ve been paying taxes for years – coffers that seem able to dole out millions to pay huge salaries to partly-publicly-owned bank directors and bail out the banks themselves. This is gross injustice and mismanagement of public funds.

  116. Martin Bristow says:

    My father lives with Dementia.This was diagnosed officially in July 2011 although his condition was noticeable prior to this.He lives with my mother who is his only carer.I look after all financial and weekly tasks associated with living (shopping,fetching and carrying,attending appointments)

    Chief concern in our experience centers on GP’s. Ours adopted a completely disinterested position.We received little or no input from them and were advised to consider putting my Father into care immediately.Medications prescribed by my father’s Psychiatrist that were channelled through our GP did not arrive and we had no support when it came to mental competence screening.This was deeply upsetting and led to a situation were we have had to find things out for ourselves. Dementia is a Cinderella condition firstly you struggle to get a diagnosis then you can not get a care service put in as social services and NHS fight it out and lastly GP ‘s,adopt, a stand offish approach.A much more integrated service is required with one agency dealing with care and medical interventions not numerous ones duplicating each others work.An awful experience all around!

    • Rose Nepean says:

      AD is not apparently recognised by the NHS as a “disease” but considered to be a social need, therefore self funders have to source and pay for all assistance, respite etc (with the exception of 2 hours a week “sitting service” and £150 pa to pay for a holiday.(nursing homes cost upwards of £700 per week !) Cross border responsibilities are disputed by Social Services,therefore if you live 1 mile from county border you cannot choose the nearest NH and expect that SS will step in when savings are spent up.
      Apparently I need to make a guestimate of his date of death before putting him into care, even if he desperately needs more care than I can cope with.
      GP has no role to play once diagnosis has been made, except for emergencies, as specific medication can only be prescribed by hospital consultant ,(repeat prescriptions available via a secretary, signed by a doctor who has never met the patient) which I consider to be an insult to the poor GP.

  117. Lynne says:

    my uncle is 87, and has a range of health conditions including having no use of his right leg or arm following a stroke, having a super public catheter fitted, being blind and partially dead.

    The things that have made a real difference to him are
    1) living in a sheltered housing scheme with “can do” very helpful wardens on call in the building 24/7, and with dinners cooked for him and washing done for him
    2)voluntary organisation services for the blind… eg talking books, clocks and watch
    3) gaining continuing healthcare funding ( althouugh it took 14months) with continuity of service provided by one home care organisation….. in the previous year he had 4 changes of provider

  118. Annie Bishop says:

    What can I say that hasnt been said in the comments above or in numerous consultations about DLA and Nhs reforms, people are dying who are found fit for work, my condition isn’t getting any better, my quality of life is provided by DLA which allows me to work. I cannot use public transport as there are few regular buses in my area, my mobility is poor so without motability I will isolated which will exacerbate my depression. No joined up response re conditions and services. What’s this for anyway? The government isn’t listening or caring about the sick and disabled. Whilst I applaud the sustrans comment some of us wouldn’t be able to stay on a bike let alone ride one. My nearest gym is 15 miles away. Inequality and injustice is at the heart of this consultation.

  119. Olivier Smith - Fitness Industry Association says:

    The Fitness Industry Association welcomes the opportunity to comment on the Department of Health’s Long Term Conditions Strategy. The FIA is pleased to see the cross-government approach which the Department of Health is leading which is crucial to ensuring the effective prevention, management and treatment of long term health conditions.

    The FIA believes that this joined up approach focussing on a range of different services should be underlined by the promotion and increased accessibility of physical activity which has been proven to be a crucial tool in dealing with long term health conditions. The existing evidence base around physical activity indicates that any meaningful and sustained increase in exercise levels will lead to a long term reduction in long term health conditions and the amelioration in the treatment and management of existing conditions. The emphasis should therefore be on efforts to increase physical activity levels which will have a significant impact on long term health conditions.

    The importance of physical activity in preventing long term conditions is well established. The latest Chief Medical Officer report cites that levels of aerobic physical activity have a consistent effect on achieving can reduce the prevalence of chronic conditions such as Type 2 Diabetes, Stroke and Obesity by between 30-50%. The cost to the NHS of inactivity and resulting overweight and obesity is projected to reach £50bn per year by 2050.
    The FIA advocates an integrated service right along the care pathway – from prevention, treatment and care, to recovery, rehabilitation and re-ablement. The physical activity sector is a significant resource for delivering exercise as a preventative tool. There are currently over 2300 level 3 & 4 exercise professionals qualified to deliver exercise referral programmes. Emphasis should be placed on tapping into this resource to ensure that prevention is at the heart of the strategy.

    Physical activity interventions are also a key component in the treatment and management of long term conditions. The FIA supports the delivery of physical activity interventions and programmes aimed at changing behaviour. It is an important way to encourage a healthy and active lifestyle and an effective means to prevention, treatment and management. An example of this is a DH developed physical activity behavioural intervention programme based on motivational interviewing called Let’s Get Moving. This was commissioned by the Department of Health and rolled out to 5 Essex PCTs and 10 local GP surgeries. The programme incorporated a Physical Activity Care Pathway based on recommendations of the NICE Public Health Guidance 2 & 6 and was piloted and evaluated by the British Heart Foundation National Centre for Physical Activity and Health at Loughborough University.

    Let’s Get Moving is a behaviour change programme that was designed to assist practitioners in guiding inactive adults aged 16-74 towards gradually become more active, for the prevention and management of chronic disease, including obesity. The FIA were able to contribute a detailed knowledge of physical activity science and the development and implementation of physical activity policy and interventions and a team of qualified exercise instructors from the FIA’s membership were recruited to assume the role of Community Exercise Practitioners (CEPs).
    Let’s Get Moving showed that a physical activity motivational programme is an effective way to change behaviour, increase physical activity levels and prevent obesity. Results showed a combination of positive health outcomes, increased physical activity and a positive user experience. The FIA believes that physical activity counselling should be rolled out nationally and delivered into every local community through qualified CEPs as means to tackle sedentary behaviour especially amongst those groups suffering from long term conditions that are more likely to be physically inactive.

    The barriers to exercise should be challenged and broken down to ensure that physical activity, and the benefits derived from it, are accessible to those with long term conditions. This can be achieved by creating a cohort of community exercise champions who play an important role in instructing, informing and motivating communities to lead a healthier and more active life. Moving forward, we believe that such champions should extend their role to include other areas of society. For example, primary schools in which 9.8% of children enter as obese but twice as many (18.7%) leave primary school as obese. We want to ensure that children leave schools with “physical literacy”.

    As such, we recently carried out a survey in which we asked sport coaches, personal trainers, gym instructors, group exercise instructors and gym managers and proprietors if they would be interested in volunteering in their local primary school to promote physical activity to young children and their parents; 65% of respondents said that they would. This resource should be tapped into to ensure that physical activity is readily available for all for the prevention, treatment and management of long term conditions.

    In summary, the FIA welcomes the cross governmental approach to tackling long term conditions and believes that physical activity should be at the heart of the strategy to ensure the effective management and treatment for those with long term conditions. The government also seeks a long term reduction in these conditions and the FIA believes that the evidence base which exists underlining the importance of physical activity in terms of prevention is compelling and that the government’s long term strategy should reflect this and have physical activity at its core.

  120. Steve says:

    My partner has MS and we live in a part of the country where the local NHS management is poor and they were actually considering making redundant the MS specialist nurse a couple of years ago! When you see the nurse for a regular review the advice is all about ‘strategies’ and nothing about ‘treatment’. So we are considering the opportunity of experimental treatment with a neighbouring Trust. As far as MS is concerned there is a definate postcide lottery.

    The sceond area where there is not a joined up approach is in terms of welfare. It is ludicrous to put people with conditions such as MS through the stress of welfare review when they are unlikley to ever improve and usefully enter the labour market. Reviewing all disability benefit claimants is a waste of money and stressful. Threatening some with household means tested benefits reduces disaabled people to little more than an appendage of their families.

    It appears that the DWP and HMRC could have a better relationship. Because HMRC is understaffed and does not have a sufficient local and face to face presence my partner has been landed with a huge tax bill because they mislaid information from DWP. Disgusting. Tax and benefits need to be better integrated and devolved with face to face resolution of problems and issues.

  121. Catherine says:

    Self-management of long term conditions can only be successful with education and understanding of one’s own condition. Every person’s condition is very personal to them. By putting the patient in the centre digitally as with Patients Knows Best this way the patient, carers and all clinicians have a clear chronology of the patient’s condition and how everyone including the patient is managing it. They learn together what works for the individual. Not only is it a brilliant way of non-invasive communication by all, it can be used to input required QOF data by the patient for the GP. It also can be used for research purposes to evaluate best practice. The list is endless and very cost effective. Why is the NHS not investing in this? Everyone should have a PKB account.

  122. Sue Bennett says:

    I welcome most of the strategy but how does it fit in with the current rounds of spending cuts? How can commissioners of services meet individual not mass need and what strategy is there to recondition healthcare care professionals from treating us as passive recipients of care to active partners who may have more knowledge of what is needed to enable self-management which is likely to reduce NHS costs in the long run? People with long term conditions must be actively involved in research and development of care and treatment and NHS policy.
    The strategy does not appear to acknowledge the part that good innovative medical technology can have in enabling those with long term conditions to maintain independence and enable us to partake in “normal” life. The strategy should make sure that this is funded.
    Like many others with spinal conditions I live with chronic neuropathic pain, severe mobility impairment and bladder and bowel dysfunction. My lack of mobility places me at continuous risk of developing pressure ulcers (and occasionally acquiring one) in addition I have dexterity difficulties due to long term Raynauds and arthritis. I have little ongoing support other than specialist care of my bladder dysfunction by a tertiary specialist centre. I have no long term care plan. and often struggle to get the help I need and tools to prevent infections and pressure ulcers and allow me to self manage and have independence and ability to partake in activities others take for granted.
    I am constantly hearing of HCPs stating that people cannot have the most appropriate products because they are not on a restricted list that takes no account of individual need. What may enable promotion of self-care and prevent the person from being housebound is often not provided. Many PCT’s have introduced restricted prescribing formularies stopping many getting the continence /urology products that they need to meet individual need. Some are prescribed leg bags they can’t use independently, urinary sheaths that leak as they haven’t been prescribed from the full list in Part IX Drug Tariff or brightly coloured indwelling catheters that cause body image problems and shine through clothing. Others are prescribed intermittent catheters for self catheterisation that the person is unable to manage away from home, or they get regular infections as they can’t use a no touch technique that many innovative catheters enable. It is vital that all people who require prescribable continence urology products are given choice and be able to get the most suitable for their individual medical and lifestyle needs, not those few on a restricted formulary.
    These restricted formularies may also apply to wound dressings. Anybody who has had a pressure ulcer knows that prevention is better than cure. Yet few preventative devices are on these restricted lists. My elderly mother with rheumatoid arthritis (RA) is prone to heel pressure ulcers. She needs a device that can be worn in shoes as well as when in bed. One is available on the Drug Tariff but not on her PCT’s restricted list. It costs just under £15 for 2 that are able to be used for 6 months! The sterile foam heels that she is prescribed will end up costing much more and are very difficult to put on and hold in place. When not used she rapidly develops an open pressure ulcer using more dressings and district nurse time.
    There is also an issue of pressure relieving devices in the home and a one type fits all approach Cushions need to fit the user’s needs and the chair. Pressure relieving mattresses are rarely provided for double beds yet people with long term conditions should be able to lead a normal lifestyle.
    Many wheelchair services are not providing the most suitable products. It is better to be given cushions that don’t lead to pressure ulcers and wheelchairs that do not cause further injury to the user or their family carer because of their weight. The right wheelchair can enable independence. Heavy manual chairs lead to dependence on others and are likely to cause shoulder injury in those who propel themselves. Innovation has created ultra lightweight chairs that are much easier to be lifted in and out of cars etc.
    It is vital that all prescribers/ providers of medical devices know the full range of what is available and are able to meet individual need of the patient. Restricted formularies cause immense difficulties even for drugs. One size or type does not fit all. Generic prescribing causes confusion. When you are on many different drugs and each month they come in different packaging, which patients may or may not get in to, then the drugs themselves are very different in shape and colour. Now do I ensure my parents with poor eyesight take the right ones at the right time?
    Striving to keep independence and self manage comes at a cost. I have given up trying to access many services in fear that they will try to take away what I ready have. Life could be made easier if I did not have to fight battles over products to self manage Why do some health managers think that our services are ripe for cutting? Why can’t methatrexate by injection for RA be supplied via FP10 now that it is supplied commercially in prefilled syringes often with expiry dates of over a year? It is utter madness that I have to make around journey of 400 miles simple to get stocks from my mother’s rheumatology service, to enable the district nurse to give my mother her weekly injections. The service did have the bright idea of sending letters to their patients telling them to get it via their GP but although in BNF it is not on the Drug Tariff. How many more people are wasting time and effort on aspects of care for long term conditions and filling hospital car parks getting vital supplies?
    Access to many services is virtually impossible. I have given up on screening for breast cancer. My local service doesn’t want to cope with a wheelchair user in a ”normal” session at the hospital with access issues and their mobile units have steep steps.. The few non-normal sessions they run clash with my permitted work and unwilling to provide transport because I am wheelchair user. “Normal” local women attend a mobile unit. I didn’t attend a diabetes screening session as I could not get on their non accessible bus. Even the relatively new hospital I attend has steps to its A & E department and main entrance not to mention other access issues inside. It is vital that services are designed round the needs of those of us who unfortunately need to use health services and that health service buildings and mobile units do not rely on good mobility. Many people with LTC fail to keep appointments because of the difficulties they face getting there. Technology needs to be embraced so that medical advice is accessed easily when needed. Those who can’t visit clinics tend to be forgotten about.
    At present social care is something that many of us do not have access to. I require services that will support me. Currently it is an all or nothing approach. I need to be able to ask for help and be given it for example during acute illness or flare up or to partake in activities such as swimming, visit to an optician, hairdressers etc where I cannot manage unaided. Social care is often only available if deemed critical.
    Achieving independence and self management needs resources in good rehabilitation with input by people who have got the condition. It also relies on ongoing financial support to pay for the increased costs that are often associated with living with a long term condition or disability. It is vital that we are given the opportunity to work education and a social life, This is an important strategy but how will it be achievable if many current recipients of disability living allowance have it taken away under personal independent payment? Having one or more long term conditions is costly. For many DLA is the only help they currently receive. To partake in society, employment and education relies on the Equality Act and the public sectors equality duty being enforced. Most people with long term conditions that severely affect activities of daily living are covered under disability in the Act. The Government seems to want the Equality Act watered down taking away rights of inclusion for many. Government needs to make it stronger so that we are not discriminated against in healthcare, work, and education
    I worry that locally managed services will be about cost cutting and allowing us to exist rather than live. It is vital that we have the right to innovation that can transform our lives, support self management, and give us independence not passive recipients of care. National policy is crucial on many aspects of care and treatment so it is no longer a post code lottery.

  123. Sharon Hannington says:

    I have lived with a LTC since I was 18months old, I am now 44. And I have to say things have got far worse and way too much money is being wasted on bureaucracy and time wasted with doctors who do not listen.
    10yrs ago my kidneys started to fail, due to my disability I was not given appropriate investigations as it was what I could expect. This was, in my mind, all part of a rationing process and the attitude was taken ‘Oh you are disabled, you will have organ complications treatment would be futile and costly. My knowledge of my condition was ignored. 3yrs later I went into end stage renal failure. I spent 11months have extremely expensive dialysis and the expensive drugs that come with this. I was placed on the transplant list, however I was denied standard transplant work-up tests. In 2006 I under went a hugely expensive living donor transplant from my mum, I now take incredibly expensive drugs to suppress my immune system so I do not reject the transplant. No doubt I will need even more drugs later on as the effect of a suppressed immune system takes it tolls on the rest of my body. Though even after the transplant I was telling doctors that I had the same pain as before and I kept getting infections.
    In 2009 after 7yrs after I first raised my concerns over my kidney function, I had a test done and I had a significant blockage preventing urine from exiting my body properly. I have had an operation to cure the blockage, yes it was an expensive operation but it would have been a hell of a lot cheaper if the right tests were carried out in the beginning. The NHS would have saved money on Dialysis, long term medication (I was on none prior to renal failure) and a transplant.
    I am now awaiting an operation to have my right native kidney removed as it is harbouring infections and could put my kidney at risk, yes another operation I would not have needed if tests where done earlier but not only that, I am on a waiting list to have the kidney removed. They have said I will definitely have the op but they can not promise it will be before I lose function in the transplanted kidney. So delaying this op could end up costing the NHS another bout of dialysis, another transplant.
    The NHS needs to ensure that everybody, as is their human rights, is listened to, gets appropriate investigations and preventive treatment in a timely manner if they truly want to save money and deliver a quality service.

    The other day following an out patients appointment I received a phone call from the renal transplant nurse asking if I would arrange to have a blood test done at my gps surgery. I rang my gp to book this but was told, by the receptionist, that I could not book one as they needed notification from the transplant nurse. I rang the transplant nurse back and explained, she rang my gp’s surgery and spoke to a doctor, then gp’s surgery then rang me to book a blood test. Now a blood test took two professionals, one receptionist and 5 phone calls to arrange, you add up the cost.

    Due to problems with my kidney function levels and the fact I am awaiting an operation, I felt it would be good if my surgeon and the kidney transplant team could liaise and come up with a plan of action as they are not talking to each other and it’s down to me to keep relaying to them what the others plan is. As they are both in the same hospital I felt this was a simple request. Oh no, in order for these two doctors to chat they have to have a request, in writing, from my GP to do so.

    I am sure an idiot could save money within the NHS and deliver a good service to all with LTC’s, well its not rocket science!

  124. Nina Barnett says:

    I am a consultant pharmacist for older people at North West London Hospitals trust, based in Northwick Park Hospital and a Pharmacy Adviser for the Medicines Use and Safety Team, part of East and South East England Specialist Pharmacy Service. I work with patients in both hospital and intermediate care (rehabilitation) and have daily contact with patients who live with long term conditions.

    The key issues that we come across around medicines for patients with long term conditions include the need for regular medication review with patients to ensure patients are involved in decisions about medicines, addressing appropriate use of medicines, ensuring good communication between hospital and primary care (GPs etc.) and providing on-going support with medicines.

    The problems of medicines management in patients with long term conditions could be addressed with improved coordination of services across interfaces of care (e.g. when patients come into hospital and when they leave), lack of funding of self-management programmes (which we are trying to establish locally) and provision of patient group networks, the need for a new approach to medicines adherence to empower patients around medicines and health and provide access for all to the excellent services of the expert patients programme.

    The initial problem is that is difficult to know which patients are living with a long term condition. It would be helpful if there was a local register of patients with long term conditions, accessible to health and social care professionals in hospital and primary care, similar to the one that has been established for patients with stroke. This register would help us to identify those patients with unmanaged, modifiable risks. Patients should have easy access to their own information (perhaps also being able to update it). In addition, if patients were able to keep their own health records (and I have come across some who do so electronically themselves), health professionals would have timely access to key information to improve safety and effectiveness of care, without the data protection issues for the NHS which currently hinder access to information across sectors.

    In our hospital we have developed a pharmacy service to identify patients who are at risk of preventable medicines related problems with whom we work to reduce their risk. Clinical staff on our wards contact their ward pharmacist if they feel a patient may need help with medicines issues. We then meet the patient and ensure that patients have their medicines reviewed in hospital if required. We support them in decisions about which medicines they want to take, using a coaching approach to medication adherence and communicate this and any recommendations to the hospital and primary care teams (e.g. GPs). We keep in touch with patients after discharge and signpost to other services where needed.

    We have learnt a number of key things during the development of this work as follows:

    • It is important to ensure that the hospital knows what patients were actually taking ( not just what was on the GP list) before admission – We need the patient or carer to help with this
    • Review of long term and new medicines in hospital requires information from outside the hospital and must be undertaken with the patient, as this can be overlooked.
    • Medicines adherence support, including medicines education, must be tailored to patient needs. We have found that our coaching approach has been well received by patients.
    • Full documentation of medicines changes and monitoring required after discharge on the electronic discharge letter must be provided to both patient/carer and GP
    • Communication and documentation of agreed actions with health and social care in hospital about medicines is essential for continuity of care in timely way, providing rationale for treatment and detailing monitoring required
    • Active medicines discharge planning (includes medicines compliance aid assessment and liaison with GPs, social care and community pharmacy) is required to support safe and effective management of medication after discharge
    • post-discharge referral, to ensure continuity of pharmaceutical care is required for
     primary care health professionals to ensure medicines related clinical follow up
     social care professionals and/or carers to address practical medicines related issues
    • Follow up telephone calls to patients after discharge are very well received by patients and valuable in helping patients to resolve issues before they become problems.
    • Patients who are able to be involved in their care are keen to use community pharmacists to support medicines management when they leave hospital, using the New Medicines Service and targeted Medicines Use Reviews, though this requires direct communication from hospital to community pharmacist as well as discussion and information for patients.

    We use a different approach from standard pharmacy counselling to support medication adherence , which was developed locally after I attended an NHS London coaching course in 2009, run by The Performance Coach (TPC). I became interested in how a coaching approach could be used by patients and was able to follow up this interest through the London GP deanery, who gave me access to a health Coaching master class and “Train the Trainer” course (run by TPC). I am now involved in training cohorts GPs and pharmacists in health coaching and have developed new methodology for pharmacist to support our work in medicines adherence, much of which is working with patients who have long term conditions. A “coaching approach” can be used for patients to help them to become aware of their responsibility for medicines taking in achieving the health outcomes they want (by using their medicines) and promotes self-management. Health professionals who have started using this approach find it is both a more satisfying and effective method for supporting patients with long term conditions.

    We believe that we are one of the only trusts who provide this level of inpatient support together with follow up telephone pharmacy support for patients after discharge. The results from our service from March 2009-April 2010 show that we saw 147 patients at high risk of preventable medicines related admissions, the majority of whom had long term conditions. There were no preventable medicines related readmissions within one month of discharge and 8 within one year. The combination of clinical and medicines review in hospital and general practice, good communication between health and social care providers in primary and secondary care, including patients and carers at all stages and bespoke adherence support during admission and after discharge has helped to significantly reduce preventable medicines related readmission rates in our trust.

  125. diana says:

    I have M.S. menieres disease and arthritis. Missed out is often the pain caused by debilatating conditions, as is severe fatigue. Just struggling day to day with these conditions is a full time job. All I want is to live in peace with enough money to manage.

    • ann says:

      I am a great believer in Self-Management of all LTC. This will explain the pain / fatigue that is common to a lot of LTC. I do wish the medical proffesion would listen to paitents that were diagnoised many years before as they can only add to the Paitients as Teachers that is praticed in many hospital/clinics..
      My biggest wish would be that they look at the whole person and work together on all the conditions a patiets as.

  126. Gillian Eames says:

    Hi I have a condition called Ankylosing Spondylitis that can also come with other health problems . To self mange my (AS) medications play a huge role but also so does excersise . Iwas mis diagnosed for 7 years some 30 years ago and I find it very worrying that many people are still not getting earlier diagnosis . l have (AS) severly and as a result have had to have spinal correction surgery.I was medically retired from Local Government in 1999 because of my (AS). This condition also affects you psychologically
    We need greater awareness in the public,political and medical domaine so that we do not come up against the various problems that people like myself do for access to best treatments and the benefit system. In regards to treatment and care it varies greatley to as to where you live . (this can not be right) We should all have equall access to treatment and care.
    I am a very positive person and try to stay as independant as I can and happy as possible living with chronic pain and fatigue but often this does not do me any favours when I am in a very bad flare up with (AS) people say you look well if only they new what I was feeling like . After my spinal surgery I was in a spinal jacket for 6 months and when it was removed l needed hydro therapy to help to become mobile again and the wait locally in Bromley Kent was up-to 18 weeks . l am fortunate enough that l am cared for at The Royal National Hospital For Rhuematic Diseases in BATH and was a inpatient within two weeks to help me with my mobility. This is another issue that concerns me the future of this hospital in BATH as it is a centre of excellance http://www.nass.co.uk/news/chief-exec-of-rnhrd-issues-statement/

    l find it very upsetting that on some occassions when someone in a proffesional position may be speaking to me has no idea what Ankylosing Spondylitis is and just takes it that l am smiling and seem ok so l can not be in pain . In regards to adaptions to help me stay in my home l am lucky that these have been done for me some years back ie Stair lift lowering of kitchen cupboards etc etc as l have lost 7 inches in height because of my stooped posture.

    Our main society for Ankylosing Spondylitis is working hard to achieve more awareness and better access to to treatments .

    l find it very demoralising that we have to battle for everything living with a chronic condition and outrages that l have to pay for medications to live as pain free life as possible .

    Gillian Eames

    Bromley Kent

    • Tony Deaves says:

      I have the same as Gillian. It took the doctors over 12years to tell me that I had AS even with my late father having it! It was always put down to my lifting accident at work. at the age of 20. I was a stonemason. At the time, I was the weight trainning for the hammer throwing. I stood 6’4” now I have curve(Kyphois)the of spine 600mm. I am unable to take may of the drugs for AS because I have allergic reactions to may of them. all wish is the medical people would take time see passed the first thing and look at the person as a whole .person.then Maybe I could have help earlier to control the pain

  127. Margaret Hughes says:

    I am a strong advocate of self-management and
    patient and public involvement in all aspects of the NHS and welcome the emphasis on long term conditions.
    People living with long term conditions need to be be at the centre of the planning and design for the future of the service provision if a culture change of this magnitude is going to be successful.
    It needs to be handled generically and not be disease specific. However the tendency from both the professionals and the patients does seem to be leaning towards condition specific.

    • Dr.George Bielstein says:

      While some more or less debilitating long-term conditions are more predominant in an ageing population, a medical diagnosis that attributes a condition merely to age may often fail to distinguish cause and effect. Equally we should lower our expectations to the level of available resources and place greater emphasis on interpersonal assistance by the active retired. This is where the seed corn of motivational expertise form across government – local and national – could make a tremendous difference.

  128. Lyndon Close says:

    I am a 40 year old pharmacist that would have replied to this consultation differently had i not suffered two DVTs over the last five years. I am now taking warfarin for life and am looking over the primary care fence from the other side; as a patient that lives with a long term condition (LTC).
    I will consider the points that you raise above.

    I have a desk job and am petrified about the consequences if being sat immobile for lengthy periods of time. I do move about when given the opportunity, but if i am concentrating on a specific piece of work I can easily remain motionless (legs) for 1-2 hours. More education needs to be given to employers and employees supported in being able to move around easily in desk based jobs. All desks I come across are seated; why? Work station options where I can stand should I choose would benefit my LTC. Also, being given time and opportunity to exercise during the working day would be invaluable. I don’t want a gym, but organised work walks seems very sensible. I could do this but I work hard and will continue working unless I have an appointment to, for instance, stretch my legs.

    I have seen no evidence of integrated care at all. The care I received for my first DVT was disastrous; I asked four different GPs if I was having a DVT before I was referred appropriately. My second DVT was much more straight forward; I informed the nurse at my GPs that I was having a DVT who referred me to hospital where I received astonishingly good care. Since i was released back into primary care? I have not seen a GP or any one person that specialises in my type of LTC. I see a nurse once in a while who takes my blood to send to the hospital that informs me of my INR. The nurse did take my weight once (but not height), but that is it. I have been given no advice from anyone in primary care about how I should manage my LTC and no attempts have been made for other public health interventions. I am obese (to the naked eye) but no-one has offered me help or suggested i loose weight.

    I am an expert in my own care because of my profession, but no-one in primary care has helped me achieve this at all.

    I know there are other services out there that help the patient with this particular LTC. In my area however, GPs have a monopoly on the service and will not let any other provider touch my patient group. Something that any willing provider is supposed to tidy up but I cannot see how.

    Government departments should be thinking along the lines that you have set out in this consultation. The patient needs to made an expert in their own LTC (too many rely too heavily on primary care providers to “spoon feed” them” and they need to be backed up by appropriate regulation. As an example the DoH and DWP need to talk – I want a work environment that promotes movement to keep my circulation flowing and stop me worrying about being too sedentary.
    Primary care needs a hub for all LTC patients to empower themselves and become more confident. Community pharmacy seems the obvious choice; they are open the longest hours, are the most accessible and very approachable. In my opinion, for my LTC, the community pharmacy could take the lead easily from taking blood to doseage adjustments. The added value comes with that they will offer extra public health interventions (obesity, smoking cessation, alcohol, exercise etc) and all for a fraction of the current cost. Community pharmacies are such sociable places, I would be able to meet other people in my position, learn more and improve my well-being. Currently I feel very isolated, unsure and uncared for.

    Make use of the fantastic resources you already have!

  129. Sara Sneddon says:

    For me, it’s imperative that first and foremost, anyone with a long-term condition is treated as a human being and not simply as a diagnosis. Dignity and respect must be key to all health services, ensuring that those working in healthcare have a caring attitude towards every patient and not view them as a “waste of time” – I have encountered both ends of the scale and it is only the positive interactions that have contributed to my wellbeing (I am eternally thankful to the caring health professionals I have encountered – they really do make a world of difference). It is also necessary to recognise that people with long-term conditions will all have their own unique symptoms, so you cannot tar everyone with the same brush or apply assumptions. And anyone with an LTC will admit to having good days and bad days – on good days, you wouldn’t know anything was wrong and on bad days it can be very obvious, but living with a long-term condition takes it toll both physically and mentally and the majority of the time you don’t want to admit to how bad things really are because you just want to make it through the day.

    And certainly a person with mental health issues should never ever be told that they are a waste of time or should pull themselves together. This is disastrous to their health.

    Providing support should be the main target for treating and managing all long-term conditions – this would be more cost-effective in the longer term, to help patients cope with their LTC rather than be treated for acute symptoms on a “fire-fighting” basis. Better to work on preventative or impact-limiting approaches rather than wait until patients require urgent treatment. It can take months or even years for some patients to access even simple forms of support via the NHS – so frustrating when you have a LTC and feel you should be in control of it, but instead are left at the mercy of waiting lists and a worsening of symptoms before you are considered to be in need of medical assistance.

  130. Keri says:

    Although I find the NHS works as well as can be expected for something so big and unmanageable. There are area’s that need addressing mainly the cost to so many people with long term conditions who do not qualify for free prescriptions. My understanding is free prescriptions were for anything life threatening, yet asthma is not included – how many people have to die from asthma attacks before it is classed as life threatening?

    I was born with cleft palate which has meant on-going dental work, much of which has to be paid for at the dentist. The other week I was in agonising pain from a tooth in the cleft. The dentist wouldn’t touch it as said he didn’t have the know-how, but the various hospital departments were talking months for appointments as the best they could do.

    I was really shocked that in this day and age people are left in pain due to no-one being able to deal with an immediate problem. My daughter called an ambulance in the end just to get some sort of decent pain relief. I am sure that I am not the only person, for whatever reason, who has been left in such pain for weeks due to no-one taking any action as ‘have to wait for the system’, this needs addressing.

  131. Anne Smyth says:

    The Carers’ Resource gives tailored support and information to unpaid carers and vulnerable people. It is an independent, award-winning Yorkshire charity which is open to everyone and offers emotional and practical help to enable them to cope.

    We provide a vital lifeline to carers of any age to help them cope with their caring role. Carers look after family, partners or friends in need of help because they are ill, frail or have a disability. Caring can mean unrelenting pressure, stress and worry. We help all carers. In the past 15 years, more than 17,000 carers have accessed our service.

    We agree wholeheartedly with the shared goals in the LTC strategy. However we believe there is a vital component that has been overlooked completely – that is the information, advice and support for carers of people with long term conditions (LTCs).

    Informal carers play a vital role in supporting those they care for to manage their condition and stay well, healthy and independent for as long as possible. Providing carers with training, information and support in their roles, in their own right can mean less demand on statutory health services. A knowledgeable and confident carer is less likely to panic and call an ambulance unnecessarily, thus reducing hospital admissions and out of hours service calls.

    Carers also need support to avoid becoming the next patients with LTCs themselves. Many unsupported family carers end up with long term mental health problems; over 50% are reported as suffering depression and stress related illnesses and many more remain undiagnosed and suffering alone. In addition long term physical problems can be brought about by inappropriate caring roles such as moving, handling and bathing without proper training or guidance on available equipment etc.

    Carers should be identified and referred for preferably specialist support in their own right at the earliest possible opportunity (ideally as soon as the patient with an LTC is identified). They can then be fully involved in care planning and management discussions to ensure the best possible outcomes for all.

    Finally carers of people with LTCs also risk social isolation, exclusion and difficulty maintaining or finding employment, education and leisure opportunities as their caring role can prevent this. Proper holistic carer support will encompass information and guidance on these topics and enablement for carers (as per the Carers Act 2004) to undertake these activities and maintain their personal social lives.

  132. Sally Dickinson says:

    I run the Helpline at the National Ankylosing Spondylitis Society (www.nass.co.uk) and speak to people every day about the problems that having a long term condition like ankylosing spondylitis brings. While I do help with lots of problems around medication and seeing medical professionals such as rheumatologists, I also deal with lots of enquiries about accessing a wide range of other healthcare professionals such as physiotherapists, occupational therapists and podiatrists. People with AS also need help with and information on accessing social services and with benefits such as Disability Living Allowance and Employment and Support Allowance.

    It is therefore important that the Long Term Conditions Strategy views the patient in a holistic way and takes all their needs into account. It will be important that this includes not just their medication needs but help with daily living and both work and state benefits.

  133. Maddy Randall says:

    Regular exercise for someone who has AS is not just a useful addition to the management of their AS: it is one of the cornerstones of treatment. Exercise is vital to maintain flexibility and good posture and also assists with pain management and well being. Regular exercise is already in-line with DoH’s existing strategy for self management of long term conditions, however currently people with AS are only receiving a fraction of this vital treatment through the NHS. Without regular exercise, a person with AS is at greater risk of developing the very stooped posture which is so characteristic of AS and which can have such a devastating impact on the ability to do things that the rest of us take for granted – activities such as driving a car, crossing the road safely, or simply looking someone in the eye when holding a conversation.

    The National Ankylosing Spondylitis Society (www.NASS.co.uk) currently provides people with AS access to at least 41 hours of group physiotherapy each year – that’s almost 7 times the average number of hours provided by the NHS. These NASS groups provide a vital role in educating people with AS about the important of exercise and self-management of their condition. They also help people with AS to feel confident about the way they are exercising is helping them. NASS recognises the importance of ensuring that these sessions are held in the evening so as to be fully accessible to people in full time employment preventing them from having to continuously take time off work. This is important when you consider that the time taken off work by people with musculoskeletal disorders costs the UK economy approx £7 billion a year.

    However despite the obvious benefits of providing regular physiotherapy to people with long term conditions like ankylosing spondylitis, patients have no choice but to pay extra for this vital treatment and not everyone can afford this. The situation is likely to get worse according to a report by the Chartered Society of Physiotherapists published in the summer of 2011 which highlighted the realistic outcome of the NHS cuts to physiotherapy services in reducing patient treatment sessions and leading to longer waiting times. Our NASS membership of 6,000 people would all agree that regular physiotherapy should be accessible to people with AS on the NHS and at no extra charge to the individual.

  134. Doug McLellan says:

    Whilst much care is excellant, there is little contact from diabetes experts other than at my yearly appointments. Unless I read Balance, the UK diabetes magazine, nothing is ever updated by the diabetes centre team. Would it not be possible to send relevant information to sufferers?

  135. keith paul briody says:

    i would like prescriptions such as anti depression and beta blockers to be included on the list of medicines to be free i have long term conditions that require these and my tablet cost would be expensive without a prepay and if you cannot get to the doctors if you feel that you have broken something you should have access to x rays without having to go to the doctorsalso if you have been advised to go on holidays that need a passport be exempt from the questions section so you can get one without delay also automatic entitlement to free travel so enabling people to travel who cant drive

  136. Julie says:

    Patients with long term conditions require easy access to education and advice from specailists. Many gp’s do not understand the complexities of long term conditions and warning signs of an acute exacerbation. waiting for review appointments is frustrating and upsetting.
    Improved communication between healthcare providers would improve services, especially as patients see physio’s,OT,Gp etc without a clear means of communication.
    personalised care plans would help to address communication but would require investment and training to implement effectively.

  137. P Forrest says:

    I returned to the UK 2008 with a damaged knee from Moscow armed only with pain killers. Then delivered into the hands of the NHS. After scans,physiotherapy,operation, physio’ again. Numerous privately paid for therapies. Backed to NHS, then sent to Chronic Pain team to find out, i have something called Fibromyalgia. Then the work started. Courses, working with specialist team. Learning about illness,medication, state of the mind, what help is out there. Contacts for local groups, regular seminars. Just had one. Plus a one to one working relationship with the team. Even acupuncture and tai chi. In short we cannot afford to play around with such a GREAT health system.

  138. james says:

    The government is spending far to much on long term ‘disabled’, carers, blue badges etc mostly for people who dont really need them. My wife and I are housebound for 6-8 weeks due to broken bones and both on crutches, but because we have worked all our lives we get NOTHING, cant even go to the shops with relatives because we cant park in a disabled bay without risking a hefty fine. 6% disabled bays, 1% valid, 2% lazy and 3% empty. absolute disgrace.

    • jean says:

      I’am sorry to hear about you and your wifes problems being on crutches not be able to get out it must be very frustrating I do understand as I have had to use crutches for the last 25 years do to being born with Hip Dysplasia which started to effect me realy bad in my 20s.When I was 23 after a operation on hips they found I had Degenrative disc disease ,Prolapsed Discs,which meant by the time I was 23 I had to come out of due to being on crutches and in constant pain the specailist told me I would be in a wheelchair before I got to be 30.Last year found out I had Ankylosing Spondylitis and I had been suffering from it for the last 20 odd years .Now my neck is fused back is fused and pelvis is fused lost most of the sight in left eye due to a complication of A.S and on morphine because of the pain in spine and hips pelvis ect: and after use a powerchair to get round now. You might be thinking by now why I’am I telling you all this well it’s because of the coment about the goverment throwing money at the disabled the money I get goes on a car which I can get a powerchair that I use to get around which wasn’t provided by the goverment my family paid for it , adjustable bed with memory foam mattress to help with my spine because of pain and fusing which again we paid for a disabled extention because I can’t use the stairs in my father house where I live which my father paid half towards the only thing I have had given to me is crutches which over the years have got through several pairs but now we have been told the long term disabled in our area might have pay for ourselfs .So I hope you have a better insight on where all this money you say the goverment are throwing at the disabled goes.Hope you and you wife have a speedy recovery and are able to get around better realy soon .

  139. Steve Paget MBE says:

    There are so many issues with the current system of health and social care, it is difficult to know where to start.
    For anyone with an LTC it is a nightmare to navigate through the complex maze of support and services out there to eventually [maybe] find the support/advice/treatment you need …if you ever do!
    A vital requirement is that of a ‘key worker’ – an individual who is knowledgable of your specific health and social care needs and competent enough to be able to direct you, or to advocate on your behalf when things go wrong [and tell me the name of anyone who hasn't had a problem!].
    Everything needs to be joined up, from diagnosis/treatment, rehab and ongoing support in the community. This needs to include housing, on-going treatment/therapy, return to work possibilities, therapeutic options, mobility etc, etc.
    Come along, this is not rocket science – it is common sense!
    What most ‘professionals’ and the Government don’t get, is that it saves resources long term if people are supported – it is crass stupidity to allow people to reach a crisis point before giving an often ‘short-term’ fix, put in place to try and resolve the often un-resolveable.
    Obviously, some of the strategies for assisting those with a LTC are working, but for others the approach is failing dramatically, leaving some feeling abandoned, and not understood.

  140. Maria Nerdrum says:

    Scoliosis need to be addressed as this is a rather seriously painful condition and incredibly difficult to get help for. There is amazing expertise in this country about this condition but the problem lays with our GP’s and the general public.

    There is almost next to nothing of information for the general public and the GP’s do not spot the problem and do not refer us to the experts. I have yet to walk into any medical practice, and I have been to plenty, where I can find any info on the boards or in a leaflet about scoliosis.

    This can be a serious crippling illness to have and I have personally struggled my whole life with this without getting any help. I keep asking to be referred to a scoliosis expert but I am refused this over and over again. I cannot work, I cannot do anything in fact as I lose the feelings in my legs and I generally have difficulty in moving my body. When I do I just have so much pain that there is no way to describe. I have no life at all what so ever and I am only able to write this because I am still alive.

    I am not the only one unfortunately as it would have been better if only one person suffered. There are loads of us and yes, loads of us! They suffer as much as I do and we are in a way thrown out of society as we ask for painkillers, which are rather strong and for this reason we are seen as drug addicts. After a while GP*S do not want to touch us as we represent a problem they cannot deal with.

    This is not only wrong but it is also destroying perfectly capable human beings who can work and contribute to the society IF we only can get the help, which is out there.

    GP’s do struggle with the amount of patients coming with back problems and this is their way of dealing with it. First you are sent to a physiotherapist, which can help mild cases but the case itself is not addressed so the problem will carry on and get worse. The same patient will come back to the GP with back problem at some point and a new round to the physio is what is prescribed. When this does not work you are sent for an x-ray. An x-ray need to be interpreted by an expert in the field where the problem lays so an orthopedic is not enough for us.

    Without understanding the cause we cannot get help and we end up going in circles year after year. A lot of us do not even know we have scoliosis, which is causing the back pain in the first place. You can have been born with it, it can develop when you are a toddler, child, young teenager and later on in life as an adult.

    The British Scoliosis Research Foundation says that 95% of children in the juvenile age range with scoliosis go on to require surgical treatment at some point in life and this should be carried out before the age of 30 preferably and no later than 40. After that age they cannot correct the spine but can help us with our damaged disks, which in some cases actually can help to correct the spine too, but the surgery at this age is for the pain.

    So there is help there for us but we cannot get it due to no information for the public in general and training of GP’s to understand this rather complex problem. If we can get help by going to our GP”s straight away we do not need to become long term suffering patients and we can work, enjoy life, not let those around us suffer because of us, pay our taxes and be of rather little burden for the NHS long term wise.

    Information and training is paramount on the grass root level so to speak. If we can get this then maybe more medical students will also specialice in this area and we as patient will get access to those specialists we already have and who can do an amazing job for us.

    Funding is paramount but I am sure with help from the British Scoliosis Research Foundation and Scoliosis Association SAUK not that much is needed. There just need to be a bridge made between these two associations and the general public as well as GP’s.

    I have given my GP information from these two organisations as I am trying to get referred by him to see a scoliosis expert but he even refuses to believe the papers I have presented to him. He even shouts at me and tells me loudly that I am a lier. How many more of these do we have here? Plenty, as I have met several myself and this just goes to prove why it is so difficult for us to get help and why this is a serious issue that needs to be addressed in this country!

  141. Rachel Georgiou says:

    Throughout my role I see many people who have long term conditions and the main concern that they always have is that the professional who they go and see don’t communicate with each other, meaning the majority of their consultation time is spent relaying information. Also when they go to visit health care professionals they are not listened to and struggle to get their point across.

    I run self management services to support individuals who have many different health conditions and all find that they struggle to communicate well with their consultant and don’t get the anwers they require but feel silly asking.

    Most of the time patients just want to be listened to and want to find out as much information as possible out their condition. Communication skills should be built into training packages for health care professionals.

    In addition to this preventative health care and patient education is key. Now I don’t just mean a telling off from a patients GP or a practice nurse telling them what they should be doing, a structured education package to support patients in making the best lifestyle choices for their health condition.

  142. Anne-Marie says:

    I think Personal Health Budgets should be a top priority to enable people with a long term condition and those receive NHS CHC funding to manage and direct their own care- empowering individuals to lead the life that they choose.

  143. Adrian Whyatt, Chair, Including Everyone; Co-Chair, Autistic Rights Movement United Kingdom (ARMUK), inter alia says:

    No involvement of neuroatypical (aka neurodivergent or neurodiverse) organisations or considerations of our issues in this strategy.

    Which is unacceptable.And blatantly contrary to article 4.3 of the UN Disability Convention.

    These are life long conditions. Where is the linkage with other strategies (the Autism Strategy included)?

    The principles of universal design (of the environment and services) are also required in the delivery of services.

    The right to self-referral. The right to study what you want at your local university without time limits, provided you have the basic qualifications are also required if we are ever to produce enough professionals to reach the highest standards (currently, because of a long history of open enrolment, Italy has 14 times as many neurologists per head of population and over four times as many GPs).

    Sensory integration therapy for all those who want it, and full metabolic screening for all neuroatypical people and others who want it as part of the assessment and diagnostic process are also required.

    And tight and accountable targets rather than waffle.

  144. David Edwards says:

    I write from the mental health LTC perspective, one who has benefited greatly from the joined-up thinking practised by my GP and my psychiatrist. Yes there are gaps but my experience has been and is that communication is key, that the psychiatrist need to know the physiological context s/he is working in and that the GP needs to know more than jut the body. Happily for me, this works very well at a local level (Somerset) and there are many aspects of the care I have received that would contribute to any best practice paradigm that comes from this particular consultation exercise.

  145. Hilary Denyer says:

    For 30 years my life was blighted by the condition endometriosis. I now have a daughter suffering from the same disease.I work for the charity Endometriosis-UK both on their helpline and running a support group for women and their families.One in ten women have this disease. The cost to the country in £8million a year in lost work. The care these women receive is abysmal. There are not enough gynaecologists who specialise in this disease.When women make repeated visits to A&E with severe pain, that is not controlled by the cocktail of drugs they live on, they are subjected to a battery of useless tests and suspicious questions when they ask for opiates to relieve the pain. Doctors seem to resent the fact that these women research the disease and want to discuss their options for treatment–it’s as if they feel threatened.Maybe it’s because the gold standard for diagnosis is a laparoscopy which is an expensive option that hospital trusts are reluctant to carry out due to financial restraints. Many women are even told that it is not a life threatening disease and to go away and live with it. GPs seem to be reluctant to refer women and they are often told that it is normal to suffer extreme pain with periods. They appear to be gatekeepers and not signposters as the government states they should be. The condition is totally mismanaged by them. I am stunned by the fact that the treatment that was offered to me 25years ago is still being offered to my daughter now. It was an ineffective treament then with horrendous side effects. Very little money is spent on research and most of what is spent is by drug companies with a vested interest. I would be interested to hear how the DOH is intending to improve the lives of people with LTCs–are they genuinely interested in improving their quality of life or is it just a cost saving plan in disguise?

  146. Martin Carruthers says:

    First up, I have just spent 20 minutes trying to find a place to comment! It’s at the end of 280 comments… Er, wouldn’t it be better at the top? Shouldn’t the information be in front of you rather than having to search?

    This is kinds key to the point I want to make. Nothing joins up. I have a GP, Neurologist, MS Nurse, practice nurse, physiotherapists, and more. My medical records are now – at last – computerised, but if I see a consultant, or end up in casulaty… they can’t access them. PATHETIC! I understand the reasons for privacy & data protection, but why is there no “Opt-in” option to make my medical records available to anyone who needs them?

    Benefits… Again, don’t join up DLA, IB, CA, Blue Badge and so on. The system is massively too complicated & time-consuming. When your health and ability is at it’s very lowest – is exactly when you have to tackle this monster. How on earth do I know what I am entitled to, or what may help me when I’ve had a long and productive working career? AND… I’m ill! I get adaptions to the house from OT, but a bed from the MS nurse, while the OT provides a risers/recliner chair. LUNACY! I need to ask for a referral to wheelchair services, when it’s obvious I struggle to walk. Then, it takes over 12 months to provide a power chair.

    Make medical records & treatment available to ALL who need them.

    Have a single point contact for benefits, house adaptions, equipment, mobility, blue badge, vehicles, transport, prescrition charges, life-style changes and so on. Make a sympathetic face-to-face assessment, then go away and return with what’s needed! It’s not rocket science. Oh, and remember to pop in for a cuppa every 6 months or so to check the provisions are optimised & working!

    Then there are 101 “nice-to-know” elements National Trust, Theatre, Cinema concessions, travel passes… I constantly discover something new which adds to my quality of life, but there is no one place to find it all, so people miss out through ignorance.

    In fact that sums things up nicely. People who need support miss out through ignorance of the monsterously complicated “system”.

    Forget petty party politics & bickering – form a politically idependant stratergy of long term joined up thinking for those with long term needs.

  147. David Rockett says:

    I have been in receipt of long term care at home since a C 5/6 spinal injury in 1985. In that time I’ve been involved in many projects with health and social services as well as being a lay member of the County Council Social Services Committee and the now defunct Community Health Council. During that time there have been minor hiccups in my care from both agencies but in general I have no complains about the standard or the organisation of the care.

    Before I joined any organisation or group I was asked by a County Councillor to write a piece about my care in the couple of years I had received it since leaving hospital. I have since lost it but the one thing that stands out in my mind is the argument about joined up services and the buzzword at the time, “the single point of entry”. That was the general idea that Dorset was talking about then, about 1989. Over the years the provision of services has improved and departments and agencies do talk to each other and generally try and work together. For instance there is now a hospital at home service, run by the NHS, that has an OT manager but can call on nurses, physiotherapists, equipment, its own ancillary staff as well as any other NHS department. Alongside this SS are running a reablement service, which does a very similar thing except anything to do with nursing. When the SS reablement was set up the managers/policy makers were strongly urged to put money and manpower into the NHS scheme and increase the scope of the whole team. But no, they had to have their own separate scheme, why, I’m not sure but it could be something to do with individual stubbornness, want some of the glory, intransigent councillors or even that old warhorse, ego. So the service user in the system gets looked after and channelled in the right direction but those outside often don’t know who should be looking after them or how to access the right people. The single point of entry never did happen.
    This has happened many times over the years I have been involved in user groups, it is very difficult to get SS and the NHS to work together successfully, even in the same location, they are always reporting to different managers. Your strategy of involving many departs and ministries, 12 I believe, in the strategy, is the right idea but the final outcome must somehow get the essential agencies such as the NHS, SS, mental health, housing, LA’s working together with clear objectives at a local level, that means the doers and their managers. Preferably in the same office/building then there is no excuse for not working together. In addition they must have good, clearly defined access to the services of any other agency that a service user my need. Unfortunately I’m doubtful it will be totally successful with the current structure, the NHS is run by managers who are generally willing to try new ideas to provide services. They are flexible. SS is run by a more rigid structure with many policy makers and councillors at the top and any new ideas are generally debated in many meetings and decisions sometimes have to go to the top. There is often a culture of protecting your own organisation which, if rigorous, means the service user is not getting the service they should. Your strategy partners in policy making are good but until you change the culture and separation, however severe, at local level I am doubtful of a successful outcome. Perhaps it’s time to put the essential agencies together under a new name and divorced from their original agency to provide good integrated care. Strong guidelines will be needed when an agreement on any new strategy is reached to ensure they work together.

    To finish, I have enjoyed good services here in Dorset, not always joined up but I’ve been able to make sure everyone has liaised with each other to provide what’s been needed. Initially I received my home care from DCC, about 23 years, but latterly from an agency called Agincare. DCC were on occasions very inflexible, to change the time of a visit was usually difficult and a flat no was often the initial response, and when it was agreed it was often grudgingly as though you were being done a favour. The actual care though was excellent, well trained happy staff. I have now had 18 months experience of Agincare and in this area they too are excellent. Again good well trained staff and far more flexible than DCC, nothing is too much trouble. I do realise I’m lucky living in a rural where it is probably easier to organise services but it still has to be done on the ground. All down to the quality and training of staff.

    David Rockett
    Service User
    June 2012

  148. susan manley says:

    Do not know whether my post got posted.
    If it did don’t bother to read this, if it didn’t here I go!!
    Basically at the moment I feel that when I demand it I get support for my long term conditions BUT, and it is a big but, each area, disease or illness is treated independantly with little or no reference to other areas. As I suffer from a range of problems including CHD, Diabetise, asthma and anxiety and depression the treatments and diets often counter each other and at times seem impossible to manage.
    I would therefore ask that part of the long term care package could be a form of co-ordination for sufferers of multiple conditions, perhaps a co-ordinating nurse.
    At present I feel I am often being treated as individual parts rather than a whole person

  149. susan manley says:

    As a patient with a range of long term conditions including CHD, asthma, Diebitis and depression I am concerned that my needs are met by such a range of specialists and bodies that no one co-ordinates the care I need. Some way of ensuring that the whole person is cared for rather than each individual disease would be a wonderful step to be taken.
    Perhaps some sort of co-ordinating nurse rather than a asthma nurse, a diabetics nurse, the bowel nurse, the specialist GUh clinic [the best of all] etc.

  150. Deborah Cope says:

    My role involves visiting patients at home who have multiple LTC, multiple medications and are at high risk of being admitted to hospital. I can give high level clinical support and co-ordinate a complex web of health and social care needs.
    I work in an integrated team of advanced nurse specialists in clinical care, OTs, Physios and support workers. Untill recently we were also integrated with social service collegues but this was then disintegrated.
    There are two main points I would like to highlight.
    1 Integration of staff is the only way to properly support patients with LTC. The improved joint working and communication improves outcomes and increases quality. Having highly skilled clinicians who are at the ‘bedside’ is beneficial and as an experienced nurse who independently prescribes my place at the front line is cost effective and successful for patients, families and collegues.
    2 Quality care for the patient from a named clinician within an integrated team allows for continuity, individuality and a personalised plan of care and support that patients regard as quality care and supportive. Having that ‘primary clinician’ who the patient knows and trusts to help negotiate the nhs and co-ordinate care benefits everyone.

    Deborah Cope CM. June 7th 2012.

  151. Jayne Grimson says:

    My son was diagnosed with AS in 2008, he is in the RAF and was made to march and complete exercises when he was undiagnosed. He went onto develop Crohns disease, diagnosed in 2010. He suffers bullying at work through a complete lack of understanding of his condition. Being in the military means his treatment is disjointed through changing SMO’s at camp, consultant’s in different locations for each condition and no advice from dietician’s or mental health support to help him come to terms with his conditions. I feel a ‘roadmap’ of treatment would at least make the treatment more joined up for someone in his position. Policy makers should also target the military for these conditions to educate them in managing long term conditions and help senior ranks to assist in managing staff and protect them from bullying. Military medical care appear isolated from the civilian world and an ability to link up services and care would help greatly. There could be services he is not accessing at present in the civilian world. When my son comes to leave the RAF we have no idea of how he would be managed or costs of medication, etc. It seems disfunctional that he is so isolated and probably not getting all the support he needs.

  152. Vanessa Taylor says:

    Responding on behalf of Community Pharmacies in East Sussex

    Issues that need to be addressed and could be supported by community pharmacy –
     what problems you face, either living with a long term condition or in your work affecting people with long term conditions, and how you think these problems could be tackled
    1. A requirement for Involvement of the patient’s community pharmacy as part of the discharge care pathway to support patients with their medicines on discharge – this could include a home visit for those housebound patients. This would ensure their medicines were being taken correctly and they were taking the correct medicines.
    2. Advice on newly prescribed medicines are supported by the New Medicines Service and targeted Medicines Use Reviews – more publicity should be given to patients with long term conditions about this service and the benefits for the patient made clear
    3. Making more use of community pharmacies to deliver public health messages to people with long term conditions to help them live better with their condition, building on the healthy living pharmacy initiative and making more use of healthy living champions (specially trained health advisors) who work in each healthy living pharmacy.
     how local services can work together to make life better for people with long term conditions
    1. Better communications between all people involved in the care of patients with LTCs
    2. Patient held records
     how people with long term conditions can be experts in their own care and how services can be based on their individual needs
    1. Treating the patient as a whole – many patients have more than one LTC and each is treated in isolation by different care pathways in community pharmacy and in the GP surgery we deal with the whole patient and can support them as a whole.
     your experiences of different ways of working or your ideas about this

    2. Community pharmacy should be given the opportunity to work more closely with Adult Social Care to understand how individual patients may be supported better
    3. Making more use of community pharmacy delivery services to engage with housebound patients with long term conditions – this should be a commissioned service to ensure standardization of service delivery.
     what common aims you think government departments should be signing up to, relating to all long term conditions
    1. Treating the patient as a whole and not providing care in silos
    2. Better communications across all sectors – built into the system – (a good place to start would be care across all sectors at discharge)
    3. Involvement of all healthcare professionals working together for patient benefit
    4. Not discounting the contribution that community pharmacy can make to provide patient care for LTCs. Community pharmacy will have contact on a regular basis with all patients with LTCs.
    5. Building on the Healthy Living Pharmacy initiative to support people with LTCs

  153. Denise says:

    I have suffered with depression and anxiety for quite a while. I am better now, but what could have been done years ago to help me get better a lot quicker is to have had a counsellor on a regular basis via the health service and someone like a counsellor that I could have phoned up when I was having a problem. There is a terrible lack of anyone to talk to when you are going through problems, I don’t have any uncles or aunts as both my parents were only children, my grandparents were all dead over 15 years go and my sister lives 400 miles away and has a family of her own. I was abused as a vulnerable adult by my father who was a violent alcoholic, I didn’t have anyone that I could turn to for help that was working in the health care professions that was clued up on what its like to have a violent alcoholic parent, my mother also had a drink problem and was heavily influenced by him in the past, people I tried to ask for help were in the church but they didn’t have a clue either and so I was left all on my own trying to cope with abusive parents after my sister had left home and I had to move with my mother to another area as my parents divorced, I had no one to help me cope with the divorce of my parents and having to move to a new area where I knew no one and being the child of divorced parents was very distressing, there should be more help for children of divorced parents and studies done on how this impacts on children, I was 22 when this happened, because of all this I became very depressed and got an anxiety problem, then I received further abuse by my parents as I was then vulnerable and they were both then drinking alcoholically and I had no where to live because of the housing shortage, so I was abused by them. I am now 51 and have never had any long term counselling via the NHS because of all the abuse I had, I have had to pay for this myself and it has taken years to get myself together because of the disgusting society that we live in that there is no help for children of divorced parents, or even children of alcoholic parents. So this made me have a long term health condition of anxiety and depression because I was not helped with ‘talking therapy’ until I was much older and could pay for it myself, but I could have been working years ago if I had had the help of a counsellor that I could have talked to on a regular basis. Anti depressants are ok in the short term but if you have been abused by the kind of parents I had then you need long term counselling and psychotherapy to help you understand about why your parents were like this and to be able to work it all out, thats what the NHS needs is long term counselling, not community psychiatric workers that are trained medically, but people that have done a degree or a three year certificate in counselling that have been thoroughly trained in this subject, because I have met community psychiatric workers and they are not counsellors and do not do counselling. A counsellor is like a psychotherapist and community psychiatric workers are not psychotherapists are they! Please find out more about who counsellors and psychotherapists are and their training and please believe me that this is what people need who have or are going through trauma in their lives and also this will help them get well quicker and go back to work, they then will not be a burden on welfare benefits whilst they sit around indoors all on their own trying to work out what the hell has happened to them in their lives, they can get over the shock of a family falling apart quicker if they have people to support them and talk to on a regular basis, this will also save the government money as they will not have to pay out for all the drugs for years and years and years that is anti depressants, that just keeps the lid on things and doesn’t actually heal the process of trauma.

  154. Barbara says:

    Throughout the many years I have been researching my condition, as an analyst, I have noticed that MANY, MANY neurological conditions have a CORE SET OF THE SAME SYMPTOMS.

    As Neurological conditions are often very complex and consequently difficult to diagnose in a timely fashion in our current system, there ought to be a central repository to collect feedback from patients or their relatives or carers, to enable collection of useful data.

    The repository needs to be very comprehensive having a base set of the more common symptoms, already input into it, for patients to select and add data to, no matter how trivial they think it is (because this might hold a clue to effective treatment in the long run). They could maybe have a tickbox to select what aggravates that symptom and what eases it (be it heat, rest, massage, posture, drugs, lotions etc).

    They could give feedback on what drugs or treatments they were given to address that particular symptom (or another symptom – if it had any affect on it), noting whether it made a difference (or not) and quantifying the ‘amount’ of difference, this is important as many drug treatments merely superficially address symptoms (like pain for instance). This could help identify any drugs or treatments that are greatly affective, or were redundant, or ineffective, or harmful.

    It would also give feedback to the medics and scientific people, those with the knowledge of the working of the human body, for them to contemplate and peruse over, when trying to solve the mystery of the cause of the various conditions.

    This repository would need to be keenly structured (i.e.not just in free text format) to make it easier to analyse and search (by anyone). This would enable the ‘common denominators’ of any complex condition to be clearly identified and tests and research can be designed around reality (and not just on the limited data that medics or drug companies collate).

    My theory is that probably all complex neurological conditions are composed of ‘blocks’ of symptoms (as various bodily systems become compromised) and these need to be clearly identified and ‘mapped’ to their possible causes, so that a more informed diagnosis can be made and effective treatment plans developed.
    Barbara Thompson.

  155. Maggie West says:

    I mention those jobs above because through ill health in my family,I have lost all of those careers and the associated hundreds of thousands of pounds attached.
    I have the priviledge of being a carer for two ill people with long term conditions needing monitoring, managing and constant practical and mental support.
    I do not begrudge a second (often!) as I care and love my family more than life itself.Every day and every second of our lives together, we battle one system or another in order to survive and enjoy a reasonable quality of life.
    The struggle never stops and in amongst that endless hardship there is the added pain of watching and imagining those you love being healthy again.What they would have achieved in life without the curse of ill health? However these imaginings are society’s stereotypical perception of the “norm” i.e. humans only as a productive and money raising unit .
    Then I smile inwardly at the actual achievements I have seen my two precious family members achieve with such bravery.
    Inwardly I smile smugly because it feels like they have attained heights which most can only dream of within the realms of courage rather than materialism.Not that one can deny the sadness of the loss of potential to do great things in a career.
    They have had to battle not only long term and chronic debilitating illness but stigma,discrimination,family division, judmentalism from areas which have been totally devoid of fact or any evidenced base knowlege.They have been subjected to disabilty abuse many times in car parks and on the street,in GP’s surgeries from GPs and their receptionists…..
    From government departments and the media,from deceiving politicians soley motivated by gaining votes and remaining in power at others expense…….From unkind,hurtful and ignorant remarks from hospital staff and professionals ,from staff at citizens advice bureaus,job centres! Yet still their courage has risen above all of this and inspired and humbled me.They are two amazing people who are kind and considerate to others,rarely grumble or feel sorry for themselves even with the mountainous burden I have listed above.
    Imagine carrying that load around with you on a daily basis? Many people do suffer this burden like my two and then we as a public plunge the knife in deeper by reading and believing the abusive headlines in the tabloids.Stories which are motivated not by truth but by greed and an unquenchable thirst for power and profit. This added insult not only denigrates and worsens illness through mental anguish and stress it is a blatant participation in disability hate and abuse toward our loved ones across the UK.
    I feel incredibly proud of my family but sometimes in those secret and dark moments we all know , I privately indulge in a few tears as my heart breaks for them. Why is that you may ask?
    Well,apart from the obvious illnesses which will never go the tears are shed as it pains me to see the loss of dignity and humiliation they face when the media and community at large paint them as fraudsters when in fact they are heroes!They deserve the best care, all our respect and admiration for how their lives have been taken off them and then tarnished by people without compassion. As I often say, compassion is a very important word and if we are to lose it,we lose our civilisation.

  156. Dean Wales says:

    Im Aspergers with co morbid clinical depression.Its taken decades to get to the point of being severely clinically depressed with suicidal ideation but now i have the primary diagnosis i thought that i would be able to access psych help, but No, im now less able to access mental health services as the PCT doesn’t commission services for autistic adults and having suffered through inappropriate counselling that devolved into abuse and bullying i had been pressurised into by a GP who bluntly told me Aspergers doesnt exist, im quite unwilling to risk further damage to my mental health by referral to untrained in autism therapists.So much for the force of the AAS.There are no services-period-in my own area and i told by people in a similar position in adjacent counties that it is replicated there.
    In the past i have worked full time, attended at University and was proficient a self monitorer to enable me to participate in society, all lost now as i found ASB on the basis of disabilty not considered worth investigating by police or ernvironmental health or indeed the housing association, resulting in 5 years of escalating abuse and its inevitable results.Access to appropriate, adequately trained therapist may, actually i think it would have had a positive effect, i should have been able to return to work, to regain a social life but the demand avoidant features of my disorder are very much apparant now, providing barriers to effective therapy.This shouldn’t have happened, that it has is down to poor education of health and psych service providers.This life of tiredness and headaches, non productive battling suicidal ideation is draining and confidence destroying and i relied on constant reality testing to maintain confidence levels as they kept me able-i cant do that now, the reality is what it is.
    Aspergers was a problem as a child but a stressed out 15 year of version of me addressed that, access to initial employment with a firm that had awards for employment of those with disabilities showed me what i could do, enabled me to develop skills to cope and engage, gave me my first position of responsability and the kid with 11 year school phobia, at 26 gained a place at University.It all went wrong when the depression, less intrusive for many years, gained hold and the impact it has upon my ability to cope with the Aspergers, to be bothered to make eye contact, to address the demand avoidance before it overcomes, has radically changed my life-and there is no where to get appropriate treatment for it.Hence currently im assisted by my mother to cook, to ensure safety as im prone to wander off leaving saucepans to boildry and melt, she does my shopping as im frequently adverse to crowds and unwilling to cope with it any more.As i give in to it all, i lose the skills i earned and worked to hold onto,simple skills to enable socialising without provoking bad responses, to enable monitoring of behaviour.Although i hold a UK driving license, im less competant and confident of this skill any more.

  157. John Pohorely says:

    I believe a key barrier to delivering a reasonable level of Care to all is the high caseload numbers. My recommended caseload should be 250-300. I have over 700. I often support other family members as well as the person with MS. This inevitably results in reactive “Fire Station Management” rather than considered negotiated sustainable proactive plans that are more cost effective long term.

    Another barrier is the devide between Health and Social Care Teams. We are all there to benefit and support the same people but do not understand each others language. This creates delay and missed opertunity and budget pressures means we are rewarded for washing our hands of a person with a long term condition back to “the other side”

  158. jacky barfoot says:

    I have recently been diagnosed with complex regional pain syndrome/reflex sympathetic dystrophy, a life long fluctuating central nervious system and neurological condition which is little funded nor little understood. It affects eyes, memory, cognitive ability, muscles, limbs, bones and causes extreme pain, stiffness, exhaustion, hormonal problems, and mobility issues that fluctuate, in many instances it mimics MS, Lupus and other conditions, which is why it is hard to diagnose. It has taken 6 years of been dismissed, misdiagnosed and not taken seriously, until i was refered to a rhumatologist with suspected Lupus and the RSD/CRPS was found. There is very little support for people like myself and very little awareness amongst GPs etc. There are days I can hardly walk or move, or I need to go to bed for the afternoon due to my legs and feet swelling up, it is a very lonely and frustrating and exhausting illness and commonly refered to as the suicide illness as many take their lives due to the pain and the psychological problems it can cause due to the central nervious system going haywire and affecting the brain. Some of the treatments are extreme – these been ketamine, methodone, opiates, benxodiazapines etc and spinal injections etc. How can anyone with this condition when it is in the more advanced stages ( due to misdiagnosis for years) or when it has gone from one limb to systemic all body, be expected to hold a job down, when they cant even go beyond the house some days or weeks and have poor sleep due to it, and skin lesions etc. There is also the issue of mutipul illnesses, as I also have menieres ( which is a crippling ear condition that causes vertigo and sickness and deafness) and also poly cystic ovarian syndrome ( which can cause diabeties) and endometriosis ( female condition that causes intense pain and heavy periods) and IBS which causes intense bowl pain and bowl incontinance. The Government NEEDS to make allowance for these conditons and not force sick people into poverty and debt and homelessness due to their long term conditions

  159. Gyan Tyagi says:

    I have Chronic Sarcoidosis. I have received excellent care from (most) healthcare professionals over the years.
    Aside from professional care, the most positive help has been from the Expert Patient Programme. The only downside to this approach is the name- doctors and nurses seem to fear having patients who are ‘experts’. However, the training afforded by this short course has been life-enhancing, in that I, and the many other people attending, have learnt a number of strategies to enable us to lead lives which are positive and self-directed.
    It is interesting that the course encompasses elements of the government’s preferred CBT strategy and healthy living norms. As something which is not disease-specific, I think it would be an invaluable addition to the overall help given to those with LTCs.

  160. Andrew Low says:

    I’ve had schizophrenia since the 1980′s and I find that there is little psychological help.Psychiatrists and other doctors basically present you as the patient with a wall of silence.
    The stigma of mental health problems and schizophrenia in particular is colossal.
    One thing that has been a lifesaver for me is Sahaja Yoga http://www.sahaja.org I wish more people could be persuaded of its benefits.
    In 2003 I was “highly commended” in the category of courage by the Beacon Fellowship Trust for writing about my schizophrenia and for spreading Sahaja Yoga.
    More should be done to talk to patients with mental health problems.The doctor hasn’t done his or her job just because they have prescribed a medicine.That is often just the easy way out and dodges the issues presented by the mental patient.
    Sometimes it can be twenty years or more before someone with schizophrenia or their carer or relative even hears about some of the charities.These are Rethink and Sane and Mind and others.
    We need people to shine a light on this dreadful and cruel neglect.

  161. Barbara says:

    Oh, I forgot to mention, I had no help, other than from a few sporadic volunteers from 2004 – 2009, as I couldn’t work and couldn’t afford to pay anyone, so in addition to my poor condition I had to sleep in my clothes, cook my veg unpeeled and unchopped, wore my clothes unironed, often ate food with little nutritional value, as it was all that I had (or could get). Some weeks, unless someone phoned, I wouldn’t talk. I had to devise ways of managing tasks the best I could, which sapped all of my very limited strength. I was a house prisoner, my only crime was to get ill!

    I had trouble (due to lack of diagnosis) getting Benefits (I lost count of the number of tribunals I attended and “lost” despite my mounting evidence!), trouble getting a Blue Badge, trouble getting an appropriate wheelchair in a timely fashion, the list goes on and on, letter after letter, phone call after phone call, complaint after complaint. My whole waking time was absorbed with fighting for survival and fighting for justice and I bet many people writing here have been through the same.

    We are the one’s you need to consult, in order to build a system that doesn’t further destroy the lives of those already ailing.

  162. Barbara says:

    I have a long term condition (well several actually) which only became apparent following a head and neck injury which happened in 2002. I expected, being self employed, to have to have just a week or two off work, for my body to recover, then get back to normal. That didn’t turn out to be the case.

    I developed a progressive cascade of symptoms that led to me becoming disabled and unable to walk (or work) within 18 months. I complained about the symptoms (of which there were many) time and time again, to a different neurologist every time I attended clinic (there was no continuity). Just to be looked at in disbelief, with little to no investigations and little to nothing being done to help alleviate any of it.

    I was offered painkillers that didn’t address the pain, merely superficially addressing it, or other drugs which made me fuzzy headed (probably would have put me in a state to ‘stop me complaining’ had I taken them – they certainly did little else to address my symptoms, or the cause of my symptoms). The neuro-rehab consultant told me to go home and research opiates – I think she thought she was talking to a student!

    I have spent perhaps 20% of my available time these last 10 years either arranging or attending appointments, trying to pursue effective treatment, that will give me some quality of life back. Had I been given approriate investigations and treatment at the time of the accident and in the subsequent months, probably none of this would have been necessary.

    Being a Computer Systems Analyst and Tester by profession, I knew the importance of correct and adequate testing, in order to maintain a reliable system. The body too is a system and my experience was that having insufficient investigations (or inappropriate investigations) left my injured body, remaining in an ailing state. That needn’t have been the case, had my healthcare been better managed.

    After 2 years, having been failed time and time again by the NHS, with my life ebbing away, I had no option but to carry out the research myself, seek out knowledgable consultants and pay for private investigations.

    My diagnosis with the NHS was ‘mild concussion’. In desperation, I spent my savings and remortgaged my house. However, this £40,000+ of my own money, has so far been well spent, as I now fully understand my condition and have been able to recruit effective treatment for some of it.

    I found out that I was suffering from the following:
    * Postural Orthostatic Tachycardia Syndrome (POTS);
    Peripheral Vestibular Dysfunction;
    Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.);
    * Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004);
    Whiplash Associated Disorder (WAD);
    * Low Lying Cerebellar Tonsils (Chiari 0)
    * Cranio-cervical Instability (CCI) – discovered in USA in 2008!
    with Posterior Gliding (PG) & Cranial Settling (CS);
    Retroflexed Odontoid; Stretched/Elongated Brainstem;
    Vitamin D deficiency;
    * Ehlers Danlos (EDS) type 111 (NHS 2010)

    . . . . to mention but a few. So several questions sprung to mind
    1. Why had most of this NOT been picked up by the NHS ????
    LACK OF COMPREHENSIVE EDUCATION in the medical fraternity

    2. Several of these things, I could not get any treatment for – why ?
    LACK OF KNOWLEDGE – N.I.C.E. didn’t even have them listed, so
    no treatment plan had been devised.
    – No mention of them on the NHS website

    I also more recently discovered that I have been suffering from the symptoms of mildly raised intercranial pressure for years, yet still no-one’s diagnosed it!! The only recommended treatment available seems to be a shunt – which many many people on the forums have had years of trouble with – but why is this the only option, when there are emerging effective drug treatments, yet my GP refuses to give me them and they are not available over the counter, so I have no other option. Or do I ?

    Another question, can I get back any of the money I have had to spend in order to get diagnosed ?

    My life has been held to ransom long enough, I have suffered deeply for TEN YEARS. I have worked all of my life prior to this (I am 57) and heavily contributed into ‘the system’ – not out of choice but as a requirement of the law, yet, when I have needed the services of this system it has treated me with gross inequality because I DONT have any of the ‘more common’ diseases/ailments!

    Very little money has been spent in research and very little, if any, attention has been paid to documenting, teaching and advising of several of my conditions, even though they have been known of for many years. Individually, these may appear to be rare conditions but believe me, some are only rare because they are grossly under-diagnosed and many people of this country are suffering from mis-diagnosis or non-diagnosis. Either way, I know I am not alone in my suffering.

    The Hippocratic Oath talks about not doing harm to anyone . . . . .
    MUCH HARM is being done to many people in this country – believe me!
    ——————————LET’S PUT THIS RIGHT——————————

  163. Barbara says:

    If the government stopped to analyse (correctly) the cost of inadequately dealing with, for example a neurological condition (i.e. inconclusive referral after inconclusive referral) it would see that enormous amounts of money are just being wasted. Bring back the NHS as it was in the 50′s where, you went to hospital, a group of consultants would assess or review you (around your bed), then they’d request appropriate testing and would analyse and treat you BEFORE you were sent home. So, you either went home ‘cured’ or with diagnosis and effective treatment plan, all within a matter of a few days or weeks. Also you were back working and paying back into the economy in no time.

  164. Jane Clout says:

    *People will be supported to stay healthy and avoid developing a long term condition, where possible.

    Absolutely, but sometimes people get sick for no reason other than external ones. Bad things happen to good people.

    *People will have their conditions diagnosed early and quickly.

    In the case of my illness, ME aka CFS, part of the diagnostic protocol is that the disease must have lasted for six months (in adults). This is a crime, when (anecdotally, I know, I haven’t the funds for a study) the first few months are the only opportunity for recovery, by bed rest, good diet, supplementary nutrition if necessary, and reducing stress. There are two excellent diagnostic protocols available, The Myalgic Encephalomyelitis – International Consensus Criteria and the Canadian Consensus document on ME/CFS. Instead, UK GP’s use the Oxford or the Fukuda, which misdiagnose by 40% (1,2)

    *Services will be joined up, and based around individuals’ biological, psychological and social needs.

    Fabulous! If only it were true. As it is, all I have been offered are enough pain killers to kill me as well, and anti-depressants, when I am an optimistic soul, indeed, I used to be known as ‘smiler’. I was offered a course at the CFS clinic, but it was too far away, and I am basically housebound. I have asked the doctor for various helpful supplements and medications, but have never had my requests allowed.

    I bless my DLA, which allows me to purchase many things that help me. I am however, still pretty much house-bound. The process of proving my eligibility, via two applications and a tribunal, was responsible for an aggravation of my symptoms, but it was worth it in the long run.

    *People with long term conditions will be socially included, including succeeding in work and education.

    If they are well enough to engage, then absolutely. In my case, I try to help and support my family and friends by telephone and online. I engage online politically and socially. That’s about all I’m fit for. I’d love to be better, and be able to do more, I have some ways forward, but they are disallowed by my medical professionals.

    *People with long term conditions will be as independent as possible and in control of their lives (up to and including the end of life).

    Great! Give us the wherewithall – suitable housing, practical help, sufficient funds, and we’ll do the rest.

    *People with long term conditions will be supported to stay as well as possible.

    Yes please! Sigh….

    1) http://www.ncbi.nlm.nih.gov/pubmed/21132135
    2) http://www.ncbi.nlm.nih.gov/pubmed/22571806

  165. F Hornby says:

    I have several LTCs – mild epilepsy, depression & enthesitis. I have had the epilepsy and depression since childhood and, on the whole, I have accepted these and and have learned to live with the impact they have on my life. The enthesitis is relatively new (diagnosed just over 2 years ago) and has had a significant effect on my life.

    Firstly, I had to pay to get a second opinion in Feb 2010 because the Rheumatologist I saw at my local hospital in Dec 2009 said it was ‘all in my head’ and she could not find any evidence of joint problems! This was humiliating and frustrating, not to mention expensive! I would expect all health professionals to have been taught basic skills in how to deal with patients and value their feelings and opinions and to respond to them with empathy and compassion.

    Secondly, I had to leave my job in Dec 2010 because the pain and side-effects from treatment made it impossible to focus on work whilst trying to manage the Enthesitis. I feel employers should be show understanding when dealing with employees who have been diagnosed with LTCs – particularly when the employer is a Doctors’ surgery as in my case!

    Following the appalling consultation I experienced at my local hospital I am now treated at hospital in a different town, which involves a round-trip of several hours and a total of 6 buses! However, this is a small price to pay because the staff at this hospital treat me with respect and, most importantly, “believed” me when I told them of my pain and the impact it had on my life.

    I hope there will come a time when ALL medical staff treat patients with the respect and humanity they deserve and we are no longer in a ‘postcode lottery’ when it comes to quality of care.

  166. Caroline Smith says:

    As a person with MS I find it very frustrating finding my way through the maze of health,social care and benefits. There seems to be a lack of co-ordination between services. My GP is fantastic but I can’t expect him to know everything about my condition and what services are available. My consultant neurologist and MS specialist nurse are also great and are helpful with medical issues but I run into problems as they are out of the county that I live in so can’t always advise on where to go or who to talk to in my county. I end up seeing different people who don’t have access to my medical information from different hospitals. With social care and equipment it is very difficult to access as no-one seems quite sure who you should see. It would be better if all services were much better co-ordinated and talked to each other. While I appreciate that all people with MS experience different issues, services do need to work much better even accross county or comissioning borders. I often feel that I’m beating my head against a brick wall trying to explain my issues to people who don’t understand especially as I have problems with fatigue and cognition. Access to benefits has also been a major issue, the form to claim DLA is so long and complicated that it took me 2 months to fill in, I struggle enough to try and stay working and all the other daily struggles that this was just too much.
    My consultant and GP accept that I am the best person to know what I can and can’t do but others seem to struggle to accept this. If people are to be more supported with LTC there needs to be the acceptance of the LTC itself and understanding that many of them like MS have no cure, no treatment and anything that can be done is only controlling symptoms or disease modifying which may prevent worsening of the condition but ultimately things are likely to go downhill. Many people I meet just don’t understand this and so I find I’m not only trying to obtain things or treatments that may help but having to provide education at times when I really don’t feel well enough to do it. I would very much appreciate feeling that services work together to provide the help and support that I need to live as normal a life as possible. I have to say that the best support I have has is a my local MS therapy centre in Bedford which is a charity but does have all services under 1 roof and if they can’t help they usually know who can, maybe the NHS and social care agencies could learn a lot from them!
    As a health professional I meet many people with LTC who seem to share the same issues as me, often people need aids, be it to help with walking or continence issues and fine that they have to wait for months before anything happens and whne you have a problem you need help now, if it is not forthcoming they can end up with worse problems due to the delay, possibly necessitating a hospital stay which wastes health care resources but does get the aids needed as hospitals seem to have better access to the aids needed and access to social care as without it people end up as bed blockers.
    My overall comment about living with a LTC and a disability is that life shouldn’t be this hard

  167. rachel taylor says:

    i am a 34 year old woman with an one severely arthritic hip and one hip with another condition, secondary issues with back etc. i have found that the most supportive and helpful thing for me is the prevention of further damage to those parts of me that are healthy, as my hip is now worn and needs to be replaced, however i need care to ensure that my back does not become a bigger issue, my knee, my ribcage, my neck etc which are all taking extra strain, from the nhs massage and supportive care would make the chance of me getting further serious problems less likely, i pay for all my physio and massage myself, i have whatever painkillers i need supplied by the nhs but i feel that the massage and supportive therapy become part of a package of care which would lead to a reduction in painkillers and i would hope a reduction in further issues with my back; it is very demoralising when you have always been active and fit and what gets you through is the support that you never thought you would need, this may be reflexology, or hypnotherapy to deal with pain, support from fellow sufferers, which is not available unless you can go out there and find it yourself; many issues arise when dealing with a long term chronic condition, how do i communicate effectively to family and friends how i feel,how do i deal with pain levels, lack of sleep etc, all in all i feel the nhs deal well with an immediate solution but when you have a chronic condition you need an holistic approach, you need painkillers when the pain is intense and unrelenting and you cannot sleep or function, but then you need the support for when you have had a good day followed by a bad as that knocks you for six, i find i now manage my condition with a mix of physio, sports massage, painkillers and operations to come but it is a holistic approach which will provide me with the best care and the chance of the longest time without further injury

  168. Charlotte Jenkins says:

    I suffer from Ehlers Danlos Syndrome type three (Hypermobility). This is a connective tissue disorder which arises as a result of a defective collagen gene. Collagen is an important protein in the body and so it affects people in a huge variety of ways; hence it is known as a zebra disease (no two people have the same symptoms and no two zebras have the same stripes). The nature of the condition makes diagnosis incredibly difficult; i am 18 and only received a final diagnosis a matter of months ago, despite presenting my first symptoms to my GP aged 7/8, it took around 10 years to finally be told what is wrong with me.
    I often find myself searching the web looking for other suffers to talk to about EDS, and the general consensus is that we find ourselves educating the doctors about the condition. There is little research into Ehlers Danlos as it is a rare genetic disorder, Doctors seem to know little about it; and rather than admitting that they do not understand the problems i face i have been told on numerous occasions that i am a hypercondriac, that there is nothing wrong with me and i imagine it.
    for ten years i went back to my doctors with various problems from constant stomach ache, muscle spasms in my back, shin splints, dislocating fingers, and hips that partially dislocate with every step. The doctors NEED TO BE EDUCATED IN CHRONIC (AND RARE) CONDITIONS…i feel this is the main problem with the health system.
    In society i feel constantly judged, i appreciate you can never completely eliminate peoples perceptions of you especially as i look perfectly healthy on the outside. I have to use a wheelchair on days out and i use crutches to get around otherwise, i cannot write as my fingers dislocate when i pick up a pen. i feel there is a lack of understanding of chronic conditions in society as people often assume if you look okay then you must be on the inside.
    On an average day out i face several challenges once i have managed to get up, washed, dressed and out the house. My application for DLA was unsuccessful; despite the fact that on a bad day i cannot walk more than 20 feet, this means i do not have a blue disabled badge and so cannot have priority parking spaces. Due to shoulder problems i struggle to push my wheelchair which is not helped by the uneven pavements throughout towns.
    Places need to be more disabled-friendly, all pavements should be level, doors need to be wide enough to fir a wheelchair through and shops should be easy to navigate through with checkouts that are accessible at wheelchair height. As ridiculous as this may sound, in order to improve facilities for disabled people, it would be a good idea to send a ‘normal’ person out in town (or anywhere) in a wheelchair for example, then they will be able to see what aspects need to be altered in society.
    Disability is such a taboo in society that it is never really openly discussed; this results in prejudice and a lack of understanding from both those in the medical profession and those that are not. Doctors need to take a genuine interest in there patients and to see them as a whole person not just a list of complaints.

  169. Roy Cross ALIAS says:

    When ever I have had contact with the NHS as a patient, I have been delt with quickly & professionaly, Though as a NHS employee I often find that lip sevice is played to most of the guide lines. Example before our last CQC visit our manager warned all the staff not to “talk out of turn” . During supervision if you bring up any problems you are made to belive that the problems will sorted, but things carry on the same. Try to suggest change in working practice that allows staff to work more efficently & save the Trust money, then you are bombarded with “Health & safety will not allow you to do this or that”, but health & safety is not there to stop us working just do the job safely

  170. Stefan Wisbauer says:

    Congratulations on taking a long-term and systemic, cross-departmental view of the issue. A few key points:
    1) Prevention will benefit business quicker than the NHS and getting the NHS, councils & business to co-invest in coordinated systematic evidence-based integrated interventions becomes a big opportunity to make public money go further. A business contributing incentives and co-financing screening and behaviour change support can lead to 60%+ participation rates and a Return on Investment for all involved. It requires enabling technology (which we already have running) and getting Dame Carol, Prof Boyle and other experts (Healthy Cities, HWB, social care, police & fire etc.) into one room rather than keep them in silos.
    2) Putting incentives and responsibility into the system both at individual and clinician-level will make sure we don’t go by the dangerous assumption that education alone is sufficient to drive behaviour change. Nationals who do not show up for their screening programme in Abu Dhabi lose their free healthcare: 99%+ participation. Denmark pays more for e-consultations than face-to-face: rapid uptake of innovation. Those are just examples.
    3) Once diagnosed, technology can support self-management but just sharing health records is not sufficient. A patient needs to understand their risks, what preventive testing guidelines mean for him, have access to their record, be able to update it, get meaningful behaviour change support, understand their local services etc. all in one, personalised place and connected with their care support.

    We work with one connected self-management and population health management system that works across the risk spectrum and all of the major conditions and works with existing or complementary capacity staff-wise (it also works online only making interesting large-scale scenarios affordable). We have peer-reviewed and published outcomes. We work internationally and in the UK with patients in Stafforshire and at NHS Addenbrookes and in Derbyshire with an NHS workforce. We also work with numerous other private and public sector clients.

    We are happy to go into details and give further structured input into the government strategic reflections.

  171. John Peters says:

    I have Primary Progressive Multiple Sclerosis. This gives me chronic pain, fatigue, very poor mobility, weak muscles, foot drop, incontinence and some cognitive issues. Despite this I am still in full time work. Thankfully I have an understanding and flexible employer.
    To get to work I use an adapted Motability scheme car provided from my DLA award. I also have the low care component of DLA with pays for my continence supplies.

    My incurable PPMS is not exempt from prescription charges. As part of the LTC strategy I think this should be considered. Fortunately (if that’s the right word) there is no medications offered for PPMS but there are some prescription charges for symptom suppressing drugs. In my case all the symptom suppressing drugs have side effects that are worse than the symptom so I am currently not taking anything.

    I was invited to trial a device called a Functional Electical Stimulator (FES) for my Foot Drop condition. This helped me walk easier and would in the log term help reduce my fatigue as I use less effort in walking. However, the PCT will not pay for it. It would cost me £750 which I don’t have. As the FES is supported by NICE guidelines it really aught to be available on the NHS. Perhaps the strategy would support this.

    Between Oct 2013 and Mar 2016 I will be invited to claim Personal Independence Payment. Listening to Maria Miller’s definition of disability I should have nothing to fear from this reassessment. Listening to almost everyone else I fear the ATOS sledgehammer approach means I do need to worry. I feel my DLA award was spot on but I really don’t know how reliable this new assessment is going to be. I fear I will end up having to go through an appeal process. I have also heard that the Government is fiddling with the appeal process too. This is all very worrying. I am main breadwinner in my family. I have a lot to lose.
    I actually agree that DLA needed a reform but as a working person I worry that I may be a victim of the overriding desire to cut costs. It seems crazy to me. I currently pay far more in taxes that I receive in DLA but the result of the reform could put me and my family depending on benefits.

    As this reform is going to happen anyway (I am a realist), I think it would be helpful if they could allocate PIP assessment appointments in advance. They know who are currently on DLA and they know the assessment will be between 2013 and 2016. Having an assessment date would help me in planning my future (as far as I can) rather than having this assessment hanging over me for four years never knowing when the blade will fall. This whole reform issue is causing people with LTC to worry and this cannot be good for our health (especially if we will be worrying for up to four years.

    It would also be helpful if ministers would stop referring to “supporting those with the greatest need”. Everyone knows or can imagine someone with a greater need than themselves. This just feeds the worry that despite my obvious disabilities I may not be disabled enough. I struggle on through pain and difficulties but this effort may in itself exclude me from the support I need.

    My family, friends and colleagues all tell me I have nothing to worry about but when I see how the WCA has turned out I am not so sure.

    Thank you for giving me this opportunity to tell you how I feel about this.

  172. Ralph, Cleethorpes says:

    I think the healthy eating guidelines need to be reviewed. Whilst the food industry may be encouraged to adopt the guidelines, did they ought to be involved with formulating them for instance (conflicts of interest)?
    The obesity rates have escalated since the NACNE 1983 guidelines were introduced. The FSA found that we are eating as closely to those guidelines as we have ever done; clearly they aren’t effective.
    I believe the evidence indicates that carbhydrates need to be moderated (they are being overemphasised).
    Also, the demonising of saturated fat, based on observational studies, has resulted in focussing on their restriction, contributing to nutritional deficiencies such as a rise in rickets; not only due to lack of sunlight, but because vitamin D is a fat soluble vitamin. Encouraging consumption of processed oils in preference to natural fats has not demonstrated an appreciable improvement in chronic health conditions. This experiment has been going on long enough; any benefit would have been revealed by now.

  173. Karl says:

    I was diagnosed with HIV 19 months ago. I embraced my conditon and have motivated myself to improve my life choices. I have encountered direct discrimination within the work place when I requested reasonable adjustments. The types of negative attitude towards someone living with HIV that I have witnessed really is shameful.
    People need to be educated to dispell the rediculous myths and negative images surrounding a long term health condition such as HIV. Particular attention needs to be placed on nursing and residential care homes training of their care staff. As people living with HIV are living heathier longer lives it is’nt necessarily HIV they die of but another condition.
    Ignorance is not an excuse, but a committment to facilitate good education on health promotion and understanding HIV awareness within the UK.

  174. Sarah says:

    I suffer from Endometriosis, Hashimotos, Sympysis Pubis, Hypermobility and Diverticulitus.

    I’ve had multiple exisions of endo by a fantastic gynaecologist at Glos Royal, he looked after me so well and I’m pleased to say I managed to conceive and have birth to a beautiful boy in October. I do still suffer with severe pain from the endo however I have other issues to contend with also.

    I also have Hashimotos thyroiditus for the second time, the first time I also had a multi modular goitre which was pressing on my windpipe so they removed the right hand side. Since giving birth I have been up to 28.9 Tsh, tired is an understatement, chest pains, neck pain, my TPO has been at 500 and is now dropping slightly.

    During my pregnancy I developed Sympysis Pubis which left me unable to walk and toward the end I used a wheelchair.

    I also suffer from hypermobility and take regular pain relief as combined with the Spd and bad knee, ankle and hips I find it terribly difficult to manage. Sometime I can’t even manage to walk to the shops.

  175. John Hanton says:

    Back in December of 1984 I was getting ready to go out for a new years eve party. I never even made to the party as I fell down the stairs when my leg gave way. Went to stand up and found I couldn’t (and I hadn’t had any alcohol either).

    I think it was 3 or 4 days later I was in hospital undergoing an operation on my left hip (the first of five operations I needed… Four on the left and one on the right). The doctors didn’t exactly know what it was but they could see that my joints were snapping in and out of the sockets and so they called it “Snapping Hip Syndrome”.

    Over the years the pain I got from my joints (by 2000 I was on morphine plus other meds to handle the pain). Then I went to see a orthopedic specialist about a problem knee… he asked if I minded him teaching his students regarding me. I said “no problem” and he went and put me through some simple tests (which turned out to be the Beighton Test). He explained to his students I was a classic case of Joint Hypermobility Syndrome. I was amazed and when I explained to the specialist that I hadn’t had a firm diagnosis he was amazed too. Turns out that operating was the worst thing that could have been done for my condition.

    Consequently I have learned a lot about my condition and found that a lot of other symptoms that I have are all linked to my Joint Hypermobility Syndrome. The chronic pain, the constant fatigue (as the muscles have to work twice as hard to keep the joints stable), the daily subluxation of joints (partial dislocations that cause the chronic pain) and various other symptoms. It means on bad days I tend to spend the majority of the time lying in bed. If I want a cooked meal I order a takeaway. I can’t do much housework because my joints cause constant pain and shooting pains that leave me in tears when I try to do too much. Kind of hard for a 51 year old man to admit but this condition is like water torture… the longer it goes on the more pain it causes.

    When the weather improves I can do a bit more but autumn, winter and spring I can end up bed bound. I really, really miss being able to work but I just don’t know how I am going to be from one day to the next. I hate having to make appointments for things as I often have to cancel them because the pain is too great or it has kept me awake all night and I am too tired to drive. The pain makes a mess out of my sleep cycles because I sleep when I can because I can’t always sleep at night.

    I try to do small shopping trips at a time and even that wipes me out when I get home and put the stuff away… Every time I end up flat out on bed and downing painkillers like smarties. But if I didn’t do it I would end up stuck inside even more and I need to do even small amounts of exercise if I’m to not become housebound or stuck in sheltered housing. I want/need to keep my independence.

    Joint Hypermobility Syndrome is one of the “Invisible Ailments”. To look at me you would think I am a normal fit person. If a doctor examines me though he can find the unstable joints with ease. The last board of examination I went to at Five Ways in Birmingham told me that I would not have to go through the hassle of applying for the DLA again as it was obvious it was a degenerative disorder (the doctor actually saw my shoulders sublux – I would have done my hips but they were not long since they were operated on).

    I am really concerned about this PIP assessment. It will need for a doctor who knows about Joint Hypermobility Syndrome to correctly assess me. How can someone with a multi choice questionnaire assess the human condition. To have a comprehensive questionnaire would probably need a book of them to be six inches thick at least.

    I don’t like claiming DLA/Income Support and every time I have tried to go back to work I ended up back on support when I ended up either passing out or tearing tendons around joints or even going as far as dislocating major joints. One of the associated problems with JHS is poor proprioception. This means not knowing where your limbs are in respect to your body… i.e. I am very clumsy. Doesn’t sound life threatening but when a fall can mean dislocations or subluxions (partial dislocations) it does mean it is very painful. I think an example of how easy it is to dislocate joints is when I fell in the bath and both elbows hit the bath sides and popped out both shoulders. When I tried to get out of the bath I ended up subluxing my hip as well.

    At least these days my joints are stiffening up a bit… but only because they are suffering from osteoarthritis and causing even more pain.

    So chances of going back to work and doing even simple things is… Nil. Long term prognosis… poor. And this government is causing genuine disabled people unnecessary worry in my humble opinion. If you want to re-assess the DLA you should have sent them back to the original tribunals again and not got a FRENCH firm with a poor record to do your hatchet jobs. Couldn’t you find a single English firm to do the assessments? I’m not being racist here but there are a lot of unemployed in this country that would have welcomed the work.

  176. Clare Hunter says:

    I have lived with an arthritic condition for over 10years. The local hospital has frequently been dismssive towards me and not belived the extent of my pain., this has resulted in me traveling 200+ mles to London to get the appropriate help, support and medication.
    My GP has been extremely supportive and done all he can with his lmited time and rescources. As a result of his referal I am now being listened to and taken seriously.

    To live day to day with chronic wide spread pain not only affects the way you move and your ability to do things, it impacts on you mentally, emotionally and can have a damaging effect on relashionships.

    I lost a full time job that I worked hard to gain promotion at, due to the inabity to manage my condition. This impacted on my mental health and made my condition harder to manage.

    Many people do not realise the debilitating effects of living with a chronic condition.
    If I could change things I would ease the burden of paying for mediction which you use frequently. Why is it if you have diabetes or overactive thyroid you get prescriptions free . Arthritic and chronic pain coditions result in the need of constant medication use and we have to pay fortis. Does anyone think this is right or fair??,
    I would ask professionals to listen to patients and not fob off pain as ‘in their head’, the chronic asin is real , so please listen.

  177. Lorna Hopkins says:

    I have a child with type 1 diabetes, she is 3 years old. We are fortunate enough to have an excellent Speicalist Diabetes Nurse, I know this is not always the case for some people. We claim DLA and I am about to claim carers allowance as my working hours have had to decrease in order to care for her. I have taken a lead role in her care since diagnosis (in August 2011) which I believe is the best way forward. I get my advice from other more experienced parents via the net and from the specialist nurse. Unfortunately if my work had not been so understanding I would have had to give up my job, luckily I work very close to where my daughter goes to nursery but financially we are worse off. I used to be a teacher and this would not be possible now. I would like to see more robust links between health and education. We are currently applying for a statement but as her needs are largely medical it could be refused when clearly she needs the support just to stay safe let alone access an education. Out of hours care in our area is very poor. They have recently invested more money into paediactric diabetes as it has been recognised that care is poor, but the money is not ring fenced so who knows if things will improve. GP’s, doctors and nurses have virtually no knowledge of insulin pumps in our area so that makes things difficult when the specialist nurse is off and you need advice or are admitted to hospital. Overall, care is good, but this is down to one amazing specialist nurse that goes above and beyond. If it were another person care would be very poor indeed. There are other things I could mention, but these are the main issues.

  178. Rachel Battersby says:

    Waiting time far too long. GP knowledge far too poor.

    As someone with a sibling with rheumatoid arthritis (who has never tested positive for rheumatoid factor) I didn’t expect GPs not to take the condition not seriously just because I didn’t test positive for it. It’s clear whatever genetic strain of the disease I have it doesn’t test positive and this is the case for 20% of all sufferers – why don’t the GPs know that.

    The GP advised me to ring the surgery a couple of days after she’d sent the referral. I waited 4. And was told it was very early to be ringing up by the admin staff. I was contacted two days later by the central appointments people asking me why I hadn’t booked an appointment – the referral information I needed to do so was sat in my GPs admin department.

    I have a 10 week wait whilst I deteriorate to see the specialist. I have no pain relief drugs. I have no anti-inflammatory drugs prescribed. It’s just wait whilst more of my joints are affected and it becomes increasingly difficult for me to work. I know they will not be able to reverse this deterioration. Why are rheumatoid arthritis patients not fast-tracked given that the damage in waiting is irreversible and untreatable? Not every joint can be replaced by surgery.

    Very unsatisfied with lack of treatment and advice available. This can lead to permanent disability – why isn’t more being done to stop it since you can?

  179. ebony pitt says:

    I am an endometriosis sufferer diagnosed 3 years ago after 12 years of continuous visits to my GP with the same problem. I have been continually treated for UTIs Thrush, even and STD related condition PID. I have also had colposcopy & cysts removed before finally having a laparoscopy. I like may other sufferers have been frustrated by the lack of diagnosis. It took me sobbing to me GP and only by paying to see a consultant privatley for me to be reviewed. If I hadnt of paid I was going to be given another course of antibiotics for PID (which I have never had).

    My consultant has been excellent my area is berkshire and have been on zoladex for 18mths which has improved my life considerably post 2 x laparoscopies. I cannot comment on my future as soon I will need to come off the medication when I am ready to start a family.

    I am also frustrated that many of the treatments for this condition are complimentary therapies such as acupuncture and nutrition advice yet these treatments are extremely expensive and unaffordable for many people. With all the research available why cant there be access to these services via the health service? not free but at a discounted rate as this would surely assist with the cost of medications as a whole? perhaps if these treatments were available women would not need to remain on as much expensive medication which costs the government a large sum of money.

    GPs need to be aware of this condition as do employers and consideration to employees that this condition does not go away or cure itself but has good and bad days. I work for the health service and although my work have been understanding, when faced with a bad day I am faced with the question why or still? we should not be penalised for a condition that is simply labelled as a womens problem and compared to the typical period pain when it is very very different.

  180. Clare Burton says:

    I was diagnosed with endometriosis in February 2010 after being in constant pain since October 2009. After my diagnosis I tried a number of different treatments including 2 different types of pill and an induced menopause. I should point out here that I was only 18 when I went through this. Can you even imagine going through menopause at 18?? So difficult! Unfortunately none of the treatments I tried relieved my pain and so around May 2011 I was discharged by my gynaecologist as I was told there was nothing more to be done for me. I was told that the likelihood of my pain being caused by the endometriosis was so minimal that it wasn’t worth looking into any further and that I would just have to “put up” with it. I felt completely abandoned. I begged the gynaecologist to run more tests but was refused. I felt like nobody cared or even believed me. Unfortunately the pain just kept getting worse and worse. Finally It became too much in December 2011 and I booked a private consultation. I waited 10 days from my consultation to have a second laparoscopy, I had the surgery and afterwards the doctor described why my pain had been so bad. The endometriosis had been growing on my bowel causing it to sick together. So in the (almost) 2 years since my diagnosis the disease had been getting worse and nothing was being done. Going private was the best thing I ever did. The NHS is a joke. Endometriosis is a serious condition that can effect a woman’s fertility and to just be passed off like its nothing is heartbreaking. I’m not even 20 and the NHS could have ruined my chances of ever having child of my own. Fortunately according to the gynaecologist my womb is still healthy. The NHS is just a waste.

  181. Claire Sawers says:

    I have suffered with this since I was 14 (19 years). With the help of some incredibly helpful and caring doctors and specialists I am now in a place where generally I am managing it. BUT it has taken me a very long time to get here – gynecologists who were unsympathetic and said that “everyone suffers period pain” but perhaps not everyone causes you to collapse in a heap in A&E unable to walk.

    My main concern is the unnecessary cost I have cost the NHS by repeated trips to A&E because I wasn’t referred to gynecologist early enough. It took 11 years to diagnose my pelvic pain, which not only made me doubt my own sanity but also prevented me from managing it with appropriate drugs. Sadly acute chronic pain for 11 years has caused me to be left with nerve pain similar to a phantom limb syndrome. even though the cause of the endometriosis is largely gone and under control I still experience pain. I have worked hard to stop taking pain killers (reducing the cost to the NHS even more) because I had superb experimental CBT at East Surrey Hospital pelvic pain clinic. Unfortunately I believe the funding has been pulled for this, but this short 6 session course gave me the life skills I use today to control the pain and avoid drugs.

    Now I’m trying for a baby and on a waiting list to see gynae, but yet again I’m in agony having been unsuccessful and not on any drugs for over 18 months. I now struggle with my day to day life. Brushing my teeth is a challenge, as well as desperately trying to keep down a job, whilst my sickness record is increasing… I have battled to lead a semi-normal life. Just sometimes the NHS needs to see the full picture. Telling me when my appointment would be would give me strength and focus, to get through everyday, but I’m in no-mans land not knowing when it will be, with my GP desperately trying to be as supportive as he can.

    Perhaps the decision makers need to spend a day in the life of a long term condition sufferer – you book holidays around when you might be ill, you get frustrated that you cannot achieve what you want to in life because you have to find time to rest, sleep and relax. when the pain management is out of control you lose your ability keep your overall health – you can’t exercise, you get more stressed trying to keep your job, (because you’ve nearly lost it before). Daily tasks such as washing up, washing, cleaning are so daunting you panic and can’t do anything. The pain makes you feel so sick you can’t eat, so then you get every virus going, making you feel worse and you start the downward spiral….

    Psychological help is invaluable. We accept the condition can’t be cured, but a positive attitude to stop the downward spiral keeps you going. The medical profession are too keen to try and “fix” you with laparoscopies and laser treatment which do help, but it doesn’t stop the pain for long. We need to learn how to manage the condition and carry on with our lives. Not to be signed off work with a mountainous cocktail of pain killers.

    I was incredibly lucky to get the help when I did, I was very close to being on disability benefit. BUT I want to lead a normal life. Or at least as normal as it can be. I shall probably always go to bed at 9pm through exhaustion, and miss the odd day brushing my teeth, but at least I’ll have a job and maintain my independence, something which means so much to me. Just taking each day at a time.

  182. Philippa Newman says:

    It took 7 years for a proper diagnosis via a private consultation my (female) GP was dismissive. I had to have a total hysterectomy with ovaries removed at age 38 to be able to be free of the chronic pain and bleeding problems.. There is no follow up or care for early menopause, or indeed for dealing with endometrosis it is a common misconception that it is ‘painful periods’.
    I do not think that people realise how ill the condition makes you feel.

  183. Claire says:

    I have suffered from depression and ptsd for nearly 7 years now and have recently been diagnosed with borderline personality disorder but this should have been diagnosedat the start and due to this error i have not received the proper treatment. I have struggled all this time with no helpful support and have been suicidal a number of times. I hit breaking point and ended up being sectioned and stayed in a mental health hospital where the consultants appeared to have no real experience and certainly no understanding. A number of complaints were made but nothing done.
    Hospital treatments needs huge improvement as well as gps treatment of patients. I strongly believexthat all long term conditions which require medication they should be free prescriptions. I definitely thimk the biggest problem with mental health is the stigma it holds and therefore the key is awareness. The effects of of mental health on on the individual as well as relatives are beyond words and people need more support in place to know they are not alone. I hope some day that every single person who suffers from a long term condition can feel that little more alive by receiving the right care and support.

  184. Tim Leahy says:

    It has been found that people with multiple conditions respond better and quicker if their treatments are coordinated (especially mental health conditions) and yet I am treated in an health centre, three hospitals, three GP surgeries, an physiotherapist, a psychotherapy unit, a day care centre and the local mental health team, (eleven separate sites) all of which have multiple departments, none of the separate sites seem to even talk to each other and every single speciality seem to keep their own records, which means that time is wasted during every appointment updating one specialist about what another has done.
    But it is not just this waste of time, because information is not passed between the different units, conditions remain either untreated or receive the wrong treatment, just to give one of many possible examples, I have a spinal injury which is treated in one hospital, but I also have problems with my knees, so my GP sent me to an physiotherapist who found that I had one leg shorter that the other, this then resulted in a referral to a second hospital to see if this could be corrected, but without informing the specialist at the first hospital, in the end it was found that the problem with my leg being shorter was exacerbating the damage to my spine (this was only because I spoke to the specialist myself).
    While I am aware that it would not be possible for specialists on eleven different sites to get together, because of both financial and time constraints, information could be passed between them, as most of the specialists may not even be aware of the other conditions, while my GP is aware of my many different conditions, she also has the least amount of time available and may not spot the connection of one condition with another condition that a specialist would spot.
    There are times when dealing with so many different people that I have to postpone one appointment in order to have another, sometimes it is difficult for me to prioritise which specialist I should see first.
    There is also a lack of continuity in the staff within my local mental health team, in the last three years I have had 5 care co-ordinators (not including a period of approximately ten months when no one was available), my GP has been told that I had been discharged by the mental health team (I had not been discharged, but no one was assigned to me), all of which doesn’t help with long term conditions.

  185. Rachel Minto says:

    I suffer from endometriosis. Endometriosis is a very common disease affecting approximately 1 in 10 women of child-bearing age. it is a debilitating illness and comes with a variety of complications. I am disgusted at the level of care not only I but women across the board receive. It has taken me 15 years to be diagnosed. I have been summarily dismissed with a diagnosis of Irritable Bowel Syndrome on several occasions as well as receiving a plethora of other incorrect diagnoses (one GP, several years younger than me, even blustered that “there’s more than one position to have sex you know” after presenting with symptoms including dyspareunia). I was eventually diagnosed after a nurse referred me for an examination following an extremely painful routine smear test. She told me that it was not at all normal to have such pain and armed with a load of gynaecological information and told me to insist on being referred for a laparoscopy. The laparoscopy showed that I had a mass of abdominal endometriosis lesions and extensive adhesions. Nothing was done about this during my laparoscopy and had the mirena coil inserted during my operation. I was told that this was the standard treatment for endometriosis and dismissed. I have been back to my GP on several occasions since the treatment as it has not worked at all and has given me additional symptoms. One GP told me that the coil does not cause symptoms, one referred me to a colorectal surgeon and gave me a presciption for pile cream in the meantime (the colorectal surgeon told me I probably had IBS – a real kick in the teeth after being incorrectly diagnosed with that for the last 15 years!!). I was about to give up again but my partner persuaded me to keep trying and thankfully the last GP I saw has agreed to refer me back to a gynaecologist again, but has explained that it may well be that I have to live with condition.

    It seems that I may be facing another 10 years or so of pain and other problems as this condition is incurable until the menopause cures it for you. I have not once been offered any form of treatment such as pain management or couselling.

    Being a member of a support group and sharing with other sufferers, I know for a fact that my experience is by no means an isolated one.

    I think the main problem is that we simply do not have enough time to speak to the professionals. They always appear too harrassed to listen to us properly. It seems that they listen to the first 5 seconds of what we are saying about symptoms and go for the easiest diagnosis. Too many GPs are focussed on getting you out of the surgery after 5 minutes with a prescription in hand. (Do they think that pills are the only thing that will make us happy?)There is also a distinct lack of follow up. I have never been advised what to do if a GP/consultant’s treatment or advice has not worked and often feel that they think I am lying or making it up when I’ve told them it hasn’t worked.

    • M.N.Sheikh says:

      The services provided by familyGP’s and social worker are very poor.I suffer with arthritis,and I was born with it.My personal experiance with social services and my GP,is not satisfactory at all.I have no idea who if any one can bring changes to improve services.

  186. Helen Stevens says:

    I suffer with several long term conditions including migraine, and it’s as a migraine sufferer that I am commenting here. I have suffered now for 28 years, since the age of 8, and have never been offered any solutions other than drugs. Under an NHS nuerologist I was pumped full of drug after drug, some extemely strong with nasty side effects, in an attempt to prevent them. I have now transfered my care to the National Migraine Centre which is not funded by the DOH but it a charity. Under their care I have felt for the first time that my condition is being taken seriously and my feelings are being taken into consideration. Instead of seeing me briefly and handing me pills, they have spent time going through my lifestyle and medical history with me, looking at every aspect of my life to best find the causes for my migraines, and thus the best way to treat them. They look at decreasing the ammount of drugs patients have to take, in favour of finding other solutions.

    It would be great if the NHS could give more consideration to non drug therapies. I know that for some other areas they do, for instance I also suffer from endometriosis and am very happy with the non drug treatment I have received for that condition. Migraine is a serious debilitating illness, and I was very frustrated with feeling as if I was being brushed off and sent home with a packet of pills.

    Unseen illnesses can be brushed off way too easily. It took me 14 years from the onset of symptoms to be diagnosed with endometriosis. I am happy with my care since diagnosis, but remain frustrated that I was not listened to for so many years of suffering.

    Preventative care and regular testing are other things I feel strongly about. Smear tests are all very well, but once every three years isn’t nearly often enough. In the states, they are yearly. Most people will also have a yearly medical where they are tested for other conditions. I realise that preventative care is expensive – but surely it’s better than waiting until after people have developed cancer, and then trying to save their life?

  187. Sarah Smith says:

    As a sufferer of endometriosis I find it immensely frustrating that the approval of new drugs takes such a long time. I’m under the impression that a product already licensed in continental Europe has been awaiting nearly 2 years to be approved in the UK. This particular drug has the potential to save many women from pain, surgery and infertility which surely would save the NHS a lot of money in the long term?

    • Rachel says:

      This is Dienogest or Visanne (a daily pill taken orally). Its supposed to be a more effective and safer treatment for endometriosis than some of the other hormonal treatments used but its difficult to find any information about plans for its use in the UK.

      I was told that Mirena was the best and most effective treatment for endometriosis, but it hasn’t worked for me and has given me horrible side effects, so a more effective alternative to surgery would be most welcome, though we are lucky in the UK to be safeguarded by such vigourous trialling of new drugs.

  188. George Wintle says:

    The declared goals of the ‘Long Term Conditions’ initiative are excellent. The improvement in available care for RA sufferers (particularly locally) has improved tremendously in recent years.
    With all long term illness, the priority must be on early and speedy treatment to limit the extent of impact to the sufferer, the NHS, the benefits system and carers.
    As one who was faced with a wife having sudden and chronic onset of a disease the greatest problem faced was one of short-term carers so thet I could continue to work and pay tax. A dept. of NHS that could provide a trusted service at notice of a few hours would be invaluable. It would obviously need to be rationed and safeguarded by checks and balances against misuse.
    I was relatively fortunate in that family members and friends were helpful and made themselves available; I enjoyed a trusted relationship with my employer which allowed some flexibility. For many this is just not possible and hits the economy as well as the individuals.

  189. Kim Cant says:

    As a long term back pain sufferer as a last resort I tried Alexander Technique Lessons 8 years ago. Following a short number of lessons I was soon pain free and off pain killers and anti-inflamatories. I was so impressed with the Technique that I eventually went on to train to be an Alexander Technique Teacher.
    The long term benefits of the Alexander Technique on reducing chronic back pain have since been validated by a clinical trial that was published in the BMJ in 2008. For a summary on this research see http://www.stat.org.uk/pages/ateam.htm
    Since commencing teaching the Technique 18 months ago I have had a number of successes in helping sufferers of chronic back pain who are now pain free.
    The benefit of the Technique is that it is a self help method that teaches individuals to notice harmful postural habits and patterns of movement that are causing them pain. Those learning the Technique are given the tools to apply to their daily lives.
    In view of the long term benefits in treating back pain I cannot understand why the Alexander Technique is not available through referral in the NHS from GP’s and NHS funded Back Pain Clinics.
    Those who want to find out more about the Alexander Technique and its benefits should look at the Society for Teachers of the Alexander Technique website http://www.stat.org.uk

    • sunny says:

      Just great to hear that Alexander Technique helped you. It helped me with my CRPS. Check out my blog – http://crpsmobility.wordpress.com
      I really believe that it will eventually be incorporated into treatment plans. Like acupuncture, unfortunately it takes so long for these incredibly effective treatments to be accepted. Alexander technique teaches a way of life really.
      Best wishes

  190. Gill Ferdinands says:

    I am writing on behalf of Patients with Multiple Sclerosis. I would like to see that all these people have access to the Disease Modifying therapies available not only in injection form but also to the oral preparations that are now becoming available. They should also have access to other treatments to aid mobility and help to control disabling symptoms of pain, spasm and tremor. Neurophysiotherapy and Neuropsychology should be available to all people wherever they live. These measures would enhance their quality of life considerably and enable them to manage their long term condition of MS more effectively thus preventing dependence on the limited services that are available at this moment of time.

  191. Maurice Greenham says:

    Having read carefully the goals of the strategy, I find them admirable and they draw my whole-hearted support.

    As a person who has living with the long-term of HIV and AIDS, I consider it a tribute to the support of statutory and voluntary organisations, as well as my friends and family, that I have been able to survive the vicissitudes of 28 years living with the virus to become a senior citizen.

    I am happy with my current HIV treatment, which I hope will be maintained. The same applies to the excellent care I receive from my GP, dentist and optician.

    My condition and its treatment leaves me with permanent nerve damage through peripheral neuropathy in both feet, chronic insomnia, as well as the body-changing effects of lipodystrophy; in addition, I have to live with the fear of increased risks of cardio vascular diseases, most forms of cancer and the prospect of mental ill health.

    At present, with DLA and pensions, I am can not only look after myself in the independence of my own home, but can also work as a volunteer for several local and national organisations as well as studying with the Open University and writing for several publications. My Mobility vehicle gives me a reliable means of conveyance in an area of poor public transport that enables me to attend meetings and fulfil my duties as a church organist, chair of an older LGBT people’s group, secretary of a national charity and trustee of a regional HIV charity.

    My concern is that financial and other constraints like the challenge of merging health and social care provision, may override the laudable goals of the strategy with the consequence that I, and others like me, will become an expensive burden on society instead of a valuable asset.

    Maurice Greenham

  192. Penny Kirk says:

    Many thanks for the opportunity to comment on this. I’ve just looked at the summary of the design event you ran in March and notice that participants identified Dying Well as a key theme on Day One. I strongly feel that Dying Well should be included as one of your cross-cutting themes for the LTC outcomes strategy as clearly it affects all of us at some point in our lives, and there is still a lot of work to do to improve palliative and end of life care for people with LTC. Professor Mike Richards, National Clinical Director for End of Life Care said, “How we care for the dying must surely be an indicator of how we care for all our sick and vulnerable patients. Care of the dying is urgent care; with only one opportunity to get it right to create a potential lasting memory for relatives and carers.” Unfortunately we still don’t get it right for everyone and the lasting memory for relatives and carers is not always a good one. NICE have produced a quality standard for end of life care for adults so we have clear guidance on what should be provided for people who are in their last year of life and my view is that it’s really important to see this picked up and applied to people with a LTC as part of your outcomes strategy. See the website for the National End of Life Care Programme, http://www.endoflifecareforadults.nhs.uk for lots of good practice examples. As a society we’re not very comfortable talking about death and dying and as a result discussions about how someone would like to be cared for in their last months of life often occur too late and people don’t receive the care that they (and their family) would have chosen. Including Dying Well within key DH documents like this one is one way of starting people thinking about and hopefully discussing this very important aspect of care.

  193. Viv Taylor says:

    If i was given choice what illness i had to have i would have chosen something that i knew when i was going to be sore .With these now i never know when i am going to get ease. I have so much pain at times don`t know if am coming or going. Only people who have the illness know what i am talking about. My fingers get swollen up and the only ease i get is if i stick a pin in them and ease the stickey substance out i know i should not do it as could get infection in bone but i am so fed up with the pain.

    Want to visit my sister who lives 2hrs away but if i get sore i am so crankey its a waste. My sympathy to all in pain
    What else can we do but die.

  194. L Selvey, DASH Project Manager - DASH East Midlands says:

    DASH – Decent and Safe Homes – is a regional project working with local authorities across the East Midlands. We asked our local authority members to give us examples of good practice initiatives which show how local services can work together to make life better for people with long term conditions.

    In fairness, we had disappointingly few responses, but I am keen to draw to your attention the Healthy Housing Hub project that Derby City Council is piloting in partnership with Derby City PCT (Public Health), Age UK Derby & Derbyshire and others, with funding support from the East Midlands Improvement and Efficiency Partnership.

    The underlying principle of the project is that: ‘People are able to enjoy a better home environment, enhanced quality of life, improved health and general well-being when they are warm, safe and secure in their own home – and where that can be achieved, they are at significantly reduced risk of accident and housing-related poor health. Fewer accidents and better health result in significant benefits for the client, NHS, local authority and their partner agencies.’

    The initiative targets resources at ‘the vulnerable’ which, for the project’s purposes, it defines as:
    ‘The most vulnerable at-risk people, including: older people; disabled people; pre-school children; those with long term health conditions; pregnant women.’

    It aims to contribute to the ability to remain living independently at home, or to return home from hospital or residential care, by:
    - Increasing awareness and take up of health, housing, affordable warmth, benefits, Home Improvement Agency and related initiatives and services for the vulnerable;
    – Better integrating housing with health, social care and support services – putting people first;
    – A training programme, gaining added value from the large resource of staff and volunteers already working across the broad range of housing, health and social care services – particularly those carrying out home visits as part of their normal work routine.

    The service addresses in particular early intervention into and prevention of:
    – Trips, falls and other home accidents.
    – Winter illness/deaths, linking with cold, damp homes, fuel poverty & affordable warmth.
    – Category 1 health hazards within the home.

    I hope this example of good practice and partnership working in the East Midlands is of interest to you as a demonstration of how local services can work together to make life better for people with long term conditions.

    If you wish to know more about the project, please contact them direct – mark.menzies@derby.gov.uk

    Linda Selvey – DASH Project Manager.

  195. Elizabeth Saunders says:

    I live with my sister who has Endometriosis its a condition that not many people know about. This when the lining of the womb grows in other places.
    It causes serious pain and discomfort in her abdomen. Because she is young not many people believe her or listen to her. I have kinda become a helper to her as a lot of the time she can’t walk to the doctors to collect prescription and pills. The pain she suffers from can’t not have been faked or in anyway made up as there has been many time I myself have had to do everything for her and there is time when she has to take pill in order for her to keep going. The government most be able to do something about this as assessment of illnesses that you can’t see. Just cause you can not see it on the outside doesn’t mean its not happening on the inside.

    • Helen Stevens says:

      I sympathise. I have endometriosis too, and it took me 14 years to be disgnosed. GP’s can be far too quick to brush patients off or assume they are exaggerating. I felt vindicated when I was finally diagnosed – but it didn’t stop me being frustrated at all the years of pain without being taken seriously.

      • Rachel says:

        I felt the same sense of vindication you mention, Helen. After 15 years of suffering and doing my own research, I obviously knew I wasn’t making this up. Its strange to say you are happy that you have been diagnosed with an actual disease, but it’s better than years of wondering to yourself if you are going mad.

        Unfortunately my sense of relief has been short lived because the help I’ve been given to cope with this illness has been disgustingly inadequate. Once again I feel like the professional people just aren’t listening to what I’m saying and act as though they know my body better than me

      • Kaye Horsfield says:

        and discovered to have a 4cm chocolate cyst. Only options offered by NHS were pain killers or surgery if cyst grew above 5cm. I’ve controlled symptoms with homeopathy (remedy sepia for dragging sensation) and nutritional therapy (lots of brocolli, no booze, wheat, coffee, soya, or meat, more oily fish etc as recommended by Marilyn Glenville) neither of which is available on the NHS, I consider myself lucky to have been diagnosed at 46 with only a few years to get through to the menopause rather than having to face years of repeated surgery and pain like so many younger women . I shudder to think of the cost of years of suffering to individuals and the country as a whole from not offering effective treatments.

  196. Sally Hurst says:

    I have Sjogrens syndrome related to my psoriasis. I suffer from RA type arthritis and osteoarthritis and have recently been diagnosed with osteoporosis. My days are a struggle to do the things I need to do and cope with pain and extreme tiredness.
    BUT if I get anything else wrong with me my doctor always says….its to do with sjogrens. Sometimes it not!! I get other like other people do but am not taken seriously because I have sjogrens.
    Before I was diagnosed with sjogrens I suffered clinical depression since I was 10 years old. Then when I went to the doctor it was always taken lightly because I had depression and was imagining illnesses.
    Seems to me that the medical profession likes to have pegs they can hang your problems on. you have depression therefore you will suffer tiredness etc.
    Yes I know that but I can tell if its something different and needs treatment, I am not stupid, just depressed.
    Now its Sjogrens…..yes well you will feel tired. I do but I am really tired and keep falling asleep. After months of complaining……oh…you are anemic!
    I think that medical professionals need to try to become more interested in patients, not just their complaints.

    • Patricia Kerr says:

      I totally agree just because one has experienced clinical depression, you have imagined everything or that it ‘is just your age’. In fact, the way the NHS is shaping up, unless you have an acute and treatable condition, forget it. I have recently attended several CCG meetings, all mention ‘long term conditions’ but this is such an ambiguous statement s to what it is. What I’d like to know where is the money coming from to support people (in my case) with arthritis and depression. There are considerable cutbacks, no physio, no hydro, not able to get equipment that makes life easier along with a reduction in income. I can get quite worked up about this, but I try to keep calm, (bad for my heart).

  197. Vicky Saunders says:

    I am 23 years old and in October 2011 was diagnosed with Endometriosis. However, I have been in pain 24/7 since March 19 2011. The pain I experience every day is constant, its strength and type varies depending on the day. Sometimes its burning pain, sometimes stabbing pain and sometimes its like an ache. I am on the strongest Co-codamol you can get (which ive heard knocks a lot of people out) but for me it dulls the pain a little but not a great deal, without it I can barely move. I am going through various trials with things such as the pill and implant etc to help lessen my pain but so far its not working.
    I am constantly prejudged every single day by doctors, Medical assessment workers, people on the bus etc. People look at me and they see a young girl and they consider me ‘lazy’ because I need to sit down on the bus when its busy. They dont see somebody in pain needing to sit because standing is so much more painful.
    I am on ESA at the moment and i’m currently awaiting tribunal because unsurprisingly I walked into the medical assessment got looked up and down and prejudged. The Medical Assessment is rubbish. How can somebody physically see how capable or incapable you are of working if all they do is sit and ask you a few questions. While a physical assessment would have been painful at least i would know they were basing their decision on what they had actually bothered to test… but no apparently not.
    I can not go shopping because within 10 mins I need to sit down. Certain chairs I find incredibly uncomfortable and aggravating to the pain I already have to endure. The government try to tell me that I’m suitable for work and basically make out that a condition that varies so much between each personal experience is irrelevant.
    I HATE that I have to sit in agony day to day after graduating university nearly 2 years ago unable to apply to jobs I want to do and work to help properly pay for the bills in the house rather than relying on benefit and what my sister can earn. If i could cut out the problem myself I would, so someone pass me a knife and some disinfectant..?

    • Vicky Saunders says:

      forgot to say… more should be done to educate those with the condition. I try to stay positive but its hard when faced with such little understanding

      • Rachel says:

        Not only educate people with the condition – clinicians need to be educated too, it seems. Too many of us are suffering for years without diagnosis. Many women today will be suffering needlessly without a clinician even considering the possibility of endometriosis. Endometriosis causes SEVERE DISABILITY in many sufferers and is extremely common, so why is it so difficult to get diagnosed? Another question to be addressed is the poor quality of care once diagnosis is finally achieved – why are we still left to suffer and not taken seriously?

  198. Kelsey Wood says:

    I am just 17 years old and have only recently been diagnosed with psoriatal arthritis which then lead to the developement on fibromyalgia and other conditions which are ruling my life. I dont know how to cope with any of this. Everyday is a struggle, it takes so much effort just to get up everyday and i know there are obviously people out there who are much worse off in their life than me but I feel let down by the system completly. Im totally alone and feel ive been fed tablets and medication that doesnt really do anything except make me worse; its like theyve pushed me away and tried to pawn me off with tablets. I really wish i had a carer or someone to look after me. People assume that because im young there isnt anything wrong with me and because they cant see that i have problems, they often forget they are there. Im struggling to keep my job, my employer doesnt realise how unwell i feel on a regular basis and how physically demanding i find my long hours on my feet everyday but i have to work to earn a living and keep a roof over my head. It is all those people who cheat the benefits system that ruin it for us people who need a little help through no fault of our own. I dont know if it will ever go away for me, i wish it would, i pray that one day the pain will just go away and i can have my normal teenage life back.

    I feel I’m crying out for help 24/7 and noone is there, noone is there to help me and noone understands how i feel, physically and mentally drained. In pain every waking minute and being unable to sleep through it all. I wish the next time i fall asleep id just never wake up again, it would be much better. The government should support those with actual problems more instead of concentrating on drug abusers and rehab centres. We’ve done nothing wrong and we deserve help.

  199. Alison Pegrum says:

    I have had Parkinson’s for over 13 years being diagnosed when I was 44. It has been an eye-opening journey. I had decided when I first started getting symptoms that there was no point in going to a GP as I reckoned the NHS didn’t do chronic symptoms very well!! I think I may well still think the same although I have also discovered there is more going on than i thought! Without a doubt i am thankful for experienced and well-trained medical staff – consultants, GPs, specialist nurses, physiotherapists etc. – and am grateful to researchers for furthering understanding conditions and developing new drugs and physical or surgical interventions. But it is never a case of stimulus-response. The absolute centrality of people with all their individuality is in the end what it is all about: how an LTC impacts on a particular person living their own individual life, and how any person supporting them – in the family, friends, medical staff, social care etc etc – interacts with them and vice-versa. People are not ill or disabled in a vacuum – which is why it is so important to treat problems holistically. I am pleased to see that the new strategy is an attempt to go across many departments: I have never understood how the DoH could be focusing on the centrality of the patient engaged in decision-making while the DWP makes a point with the ESA that decisions are somehow objective and entirely out of the patient’s orbit! Until illogicalities like this are sorted out there will be no progress. I am going to run out of space – i’ll probably have to send in the rest. But my dream is of drop-in centres for LTCs – open at all hours, combining medical, social, psychological, complementary and third sector help, where there is information, care, support, cups of tea, advice on diet, housing work etc,; where benefits are applied for, therapies undertaken, creativity encouraged; where Expert Patient courses take place – where in fact services revolve around people with LTCs who are thereby empowered. People with LTCs are first and foremost people, people on a journey into understanding themselves: they need support but support based on that premise from those who respect the process.

  200. Wendy Edge says:

    As someone who has worked with people with acquired brain injury for the past 18 years I would like to make a number of comments. I work with 16 other dedicated people filling in gaps for peole who need a great deal of long term support once they leave hospital. Families and carers also need education, information, support and help with their loved ones at home. It affects the whole family. We are a registered charity whose work is three quarters subsidised by charitable donations. In the current economic climate of cuts to the voluntary sector I would like to see funding prioritised for these kinds of crucial services, which help people rebuild their lives. These skills and experience are rare enough and should not in my opinion be affected by government cuts. Maybe this is naive but a cost benefit anslysis will show how a relatively small amount of investment can save thousands in benefit payments. We helped 49 percent of our clients from greater Manchester back into work. Salford city council and Salford PCT have been fantastic partners in supporting our work unfortunately we have not had any funding from other councils in Gtr Manchester. Like many charities we have seen a drop in income and an increased demand for services. We are seeing more and more of our clients losing benefits which is hampering recovery and causing additonal hardship. We have yet to receive any referrals or income through the Work Programme (we are a specialist tier 3 provider) or job centre plus which would enable us to be even more effective with our vocational rehabilitation service. We are able to provide unique services to over 600 people with acquired brain injury a year and thanks to the generosity of many individuals who run, cycle, organise events etc are able to keep going. We bring in earned income too basically no stone is unturned where income is concerned. Our model of service is very effective because we have developed all our services from a grass roots level ie what people have told us they need on return from hospitsl. We represent excellent value for money and are happy to share our model of operations with anyone interested. For more information please see http://www.basiccharity.org.uk.

    • Gavin Smith says:

      As someone that has survived a severe traumatic brain injury I have seen up close the way the system tries to deal with people like me and there are lots of us. On the whole I have nothing but respect for anyone that tries to make a difference I am lucky enough to be involved with rehabilitation research and I can see how the PHB’s could be a very good idea but I can also see how the system could easily be abused and there has to be a careful safety net for people not capable of managing their own health. thanks for trying to save the NHS

  201. gary fraser says:

    the gum clinics obviously need more help, i tried phoning them on monday afternoon as they are open late on mon and thurs as my health has gone down and i need to be checked out and my next appointment is on 1 august 2012, but i think i need to see them sooner as my health is not good anymore, i was number 1 in the que for 25 minutes and i had to hang up as i was running out of credit on my phone this was for the gum clinic in liverpool “the royal”. so i am praying my health does not get any worse in the mean time

  202. Sandra says:

    I have osteaorthritis in both knees and one hip. I have had 3 arthroscopies on one knee during a 10 year period. During the last one I had a lump removed from behind my kneecap. Before the op the physio told me that I was imagining the pain. Following surgery, which left my bones rubbing together, my other leg became so painful that I couldn’t walk. I lost my job. The doctors put the pain down to my newly diagnosed arthritis in the hip which they also told me shouldn’t hurt so much. For the following 18 months I was in chronic pain and given amitriptalyn and co-codamol to control it. I had knee replacement surgery last August hoping that this would at least cure one pain. I had severe bruising afterwards and then went into atr. phib. during which the hospital gave me a drug through the canular in my hand which gave me an infection. I was in hospital 16 days instead of 4, had to have IV antibiotics and numerous tests on my heart. I’m now awaiting further tests for angina (apts are after an11 week wait after referral). I am still in chronic pain. The knee replacement gave me pain beyond which I could endure and trauma that has taken months to overcome. I still have a swollen knee and now my ankle and foot swell. They haven’t started to sort out the other leg yet. My biggest problem is getting some one to take responsibility for pain management. To understand the amount of pain I’m in and how it’s affected my life. The DWP stopped my higher rate ESA claim saying that I could walk 200 yards when I could hardly get out of a chair. I went to appeal and lost it because the judge decided I could have walked with crutches. My mortgage company tried to repossess my home because of arrears acrued while I was waiting for the appeal. I would like someone who knows what they are doing to look after my care and sort out my pain. I have no confidence in either the hospital or my GP after what has happened. I was told I was too young for replacement surgery (55) until I mentioned at the hospital that my Mother had had osteoarthritis in both hips and knees and couldn’t walk at the end of her life, she was in a wheelchair. She died at 69 years of age after a massive heart attack. I’m frightened I’m going the same way through lack of care.

  203. Anisa says:

    Staff in the NHS should be more welcoming and kinder towards student nurses. They should be taught more and supervised at all times by their mentors. They are there to learn therefore should be taught properly.

  204. Danny West says:

    I am living long term with HIV. HIV is a chronic and complex health condition that effects my everyday life and my ability to work, my health condition is debilitating and is highly stigmatised . I am 51 years of age and I am extremely concerned about how I am going to cope with my health and well being into the future. I am currently unwell and unable to work; due to a small pension I do not qualify for benefits and am now living on the poverty line, there are times when I live in chronic isolation. My GP surgery only has a basic understanding of the needs of people living with HIV and I recently changed my HIV treatment centre as I was very dissatisfied with the service that I received at Lewisham Hospital.

  205. Mary says:

    I have a few long term conditions ( Osteoathritis; Fibromyalgia; Chronic Asthma and C.O.P.D). I find day to day living very difficult, but I have various aids to help me. However I try to keep a good frame of mind and not let the conditions rule my life. It can be difficult and yes there are many days when I struggle but I keep going. I have a great husband and family who put up with me and a good care team who help me cope with everything. I am unable to work and find getting the benefits I am due is a hard slog, because of people cheating the system they have made it near impossible to get the mobility side of the Disability Living Allowance.

  206. Helen Lee says:

    My mother and mother in law have 2 different stories. My mum had RA from age 35 and was diagnosed in 1969; she had to keep active due to having 3 young daughters and being newly widowed. However later in her disease she had to suffer the trauma as it was to her of going into a nursing home as we were all young and working away from she lived and there was no longer sufficient support for her at home. It was a dreadful experience where the Drs would not talk to us, and she was placed in an OAP home at age 65. Traumatic for her and us. We also were forced to go through all the issues of selling her house etc. due to funding issues. No one talked to us about her longer term prognosis which turned out to be very poor, and we were left feeling guilty about her sudden death at the end with no support from health professionals. I was out of the health profession at that time and have since returned and would suggest that the support and advice we received at that time was dreadful… this has to change for families with patients with long term chronic conditions. We suffered this disease with our mum when we were children and got not external/formal support. Now my mum in law is going through the same disease but at a later stage in her life. However she has acute RA and suffers pain and tiredness. She has been given newer medications and her management has been more proactive from a medical perspective and she has valued greatly support she got for changes in the house to support her independant living. However she gets no physio, no encourangement or groups to support activities that would actually help her RA and the reduce the longer term risks of her disease, i.e. swimming, Tai Chi, which are proven to reduce effects. This has to change to support people with these type of conditions.

  207. RAY says:

    Were all going to die some day; and most of us will experience some kind of acute pain and or discomfort before it happens. So surely the most important thing in whatever life we have is to make the most of it, regardless of our situation, and this is up to a healthy mental attitude to whatever comes our way.

    We should be concentrating on what can be done to cheer us up; create as close to normality and try to laugh at something. The way life pans out; that lucky person helping you to get about could be in a worse situation than you next week!

  208. Irene Fishwick says:

    GP’s need to listen to patients and respect their views. Initially I was told to go away and get fit. At the time I was hiking every weekend and using the gym on a weekly basis but struggling with pain in my hips. Because of my mother who had also had osteoarthritis in multiple joints I knew what I was talking about. 3 months later I saw another GP and insisted on referral to a consultant. She clearly thought this was a waste of time as she said I was too young at 56. By then my hip was partially dislocating several times a day and was excruciating; making teaching in a Primary school impossible. 3months after that I was offered 2 hip operations and which one did I want doing first! I returned to teaching between hips but then my hands started to give me a lot of pain. Two trapezoid operations and a finger fusion later, plus the second hip operation and suddenly other joints causing problems I finally faced up to the fact that I could no longer work. I retired two years early from my job as a Deputy Head and in retrospect I should have gone two years before that. Now the family joke is that my right shoulder is fine! My current GP is brilliant he does listen and he explains things clearly. I am now on medication which does deal with the worst of the pain and life is easier. However I have had to make many adjustments in “how” I do things. I still walk but only about half a mile on a good day and I use two sticks. I do aqua-fit and swim regularly in order to stay mobile and as fit as possible. I do my own garden with the help of my husband and some raised beds. I have taken up photography and make my own greetings cards using them. I manage to play with my grandson but need two days to recover afterwards, but I do it and enjoy it. I have to use a knife and fork differently and carefully consider what I order from the menu if we go out for a meal. However it beats my husband cutting up my food! In my kitchen I have lots of drawers or baskets which pull out making things accessible and of course various gadgets. My disabled parking pass is a godsend but it wasn’t easy to get. I find that it’s a state of mind, if I want to do something I find a way to do it, but differently. We are not disabled we are enabled to do things differently! When I retired I had to find a way of still contributing something for my own sake and started to volunteer with Arthritis Care. They sent me to Expert Patient training and now I can deliver their courses on Challenging Pain and Challenging Arthritis. Helping others cope has helped me to cope and stay positive. The biggest lesson of all has been pacing myself and listening to my body when it needs to rest. The future worries me. I want to stay in my own home but will probably need help to do so in the future. I would like to think that this will be possible but with the current situation in elderly care it does concern me. The charities which work with people who are living with long-term conditions should be consulted as well as groups of people and individuals.

    • Rachel says:

      This “GP Lottery” is where it all needs to begin in my opinion. I was once prescribed Zumba or a dog by one GP, citing exercise and a positive attitude was all that most illnesses required! Some GPs seem as if they are charged with actively keeping us out of the hopitals and consultant’s rooms. I know several people who have had completely different outcomes from the same symptoms just by seeing different GPs. My father is a perfect example of this. He spent months of trying to find out what was wrong (being the owner of his own body, he knew something was up) and months of being told that his problem was nothing more than growing old and want of a slightly healthier diet. Eventually he waited until he could get an appointment with the most popular doctor in the surgery – he was promptly referred for expert opinion and quickly diagnosed with prostate cancer!

    • Rachel says:

      PS I think it is brilliant, Irene, how you are now managing your life and are maintaining such a positive attitude. I think this clearly demonstrates how enormously it helps when professionals listen and provide the right level of care. Most of us want to manage and help ourselves – getting the tools and support necessary to acheive this seems to be the difficult part

  209. Dr RS says:

    People who have chronic diseases may suffer complications that shorten their lives. And if they are dying from other illnesses, their chronic conditions still need managing when they enter the palliative phase of an illness. My experience is that there is not enough chronic pain anaesthetic time commissioned to provide adequate support for many people in this group, for whom a chronic pain management approach may still be helpful even when time is short.
    Specialist palliative care is increasingly caring for people dying from conditions other than cancer, and joint working with specialist nurses is key – they support specialist palliative care with their disease specific knowledge. While this way of practising is already well established for CNSs in heart failure, copd and some neurological conditions, it is an approach that could benefit people who have other long term conditions as they approach the end of life.

  210. Sheree Heptinstall says:

    Working as a carer and within a charity, we find many of the problems that face people living with a long term condition is the lack of availability for local services – our local MS Nurse works hard to let people with the condition aware of what help is available locally, what groups are available for support, but also lends an ear to listen and a shoulder to cry if anything is getting too much – she’s more of a friend than a nurse to our members.

    it is important that local care packages are tailored to each individuals’ needs as it is vital to get these care packages right for the improvement and the benefit of the individual at the heart of it all.

    It is also vital that the healthcare services are aware of the need for these vital staff and services to people living with a long term condition and that the support is there for each individual who currently uses, or may need to use the services in the future.

  211. neil says:

    I have very bad mental depression

    Since my dad passed away 2 years ago i just cant help blaming myself because he was so worried about me getting sorted out in life

    I have so many dreams of him and family in the old house etc and i awake and no one there when i do awake ,,

    I had to talk to him before he passed away and this ripped me up inside so bad….i have had suicidal thoughts but not done nothing as i have so much dreams to peruse, i force myself not to cry

    Still awaiting bereament council ling …I just don’t want to do nothing at all and i find it very difficult to be around people and society ,in the past years all i have done is go to college to study..and do.driving lessons and see my mother and this is all i do

    I just cant believe my dad is no longer here,oh my gosh…wont smile /laugh..

    I think you get my meaning ..i could spend all night talking about this you see but i think you understand me

  212. Bev says:

    I have been on steroids for over 40yrs, My hospital consultant was happy for me to have 4 – 6months supply as I am stable and know my condition inside out. My GP was never interested, and believed driving 8miles to the pharmacy each 28 days should not be a problem as I live in a rural setting. I know nothing else that takes such a control on my life. Without the steriods I would die. Running a family and constantly having to think of the 28 day deadline is not fun. My GP doesn’t understand my condition as I have had a couple of adrenal crisis due to the lack of knowledge. If my consultant is happy to move me onto a list confirming that I am not likely to abuse this system then for myself I can only see it as a positive move at long last. I also fall within the do not pay catagory so payment is not an issue. I also work in a pharmacy part time, and do see people mismanage their prescriptions and duplicates arriving for dispensing or people not understanding their medicines, so I personally feel this is not suitable for everyone on long term conditons and should be on an individual being vetted either via a consultant and be stable otherwise there will be a wastage with people returning medicines as they have had doses/strength of drugs changed

  213. Rachel Joyce says:

    I was diagnosed with rheumatoid arthritis 2 years ago at the age of 38. I take three powerful drugs including one which is a low dose of chemo. Up until now I have worked full time. My RA is affecting multiple joints, I never sleep through the night, have pain every day, I wake up with pain every day, most days I take strong painkillers. But, I don’t look sick. Normal every day tasks can be exhausting, plus dealing with the side effects of the meds and the painkillers. I have just sold my car so that I can afford to drop just 1 day per week to try and make things more bearable. I feel that all my energy goes into keeping myself in employment, I rarely see my friends/have a social life (because after working all week I’m just too tired). I worry about what will happen when I’m not able to work and how I will manage financially.

    I have recently had appointments with the occupational therapist (NHS). These have been very helpful in showing what I can do to help myself and try and prevent joint destruction but its nearly 2 years since I was diagnosed. It would be useful if hospitals could set up some sort of information classes for those that are newly diagnosed to gain more information from the beginning. My rheumatology department is swamped and I last saw my consultant in December. My next appointment is September. (it should be 12 weekly). I’m grateful for our NHS but I live with this disease every day and it is not under control and waiting months for appointments is not great. I also have to chase up appointments and check on blood results myself which is not acceptable.

  214. Charlotte says:

    I have RA which was diagnosed at a young age. Since having this condition I have begun to understand the phrase ‘postcode lottery’ for standard of care in the NHS. Thankfully, I live in an city area where RA is adequately funded and understood but have met people along my journey that are not so fortunate. Having said that, I still have had to ask questions, chase and on occasion be quite forceful. I have even had situations where the advice given to me would have been harmful if I had accepted it on face value. Now I am lucky enough to be young and highly educated and I often wonder how I would fare in the system if this was not the case? Patient education is of course vital, but at the end of the day my education is in the social sciences and not medicine. We still need the experts and can’t organise all our medical care ourselves!

  215. Miki Byrne says:

    Many problems faced by long term sufferers are financial. We have to stay warm and we have to eat well. We need to exercise yet all these things cost money. Swimming costs me £9.00 per week without travelling costs. Without swimming I would be far less mobile. It’s the only exercise I can do as all my joints are affected by RA and OA so any impact sport is out of the question. We are told to lose weight, exercise etc. Yet we have to be totally self motivated and self funded to do this.

    Local services could be improved by providing more cheap community transport for the long term sufferer, running exercise programs that are accessible and affordable and by having specialist nurses in hospitals to deal with a patients long term condition when they are in hospital for other treatments. I was recently in hospital for more surgery. I knew that my RA would flare up badly and it did. I received treatment only for post-operative pain and my other symptoms were ignored. Na Dr. even said, ‘oh, it’s just your usual’. My Rheumatologist did not even know that I was having a flare up which definitely made recovery longer and more difficult.

    People who have an illness for many years do know a lot about their own bodies and many know a great deal about their own condition. I have had RA for 45 years,yet I am still sometimes treated as a ‘first time’ patient and my objections to certain treatments that have proven to be detrimental to me are ignored. Dr’s should treat us with respect and acknowledge that we often look into our own problems and try hard to find out how best to deal with them.

    I cannot comment about working. I have been retired (early due to ill-health) for over 20 years.

    Common goals that the Government should be signing up to are: Acknowledging that long term sufferers are genuine and basing all assessments, financial and health, upon clinical records only. Being assessed by an unqualified person is both ignorant and insulting.
    A long term sufferers social work system should be put in place so that people have someone to turn to when Government agencies let them down i.e. when a carer doesn’t show up, when benefit is late, when the person suffers a bereavement and can’t cope and so on. Many long term disabled are alone and scared, desperately in need of a friendly face.

    Waiting time should be tightened up for the long term sufferer. This applies to hospital waiting lists, getting Drs. appointments, waiting for prescriptions to be dispensed. Those on long term medication have to work up to 10 days in advance when accessing a prescription. I recently waited 8 days for a phone call from my GP. It is usual to wait over a week for an appointment and for days for the chemist to dispense a prescription. All this waiting means extra stress and a worsening of symptoms. If we then facto in a public holiday then this waiting time may be more extreme.

  216. Yvonne Bland says:

    Many of your correspondents are particularly very ill. I am not. I am almost 75 and have Chronic Obstructive Pulmonary Disease for which I take daily medication some of it steroid based. I feel fine unless I forget (I don;t). I am worse in winter, and cannot get up the steep hills where I live easily. I still ride my bike however, have a slow thyroid and a new right hip. I do various community activities including church, and have lots of friends. I am planning to do some long distance cycling this year, and to cycle round London for a week. I love life, and have fun. I don’t let COPD get me down. If I have a cold and usually a flair up I visit my doctor. I can’t praise our local health services enough. I have only been hospitalised with COPD once. I was in for three days only. You have to keep trying and look after yourself with a good diet and plenty of exercise.

  217. Pauline Hamilton says:

    There needs to be much more co-operation between the various health care professionals involved in the care of an individual patient – too often the patient is caught in the middle. Real ‘patient centred care’ should mean that the health care and social services professionals work together to achieve the best possible outcome, always all listening to what it is the patient wants. In my experience it is still the case that podiatrists, orthotists, physiotherapists and rheumatologists communicate with gp’s but not with each other.
    Current entitlement to free prescriptions is illogical and needs reviewing.

    • C Gage says:

      Thank you fo that Pauline. Without free prescriptions I wouldnt be able to afford my epilepsy medication and given that the medication lowers my white blood cell count making me susseptible to other infections I would also be paying fo the numerous other presciptions that I have to get fo niggly infections. I am greateful for the ‘illogical’ free pescriptions. I just wish that people in my position were also considered for the flu jab automatically; the criteria does after all say if your immune system is lowered by medication.
      I was bron with epilepsy and am well controlled but I wish there was more understanding regards the side effects of the drugs. The trade offs for better seizure contol seem to be monumental and the reaction among most doctors and neurologists is ‘ ah well thats the price you pay’. From weight gain, fatigue, headaches, concentration problems, weight loss, loss of sensory perception the list goes on. I recently saw my neurologist, the poor woman is working on a backlog from August 2011. The drug incease I was given left me with a blinding headache that I couldnt shake. I make no apologies for going back to my old regime. When will I see her again? Well my last appointment was July 2011. I’m just glad I have pretty good control and I get warnings. I find that I sometimes cannot work not because of seizure contol but because of the headaches I get from the keppra, however at least Im not falling into bed at the end of a days wok and sleeping for hours and always dieting as was life on Epilim. Still, ‘lets try another drug!’ does seem to be a popular option not fully appretiating the impact on your life if the change fails – walking about like a drunken zombie when switched to lamotragine case in point! I sometimes think my cats and dog gets more sympathetic treatment ftom the vet and am tempted to ask if I can hop up on the table. Many people at the Epilepsy forums find their doctors and neurologists unappoachable. I at least have a sympathetic Doctor, pity she is on maternity leave, another good one who is so good It is a month before I can get an appointment and an overworked neuro. My husband said the most startling thing he has learned fom being married to me is all the OTHER things drugs do as opposed to what they ae meant to. As my doctor says if we all ead ALL the side effects of paracetamol no one would take it.

  218. Carol Appleyard says:

    i have a fairly recent diagnosis, I have had RA for about 3 years since symptoms have started. In that short time I have been tried on a few different meds and have had to have time off work because of the horrendous side effects, every day I get up onto feet that are stiff and so painful I have to stand onto my heels and hold the wall to keep my balance until I can ease onto my feet. My thumbs swell up and make it difficult to grip and do fine things like unscrewing bottle tops, using tweezers and even write properly. I am a nurse, while my symptoms are pretty well controlled I can see me having to stop nursing in the not too far off future as the length of time on my feet and the fatigue that come as part and parcel of the condition make it very difficult, at times, to cope with the demands and stresses of the job. My husband has a disability and I have teenagers and I often wonder how long it will be before I am unable to do my job and what I can do instead to bring in the funds to keep my family. I have witnessed how the government treats people with disability first hand with my husband, his so called “medical” was a joke, I was with him and what happened and what was put into the report , which has left him appealing and under an horrendous amount of stress, are 2 completely different things!! Is this going to happen to me in the future?? Also I have a friend that has been stopped a drug which works for her and put on a cheaper alternative which doesn’t give her any benefit whatsoever, she could get a private prescription but it is £60 per month, she can’t work because of her condition, most of her money has stopped pending appeal, her family, who are not well off are helping to support her as the little she is left with barely pays her basic needs so how is she going to pay for a private prescription! again will this happen to me? will my meds be affected by cost cutting? will I have to do with 2nd best? This is a fear for most people i have spoken to and as far as I can see and have witnessed it is a very real fear-do people coping with long term conditions also have to live in fear of all this?

  219. JustDavid says:

    I have type 2 Diabetes, Prostate problems, Arthritis in my knees hips hands, tennis elbow, Frozen shoulder, Sleep Apnea, and Depression, Dyslexia, Tell me this what hope is there of having a life and job at 58years old with all this, I was a Labourer all my life and a hard worker. Even this as been done for me as I am no good with a PC, we all have different things that we have to live with, the list of things I have is long, and my life is hard to live with after being so active all my life, Doctors and the DWP, have no idea how I feel from day to day, and yes I do think of taking my life and ending it all, I do wish that MP’s and Doctors could have all my Problems and know what it is like to live with.

  220. Alan Bennett says:

    I’m not going to complain about suffering from rheumatoid arthritis, I’ve had this since 1983 and have learned to accept it.

    What I am going to complain about is the fact that Iain Duncan Smith said last week that the number of people on disablemnt and sickness benefit was a joke, and manyu thousands were getting invalidity benefit and DLA but have never had a medical, and that should never have been allowed to happen.

    What he seems to have conveniently forgotten is that prior to 1991, anyone who was on sickness benefits for more than 28 weeks were compelled to have a medical to determine whether they should be told to go back to work, or be put on what was then called invalidity benefit (now called incapacity benefit), and also, attendance allowance and mobility allowance (now called DLA for care and mobility) was never granted until they were given a thorough medical to see if they were entitled to these benefits.

    That all changed in 1991 when the TORY government announced that medicals were no longer required to receive these benefits. The result was that thousands upon thousands of people jumped on the bandwagon. So, it was the Tories who caused the problem, but rather than simply admit it, they blame the Labour party.

    Of course, what the Tories are doing now is penalising thousands of genuinely disabled in an attempt to undo the mess the Tories caused in 1991. If you can nod your head, or hold a pen, you are likely to be classed as fit for work. There are no half measures, no account is taken of how your medical condition affects you from day to day, simply how you are on the day of your ATOS appointment. Yesterday, I was only in a little pain, and I could get downstairs, eat my breakfast, drink my coffee without help, but today, I’m in a hell of a lot of pain, my wife had to bring my breakfast in bed and help me get the food to my mouth, and had to hold my cup while I drank my coffee.

    I feel sorry for the genuinely sick and disabled who are of working age, because most of them will lose their benefits and be told to go out and work, even though they may not be fit enough to do so.

    Personally, I will avoid this crap at least for a while, because I will be 65 in a few weeks time, so I will be keeping my DLA, but how long for is anyones guess. I will be a few quid a week worse off though, as my incapacity benefit will be replaced by old age pension.

    However, it has already been hinted that pensioners on DLA may be examined sometime in the future to decide if they can keep their DLA or not.

    Come on, you Tories, why punish so many people because of a cockup you made?

  221. natalie emery says:

    Hi i have Rhumatoid i am 35 years of age now just been on the assessment to say i am fit for work and that able to do everything in that appointment there was lies at my worst is the morning before i take medication then have to wait for this to kick in then the feeling tired what company will take me on falling asleep then not in have the week due to appointments and also pain i do understand that there is people on the benifit that are not needed but the assesments need to be done fair by the correct doctors

  222. Clair Bottomley says:

    After being diagnosed with a long term condition I was shocked to find out how little is being done for sufferers with the disease Endometriosis. I have suffered since I was in my early teens, heavy bleeding, terrible pain, bowel problems and several operations, including two medically induced menopauses before the age of 29.

    This condition needs to be highlighted and people informed of what a debilitating disease this is. There is no cure for it, we live in pain or are forced to exist drugged up daily being unable to concentrate, many women being unable to work. A recent survey of 147 women stated that only 30% of these women could work full time due to their condition. I try to work full time, however my health has been so poor in the past year I have been unable to work many full weeks and have had a significant amount of sickness. Think of how much money this is costing employers? We as sufferers are well aware of it, however the money going into research and trying to find some relief from this life sentence is minimal.

    Did you know that as many women have endometriosis as those with diabetes? It is that common. However only about 30% of the population have even heard of Endometriosis. I think that it is about time that this condition was pushed up the agenda, it is a life long condition which is incurable. Sufferers can have an extremely poor quality of life, living with pain, isolation and unable to carry out daily activities, and sometimes leading to infertility. It can be classed as a disability, however the lack of awareness and understanding is a big hurdle that we are trying to overcome.

  223. Debbie says:

    I worked seven days a week for many years doing care in the community..then I changed to being a senior night care assistant. I was in the process of doing my Level 4 NVQ in care and hoping to go on to train as an RMN.

    In 2002 I felt so ill I visited my gp..who did a few tests and sent me to see a rhemutologist.
    Then I was diagnosed with fibromyalgia…the rhemutologist said I had the worst case he had ever seen. It hurt everywhere over my body and I could not stand anyone to touch me because of the pain. My GP then over the next few years ..every time I went to see them said ” Its the fibromyalgia causing everything” and dosed me with different drugs. I had so much pain..I couldnt stand for long due to back pain and the pain in my legs meant I finally had to admit defeat and use a wheelchair.
    Disheartened with my GP, I changed to a different GP and they have been marvellous. I was sent back to see a rhemutologist and have now been diagnosed with osteoarthritis as well as fibromyalgia . I need a both knees and hips replaced for which my area will not do as I am “too young”. Im 45..I can have them replaced after Im 50..My hands are now so painful my mother is typing this while i dictate.
    The rhemutologist asked what I would like most and I answered with no more pain and be able to go back to my old life. He said you will be unable to go back as the osteoarthritis is going to worsen.
    The amount of medication I take should have me comatosed but it still doesn’t help the pain. This auses hardship because o0f the cost of each prescription.

    I am called all sorts of names by my neighbours who think I am lying…they watch me everytime I leave my home. This has also caused me severe depression that I am now on a waiting list for a psychologist. I may not look disabled but if people could experience the pain and frustration that not being able to do the simplist of tasks causes.
    I had been receiving Incapacity benefit but had the forms through for the new ESA….the results came back and caused me great distress..apparently I am fit to work! If I could do a job I would be at work in a shot. My husband works 45 hours a week and brings home just over £900. We have not had a holiday in over 13 years and basically live hand to mouth. Our children have not had all the things friends have…if it wasnt for my children I dont think I would be here today as they would probably be better off without me.
    This government needs to help the disabled of its country….Enoch Powell was right ….Britain is no longer for the British and we are the ones being penalised.

  224. Anne Ashby says:

    The LTCs eligible for free prescriptions should be reviewed. I had Ulcerative Colitis for years and had to pay. This is a life threatening condition as it can lead to cancer of the bowel. Fortunately I could afford the prescriptions but many people struggle as there are other hidden costs of this (hidden) illness, like personal travel – using public transport is often not an option when the illness is in excacerbation – no loos on buses! I now have a stoma and my prescriptions are free.

    All people with an LTC should have a named specialist health professional who co-ordinates their care and advice. Mine were and are brilliant but their funding is not always secure and there aren’t enough of them. They are often seen as optional extras by commissioners! Indeed prevention services are given a low priority for funding when, not only do they improve quality of life and dignity, they prevent hosptal admissions which are more costly.

    For people with major support needs and at the end of life there needs to be a dedicated helpline 24/7 locally which can respond quickly to people in distress – and I don’t mean NHS Direct! In other words a community urgent response service. Many people end up at A&E and are admitted to hospital unnecessarily as this is their only option, eg a blocked catheter in the middle of the night or at weekends.

    Equipment services for disabled people are inequitable across the country. My city social services department has decreed that all individual items of equipment costing less than £50 must be paid for, yet a neighbouring county council provides them free. Also buying such equipment privately can cost twice as much as local authorities as they are able to purchase them in bulk. As many people will be using state benefits to buy such items this is not cost effective. Much of this equipment can prevent falls in the home and charging for it means that many people will not purchase it.

    Wheelchair services should be merged with joint equipment services so people aren’t having to deal with several agencies. Also wheelchair services can take ages to assess people and provide the wheelchairs – many months in some cases. Some people don’t have months, eg people with MND and growing children.

  225. Julia Metcalfe says:

    I am a 53 year old lady who has has suffered from several long term conditions for a long period of time. When I was 13 I was diagnosed initially with Ulcerative Colitis which was extremely bad for 5 years and then settled to an ongoing pain and need to have instant access to a loo until I was about 35. I then had a period of around 5 years where it genuinely went into remission and I could forget about suffering from the condition. After that it returned with odd relapses but an ongoing worry of complete incontinence. As I had gone into remission my consultant assumed I was now ok despite constantly insisting that I lived with potential bowel incontinence.
    I managed to return to work after raising my family and obtained a degree and a teaching qualification. However, this led to high blood pressure, atrial fibrillation, bipolar disorder and severe ongoing back pain. I am now on 15 different types of medication and spend all days and nights in pain on a scale of 1-10 at about 7 unless I take codeine tablets when the pain reduces to about 4. I have chronic stiffness and experience difficulty dressing myself, bathing is pretty much impossible so I have to work with strip washes. I cannot do the washing as I cannot get the washing out of the tumble drier, I cannot do housework like changing the sheets on the bed or hoovering or washing up for long periods of time so have to do so many dishes at a time.
    Despite that I went onto ESA in February 2010 when I suffered a really bad period of Bipolar Depressive episode. This I feel was brought on by the pressure of trying to cope when I am clearly not able to work.
    I stayed on ESA in the Work support group until May 2011 when I decided to try going self employed. My GP suggested i only do part time work but I couldn’t see how I could afford to do just that so tried to do full time but working mainly from home. I found that it was easier but trying to get work that could be done at home proved nearly impossible. I have been basically living off Working tax credit this last year in my attempt to get work. I have received odd small amounts but it is not really viable. I recently returned to have a second MRI scan for my back and the osteoarthritis of the spine is now creeping up the spine and now includes 4 discs. I am now at the point where I really feel I cannot work any longer but can’t imagine trying to live off £95 a week now that everything is so expensive.
    As I have been on Working Tax Credit I have been fortunate enough to receive free prescriptions which is a good job as I could never receive the drugs I require otherwise. Even the prepayment certificate is too much for me to afford at the moment. I am left with about 50p each week after I have paid all my bills and I still have a student loan outstanding of over £8000 which I will never be able to afford to pay off.
    My illness has put me into lots of debt and in 2007 I had to go bankrupt because of my inability to pay my debts back. This was partly through my bipolar but also divorce.
    Life is very hard if you have long term conditions in this country and it would be so nice if the Government could give us a bit of a break.
    I appreciate that there really are a lot of scroungers out there but having lived on the breadline for several years now (when working full time as a teacher I was capable of bringing in over £40k so I am not a scrounger) it must be recognised that if the Government wanted to win any Brownie points they would at least look into this issue sympathetically.

  226. M J Brade says:

    Invest in preventative services for general health and wellbeing from all sectors.
    Promote positive (rather than fear creating) health messages.

    • ann says:

      I completly agree. Self management is the key. I have had RA for over 40 years, I have some pain all the time it does not go away . The fatigue of doing every day taks is horrendous.
      Self management saved me I was able to work till I retired. The pain doe not go away but with the teniques I learned you can cope. But they are costly

  227. belinda stevens says:

    I have oesteo-arthritis.It is a problem at times. My G.P sent me for X-rays at hospital .when I requested. also for pyhsio therapy 4sessions when arthritis had flared up . Also I was prescibed moderate pain killing medication I understand there are numerous types of arthritis and can affect people of all ages.

  228. Edwardia says:

    I have Type 2 diabetes, diagnosed in 2007. In 2010 on a low GI diet, my Hb1Ac was 13%. By Googling I found out about low carbing and cut down to 100g carbs a day. In the first three months, my Hb1Ac dropped to 8.5%, I lost weight and my cholesterol and triglycerides improved. I decided to make a further carb cut to 50g a day in December. I’ve lost four inches off my waist without dieting and am now a size 16 which I haven’t been since 1996. My blood pressure, kidney function, cholesterol, trigs etc are all normal or better and I’ve ditched two drugs with my GP’s permission.

    No matter how many people supply their own evidence, no matter how many studies show that low carb diets can be extremely healthy and improve adverse health markers, the Department of Health and NHS still advocates a low fat high carb diet for everyone, including people with diabetes.

    Forget all the preconceptions of Atkins. I eat meat, fish, poultry, game and lots of vegetables. I try to buy organic veg and food without additives and preservatives. I eat no sugar at all and the only starch in my diet comes from vegetables. On the Inflammatory Factor index nothng in my diet scores more than -10 out of a possible -100 in the mildly inflammatory section.

    Any person with diabetes and a blood glucose meter can show you what happens to their blood sugar if they eat pasta or bread. If someone had an allergy to strawberries, the NHS and Department of Health wouldn’t advocate that they ate strawberries. So why tell people with diabetes to base every meal around the starchy carbohydrates which raise our blood sugar ? It’s crazy.

    Pharma companies would lose billions if every person with type 2 diabetes in the UK dropped just one drug. But drugs are sold to people with diabetes as a way of carrying on eating the ‘normal’ diet which is causing ever-increasing numbers of people to become obese.

    Doctors within the NHS are not allowed to go against NHS policy so they don’t tell their patients with diabetes about low carbing. Only a comparative few of us find out about it therefore and are able to drastically improve our health.

    Around the world, studies show that eating low carb as a way of eating, improves health markers, non-alcoholic fatty liver disease, hypertension, diabetes, Crohn’s disease and epilepsy in children.

    So why does the Department of Health continue with the low fat mantra ? There must be people within DOH surely who realise that Ancel Keys’ Seven Countries study cherry-picked data from 22 countries, that it was done without computers, that regressive correlation wasn’t done etc etc and that it’s nonsense to be basing 21st century health advice on flawed 1970s research ?

    As for Diabetes UK, the UK’s major diabetes charity being funded by cereal manufacturers, words fail me.

    The Department of Health and NHS have to do something about obesity and diabetes before the diabesity epidemic becomes uncontrollable and bankrupts the NHS. It’s the single biggest health problem facing the UK.

    So please, take the heads out of the sand and engage with the research that could save lives and the NHS billions.

    Thank you.

  229. laura richardson says:

    I feel that it would be helpful if commissioners and local services worked together in recognition of the impact on mental health and wellbeing that long term physical health conditions can have. Too often the depression that goes along with adjusting to major losses is either addressed too briefly or not at all.

    Perhaps improved training for mental health workers about physical health matters, and for physical health practitioners about mental health and emotional wellbeing might be helpful.

    IAPT has improved access to psychological therapies in primary care, however I think that for many people with LTC, short term CBT would be too brief. I think a slower stream approach needs to be researched for LTCs and made more widely available at GP surgeries.

  230. CMT says:

    “Repeat Dispensing” is a system devised some years ago to assist patients with longterm conditions, enabling them to obtain prescriptions for up to 12 months medication, which the could them collect from a pharmacy of their choice. Few patients or doctors seem to take advantage of this helpful scheme, which relieves many of the annoyances of earlier systems. Perhaps teh Department of health should re-run their educational outreach programmes to encourage more prescribers to participate.

  231. Bill Johnson says:

    As a pharmacist I could see the sense of 28-day supplies of drugs but as a patient 56-day would be far better, especially as surgeries and pharmacies are tending to have shorter hours and also there are many drug shortages at present.

  232. Philip Sealey says:

    The move to 28-day prescriptions, brought in by some GP practices as a means of tackling waste, has made life more difficult for those with long-term, stable conditions who manage their medicines effectively for the sake of those who don’t. I suspect most waste occurs with short-term prescribing: pain killers, anti-inflammatories etc. It has also increased NHS costs in the form of dispensing fees and container fees, which those GP practices with a pharmacy, or who have applied for one have not been slow to exploit, not to mention the cost of procesing individual payments for each prescription item. Meanwhile, pharmacies have no extra staff to deal with this burden, and it is inevitable that dealing with more prescriptions leads to more errors.

  233. Alison H says:

    I have had a chronic pain condition for about 14 years. it is impossible to understand what this is like unless you live with a chronic condition. It amuses me when friends or colleagues say “Oh I was digging in the garden all day yesterday, I’m aching all over” or “I’m sure I’m coming down with ‘flu, I feel terrible” I want to ask them how they’d feel about being like that all the time, at least they know they’ll feel better eventually, but no such reassurance for people like me.

    The hardest thing is that you can look so well and feel so awful, also that people don’t appreciate the effort required to have anything approaching a normal life -it’s like juggling, you try very hard on a daily basis to keep all the balls in the air. You eat a good diet, get plenty of sleep, take your medication, do the right kind and right amount of exercise -not so much that it wears you out or worsens the fatigue you already have, pace yourself when undertaking any kind of activity. Do all that and IF you are lucky, you will “Manage” your condition, but if something happens that prevents any of these things working (Unexpected exertion, a stressful life event, a sleepless night etc) it all flies out of the window and you are back to square one.

    Its hard for friends, family and employers (Especially employers for some reason) to appreciate that your condition fluctuates, that there will be things that are easy one day that will be impossible on another day. You can see the disbelief in their faces, they think you are making it up -not a nice feeling.

    I feel as if I ought to get Disability Living Allowance, if only for the mobility component. Getting home from work (Yes I do work!) by public transport in the middle of a flare up of symptoms is no joke, it would be nice to have a bit extra so I could afford a taxi on those days, but the benefits system doesn’t seem to work for chronic fluctuating conditions. They will catch you ballroom dancing on a good day and prosecute you for fraud.

    I have a “Can do” attitude. I try my hardest to maintain a “Normal” lifestyle and not “Give in” to the condition, but I feel the system penalises me for it.

    I’d also like to say that I feel a lot of Doctors, even so-called Pain Specialists could do better when it comes to understanding chronic pain and keeping up with the latest developments. I’m sick of battling for everything with the NHS.

  234. AS says:

    GP’s should send 12 months of repeat prescriptions to pharmacies and let pharmacists use their knowledge to decide whether to give patients one or two month supply at a time. Pharmacists have a lot of knowledge and are perfectly capable of managing long term conditions. This way patients wouldn’t have to wait days for their repeats to be signed and they can go straight to their chosen pharmacy. Give pharmacists more responsibility they are an underused profession.

  235. Elizabeth Schofield says:

    The management of MS is key to maintaining independent lives for many. One of the most important ways to do this is with a specialits MS nurse. If we couldn’t access the exceptional person we have in this post locally, many people with MS would end up in hospital or worse, would just not know where to go for help. There must be a joined up service including health and social care. The current situation is a shambles. Local Authorities are making cuts to those services needed most by the vulnerable. Even down to restricting continence pads!

  236. Alicia Leal says:

    The problem with ME is you have good days and bad days, the good days are because you have done hardly anything and rested at every given opportunity for days before an event, that means you can go to the family picnic, a day out with your children at the zoo, even play one badminton game with friends, as long as you are prepared for 4 days of rest afterwards and possibly some pain, maybe an illness as your immune system struggles with the exertion. People see you out and about and think all is well but in actual fact there has been a lot of medication swallowed, pacing techniques employed and sometimes even copious energy drinks (although frowned upon my doctors) had to keep going.

    When people ask me what it’s like living with ME and you say good days and bad days they just don’t seem to understand the effort that goes in to looking like I’m fine, they think that bad days means I’m a little tired, they don’t know it’s sleeping for 18 hours or being in pain from infections as my immune system is always low, or just general side effects of the conditions, seizures, stomach problems, muscular skeletal conditions.

    I would like the government to show more understanding of this disease and to know how unreliable this illness is. I have tried my best to hold down jobs, jobs I always ended up losing after copious sickness days when my system has eventually run down with the attempt at keeping up with everyone else. It starts off ok but eventually the ME pops up and I struggle to carry on and fall ill. Once the cycle of illness starts if enough rest isn’t had the illnesses just keeps coming back until it stays. Only prolonged bed rest and long courses of medication will get me back to “normal”.

    I’d do anything to be me again, I was an athlete with countless energy and so much strength, and that person still lives inside of me trapped in a restricted, overweight body.

    People who have post viral fatigue get lumped in the same group as ME sufferers and that is ridiculous, it is NOT the same, the World Health Organisation have stated that clearly and yet the NHS lumps ME with all it’s awful ailments in the same category as someone who will recover from excessive tiredness in probably a few months.

    Not enough research is being done in to actual ME and not enough help is given to people like me who had hoped that one day we’d be back to who were were again. The county I live in has NO ME specialist and that is shocking, I have no one to turn to for help and every gp who sees me usually tells me that they learn about it from me which is just not good enough.

    People try to fake having ME by saying they are “tired all the time” but it’s a million times more than that and it would seem the NHS have no idea about it at all, just because we are too exhausted to fight about it! I hope this condition will be considered for greater understanding and not just fobbed off with antidepressants which DO NOT work! It’s not a psychological illness it’s neurological!

    There are around 250,000 people in the UK that suffer with this illness, when will the NHS take it seriously and help us get back to a normal life or at least one supported correctly and not lumped with people who need a long convalescence?

    • Alison H says:

      I have fibromyalgia so I have some of the same problems as you Alicia. I agree that people just don’t “Get” what fatigue actually is -they think it means you’re just a bit tired and need a good nights sleep. If only!

  237. Dr Somnath Banerjee says:

    ADHD should be considered in any chronic health conditions.

  238. Dr Somnath Banerjee says:

    I feel that ADHD should be included in any chronic health copnditions.

  239. Viv Taylor says:

    I have been in pain with arthritis for over 10 years. Just because i look normal except for my hands people think there is nothing wrong with me but let them live a day in my shoes they would not last long. I have totally burst a muscle in my shoulder i accidently banged it and due ro RA have comoletelly ripped the muscle apart. Will never be better as its like a long elastic band from shoulder to elbow split and Dr. said it was so badly damaged will never be able to stitch it together It is so painful can only lift my arm a little.
    Would swop lives with anyone to be pain free.

    • janice mabbott says:

      i totaly agree with you viv,, people dont see it, only when they see your fingers are crossing each other,,or see you with a crutch because of leg pain,, but the most inportant thing is they dont realise you also have pain inside your body too,, i have pain in my hip aswell, which the doctor thinks is coming from my spine, i also veer to the laft aswell sometimes,, so i know just how you feel, do you also suffer with shgogrand syndrome? where the eyes play you up too, look forward to hearing from people who suffer the same sort of thing.

      • Rachel Battersby says:

        I agree too. Far too little is being done about autoimmune diseases – and I think RA because it has “arthritis” at the end of its name is treated as a bit of a pain in one joint by most people rather than the terrible condition it is affecting so much of your life.

        When will the health service and government understand we don’t want to be disabled. We want to get on with normal life. If they want to cut DLA levels how about being a lot quicker with the treatments that stop us getting that way? I’m struggling to work and all I get is wait without any help at all as more and more of me is affected. Do they really want to force me onto benefits and a life of uselessness? We’d all be better off financially and a lot happier if they gave us the treatments that are available when we need them – not when it’s too late for them to do any good.

  240. David Barlow says:

    Improvements in long term conditions can be produced by bringing together health services, voluntary organisations and self help.
    1. Good housing conditions are vitally important in helping elderly people maintain good health. A combination of good lifetime design of housing with provision of appropriate adaptations can assist people to stay comfortably in their homes. There is a lot of work needed to bring together housing, health and social care services to more effectively meet needs. Housing associations in particular offer important services such sheltered housing and home improvement agencies.
    2. There has been too little investment in mental health care. A huge amount of anxiety, depression, ME etc is presented at GP surgeries as physical illness, but no physical causes can be found. Professor Richard Layard’s work at the LSE shows the economic benefits of improved mental health services.
    3. Prevention is essential as people age. At the Beth Johnson Foundation we have pioneered a range of initiatives which can help people to stay in good health as they age. These include intergenerational and volunteering activities which productively use people’s skills, mid life health assessments and ways of making cities and towns more Age Friendly.

  241. jb says:

    I use to be very active till 1994 i put my back out .after many years and 3 surgeries later i have Artritis in my hip and spine.i feel that im just another statisic of a back pain sufferer. I loved being at work before all this I want to go back to work but have to rethink the kind of work i can take on…which isnt as easy as you think.Never the less it make you feel much better being around people than being stuck in doors with no one to see.
    It be great if there could be like a health center for people with conditons where there is no time limits and after a few sessions being kicked out the door like you have with Physio.i have had lots of pysio visits in my time and the longest session i have had was 4 weeks which i felt wasn’t long enough…i know my body they need to listen to you more. Yes the resources are streched so the goverment needs to tackle this ,,We have good health care in this country and there is no such thing as free health care that’s what we paid national insurance for ..isnt it….Maybe if the goverment was more stricter on foreign visitors who dont pay there hospital bills…will help a’lot i’m sure.

    • Miki Byrne says:

      I agree with how you feel. However not treating foreign visitors or residents goes against the whole concept of the Welfare State and advocates a policy of separatism I cannot agree with.

  242. Debbie Mildenstein says:

    I am 44 and I have rheumatoid arthritis and ankylosing spondylitis. I was on incapacity benefit until the governments overhaul then I was refused it. I went and got a job, I lied about my health as I know I wouldn’t have stood a chance. I got a job as a carer as this is what I’ve done since aged 18. But I only lasted 3 months as it caused me so much pain.

    I am now looking for work..a job where I don’t have to stand for more than 30 minutes…or sit for more than 20 mins, doesn’t involve anything too physical or heavy. Also the chemotherapy medication I take weekly have some side effects that have an effect on me daily. From feeling sick to wanting to curl up and sleep. I have days where I am fine as long as I don’t do to much, If I try to do some gardening on a good day I know I will pay for it with pain after.

    So how are people with conditions like this be expected to be able to do a job…and get a job while being honest and telling prospective employers about problems..they are going to chose someone healthier everytime.
    I also think people with long term degenerative illnesses should get free prescriptions. I get 6 lots of medication a month, just having lost our working tax credit I now have to pay for prescriptions.
    The illnesses I have not only affect my joints and spine, they also will start to attack connective tissues and organs such as my heart, which will mean more medication.
    I also don’t look ill a lot of the time, there are a lot of people suffering with illness that has no outer symptoms, and people judge you by how you look or attach a disease like arthritis with someone a lot older.

    • Vaun Norman says:

      I was taken aback by your comment it is near as damn it my exact experience of dealing with the above. How do you work when I can’t stand or sit for more than twenty minutes. I take modified release morphine for cancer pain and the arthritis also I’m on methotrexate. My biggest problem in dealing with this is, the interface between my GP and the Rheumatology Dept. at the hospital I attend. Not the fault of either party i suspect, but trying to get bloods done locally, rather than 15 miles away fortnightly, didn’t happen. I am still chasing letters sent by the hospital to my GP about NSAID anti-inflammatory drugs. I cannot complain about their individual care though.

      Also, let’s face it, it’s fairly depressing to have this long term chronic illness, neither my Rheumo or cancer doctor have suggested any cognitive therapy or counselling which there is a long waiting list for.

      I would like to have some exercise advice, and the “prescription” to a gym wasn’t a help. I was looking for better advice from a physiotherapist than I got. They said due to my illness and inability to walk far, run, cycle etc ,there wasn’t a lot they could do. Which is hat I thought enforce I attended, surely there must be some therapists with specialist knowledge of this disease.

      Thanks for letting me know I’m not e only one!!

    • Jenny says:

      Diagnosed when I was 35 had 4 children. Now divorced children flown the nest. I now live with my Canine Partner (chocy Lab – Gerge). Things may have changed so check it out but when I started on long term medication there was a form to fill in for free prescriptions. There is of course the pre-payment certificate which you can buy for 6 or 12 months. If you have several items they will pay for themselves and save you loads. I’ve been in a wheelchair now for over 20 years and there are various benefits that I have which you may well be entitled to some or all of. I have Direct Payments (the name has changed and can’t remember what now-something like self directed support) I also have SDA and DLA. As I’m no longer able to work I have Income Support which automatically entitles you to free prescriptions.Any of the above that you apply for you may well be turned down for. However that seems to be standard procedure so please please appeal against that decision. There are many who won’t tell you what you might be entitled to. Do look into it. Your GP or someone at your practice should be able to point you in the right direction-ask to be referred to an OT they can be invaluable if you need any aids to help with day to day living. Good luck and hope you’ll soon be without the worry of costs for your medication!

    • Miki Byrne says:

      You make some very good points here. I’m in a similar situation. I’m always told I look well, yet I can now do very little. I have every sympathy with you.

  243. BendyBird says:

    The NHS has failed me for 12 years, after debating ending it all after 12 years of chronic pain i decided 1 more chance, I self diagnosed EDS via google and demanded my GP send me private to the specialist in London.He sent me on the NHS and diagnosed EDS, he also suspected autonomic dysfunction, 8 months on he managed to type a referral, and theres a 12 month wait.

    My petrol bill last week ALONE was £40 for the 3 hospital visits I had, I pay for all presciptions, I am awaiting a MRI scan my GP has had to apply for special funding as the farce that is Physio thinks my disc isnt a problem despite it now affecting my whole nervous system and bowels.

    I work, my hours have been halved as my GP suspects ADHD as i keep having executive function disroder when bored, and our PCT has pulled funding into adult ADHD, I earn £500 a month, pay for scripts and on average the fuel bill is £100 a month for hospital appointments,

    I am trapped.

    The NHS is disgusting, most days i consider ending it all, im on a waiting list for the pain clinic as the 1 drug (cymbalta) that may help me is on the red list, ive been waiting over 4 months for the pain clinic, havent even had a response yet.

  244. Maureen Cox says:

    I would like to draw the groups attention to some excellent work done by the RCN Rhematology Forum, ‘The Pandora Project’ which explores the role of nurses in supporting patients with RA but could be transposed to any of the long term conditions. This demonstrates clear evidence of the benefits nurses add in the care of such patients, and how economically nurses can enhance care in an efficient and sustainable way. This review comes at a time when speiclist nurses posts are under threat with patient care being put at risk as a consequence.

  245. Audrey Pedersen says:

    I have been diagnosed with Sarcoidosis and What the doctor calls ” A medical marvel for all interns.” I have had facial palsy twice, erethyma nodosum, chest wall pain, pains in all joints especially ankles and wrists, pain in ribs and back, labrynthitus, skin sarcoid on eyebrow and up both nostrils. On prednisolone, methetrexate, cinnarizine, tramadol, alendronic acid and folic acid, temazepam (to help me sleep), i am currently experiencing for the last 18 months terrible phychotic sleep disturbances and depression. I am under my local GP, a rhumatology consultant in a hospital 30 miles away, and a sarcoid professor and a neurosarcoid consultant in london 350 miles away. I have to pay for all my transport and accommodation while going there twice a year too. Somedays i cant do anything just sit around all day, other days if i do anything, you can guarantee my body will pay for it the day after. I had to quit my full time job as a nursing home carer as i just couldnt cope with the manual side of it. I got another job in a parmacy, but couldnt stand for long hours, now i have a part time job as receptionist in a doctors surgery. This helps because most of the time Im sitting, but it is a stressfull job. I have applied for DLA twice and twice been refused. Even tho i sometimes can even fasten my clothes bymyself or walk to the toilet in the middle of the night as my joints are that bad. The labrynthitus causes me to have bad dizzy spells and sometimes feel as though im going to fall over. Poeple just dont understand because YOU DON’T LOOK SICK. But I AM. I found the words to describe it on the internet and it hit the nail on the head. “”its like a beautiful dream house on the outside, until you walk inside and find the whole interior is riddle with termites, crumbling and deteriorating in every corner”"”". Thats exactly how I feel. There is not much information about SARCOIDOSIS, and the GP’s dont come across in very often. Most dont deal with it in their lifetime. There is not much help and definitely no benefits to help you out. Please help change the system . Thankyou

    Audrey Pedersen age 46. May 2012,. Cumbria England

    • Jan Davies says:

      Hi Audrey, I see you’re in Cumbria, have you considered you might have Lyme Disease? Facial palsy, etc, is quite a common symptom of it. It is worth investigating, really it is. I contracted Lyme from up near Keswick, but it tool 3 years of various diagnoses to actually realise!

  246. Liz Edmonds says:

    I endorse alot of the blogs previously written. Working with People with MND involves a demanding and time consuming input which can be very rewarding. Consultations which can be in their homes or in clinic need sufficient time in a non rushed environment. The reason for this is that alot of these patients have communication problems and may or may not be using communication aids to discuss very personal and private aspects of their care plans relating to this terminal condition. They are also trying to adjust to the shock of the diagnosis whilst having no control over increasing weakness and dependency. In addition to this they experience role reversal as a result of loss of independence which is another ‘loss’.
    I feel 6 weekly meetings with the multidisciplinary teams, involved, are essential to ensure all involved are meeting the patients needs. However it is important that, as increasing numbers of professionals become involved in the patients care, that we avoid repetitition of things and that we prevent the patients feeling they are saying the same things to different professionals but feel they are not heard. This shows how documentation, records and communication plays an important part in care plans, as patients find it fraustrating at being asked the same questions and repeatedly giving their answers on such things like where they want to die and what their feelings are on dying. This makes some patients decline services and input which may or may not enhance their quality of life for a short time which might be of great benefit to them at that time.
    Recently at a local support group meeting in Havering, patients and carers told the group that the timing of services does not accommodate patients and thie dependence and or levels of fatigue. Others find face to face contacts rather that information on leaflets much more beneficial. Carers mentioned they feel isolated but find support in attending carers forums, hence more should be available, with adequate ‘sitter services’ to allow them this break from caring. Cares say the a sitter service is available but that this is not always available at the actual time they want it

  247. Simon Lawton-Smith says:

    The Mental Health Foundation has called for the better integration of physical and mental health services in the light of the huge numbers of people across the UK not just with a long term condition (LTC), but with comorbidity or multiple morbidity – often including mental health problems.
    Mental health problems such as schizophrenia or bipolar disorder or chronic depression can also be LTCs themselves. Poor mental health is associated with an increased risk of LTCs such as cardiovascular disease and diabetes. Good mental health is a known protective factor against these and other long term conditions. Poor physical health, including LTCs, also increases the risk of people developing mental health problems.
    The evidence is clear, as summarised by the Royal College of Psychiatrists in No Health Without Public Mental Health (2010)
    Depression is associated with 67% increased mortality from cardiovascular disease, 50% increased mortality from cancer, two-fold increased mortality from respiratory disease and three-fold increased mortality from metabolic disease.
    Rates of depression are double in those with diabetes, hypertension, coronary artery disease and heart failure, and triple in end-stage renal failure, chronic obstructive pulmonary disease and cerebrovascular disease.
    Depression almost doubles the risk of later development of coronary heart disease. Increased psychological distress is associated with 11%-increased risk of stroke. Depression predicts colorectal cancer, back pain and irritable bowel syndrome later in life
    People with schizophrenia and bipolar disorder die an average 25 years earlier than the general population, largely because of physical health problems. Schizophrenia is associated increased death rates from cardiovascular disease (two-fold), respiratory disease (three-fold) and infectious disease (four-fold).
    The Foundation would therefore like to see a LTC Strategy that (among other things) makes clear the link between LTCs and mental health, and contains specific outcomes around
    a) improving the mental health of people with LTCs, and reducing the risk of comorbid mental health problems
    b) reducing the risk of developing LTCs among people with mental health problems.
    We would also want a link to, or overlap with, the Public Health Outcomes Framework that suggests an indicator on ‘mortality rates from CVD and chronic respiratory diseases, which will be influenced by improvements in the mental health of people with these conditions’; and the NHS Outcomes Framework indicator of ‘reducing premature death in people with serious mental illness’.
    To help achieve these outcomes, the LTC strategy should specify a requirement of
    • regular physical health checks and accessible physical health care for people with severe mental illness
    • routine assessment of the psychological needs of patients suffering from LTCs.
    This is an area that has traditionally been overlooked, with either a mental illness diagnosis ‘overshadowing’ potential LTC issues, or a LTC diagnosis ‘overshadowing’ mental health issues. This fails to take into account the strong evidence of the inter-relationship and connectivity between physical health problems and mental health, and increases the risk of both LTCs and mental health problems. The strategy needs to ensure that all staff supporting patients with a primary diagnosis of an LTC or a mental health problem are fully aware of the connectivity between the two and are able to facilitate assessments and, where there is an assessed need, care and treatment. This is a matter of clinical training as well as ongoing professional development.

  248. Sue says:

    I have Type 1 Diabetes (23yrs on Insulin) and Ulcerative Colitis (8yrs) and as the professionals can imagine its one of the worst combinations of LTD to have! I also work full time as a midwife. I find the lack of communication between my treating Drs the most frustrating despite them both being at the same hospital – if you also include unhelpful advice/treatment from my GP due to delays in getting letters advising changes in treatment its enough to make me explode – no pun intended!

    Why cant we use technology more – I would love a swipe card where at every attendance the notes the Drs make are put on and I can then take it to the next clinic or GP appt and they will then be instantly updated on my medication and progress (or not as sometimes happens!) I get really cheesed off at having to explain what the Gastro/Diabetic team have said/done each time I go to their clinic. More radically speaking — what about a system similar to facebook where I can send messages to my treating Drs/Nurses when I am having a problem and they can reply. 9 times out of 10 when I ring the nurses they are either on holiday/engaged/not available until a certain time when I am usually working

  249. Keith Booles says:

    As a person with a LTC one of the key areas of care which needs to be reviewed if that od specialist support being available for all…I am very lucky in that working as a health care professional as well as being involved nationally with a specific care forum related to my condition and my health care role has enabled me to access the support and guidance that is needed when you have a LTC because it can be like a desert sometimes as you do not know where to go, what support you can access locally or are entitled to because no one seems to know. One of the reasons that this is happening is that specialist resources are not being provided for to all due to lack of money, teaching/educational course availability, specialist nurses/doctors/dieticians/psychologists being employed by all hospital and community care trusts, courses for persons with LTC such as diabetes being available throughout a care trust area, lack of psychological support for patients, their carers and families as things do go wrong in all areas of life when you have a LTC.
    I feel that this needs money to be spent locally, regionally and nationally now so that persons with LTCs have a better quality of life and less problems/difficulties related to whatever long term condition they may have personally

  250. Dr Prasanna N. de Silva says:

    Dear Mr Lansley (and David Cameron)

    In addition to QE3 you are just about to donate to the banks, could it be a thought to give each carer of a dementia or stroke patient a living wage (£20,000 = to a S/N salary) to maintain themselvesand their loved one in the community? The money is much more likely to be spent within the UK economy to increase the available (real) money supply, and increase economic activity perhaps?

  251. gg says:

    we need “one system for all LTDs”-

    there seems to be a big and to me unexplainable ‘system difference’ between “common” LTDs and ‘rare’ ones-
    for example type 1 diabetics permanently “stay on the books” of their diabetic clinic, get regular yearly check ups to try and catch any further possible complications early on, have year round easy access to their diabetic team if necessary.
    (I think similar applies to the somewhat ‘rarer’ LTDs like MS and Lupus)

    but patients with the ‘rare’ EDS (Ehlers Danlos Syndrome) get discharged as quickly as possible (some straight after being diagnosed!), both from the very few existing specialist clinics and ‘normal’ rheumatological clinics and handed over into the care of their GPs who generally have no idea about EDS and its possible multi systemic problems/ co morbidities.

    yes we can be re referred- but why the extra ‘hoop jumping’/ extra waiting time for patients and the additional administrative costs for GPs and consultants/hospitals alike ?
    yes we can also be ‘referred on’ by GPs – but GPs usually lack the knowledge (or the time/will to aquire it) to judge symptoms and know where to refer to appropriately.

    what might help too- making “setting up NICE treatment/management guidelines” for ‘rare’ conditions easier/cheaper-
    with such guidelines our GPs could maybe become our ‘main point of care’ and we could gain access to better treatment (for example more efficient longer term “all joints included” physiotherapy- rather than the 6x 20mins for 1 joint, 1-2 times a year many of us have to contend with- ) which would benefit not just the patient but also the cost effectiveness of the NHS

    teach everyone in the medical and social fields that:

    you can look well whilst not being well

    to always keep in mind that there are conditions that cannot be seen/found out by standard tests like blood test/x rays etc

    that true psychosomatic disorders (like conversion disorder, munchhausen’s, munchhausen’s by proxy etc) actually are very very very rare-

    much rarer than some rare (or should that be rarely thought of/ rarely diagnosed) genetic conditions like EDShypermobility type-
    hence that it might be more efficient and more helpful to the patient to “think outside the box”/look into possible rare conditions first rather than jump to costly (to the NHS AND the patients well being) wrong conclusions.

    that the internet can be a helpful tool in trying to find/learn about possible rare conditions- and that reputable, official info can be found – not just “loony” info

    that people who have had to learn to live with chronic pain dont necessarily look like they are in pain but still are-
    we get told we have to learn to live with chronic pain and fatigue, but once we do and do it fairly well… it is often assumed that we dont have the problems anymore, are much better when all we are better at… is dealing with/managing it.

    in the same vein… we are encouraged to become ‘expert patients’ – only to find our expert patient knowledge to be ignored or worse “patronisingly laughed at/poopooed” by medics/medical field workers. encourage them to have an open mind and ear especially for ‘rare conditions expert patients’

    that many chronic conditions have ‘flares’- so they might see us functioning pretty well, but that that doesnt mean we always can and do.

    that many flaring conditions require an ‘adjusted life style’/'restrictions in daily life/activities’ to avoid cumulative effects of ‘normal living’ leading to a flare.

    many LTDs have co morbidities= the patient often actually has several LTDs- for which they see different specialists who usually do not communicate with each other, do not co ordinate treatment plans/medications-
    and the patient is left to try and co ordinate things themselves (if lucky (!!) with input/help from their ‘not best informed’ GP…)

    again this is neither good for the patient and their illnesses, nor efficient for the NHS. such patients need one ‘well informed of their condition and its co morbidities” medical person who can and does co ordinate, to whom they have easy and quick access.

    benefits system- there are cases where it appears that although employers are supposed to adhere to the DDA/do everything they can to enable the disabled to be/stay in /take disabilities into account…

    the jobcentres/benefits agencies do not- people with disabilities who are able to work (with considerations/adaptations etc) but do not qualify for EAS (due to an ‘inappropriate for some conditions’ points scoring system and lack of knowledge of certain condition by decision makers) come under JSA= they get told such ridiculous things like “hospital appointments/treatment appointments are NO excuse (excuse????) to miss a signing on date- and therefore missing a signing on date will have consequences”-
    ridiculous! (and very costly to the person and again the NHS and the benefits system in the long run)

    • BendyBird says:


    • josephine chimes says:

      too good damn true. My condition is an ‘invisible disability’, called non-24 circadian rhythm disorder, n24 for short. To meet me, i would come across as being like any other 27 year old, maybe a little tired, but nothing than that. But to know me for a month, is when people really get a firm idea that i have a bad condition, when i’m unable to attend things, or when they see me and i look like a zombie and not able to be coherant.

      The problem is, people just see that i’m fatigued, tired, exhausten, sleep deprived. But it goes deeper than that, it affects the digestive system, mental health, hormone regulation, body temperture, etc. Like you said, it’s not something that can be diagnosed from a blood test, it takes a specialist to diagnose it and even then it’s after all other different and sometimes pointless tests. After that, people with n24 are packed off with a medication which isn’t actually designed for their condition and so doesn’t always work and told not to come back till a year later and even then, they just ask you how you are, write that down and you’re off again home. Pointless. There’s no help or support, there isn’t even anyone i can talk to because it’s so rare. The only form of support i have found is from a support group in AMERICA!

  252. Emma Brodie says:

    There needs to be more resources within the community including a comittment to providing sufficient levels of nursing staff as patients with LTC should be cared for within their own homes. Strategies are in place but severly under resourced in terms of people to actually carry out the care, putting strain on staff and risking poor quality care to patients. Lean working may be the phrase of the day in the NHS but it should not be used to reduce the numbers of frontline staff who are essential to the support of patients with long term conditions.

    I also think closer networks between health, Socialcare and charity organisations such as regular MDT’s or shared offices would lead to less fragmented care.

  253. john eayrs says:

    I use my DLA to pay for Alexander Lessons which enable me to be aware of how what I do can cause my pain to be worse than need be.

    I have found from experience that GPs and Consultants do not know what scientific investigation is. There investigation tends to be this is what I learnt duing my medical training. When I did my HNC Applied Physics I learnt about errors of observation. When I did my Oceanography and Physics Degree I learnt something about statistics and errors. I also learnt methods of scientific investigation and how to test conclusions from experiments.

    GPs and Consultants do not understand errors of observation or feedback mechanisms.

    Many people who have seen consultants concerning long term conditions have reported to me that they were interested in how to manage the condition. They found that the consultant considered that their job finished at the diagnosis and had no interest in providing information on how to manage the condition long term.

    I have learnt to manage my condition by observing it and seeing what does work and what does not. I have had to develop a working hypothis to make a prediction and then do some form of experiment to determine if my conclusion was valid or not. I have to discuss this with people in the healing field. Dicussion with someone in NHS was often pointless as they were unable to understand that the human body is an engineering system with many many different feedback mechanisms.

    NHS physiotherapists I have neve found helpful. Quite a number people in Southampton have found that they have to pay for private physiotherapy if they want effective help.

    • Rachel Battersby says:

      I agree with NHS physiotherapsists being a total waste of money. You are assessed, sent home with a list of exercises (that vary very little with each condition) go back for one more assessment and signed off no matter what you’re like. Or you can end up on long term back pain management courses. On which they recommended taking up sport and showed a picture of such sports as badminton and golf. Given that both those sports are highly unsuitable for someone with back pain it shows their lack of understanding as to what they are preaching. They also had us lying down on mats for “relaxation” to help. That was fun as we tried to get back up – at least we all looked ridiculous in our attempts together. Why not save the money, give people a certain allowance to spend themselves which can be spent on osteopaths, private physios or Alexander technique therapists or any other therapy that may actually be of help?

  254. Cheryl Risden says:

    I have fibromyalgia and ME and my husband has Young onset Parkinsons.We have had to fight for any help. It took 3 years for my husband to be diagnoses and 4.5 years for myself,this was mainly from services being stopped or having to be swapped over. There is no fibromyalgia clinic for 65 miles on windy country roads(no motorway until you get there).The only ME clinic is now at threat of clousure so is not taking in any patients.My care has been left to my GP,she is fantastic but is still a registrar.I am on a waiting list for pain clinic but there is still a 6month wait,ive already been on it 3 months.After fighting with DWP for 6 months my condition has deteriorated so much i now need a wheelchair but there are only manual wheelchairs available which will require another 6-10 month wait. Even if i do get one i have no one to push me,my children are 4 and 3yrs old.I can undrstand how people without support would give up or take their own lives.

  255. K Rhodes says:

    I have had M.E. for over 12 years now.

    I am generally left to ‘manage’ my condition on my own. The ME/CFS Service only want to see people who need to learn how to manage their condition (generally newly diagnosed people). Their very limited funding doesn’t really allow them to see everyone and there is a long waiting list. My GP doesn’t know a lot about the condition and if I express frustration or have a relapse the only thing they can think of is to offer me an online (ie cost effective) course of one-size-fits-all CBT. Having M.E. can make you depressed, but is not a phychological illness. People with some other chronic conditions have an annual review, or a specialist nurse who they can speak to if/when they need. I feel quite forgotten by the health service.

    I am able to work a little, but my own GP has said that my health would be better were I not working. However, as I am working a little, the benefits system expects me to continue to do so, even though it is detrimental to my health. Were I to stop work and apply for ESA I probably wouldn’t get it – I have heard many horror stories from people with M.E applying for ESA. M.E. charities say the new PIP, set to replace DLA, may well exclude people with conditions like mine. I am worried about the goverment cuts to the benefits system, and the knock-on effect of being labeled as ‘scroungers’ by the media. This label, and the can-you-or-can’t-you benefit questions, is particularly a problem with fluctuating conditions. Working takes everything I have, leaving me feeling ill and unable to do things like cook myself a meal or bathe regularly. Socialising is seen by many professionals as a luxury that sick and disable people shouldn’t expect to have, yet lack of social contact leaving us feeling isolated and depressed.

    I am fortunate to receive the low level care component of DLA. This time I applied and was awarded it, but the time before I had to go to an Appeal Tribunal which was incredibly stressful and exhausting and did not help my health one little bit. The benefit forms are too long. I am an intelligent person yet I have needed help to understand them and fill them in.

    I do hope that the situation for people with all types of long term conditions will be improved.

  256. laura says:

    I really believe the goverment and doctors could do so much more to help people with long term illnesses.
    I myself have mild M.E and my husband has Ankylosing spondylitis which has caused him to be out of work for 19 months now, he use to be a care worker and loved his job, he was getting benifits for 6 months but now they have been taken away from us as he had a medical back to work assessment and was told as he can pick up a empty box and walk he can work. This is rubbish as he is on so much pain relief and lives day by day some days he is in so much pain he cant do anything let alone work, what employee would hire a unreliable person?
    I said i have mild M.E and a year ago i went part time as it was all i could manage then we started to struggle with money and morgage so i had to go back full time and now my life is get up go to work struggle come home eat and bed then same again next day i have no social life and spend little time with my husband i try and help him on bad days and he tries to help me when i have bad days but no one helps both of us the goverment dose not care as we can both walk and have no kids. Doctor helps husband but is not a believer in M.E. Life is a struggle and all we want is help from our goverment and them to care about people with long term conditions.

  257. Anon says:

    More needs to be done to open up health records to patients so that they are able to monitor their own health and make this visible to their healthcare team. Records should be owned by the patient and NHS, taking away the stranglehold GPs have had on information flowing effectively between people caring for patients and the patients themselves. All data should be real time, to allow effective care and monitoring for public health outbreaks.

    I far prefer seeing the Nurse Practitioner at the practice as I am treated as a whole person, rather than bits and pieces in a very rushed consultation. However it is essential that whoever I see is an EXPERT in managing my condition, I cannot waste my time seeing someone who knows less about my condition than I do as a patient. I do not object to people not knowing everything, but they need to know their limitations and help me navigate the information I need, so that WE can make an appropriate decision about the plan of care/treatment that is appropriate.

    I need flexible access to appointments with a one stop approach so I can get on with my life and work, sadly I do not get it, even though many activities are at the GP practice. Retinopathy screening one day, medicine review another, blood tests another, diabetic review another. These need to be available evenings and weekends in addition to during the day so that I can continue being an effective contributor to society. I need full online access to my clinical record and to be able to request prescription items when I need them (not having to wait 2-4 days for a prescription to be signed off) with the prescription delivered to the pharmacy of my choosing in hours, not days. This is our National Health Service, if I choose to visit a walk in centre one day, the GP the next, the hospital the next they should all have ALL the information they need to care for me safely. This needs to be on demand 24/7 with appropriate security controls, if we go to a cashpoint of any bank they can access enough of my banking records to say whether I can withdraw cash, the same needs to apply to my full health record.

    Many activities for the patient are becoming more fragmented, I had to wait over a week for an ECG for a dysrhythmia because that was done by a technician in a different building of my GP practice. I would hope that my doctor or nurse could do this, but this fragmentation of roles meant I had 3 appointments (5 including 2 at the hospital) rather than just one for a potentially serious condition. An ECG machine should be in every single GP practice and takes very little time to undertake, instead of which nearly a day of my time was taken up, even before the referral to the hospital where they actually treated me far more holistically than the GP. I had ECG and Echocardiography in one appointment immediately preceding my appointment with the cardiologist, all done in less than 2 hours (routine). If only primary care were as efficient and patient focused.

    We have to see what the NHS Bill brings to us both as patients and practitioners but if the last round of fundholding is anything to go by GPs will do whatever is cheapest for them, not most effective for the patient or cost-effective for the NHS as a whole. I hope that they will surprise me, by commissioning well coordinated combinations of expert care delivered in a way that is convenient to my lifestyle and improves my health outcomes.

  258. Christine says:

    Despite having epilepsy and severe migraines since puberty, I have managed to rasie a family, get a degree and train as a teacher/lecturer, complete some mental health nurse training and taught in both secondary schools and colleges for 15 years. However, since a throat virus in 2005 I have developed Post-Viral Fatigue Syndrome (Also known as ME/CFS) I cannot stress how much effect this has had on my life. I was only diagnosed in January 2012 after years of wondering why I was having to spend increasing amounts of time in bed or being mostly housebound. I am now mostly bedbound and do not have the energy to stay up for more than a couple of hours which gives me a delayed reaction. I have various muscle and joint pains and cannot concentrate as I used to or remember things. I am self employed as a seamstress as I can work at my own pace (I could not hold down a job outside the home now – even attending a hospital or doctors appointment is exhausting and I have to be taken 50 miles by ambulance to the hospital specialist)
    I am lucky to have found a doctor and specialist who are understanding and sympathetic of my condition which is not the ususal case for people with my problem. Some doctors and nurses say they do not believe the condition exists or have the wrong belief that it is a psychological disorder despite it being classified as a neurological condition. Even NICE guidelines suggest Graded Exercise Tharapy and Cognitive Behavioural Therapy which has not been tested for efficacy and a significant majority of sufferers who receive these treatments say the treatments make their condition worse.
    People like myself struggle to get sickness and disability benefits despite the ME Association and other sources stressing that living with PVFS is much more disabling than diabetes or cancer. The ATOS assessment is a source of fear for those with chronic fatigue syndromes as the questions are meaningless in assessing the work capability of somebody with the conditions. I am unable to prepare myself a cooked meal, bathe without supervision or walk far.
    My husband has to care for me and our son who has autism so he is unable to work. I had become self-employed as a seamstress so that I could work at my own pace but I cannot work to the level a normal and healthy person could. I have to take frequent rests and am mostly bedbound. Much of my work is done in bed as I cannot get comfortable in a chair.
    My condition means that my temperature regulation is compromised. I have to rely on sources of direct heat to remain warm by using an electric heated pad. We cannot afford to heat the house to a level that is comfortable for me. The biggest threat to mine, my husbands and my sons health is not having sufficient money to live on. I have applied for Disability Living Allowance but I haven’t got a decision yet. My son gets High rate care DLA and low rate mobility. He is 13 now and will be reassessed when he is 16. My husband has minor health problems but he has to care 24/7 for myself and son without any break. He receives just £56.00 in Carers Allowance. He doesn’t want respite from myself and son, however, he wants to receive practical help in the home so that he can spend quality time with me and our son. I don’t even have the energy to run a vacuum over the floor or make/change the bedding. Everything falls upon my husband. Without sufficient money my husband has to do most home repairs, etc. His job is relentless and probably has more effect on all of our health…

  259. Hannah Walker says:

    I live with bipolar disorder, which is a 24/7 condition. I’ve been diagnosed with it for 20 years, and have had 24 hospital admissions. I have lost my career (twice) and my marriage (only once!). It is, as well as being an LTC, a life threatening condition – 30% of people with bpd commit suicide. I receive DLA, but feel very troubled by the massive welfare cuts as it seems that mental illhealth will be difficult to judge. I’ve heard that the consultants who will be assessing for the new PIPs will not necessarily be specialists in the conditions they are asked to look at. So far, in the pilot study, most of the assessments have gone to a tribunal as they were inaccurate. Surely, we have a right to be assessed by a specialist in our conditions? This money is a life saVER.

  260. CS says:

    I have two long term conditions. Neither can be cured, only managed. There are many problems that I have come across over the years since I first started having symptoms and I’ll try and be brief.

    Firstly, in terms of my use of the NHS, my experience can be summarised as follows: I had symptoms for a long time before diagnosis (years), during which time I was repeatedly patronised and dismissed by many doctors; even after one diagnosis, when I tried to find out more about my condition and suggest new avenues of investigation, I was mocked and dismissed by consultants one of whom laughed at me for accessing internet support groups. Thankfully eventually I did find some good specialists but I could have really done without the long, rocky road it took me to get there.

    A major issue for me is that my conditions are rare and so many doctors, even consultants either haven’t heard of them or are inadequately educated as to the most relevant up-to-date research. I think training of health professionals to keep an open mind and be willing to educate themselves – from the patient at times – should be vital in any strategy. There are too many authoritarian / paternalistic attitudes among some doctors particularly which leave the patient feeling frustrated and stressed and like they are not being listened to.

    I was diagnosed and told that there was nothing that could be done to cure me, told to take painkillers and bar a bit of physio (which sadly didn’t help despite the therapists being very professional) I was left to my own devices. There was no follow-up from my GP to see how I was getting on, and I felt like I had just been dumped and left to cope with my chronic illness by myself.

    I feel that there needs to be some kind of service in place for people diagnosed with LTCs so that after they get diagnosed there is some structured support they can access at their local GP surgery. Counselling should be offered as standard seeing as having a physical LTC puts you at increased risk of depression and anxiety.

    It hasn’t been all bad – but I am now worried that those good aspects will be under threat with the new NHS reforms. I worry that people like me, with rare conditions, will fall through the cracks and national centres of excellence will be eroded as local budget decisions focus on more common ailments.

    You mention above about people with LTCs becoming experts in their own care, well many people with LTCs (including me) already feel this way, the problem is that legislation surrounding health and care often doesn’t reflect this.

    For example, at the moment the UK is undergoing a welfare reform which seeks to dictate to people with LTCs what they are and are not able to do. I like any other person with an LTC am the best person to decide whether or not I am capable of working and in which types of job – and yet the forms I am having to fill in bear no relation to a full time job or to the conditions that I suffer. I am asked questions such as ‘can you go up two steps’ and if the answer is ‘yes’ this is supposed to mean that I can fit my fluctuating, complicated conditions around a full working week (without exacerbating my health to the extent that I will be turning up at A&E). It’s laughable.

    Added to this, employers are often unwilling to be flexible and only a tiny minority of employers are willing to take on an employee who is disabled or who has a medical condition because of the apparent costs and inconveniences involved.

    So any strategy which aims to make people with LTCs’ lives better needs to take into account welfare benefits and employment rights. E.g. a very important part of managing pain and fatigue is pacing – and being forced into a standard 9-5 job does not square with this, and neither does the removal of benefits that help disabled people live independently, such as DLA. So there needs to be an urgent rethink of the welfare reforms, and many more efforts to get businesses to employ people with medical conditions and offer flexible working including home working even if this means financial incentives.

    Indeed a person with a LTC is often in the confusing and maddening position of being told to rest, pace themselves and avoid certain activities by their doctor or specialist on the one hand, and then being found ‘fit for work’ and expected to go and do a full time job by the DWP on the other. It isn’t joined up thinking, and it just causes stress and anxiety to the person with the LTC which ironically will make their condition worse, not better.

    I think the worst problem facing people with LTCs – from my perspective – is just a lack of understanding, plain and simple. People who are well just don’t get what it’s like to live with an LTC. That includes some doctors, and it certainly includes the DWP and the vast majority of employers.

    So any strategy surely must have as its foundation greater education about long term conditions, and what it feels like to live with one. Someone in government should Google ‘The Spoon Theory’.

    • A Anonymous says:

      Everything the above person has said applies to me. I’m too ill to write everything I would want to say, sorry

  261. AS says:

    I work as a Respiratory Specialist Nurse dealing with those with long term respiratory conditions – particularly Chronic Obstructive Pulmonary Disease (COPD). I have recently completed a MSc dissertation about self management in COPD.

    The key recommendations from my research are:

    The cause of frequent exacerbations, which increase the risk of utilisation of unscheduled care and hospital admission, should be investigated and potential treatments instigated before or alongside the initiation of self management interventions in COPD.

    Health care professionals need to “reshape” their thinking with regard to a self management approach. The commitment and support of all health care professionals is crucial to the success of any programme.

    Training of health care professionals is essential. Health care professionals must be trained to ensure the have the skills to facilitate behaviour change as well as specific skills in the delivery of evidence based care to individuals with COPD. An identified health professional “case manager” who has a responsibility to guide and coach the patient through their disease journey is likely to be the most effective way to support this.

    It needs to be recognised that self management programmes should be embedded across the whole health care system and involve all members of the multi-disciplinary team within the health care economy. It is also crucial to recognise that we should not be seeking just to reduce pressure on the healthcare system; the most important change is that of patient behaviour to achieve better disease control and outcomes – for which we need better outcome measures.

    It is important to remember that self management does not just comprise of education or the transfer of knowledge. Programmes must be patient-centred and be reactive to the needs of the patients in the locality. The best programme is likely to be one that is tailored individually to the patient taking into account their co-morbidities, the severity and complexity of their disease and the psychosocial situation surrounding the individual. Regular reinforcement and follow-up are an important part of these programmes.

    Finally, it is very important to be aware of the hazards involved in implementing a self management strategy for those suffering from COPD. These include underestimating the skills and knowledge of the health care professionals and whether they can include work such as this within their current roles; not appreciating how difficult a process it is to manage the change process and also being overly optimistic that an effective, well structured support mechanism will result in measurable improvements to the health economy.

  262. AH says:

    As a senior nurse we must not forget the role that each member has to play in long term condition management.
    Most of all we must listen to our patients identify what they need understand and map their journeys throughout the whole system and most of all identify any unmet needs.
    The voluntary sector can play an immense amount in ltc management and learn from others auch as the newham train a trainer approach.

    • Tony Walmsley says:

      Working with people experiencing long term chronic pain it becomes clear that earlier intervention and interconnected thinking and approaches delivering a clear and consistent message would hugely assist in the prevention and management of chronicity. The Biopsychosocial assessment model is a fundamental tenet of that approach and greater investment in making supportive and educational training available for a wider group of staff in these skills, including the cognitive-behavioural approach, would be a step in the right direction. This combined with greater multi disciplinary team investment in Pain management Programmes being made available within every geographical area, and the establishment of a National Service Framework (NSF) for Pain, especially Long Term Pain, would go someway towards dealing with a deeply expensive and affecting problem in so many araes of people’s lives. A closer linkage with the Disability assessment agenda and the DWP would also not go amiss to reduce the over medicalisation of the problem and provide more appropriate supportive care foa ll those in work and out of work looking to return.

      • Arj Subanandan says:

        The biopsychosocial model is important for mental health too. Too often the primary treatment in the long term is medication and psychosocial interventions are much rarer. Patients with long term conditions like schizophrenia suffer significant disability and distress which is not solved by medication. In fact studies show the long term use of medication actually contributes to reduced life expectancy. Unfortunately clinical guidelines still strongly favour biomedical solutions as does psychiatric training.

  263. E A Meecham says:

    People with long term conditions need information and support. They need to know how to access services, where to get reliable information and advice and know that there is someone available who has a good knowledge of their condition who they can contact. This is the role that a Specialist Nurse provides. A named health professional that can be contacted directly, sometimes just for reassurance, sometimes to sign post them to appropriate help and sometimes for direct support and/or intervention. A Specialist Nurse has the knowledge and skills related to the particular condition giving confidence to the person needing information/support. They are able, over time, to help someone come to terms with a devastating diagnosis (no less devastating for for not being terminal) and learn to take control of their lives again with knowledge and understanding. One of the most common comments I receive is how much it means to have our telephone number knowing that they can speak to someone they know and who has expert knowledge of their condition. A nurse is also the person’s advocate and can work across boundaries to ensure seamless care is offered. As Specialists Nurses we encourag self management through education and promotion of self efficacy, primarily in the person’s own interests but also to optimise health care services. Specialist Nurse posts are under threat in the current climate but should be seen as a priority in supporting people with long term conditions. I ask that the long term conditions strategy will promote the role of the Specialist Nurse.

  264. Gilian Broughton says:

    I was fit and healthy until 2009 when i suffered chemical injury caused by 2,4 D D iclorophenols that was being sprayed on a public footpath , I had no idea that this was an endocrine disrupter, Neuro toxin , cacogenic and cases Birth defects . My thyroid was further damged and i could no longer tollerate my regular thyroxine , i could not convert T4 into the active Hormone T3 that is essential for health . I am one of the 17% in UK that as this problem , I can no longer get treatment which cost approx £ 26 per month as Thyroxine the ONLY treatment offered at £1.26 per month . Why is this allowed to happen tens of thousands are left to suffer i have to pay for these medications and should be on the NHS the same as thyroxine . Also paying for B12 Injections for muscle fatuige as i know many cannott access this relatively Cheap medication , yet Drs are more than happy dish out antidepressants that cost £ 200 for 6 months doesnt make sense . Thyroid patients should have a chioce of medications not just thyroxine but T3 and NDT !!!

    • anon says:

      I have an overactive thyroid,they wont operate,i cant have the radoiiodine because of a medical condition so am on tablets, i too have to pay for prescriptions,including b12 injections,methotrexate injections plus all the other meds for various medical conditions.
      When you have LTC surely there should be more medical conditions exempt from charges.

  265. Colin Beevor says:

    The work of charities in supporting patients with long term condtions should not be under valued- their work supports all the principles mentioned in the documents around
    * People will be supported to stay healthy and avoid developing a long term condition, where possible.
    * People will have their conditions diagnosed early and quickly.
    Services will be joined up, and based around individuals’ biological, psychological and social needs.
    * People with long term conditions will be socially included, including succeeding in work and education.
    * People with long term conditions will be as independent as possible and in control of their lives (up to and including the end of life).
    * People with long term conditions will be supported to stay as well as

    The scoping and sourcing opinions from these charities needs to occur at all levels of health and social care- local, regional and national levels.

    The DOH has a responsibiity to ensure that the charities have accessible information to ensure that their own resources are fit for purpose and given direction.

    The Health Care teams should recieve training to ensure that they know how and who to engage with people with long term conditions in service design/ monitoring etc

    • Arj Subanandan says:

      I couldn’t agree more. Charities provide so much support and they need continued support from the NHS.

  266. Joanne Haws says:

    I’m afraid it often seems that much of routine care of people with long term conditions is something of a tick box exercise. Inadequate training and education leads to poor practice. Given that ‘we don’t know what we don’t know’ many healthcare professionals are unaware that their patients are being short-changed. Doing the routine tests is not enough. In order to support changing behaviours, adherence to medication and effective self management patients must be listened to and given individualised support – not told what to do. They are the ones living with the condition and I feel our role is to help them to manage it.

  267. Vicki says:

    Communication between social services and the nhs is next to none existant. Communication between service providers needs improving. I have litterally been stuck in bed for over 7 months now, due to lack of suitable housing, or services. I have four carers a day come to get me changed, Etc, and currently there is no chance of an improvement. Prisoners get more time out of there cells than i am able to access out of my bedroom. This for many is the reality of your current long term conditions policies.

  268. DW says:

    I am going to try and not rant but confess in advance to being very frustrated with LTC service provision in England! So I apologise if I go on! I have edited believe me!
    I have Ehlers- Danlos Syndrome and a host of ‘additional long term difficulties’ associated with it. I also work for a charity supporting people with LTC’s. Its about time the government started creating a strategy for assisting people with LTC’s in England; we are behind Scotland in many ways when it comes to this, maybe in not all ways admittedly.
    The vast majority of people who contact the charity I work with are incredibly frustrated at the lack of joined up care between various government departments including health and social care, welfare, housing and employment sectors . Historically there has always been an issue with cross agency working and nothing has worked so far to improve that! No cross- agency board meetings or steering groups appear to have solved this issue mainly due to the way funding is handed out separately to each department. Mix in the differences between central and local government and its just a mess.
    From our patients perspective there is a huge issue with the medical professionals who would appear to rather deal with the patients they can ‘cure’. I guess you cannot just blame the medical professionals, as it is down the service providers too but lets face it if medical professionals are not going to fight for patients with LTC’s then who is?
    The NHS is not set up to assist people with long term conditions whether it is physical / mental or emotional. A huge overhaul of training of our medical and health and social professionals needs to take place.It is common knowledge that a high percentage of those with on LTC are likely to have additional LTC’s.
    In our case, those of our members with an genetic connective tissue disorder, which is a very complex multi-systemic disorder, are equally likely to suffer depression and anxiety associated with poor support, years of medical dismissal and poorer health and socio-economic outcomes.
    The government has harped on for years about patients becoming experts in their own conditon yet this is not supported in practice and often those patients who do learn about their condition and how to best manage it are then accused of ‘going over the top’ or ‘attention-seeking’. We hear daily stories of how patients or parents are accused of having ‘munchausens’ or ‘munchausens by proxy’…and if we believed them all we would be reporting a huge epidemic of what is usually classed as a rare condition!
    It saddens me that after 20 years of working as a highly qualified and experienced mental health practitioner working through all the changes within the NHS and social care that ultimately the system is still paternalistic. Since I was retired on illhealth grounds due to my own EDS, I have seen nothing to prove that this isnt still the case.
    Medical professionals appear scared of or threatened by acknowledging that actually the patient may know best. There is nothing wrong with the patient knowing their condition..no-one can expert every GP or medical/health or social professional to know the ins and outs of every condition..but what is expected is that these professionals are always willing to learn when they need to. Its in fact an ongoing requirement to be able to practice. So I am being fair and saying I dont think that you can expect them to know it all but you can expect them to be willing to learn what their patients needs are and be willing to work in partnership with their patient and to be trained to recognise the problematic issues faced by people with LTC’s…despite the different conditions there are always the common factors. I also dont think it would hurt for the medical professionals and service providers in general to admit that they have got the current services so very, very wrong! It has to be wrong to punish people for having a LTC and that is how our members feel..they are aggreived and frustrated that the service providers and professionals are not listening and dont appear to want to.
    Patient support groups should be actively recruited to work with local service providers to develop services that best meet the needs of the patient. Often patient support groups will need to be ‘assisted’ in making these changes too. They may not have the confidence or the strategic knowledge needed to understand how to best work with what they see as professionals who dismiss them. This string empahsis on working with voluntary organisations and patient support groups should form an essential part of the development of LTC strategy too.
    The patient with a LTC doesnt just need an often overly lengthy wait for a diagnosis (56% of patients on our forum polled state that they take 10 years for a diagnosis!), they need services to take the time to provide education on their condition and time to work out how best to manage it. After years of fighting for a diagnosis many patients do fear being discharged off a list that they struggled to get on in the first place. With a better MDT led approach working WITH the patient not AT the patient , confidence will grow until both parties feel confident in terminating ongoing open episodes in the system. With the increased use of IT patients should be offered a variety of ways to maintain contact, whatever bests meets their needs.
    Adequate support and targeted services will help those of us with complex LTC’s developing additional problems; this will ultimately save the government the funds they are concerned with spending.
    In addition what is severely lacking in England is bespoke centres of excellence regarding the management of LTC’s…in our case EDS or HMS. Currently in England there are perhaps two specialist adult centres both based in London and both are hugely oversubscribed. There is no clinical pathways to even bridge gaps in the local services and just to compound it the specialist centres have difficulty getting local services to step up to the mark and provide the right support! A main concern is the loss of fantastic services, for an example; a highly respected globally recognised specialist in EDS or HMS retired in Leeds a couple of years ago. He had built up his clinical practice to a high standard, MDT professionals were trained to a high standard by him as well, yet when he retired the patients with EDS or HMS lost that service as the PCT saw no purpose in continuing his work. This has had a huge impact in the North of England and caused immense stress to his old patients and to new patients who cannot get a diagnosis without travelling to LOndon. The knock on effect has been very dramatic. And I suspect that this would have never happened if his work had been based on ‘acute conditions’!
    I have cut a lot of this out and I hope it doesnt appear too bitty!

  269. MH says:

    I went to a consultation meeting held 15thMay 2012. it mindblowing .
    the hospitals will be twinned and service will go. obviously thwy need to apply some basic common sense. it is the carer who do the NURSIG LONG TERM They should be choice first choice on aftercare.
    At the evening all tables given scenarios and were told to discuss and feedback via written report, how new changes should incorporate there diagnosis procedure to given treatment and then care afterwards.

    Somebody obviously has caught on that carers do have the best knowledge.

    The care for Mentally ill is appalling. Aftercare where is it my GP has none. go hometake the pills. there is no offer of further support at all.in 10 years of suffering a mental illnesses never had any thing. found info on the interent myself, good job i had commited suicide by them.

    The GP doesn’t currently communicate or give any leaflets, recommendations to visit a day centres, exercise.
    A mentally ill person is at risk of suicide and needs very high level of support and care initially and long term. If they are on a set programme of care straight away then it can be monitored.

    GP’s will be buying services, but why should they have the choice they should they consult others, pharmacists,carer patients. I don’t think they’ll bother. So I believe that if we are to be choice this choice then I will be very involved.
    The consultation process apparently will ensure that this decisions will be given to representatives of the public to discuss and the opportunity to vote.

    The aim is to consult and create immediately, a dialogue in the entire process. Patients can be involved, doctors, pharmacists. We were told to list those who we on our table felt was appropriate to on the our panel.

    Now for the ethnic groups i hope it will be in an appropriate language. language. , I want our languages, religious values, taken into consideration when opening new centres etc. This is a fantastic opportunity for us to ensure that for the we have all leaflets and websites available in the various languages.

    My Recommendation

    So therefore my personal recommendation is that every carer and patient be involved in communication process and with the support Indian Organisation or Temple etc and we hold regular communication meetings with them.
    We really cant neglect our sick people in the process. This is an opportunity for every person who serves their own community to have a voice in one of the largest decision that the UK has.

    Naturally Every Indian GP and Pharmacist knows the situation first hand so I hope that they will communicate with us and the patients and carers in the Community. it is for there benefit to get it right the first time!

    GP surgery would be larger centres, where you would get info, knowledge, more support and knowledge about your illnesses and where to go

  270. EA says:

    I suffered a brain haemorrhage nearly two years ago as a result of a craniotomy. I was in hospital for six months, five of which were in a Neuro rehab unit. The rehab was very good & helped me to regain some movement again in my left side. However once you are released from full time rehab you are basically left to fend for yourself.

    I went from intensive daily Physio and Occupational therapy to 20 mins a week Physio of which was entirely and completely pointless. They went through the motions, begrudgingly, for 5-6 months then I was left with no Physio anymore at all, ever again. Which I still badly need. They told me that as I’d been going for nearly six months I had to stop as they could only see to those who come straight out of hospital. The only other option is to pay for private Physio which is far too expensive & out of reach.

    If you have a ‘quick fix’ problem then it’s fine – in other words, if your ailment is fixable within a few months your ok. If however like me you have a long term disability that still needs (real & proper) Physio input and unfortunately doesn’t just go away it actually can get worse without the input – then its tough luck. It’s very frustrating: noone chooses to have a long term problem, why should you not get the services you do badly need just because it’s not a ‘new’ ailment or because it isn’t quickly fixable?

  271. Bharat says:

    I am very happy to hear that a lot of people have talked about long term illnesses but it would be even better if all the doctors and consultant make a regular commitment to their patients example- listening to the patients, listening to the carers view or even ask the carer about the cared one.

    My wife has a back problem since 1996. We used to run a business and then all a a sudden our lives came to a stand still. Whilst my wife was working in the shop a sudden noise came from her and then she couldn’t stand up. We saw the GP next day and the doctor said it was just has just pulled a muscle. With surviver pains in her back after a week we went to see the GP again and he sent us to the hospital to see the orthopedic they took some examination the consultant come up with the conclusion that my wife has gone mental and that she is imagining things and so he referred my wife to a psychiatrist. My wife wasn’t treated for her illness nor was she given medicine and the psychiatric report came back normal.
    What the doctors and consultants need to understand where the patient is coming from instead of calling them names because these kinds of comments have made me wife’s condition worse by putting words into her head. I feel just because they think they are well educated that they feel the need to bluff patients and say what ever they like thinking the patient is going to trust doctors in listening to what they say.

    I think there should be more communications between the patient and the carer because doctors and consultants are qualified in their own way the carer is there 24/7 so just to make everyones lives better communication is vital.
    Social Services also needs to understand when making a assessment because they always tend to follow doctors and consultants notes and they also start to make their own judgments but what they are not seeing is the suffering and the pain the families goes through. Making a strategy plan is good but understanding or to see or to implement is totally different thing because up to know there hasn’t been a understanding in cultural needs.

    Governments making all these cuts isn’t helping the people long time illnesses because none of their family members are in these situation, they can afford to pay for their services, the thing that is nice is no consultants or doctors will argue because of their position what ever they say they will take on-board without any arguments, but for normal public there is no support they just go through loads of hurdles before they get any answers…

  272. SM says:

    Firstly I feel that my words could fall on hard ground as the issue being addressed here is one that has dragged on for years with no visible step change in how people with long term conditions are treated from a health or social care perspective. The notion of putting people in control of their health and care is all well and good but government policy (as aleady mentioned) does not support this as cost cutting efficiencies undermine this ambition. I am a carer by default because my wife is disabled. She/we have a constant battle trying to navigate a fragmented health service that seems preoccupied with focusing on the short-term fix to specific health related issues rather than assessing people within the context of their lives and the factors that may impact adversly on their condition. The notion of prevention and independent living does not hold up when health and social care interventions are based on the minimum required to address the immeadiate health issue. The point Dr Ian O’Connell makes is a really valid point about the wider aspects of a persons life that contributes directly to their condition. It strikes me that in this time of efficiency savings and restructuring of services based around the patient journey the emphasis given to managing a patients condition is massively ambitious and unrealistic if additional resources are not pumped in to providing tailored care. My wife needs a proper biomechanical assessment and some longer term physiotherapy to help her manage her condition. In addition, she needs longer term social care support to ensure that she is not risking further complications to her condition by trying to trying to live independently with inadequate support. This aspect of long term condition management is not integrated with the health assessment and is often carried out in a social context by people who are not appropriately qualified or experienced to make life changing judgements about what a person needs to stay healthy and safe. Social care is a huge issue at the moment and many local authorities are visciously cutting back on this in an effort to save money. In our case, this has left us in a position where we have had funding for social care withdrawn and now we are having to cope with an increased risk to health and wellbeing because my wife is now forced to do more things for herself and as a result is having more health issues and a quality of life that is only heading downhill. I can only do my best but as we are expected to pay for all our social care and some of the health care ourselves this has put us in a position of having to make some very difficult decisions. I had to give up work but this has impacted on our finances and now I will have to return to work or drive our savings low enough to qualify for income support. We also have two young children and taken as a whole, we are facing a situation where a whole family could be taken to the breadline because of a long term condition whose management requires a holistic approach to health and social care management. The inequalitites of the system as it is at the moment means there are proportionally more losers than winners and if we are to have a society that values the individual and promotes better life chances and quality of life then the government needs to make this happen as a wider reform of health and social care and not chop it up into its component parts otherwise it is no better than useless. If it is not resolved then we will have an ever increasing proportion of an ageing (and impoverished) population with longterm health and social care issues that will be wholly dependent on the state when they no longer have the ability to pay when their finances have been used up trying to sustain a quality of life they can no longer afford.

  273. Sharon says:

    I have had Fibromyalgia for one and a half years now, and have been told by the specialist that this will not go away. I suffer every day with this illness but have been told by the jobcentere that i will be fit for work in a year and have been put on work focused group. I have chronic pain from head to toe every day which means i cannot do what i used too, severe tiredness which makes me sleepy, sometimes i can sleep, sometimes i cant. The pain in my body is like a burning stabbing sore feeling. Im on a lot of medication which only touches the surface and my children and mother have to help me around the house etc… This illness should be classed as a disability (it is in America). I have been refused DLA 3 times now. If it wasnt for my children i would opt out of this world. Its about time the govenment took notice of this illness!

  274. Nick Pahl says:

    Nearly all of British Acupuncture Council member treatment is for long-term conditions. We have 3,100 members across the UK and provide over 2,25million treatments a year.

    Members would like to provide further suport to people living with a long term condition within the NHS, as part of personal budgets or as part of services in care and residential homes. We would like to join health and well-being boards to help tackle the problems people face and join up local services.

    Surveys of normal clinical practice show that many patients have had their condition for a long time – e.g. at the NHS Gateway clinic in London: half of patients more than 5 years duration (ref Paterson et al 2009).

    A recent back pain trial (Thomas et al 2006) showed better (absolute and comparative) outcomes for traditional acupuncture after 2 years than at the end of treatment (or at 1 year). This suggests patients with traditional acupuncture as a treatment are helped to develop their own healing and self-support capabilities long-term. NICE guidance recommends the use of acupuncture for lower back pain.

    Many of these posts have been referencing palliative care. Acupuncture has been found to work well as adjunctive and integrated therapy – not just for specific symptoms and side effects of orthodox treatments but also for complex symptom mixes and overall wellbeing.

    With regard to Stroke:
    a) A recent Canadian systematic review of acupuncture in post-stroke rehab has positive findings (Wu et al 2010);
    b) Progress made during treatment phase may be maintained 6 months later (Guo 2007);… post-stroke acupuncture patients found to have increased independence and are better able to look after themselves at home (Hopwood and Lewith 2005)

    Acupuncture used within the NHS for people with severe long-term illness can stimulate an adaptive effect and hence improve their quality of life (Foell 2012).

    There are numerous further studies related to long term conditions – available at http://www.acupuncture.org.uk

    The British Acupuncture Council would welcome being part of a future steering group or work in this area.

  275. Rosemary Hurtley says:

    How local services can work together to make life better for people with long term conditions:

    A person centred standard framework for domiciliary care consisting of key themes and sub-themes that clients, their family carers and staff highlighted as measures they use to judge how good care services are – (Box 2 below – 360 Standard Framework Domiciliary Care – Key Themes) . One key component in achieving these is the quality of collaboration and co-ordinated services at the interface. The ability of the agency to deliver person centred care for people who need continuing support in their homes to live independently is closely bound to the quality of these relationships and how they can work together to ensure the client centred outcomes are at the centre of care.

    Box 1: What the 360 Standard Framework is

    • A quality improvement and practice development framework that helps managers and staff in all health and social care settings, and at all levels of organisation, to measure quality from the perspective of the person using services, their families and carers
    • A diagnostic assessment framework that shows health and social care organisations how to establish and maintain positive relationship centred cultures in which the person using services experiences good care and support, family members have confidence in the quality of care, and staff find the work fulfilling
    • Four sets of inter-related outcome standards – for the user of services, their close family and staff exemplifying relationship activated care, and one set focussed on the essential dynamic of management enabling their adoption – that underpin all service and practice standards

    Box 2: The 360 Standard Framework Domiciliary Care Key themes
    The Client:
    1. Receiving personal care and support
    2. Continuity and consistency of care
    3. Standards of personal care and support
    4. Relationships and communications
    5. Concerns and complaints
    1. Finding the work fulfilling
    2. Management support to do the job
    3. Equipped with the knowledge and skills to do the job
    4. Feeling valued as a staff member
    Family carer:
    1. Involvement in decisions about the user of services’ care and support
    2. Consistency and continuity of support to the family carer
    3. Standards of care and support to the user of services
    4. Relationships and communications
    5. Concerns and complaints

    1. Management and leadership style open, facilitative and developmental at all levels
    2. Pivotal leadership role in managing change involving the person using services, family carers and staff
    3. Integration of quality improvement activity with operational and business plans and staff development programmes
    4. Staff support through continuous coaching, supervision, mentoring, team building to embed relationship activated person centred care in the culture of the organisation.
    5. Approving priorities, resources and structures, and evaluating outcomes

    Using the 360 SF DOM themes and sub-themes, the assessment results identified issues and challenges for the Agency in meeting the requirements of the Standard. Some were internal to the agency whilst others were associated with interagency and inter-professional co-operation, lines of communication, organisation and co-ordination of services, and questions relating to the authority and responsibility of agency staff to act on the service user’s behalf. Most resonated with issues cited in DH health and social policy, CQC and other reports as factors that inhibit the achievement of person centred outcomes for clients and their family carers.

    Key Practice improvement suggestions in summary

    • Improve the communication systems between agencies to enable co-ordination to ensure vulnerable adults receive flexible person centred services
    • Improve clarification of responsibilities between commissioner and provider for clients to help them to experience a quality of person centred integrated care
    • Include training for workforce in a socio-health integrated model of gerontology practice and understanding chronic conditions and their effect on the individual to meet increasingly complex needs across all services in the community
    • Improve inter-professional collaboration in practice and socio-health knowledge, skills including domiciliary staff including learning in specialist communication and re-ablement as defined responsibilities.
    • The responsible professions need to adopt adult learning and evaluative teaching methods with on the job support for domiciliary staff delivering care to people in their own homes with complex needs
    • Case management system to ensure continuity and monitoring of assessments and care plans
    • Improve efficiency of operational procedures between social services departments, primary care services and liaisons with NHS services
    • Challenge structural ageism within commissioning and establish conditions under which authorities would be calpable for letting contracts, particularly in relation to the adequacy of funding required for the agency to fulfil specific functions within the contract
    • Commissioning to enable person centred cultures within a whole-person multi-disciplinary approach to prevent service delivery in silos
    These extracts come from original article by Pat Duff OBE and Rosemary Hurtley 2012 CHALLENGES FACING DOMICILIARY CARE AGENCIES DELIVERING PERSON CENTRED CARE transform@360fwd.com

  276. Lynda Cain says:

    As someone who has suffered pain and fatigue for nigh on 30 years and only just received a diagnosis as to what was causing all my health problems the lack of co-ordination of services and lack of knowledge in the GP circuit is what has troubled me most. It has taken 30 years of being told it is either in my mind, an effect of stress, a virus (unanimously used when they can’t be bothered to find out what might be causing the problems because GPs have to pay for services), or just middle age before I read an article and diagnosed myself. I have to research the article, provide the testing requirements and seek out the UK’s most eminent person on EDS in order to get a diagnosis. I had to pay for a private consultation as I was told by my GP that as I was already extremely ill and unable to work, what would a diagnosis do to help (errr access to the correct treatment if there is any!!! comes to mind). I also having found out EDS is a genetic condition and having two boys who already suffered pain and discomfort had to again pay to go private in order to access treatment as the GPs stated ” that I was medicalising my children). I also had to self diagnose my childs Aspergers and ADHD as my gut feelings were taken into account. I did not want my children to suffer the same way I have. The result in not getting a diagnosis is that preventative treatment has not been provided for me resulting in my now suffering chronic fatigue, chronic pain needing narcotic drugs, and also suffering early onset osteoarthritis in my spine, pelvis and hips meaning I can barely walk and need a wheelchair outside of the house. The provision of equipment is also scarce, I have had to provide my own wheelchair as I was deemed to not qualify for a voucher here as my chair was not needed in my house. They were quite happy for me to be housebound however and more than a burden on people and services around me.

    There needs to be lots more co-ordination, referring people to other departments should not rely on budgets if they need it they should get it. My GP service is about to be in charge of the local budget under the new guidelines and I dread to think if I will ever get any help I will need in the future. I just don’t bother anymore because they won’t help. There should be regional specialist treatment centres for long term patients where they can access continuous physio, hydrotherapy, appliances, assessments, and recurring appointments with specialists instead of being signed off when they announce there is nothing more they can do for you. There might not be now, but we don’t know what the future holds for medicine, something might come along in 6 months or our medication may need changing etc…. we need to see these people, and there need to be more of the.

    Please think long and hard about what changes you make, it must be an improvement not just an exercise that we get.

  277. lou says:

    M.E. / C.F.S

    we are left to suffer alone as there is so little input from professionals.
    i can’t find the words to describe how bad it is to have M.E.
    even my G.P. does not seem to understand.
    i feel abandoned completely alone with this disability. the constant pain and horrendous fatigue is life destroying.

    i often feel so depressed i feel suicidal. because i have to suffer alone.

    i personally need some kind of medical input and understanding. i need someone to care.

    i need someone to listen and take my condition seriously. i need a G.P. who’s face doesn’t drop when i have an appointment, who doesn’t look at me with disdain and makes me feel like i am wasting their time. and who tells me to go home and eat oatcakes at bedtime for chronic serious insomnia.

    people with M.E. need a decent dedicated service, based around their needs. home visits, emotional support, compassion.

    • Amy says:

      I couldn’t agree more. I have pretty much had a diagnosis of M.E (i.e. them saying “It’s probably this, here’s some paperwork) as well as some unexplained deficiencies from my GP. I had the symptoms during my time at university and this completely affected being able to attend lectures. I had to write down my symptoms before they were listened to and for a while I was fobbed off with suggestions such as stress, depression, glandular fever and IBS. After going through a few temporary jobs I am now on jobseekers and although the advisors are aware of my condition, there’s basically nothing they can do. I have not yet been referred for any therapy such as CBT or graded exercise.

  278. sharon says:

    I understand that recently there has been a drive to expand adult mental health liaison service to adults with medical problems to improve their emotional health and subsequently help them to live a more fulfilling life. Whilst this is a great initiative I do not understand why paediatric services are not getting financial support to improve the emotional health of their patients.
    i work in an under resourced liaison service in central london where paediatric services have expanded but the psychological services have remained minimal and always at threat of losing their funding. improving these paediatric mental health services you would find reduced admissions lengths, reduced psychological consequences of long term physical illnesses, reduced need for treatments and improved welfare and reduced burden on the family.
    Services such as national trauma units are set up but little thought and no resources are given to the emotional needs of these patients who are likely to have long term emotional consequences such as post traumatic stress disorder of the victim and their family, depression and direct consequences of the injury such as head injury with psychological sequelae such as personality change, adhd etc.

  279. Dean says:

    As someone with epilepsy, HHT AVM, chronic lower back pain, constant headaches & sleep apnoea why is it that the government employ a company to ask questions with predetermined answers and template phrases.

    The HHT AVM has being there since birth and epilepsy since the age of 4 I always had problems at school due to being tired on a morning because of a fit during the night, after many years without a fit, that I knew about but always been tired so concentration was, and still is always a problem, I had a fit while awake and was also informed after a CT scan of the AVM and the first visit to a specialist was told they wouldn’t touch it as it was too dangerous in their opinion, at this time I was a carer so I believe this had a huge impact on the decision.

    before that decision I injured my back and have had several epidural injections to help with the chronic pain, the last one had no effect and an x-ray revealed why, the specialist said nothing could be done so why bother the GP if nothing can be done this also affects my sleep pattern, I often sleep for short periods then wake in severe pain so most of my time is spent taking short period of sleep through the day & night.

    When having to concentrate on things the headaches are that bad that I will give up doing the task until the severity of the pain has eased and if when going to do the task again the severe headache returns then that task will not be done as I feel stressed because the headache affects my ability to do the task.

    The sleep apnoea is a real problem as not only does that affect the sleep quality but the other conditions also do the same so 18 hours or more a day spent sleeping means getting anything done is a serious problem. Hospital and doctors appointments are missed or not made because I am asleep or because I know that unless someone is there to take me I will forget and miss the appointment.

    When those who would like to say I am fit for work are asked how I can overcome these problems they don’t seem to have an answer, but say I am fit for work

  280. Ann Freeman says:

    Medication is important to stabilize the florid symptoms…but why does ‘treatment’ stop there? People who loose limbs are helped to walk again and use artificial arms so why are people with severe mental illness not given similar consideration to be able to get into the swim of life again?

    Antipsychotic medication is sedating, causes extreme weight gain that can lead to other ailments, social functioning and memory problems need help and symptoms of the illness that medication doesn’t touch can be helped…but aren’t in our mental health ‘service’.

    The findings of Rethink Mental Illness’ ‘Schizophrenia Commission’ that are due out later this year must be listened to and acted upon. Listen to presentations and evidence on the website http://www.rethink.org Evidence of neglect and deterioration of physical health was harrowing to listen to.

  281. Phil Burton says:

    I live with three long term conditions, Asthma, Hypothyroidism, and I underwent open heart surgery in 2002 to have my Aortic valve replaced, so I suppose I have a cardiology condition as well. I work full time and receive no support from the state and to be honest I don’t think I need any. I believe I keep well and exercise regularly. I would saythat though I have to take different medications my conditions do not affect my daily life too seriously.

    However I believe there are key issues which have made living with long term conditions more difficult and do cause frustration. These are:

    Inflexibilty of the health service – because I work full time and commute each day a total of three hours it is very difficult to attend for tests during working hours. I have to go for a Thyroid blood test next week, for example, but the service can only run Monday to Friday from 08:30 to 17:00, this means I have to take time out of work.

    Lack of knowledge or interest from GPs – shortly after my heart operation I was diagnosed with Hypothyroidism. My GP thought that rather than put me straight on Thyroxene I should try Kelp tablets which might stimulate my Thyroid. Unfortunately I take Warfarin and the effects of Kelp (chock full of vitamin K) apparently works as an antidote for Warfarin, this could have been dangerous and could have been easily avoided witha bit of research.

    Information – Though I am the person who manages my long term conditions I am not trusted to have inflormation even when I ask for it directly, e.g. the side effects of the various drugs I take, or how one of my medicines might react with the other.

    These may seem a little trivial but they can cause frustration. Generally the actual care I have received has been good but it seems to be based very much on a clinical approach rather that a preventative one. I think those who have long term conditions should be approached as experts in their field as much as the clinicians, the may not have the clinical knowledge but they have to manage their conditions and the bodies over a sustained period.

  282. brett says:

    long term care?? WHAT LONG TERM CARE ??? – i have chronic arthritis – yet was recently put on different pain killers by my doc “to save £100 per year ” – i am partially sighted following a stroke some years back and socially isolated as mobility is a problem – but CARE ?? – what care do I get – NONE !! – no one comes near me – the docs do not bother and treat me like i am a nusence – social services are a JOKE – 5 months to get an assessment – and they had no idea of my real needs

    i could be here dead for months and no one would bother ( i have no family or friends ) like another poor woman 3 streets away – dead for 3 years and no one bothered

    so long term care ?? – just someone actually giving a frigg if i am still alive would be a start – the odd phone call or visit from someone ?? – is this too much to ask ?? – its all right consulting on CARE if you HAVE some one TO care about you in the first place

    just another wast of time this IMO so you can say “we consulted widly ” and do little

    ( from one of the “invisable people ” in society that NO ONE cares about

  283. Rob Beeston says:

    i am hiv positive.

    three things spring to mind:

    re the nature of long term conditions: even when symptoms are not catastrophic every day, that doesn’t mean their effects don’t accumulate catastrophically over time.

    re welfare and incapacity: it’s not just doing the job, it’s getting there, getting back and having the energy at the end of the day to perform basic vital tasks, like eating.

    re representations of illness and disability: the increasingly opinionated general public is often misinformed about the nature of long term conditions. dwp does nothing to counter this by repeatedly releasing unqualified statistics. regardless of what dwp’s representatives claim about their motives, more care should be taken to ensure that what is released is not so easily (wilfully?) prone to misinterpretation.

  284. Tim Dunton says:

    Having worked on both sides of the fence as it were, I am concerned about the lack of resources available to those experiencing more severe mental health conditions.

    As from DoH online consultation in Oct/Nov 2010. I enquired of Andrew Lansley how Department of Health could guarantee people with MH Diagnosis fair access to Direct Payments and Personal Budgets. (see twitter feed from @NetSouthGlos)

    Also under Social Welfare Reform Bill I see very little evidence of issues being addressed within the Personal Independence Payment and also Universal Credit and where things are weighted specifically for people with more physical needs etc.

    There is a big push from government to give people more control and choice over the services they receive and also be involved in consultation and feedback processes. Local mental health services are struggling to provide adequate care etc.

    Also moving people over disability benefits to ESA etc is having a huge affect on peoples well being. In my own circumstances having failed a Work Capability assessment I am left in limbo between JSA and ESA, without money , my health then spirals down. Hidden cost and bottom line are that vulnerable people are choosing suicide, rather than going through months and months of hoop jumping, bureaucracy and form filling. (reported 1,100 deaths last year)


  285. amy says:

    i have ehlers-danlos syndrome and postural orthostatic tachycardia.

    while there are many things that could be improved upon the biggest one for me would be a diffierent physio system for people with long term conditions than people with injuries

    you need continuity with physio and often more sessions than people with injuries, which the system seems designed for.

    i’ve had over 10 physio referals in about 4 years. i got short bursts of lots of appointments with different staff then got dropped when it would have been more suitable for me to go once a month/every two months over a longer period of time. long term conditions need a long term approch.

  286. Dr Ian O'Connell says:

    When I started training in medicine in 1980, I expected to make a full assessment of a patient and to do whatever I could to help them. This would apply whether the need was technical, such as adjusting a dose of thyroxine or insulin, educational, or emotional.
    I became aware that people with diabetes would lose twenty years of life expectancy if diagnosed at the age of ten, and lesser amounts if a shorter period of their life was blighted by the condition. I also knew that they did not have to lose life years if this condition was well-managed, and felt a sense of outrage that patients would lose out when they could be saved.
    This challenge is still with us, and we should strive like hell to get the best possible outcome for our fellow human beings, not just in terms of years of life, but in how much enjoyment they can out of those years.
    I look after people with diabetes, thyroid problems, and a myriad of rarer conditions. Many have to deal with lower mood as a result of complications of their conditions, and many could have avoided complications if they had been able to manage their own condition better.
    I often find that patients have come to expect that they will only have their technical issues addressed, and yet their scatty blood sugars merely reflect chaos in their lives from emotional distress. Thus if I just try to fiddle the sugars I am completely missing the point. By following up the same patients for a long period of time, I know when they are not being themselves, and can help people to see how to avoid complications. Sometimes people brighten up when they realise that it is normal to resent the hell out of your chronic condition, and then accept that since it is now part of themselves that they might as well be in charge of it.
    Current reforms try to send all follow-up to GPs. I offer to discharge stable patients, but find that a significant proportion want to maintain a link to the clinic and I would like it if their choice could be respected. For cost reasons, commissioners may effectively remove that option;politicians often say that patient choice is paramount, but then put policies in place that remove it.
    If people understand their condition and have ready access to a troubleshooting resource when things are not going smoothly, they will make effective use of their medication in a way that is cost-effective for the country. If we can do a good job for the whole person (not just their thyroid or their blood sugars) then we keep people happy and healthy, productive both as people and in an economic sense. If they become emotionally and physically debilitated then they suffer, but so do their families and the businesses that lose them.
    I would make a plea that we aim
    1)to have robust education for the patient to support them in developing expertise in managing their own condition
    2)to have them maintain a link to a specialist nurse for troubleshooting problems that arise
    3)that the nurse has backup from a consultant-led team
    4)that there be a facility for updating the education for the patient – a lot has changed in diabetes over the last couple of decades, so if they want to re-enter the diabetes ‘academy’ they experience at diagnosis, this should be funded.
    5)that we stop using business and activity models to resource care delivery. Our nurses help a lot of people by telephone, but income depends on bums on seats in clinics. I give advice to GPs, but my employer gets no money unless a patient comes to clinic. I email patients and feel this helps them, but again it generates no income so in due course, we may have fewer doctors and nurses.
    This approach is not meant to displace the role of primary care, but enhance it. If annual reviews are just a data-gathering exercise, then it is less useful to the patient than if it leads to an exchange of information and a re-evaluation of how to approach the condition for the future. Involving primary care in the provision of regular education in a venue with specialist staff will inherently foster links between the two while skilling up primary care and enhancing the secondary care understanding of that which can be achieved by motivated and knowledgeable primary care practitioners.
    Patients want to be seen by people who know enough to help them, and by people who care.

    • MH says:

      my recommendations are to listen to the carers consult them they have the best knowledge and someitmes the common sense, and have a much better angle for solutions as they di this everyday of their lives.

    • Charlotte Clare says:

      I would like to support all Dr O’Connell’s comments whole-heartedly and would like to add a few more points.
      1. From a palliative care perspective, the end of life phase of LTC needs to improve. There is still a reluctance for healthcare staff, in particular, doctors to discuss the fact that a LTC may well ultimately shorten some-one’s life. Most doctors I speak to feel that they cannot find the right time to talk about this aspect of the disease. It seems to me that many doctors lack the skills to raise the topic in a sensitive manner. Communication skills training is mandatory for all helathcare professinals working with cancer patients but those working with LTC patients are not compelled to undergo such trainng. In my ideal world, all doctors should undergo mandatory communication skills training and regular updates should be linked in to revalidation for consultants/GPs. Once patients know their likely outcome, it empowers them (and their family) to make meanngful choices about their care.
      2. To maximise the care of some-one with a LTC, their carer is crucial. I meet people caring for some-one 24/7 who ask me how I do my job.My job is nothing compared ot theirs. I go home every night and week-end and live my own life. Carers get no breaks. Regular respite in an environment acceptable to the carer is essential to keep them healthy in body and spirit. How about respite in your own home? Moving very debilitated people to an alien environment with new carers can be very distressing. Many carers