Last chance to have your say on the long term conditions strategy

This is the last week to comment on what should be covered by the cross-government long term conditions strategy. The deadline for comments is 15 June.

We are drafting the strategy at the moment and plan to publish it towards the end of this year. The strategy will be a high level vision, describing how we want to see improvements in the lives of people with long term conditions. It will apply to England only.

We would like to hear from people with long term conditions, carers, health professionals, commissioners, local authorities and the voluntary sector. People’s experiences, both positive and negative, and their ideas about what could be done differently, are vital to make the strategy as relevant as possible.

The content of the strategy will not be confined to health issues. It will also cover other aspects of people’s lives that can be affected by long term conditions and bring together departments across central government to sign up to shared aims.

Have your say.


7 Responses to Last chance to have your say on the long term conditions strategy

  1. LCB says:

    I have had a rare,complex, long term condition for approximately the last 35 years. Until recently, my care within the NHS has been excellent. Provision for the condition is provided under specialist commissioning.
    My consultant care continues to be excellent under specialist commissioning ( which being narrowly defined only covers some of my needs) but there has been a recent adverse change in the system whereby, whilst the disease is complex, it does not follow at set pattern in each patient, it requires treatment by several specialities and different health care providers, the system currently does not allow my consultant to refer me to appropriate experts to ensure the best patient outcome. Evidence shows that the best patient outcome comes from appropriate treatment being given as quickly as possible.
    I have recently had 3 examples of very poor care with resulting damage to long term outcomes as the result of my local GP seeking to determine my treatment and not refering me to experts in my disease (as recommended by my consultant who is the acknowledged expert). Distrubingly. I have also been advised by the local PCT that it is the GP and not the acknowledged expert who decides my care.
    I would request that when looking at care for long term conditions a simplistic approach of local care is not agreed. Local health care providers, including GPs and local consultants cannot expect to be experts in all fields and if those with rare, complex diseases are required to receive local care rather than specialist care just because their disease is defined as chronic, this will result such people being denied access to the most appropriate care with likely poor health provision, poor health outcomes and possibly poor life expectancy and life chances unless they are the lucky few who can afford to go privately (remembering that health insurance is not availalbe to those with chronic health conditions).

  2. Jonatrhan Gardam says:

    Joint Response by the Association of Directors of Adult Social Services (ADASS) and the Local Government Association (LGA) to the Department of Health engagement on the draft Long Term Conditions Strategy


    The Association of Directors of Adult Social Services (ADASS) represents Directors of Adult Social Services in Local Authorities in England. As well as having statutory responsibilities for the commissioning and provision of social care, ADASS members often also share a number of responsibilities for the commissioning and provision of housing, leisure, library, culture, arts and community services within their Councils.

    The Local Government Association’s (LGA) mission is to support, promote and improve local government. We work with councils to achieve our shared vision for local government by focusing our efforts where we can have real impact, being bold and ambitious, and supporting councils to make a difference, deliver and be trusted.

    Key Points:
    We welcome the opportunity to contribute to the early development of the Long Term Conditions Strategy. The response to long term conditions must be fully inclusive across the whole spectrum of conditions and as such is central to the overall reforms of health and social care , and with long term conditions policy transcending NHS, Public Health, Adult Social Care and the wider care sector, this proposed Strategy can provide a focus for integrated commissioning and service provision based around improving individual health and wellbeing outcomes and increasing personalisation and individual responsibility. This is vital to ensure that a social model of disability is adopted, as opposed to the medical model, which does not fully take into account the wider wellbeing needs of individuals.

    It will be important that the development of this strategy is closely aligned to the overall health and social care reforms and included within the widely anticipated White Paper, and importantly, that the implications of developing and delivering the Strategy are fully costed and reflected in the funding settlement for adult social care (and the wider health economy). Adult social care is experiencing unparallel demographic pressures upon its budgets (particularly driven by more peoiple experiencing long term conditions) against a context of austerity measures and welfare reforms, and whilst reform is welcomed and embraced, the urgency for a sustainable long-term funding solution is paramount in taking these reforms forward – we can all agree structures, principles and policies but without proper sustainable funding they cannot be properly effective.

    We welcome the draft “shared goals” of the Strategy (see below). These provide a very useful commentary on how services and support can be planned and commissioned to create joined-up integrated approaches that addresses improved individual outcomes and supports greater choice and responsibility. It is noted that these goals are already being applied across local services particularly through increased personalisation (both in social care and increasingly in the NHS), and integrated approaches to reablement and early intervention and prevention (including predictive modelling and risk stratification and the extended use of telehealth and telecare).
    • People will be supported to stay healthy and avoid developing a ling term condition, where possible.
    • People will have their conditions diagnosed early and quickly.
    • Services will be joined up and based around individuals’ biological, psychological & 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 their end of life).
    • People with long term conditions will be supported to stay as well as possible.

    Councils are well placed and proactive in coordinating and addressing activities that support and enhance improved health and wellbeing outcomes for people with long term conditions. Councils have a broad portfolio of (personalised) universal services and support that focus upon tackling health inequalities, improving access for the most margainalised groups and encouraging increased use of community settings for care and treatment, whilst also supporting greater independence and choice of individuals and carers self managing their conditions, particularly as a results of good quality, timely and accessible information, advice and guidance. Councils also recognises the significance of accessibility to decent and warm housing for people with long term conditions and the impact this plays upon their health and wellbeing, and councils are working in partnership to improve access and availability to such housing. Finally, it is noted that Personal Health Budgets will also have the potential to empower people with long term conditions alongside Personal Budgets in adult social care. It is considered important that all these elements are reflected in the Strategy.

    The Department of Health’s own workforce strategy, ‘Working Together to Put People First’, and the joint work between Skills for Care and Skills for Health on developing the Common Core Principles for Self Care, all support the achievement all of the six shared goals.

    In terms of greater cohesion and integration across health and social care, we note the importance of linking the delivery of the Long Term Conditions Strategy with the Integrated Outcomes Framework. We are working closely with the DH in the development of this framework and it is suggested that the Long Term Conditions Strategy includes a number of shared outcome indicators that will help align commissioning and service planning. Alongside the alignment of shared outcomes, we note the importance of inclusion of long term conditions outcomes / measures within the JSNAs (and NHS Operating Plan) and the corresponding local Joint Health and Wellbeing Strategies. These strategies drive integration at the front line, bringing together commissioning focus across health and social care, to be overseen by the Health and Wellbeing Boards. It will also be important that the national commissioning strategies of the NHS Commissioning Board (and its sub-national structure) and Public Health England align fully to the Long Term Conditions Strategy and the focus of these local Joint Health and Wellbeing Strategies.

    This alignment with the Strategy should also be extended to the current implementation of the DH Mental Health Strategy and the emerging work of the Dementia Challenge. Both represent significant areas of long term conditions “activity”.

    Finally we note the continued existence of the National Service Framework (NSF) for Long Term Conditions and the NSF for Neurological Conditions, both of which have already set out priorities and principles relating to how the health and social care sector responds to improving outcomes for people with long term conditions. It will be important that the proposed Long Term Conditions Strategy builds upon these frameworks and the momentuem that they have generated so far.

  3. Jean says:

    As a person with a long term condition, I found frustating to have to attend several health specialists to care for me. I’m on long term treatment with side effects.I’m under a consultant for this but when side effects become chronic, I have to attend my Gp for monitoring and treatment of those side effects. Which means double time off work to attend different appointments, wait at different pharmacies, different places to have lab tests……
    Why can’t my consultant deal with all of this instead? (I know actually, because of split fundings in the NHS!). This is not efficient neither for me or for doubling the time for consultation with healthcare professionals.

  4. Felicia says:

    Pulmonary arterial hypertension is an incurable disease. We start children on medication to improve their symptoms and quality of life. Sometimes we see a patient and they might look good from the out side, but it does not always reflect the true extent of their disease (as seen on echocardiography or MRI), which can progress rapidly.

    Recently we found a lot of parents / children losing their disability allowance. We are not sure how the grading system works. But this has put a lot of stress on parents that is already facing a stressful future with their sick child. I feel parents should be given the benefit of the doubt and when they are requesting continuing support or re-requesting support once it has been withdrawn.

    I would like for the people that make decisions about disability allowance to have a better understanding of the condition.

  5. Pat Cull says:

    I am noe disdaabled myself with age and arthritis, and anaccident to my spine. The role of carer si undervalued, and the rehabilitatio services , particularly for those with severe and enduring mental illness are not supplied. All these people are under a great deal of stress, and the quality of life is diminshed. It has long been promised that mental illness would be a priority(The last government!) Yet Mental Illness concerns all. Remembering that each individual is unique there is a vast amount of work to be done to restore their residual abilities as more children from broken homes are showing the signs of difficulty early, parents are expected to work, and the number of unwanted children who have to be taken into care is absolutely disgusting in a country we claim to be civilised. Please do something about it. especially for the inidgenous population. I am not a racist, but the number of illegal immigrants is not acceptable.Please ring fence Great Britain.

  6. Joanne Cooper says:

    From my clinical practice and research into understanding the experiences of people with Inflammatory Bowel Disease, I would recommend that the following key aspects are addressed:
    1. Increasing employer awareness and so that individuals are able to maintain work stability.
    2. Increased training for General practice staff on the ‘not so familiar’ conditions such as IBD, which are commonly attributed wrongly to other conditions.
    3. Better use of IT to support options for clinic appointments online, which could be done from home/work.
    4. Review of criteria for receiving ‘free’ prescriptions for people with less common conditions, but which have significant impact and require regular and extensive forms of treatment.

  7. Annette Edwards says:

    I think it is important to realise that long term conditions covers a multiple of diagnoses, and they will have very differing issues, concerns, prognoses and needs. However, it is important that Specialist Palliative Care advice and support be available if appropriate and must be mentioned in the strategy – as a palliative care consultant I work very closely with my GP and hospital colleagues in providing medical care, and as a team we support many patients with these conditions. The strategy must also cover the importance of advance care planning, communication and sharing of information between all involved with permission of the patient, and how best to achieve excellence in palliative and end of life care. Support at home is vital, as is joined up working with all professionals involved.