2. Increased personalisation and choice

The needs and circumstances of every person receiving care and support are unique to them. Whether a person funds their own care or receives a personal budget we want people to have genuine choice and control over the services they buy and receive.  Read more about personalisation and choice…

What do you think?

a. How could we change cultures, attitudes and behaviour among the social care workforce to ensure the benefits of personal budgets, including direct payments, are made available to everyone in receipt of community based social care? Are there particular client groups missing out on opportunities at the moment?
b. What support or information do people need to become informed users and consumers of care, including brokerage services? How could people be helped to choose the service they want, which meets their needs and is safe too? How could better information be made available for people supported by public funds as well as those funding their own care?
c. How could the principles of greater personalisation be applied to people in residential care? Should this include, as the Law Commission recommends, direct payments being extended to people (supported by the state) living in residential accommodation? What are the opportunities, challenges and risks around this?
d. How could better progress be made in achieving a truly personalised approach which places outcomes that matter to people, their families and carers at its heart? What are the barriers? Who has responsibility and what needs to change, including on the legislative front?

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55 Responses to 2. Increased personalisation and choice

  1. I really believe that a person centered approach is needed in all types of care setting and that therapeutic activities need to be taken more seriously, In homes currently there are only guidelines on what activities need to be provided and very little in the way of training and support for activity providers, it is so much better for individuals to have some sort of activity provision for their well-being.

    • I agree with you entirely. I took both my parents through to end of life, which in both cases involved a care home. In the case of my mother, who had plenty of function and capability left, this was not encouraged and in fact many of the promised extra-mural activities did not materialise. Managing someone with a predictable and sedentary way of life is all too easy. My research makes it clear that many people and their famiies would like to see residential care homes actively working with residents to regain or sustain their independence.

    • Maria Shaw says:

      I agree with Tracey we need more training on how to provide good quality training on how best to provide activities for the people that we support. Many people who are supported are supported in residential situations are being just that supported. I get very frustrated by trying to find and do age appropriate activities for the people that I support. I am also frustrated at attitudes of some of the staff towards the people we support who have profound learning disabilities I want to do so much with the people that I support but I need the experience and the training in-order for me to be able to do this. I really do not feel good about putting a person in front of a tv or a radio and I do not think that this is fulfilling their lives. We do take them out shopping or for meals out but we are limited when it comes to transport, and drivers on shift. I want more form my job I want to feel full filled one thing that I do feel and that is that I do not feel valued by the company that I work for. We have not had a pay rise for 3 years. We do not even get a thank you at Christmas time we get nothing.

  2. Judith Brown says:

    Responsibility for establishing what is necessary rests squarely on the Government. I would like to see legislation enacted to protect vulnerable people in the same way, and under the same headings, as the Children Act. Yes, you will always get some inadequate and un-caring people who enter care, until you make caring a wellpaid career which precludes those people even entering the profession. In the meantime, we need to say, as society, that the sort of things that happened at Winterbourne are criminal and will be punished.

    • Tom Cooper says:

      Assault as shown on the BBC Panorama programme regarding Winterbourne View is already a crime and no doubt we will be hearing of prosecutions in due course.

      • Jeremy Labram says:

        My first instinct when I saw the evidence of how sadistically LD customers were being treated was to hold the provider and its management to account. This was a complete scandal and I really do wonder how a provider in this position could survive the reputational damage this must have caused them.
        If it is a provider’s management issue, expecting ‘government’, CQC or whoever, to root out this type of malpractice locally when it could re-start the moment their back is turned is not likely to be a successful. The priority is that whosoever is commissioning these services in large amounts should be ensuring that their customers are getting what the commissioner is paying for. In a ‘personal budgets world’ this requires a little more thinking through as the commissioner appears to be just one person, but the principle can be still made to apply to good effect.

  3. Kevin says:

    I have a great interest in personilization, an analysis of London, its results are found at http://benefits.tcell.org.uk/forums/personnel-budgets-direct-payment-london-borough-foi-request and are of similiar contents by London Councils http://www.londoncouncils.gov.uk/services/datasharelondon/stats/LSDS/default.htm .

    Other sites such as Community Care, the Small Place, Mental Elf and Scoop also look into personilizationas well as http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_128368.pdf
    and
    http://www.pssru.ac.uk/publications.php , http://www.scie.org.uk/ and http://www.in-control.org.uk/ are some of the national programmes funded by HM Government.

  4. Tam Harrison says:

    Personalisation is a good idea, however I haven’t seen the diversity of services developing that enables people to choose between options (the choice is to go or not go), and the development of a resource of people willing to be personal assistants seems to be struggling, possibly becuase when potential PAs are looking for work they need a decent number of hours a week to make ends meet, but possibly the PA work builds up initially as a few hours here and there. Transport and accessible activities in the community are also an issue, not merely mobility access but access for people who may say or do unsual things due to the nature of their mental health condition, memory loss etc. At present we seem to have asystem where we can pay through personalisation or Direct Payments, but the activities, transport and and social acceptance isn’t there at the level it is needed. Tehre has eben talk of stimulating the market for a long time, but it doesn’t really seem to be happening yet.

  5. Kevin says:

    Given the news item by Community Care Limited uptake of personal budgets in Scottish pilot areas and

    Just 150 new personal budget arrangements were set up in three Scottish self-directed support pilot sites over the past two years despite “significant investment from the Scottish government”, a study has found.

    The report into the three test areas – Dumfries & Galloway, Glasgow and Highland – found that while self-directed support did work well for those with learning disabilities, significant time and investment would be required for self-directed support to take off across the country and for all groups.

    One issue cited by the report was that self-directed support was set up in parallel to existing systems of allocating support to people, creating the impression that it was distinct from direct payments, leading to limited appeal and creating the danger of duplication and confusion.
    “While this strategy worked well for the test sites in relation to supporting the small numbers of service users and staff involved with new systems, it may have limited the extent of systemic change,” said the report.

    Implementation of personalisation has been slow in Scotland. Last year, the Scottish government pledged to make self-directed support central to social care. However in many areas of Scotland direct payments are perceived to be failing to deliver choice, flexibility or control, while self-directed support has been implemented inconsistently and in many areas had not enlisted service user and carer organisation input.

    The three pilots, which ran from January 2009 to March 2011, were tasked by the Scottish government to address themes of leadership and training; cutting ‘red tape’; and the need to provide up-front investment to set up self-directed support systems. The report found leadership in all three sites was critical, but that all three experienced an increase in bureaucracy linked with redesigning systems for assessment and resource allocation.

    The study also found that groups other than those with learning disabilities, such as those with mental health problems, from black or minority ethnic groups, older people, those with addictions or homeless people saw no improved access to self-directed support.

    The report added: “Clearly involvement of service user and carer organisations and investment in the necessary support infrastructures are essential as well as continued availability of funding for the care packages themselves.”

    Related articles

    Personalisation in Scotland

    http://www.communitycare.co.uk/Articles/23/09/2011/117504/limited-uptake-of-personal-budgets-in-scottish-pilot-areas.htm

    Are we in a similiar position in the UK, I suggest YES.

    • Jeremy Labram says:

      I think there may be confusion between SDS / Personalisation and Personal Budgets. In my view the priority is to introduce a practical way of conducting person centred assessments and support plans. This delivers the most benefit for customers. Assuming the customer is FAB eligible then who administers the funds from which the support plan is paid is a secondary, albeit important consideration.
      If we were to agree on this then take up of personal budgets is not a good indicator of progress. How many people getting person centred assessments and reviews would be much better, followed by how many customers are getting their outcomes met by the agreed support plans. Finally we need to understand how much less the delivery of customers’ outcomes is costing compared to the past input based care plans.
      In the work we’ve been doing, this has now all been designed and is being implemented successfully and the savings are coming through. I’m sure we are not alone and there are other instances of similar progress.

  6. Jill says:

    Not everyone want strangers entering their home, there are people who wish to care for their loved one in their own familiar home setting. I think families who wish to care for a terminally ill direct family member at home for example one suffering cancer or in the final stages of dementia, then I think carers in these extreme instances should have the same working entitlement to those of pregnant women. If pregnant one can attend doctor appointments without loss of pay or holiday & have maternity leave then have the opportunity to return to work. However a family carer who is caring for a loved one terminal or with a degenerative condition most often has to use holiday or have unpaid leave or even have to cancel consultant appointments. Most often the carer is forced to give up their career to look after a loved one at home; the carer does not have the opportunity to return to work & becomes a casualty of unemployment. I think such carers should have palliative leave entitlement similar to that of maternity leave and maternity pay. Then have the same opportunity to return to work.

    • Dan says:

      The concept of strangers entering the home is the flaw at the heart of most traditional domiciliary care. As was highlighted by the IPPR Report, consistency of care, matching of carers to the elderly and introductions prior to the first visit are all ways of ensuring that the carer should be a friend rather than a stranger.

      In order for personalisation to be truly effective the elderly need to be at the centre of the thought process around care provision. Many approach care with the financial implications at the fore, others see the elderly as units which have to be dealt with logistically. A true person-centred approach should mean that the individual needs of the cared for come first. How can anyone approach the funding or logistics of care unless they first understand what care is needed? To personalise care we need to stop assuming that we know what the elderly need and start asking.

      • Jeremy Labram says:

        This is quite right, but isn’t that what person centred planning does? It gets to what outcomes a customer really does want and then devises a support plan to help the customer achieve those outcomes.

    • Jeremy Labram says:

      I think this is a significant consideration which SDS and the personal budget can help with, allowing carers and relatives to be employed as ‘Personal Assistants.
      There may need to be distinction made between the support plans for what looks like a near end of life scenario and the onset of a longer term degenerative disease. As I understand it person centred planning can cope with both of these and ensure that a customer or their carer can direct the delivery of support to meet their desired outcomes.

  7. Mandale says:

    Does personlisation work for everyone? In my experience many people come into social services in crisis and don’t have the time, knowledge or motivation to get involved in SDS or in choosing a provider for themselves.

    Most people simply want responsive, reliable and flexible services delivered by caring and professional workers. They don’t necessarily want choice.

    Councils are able to make efficiencies by using large block contracts and if the procured services meet the criteria above, then this should be the way forward. Micro-procurement by individuals will tend to move spot prices upwards.

    Additionally, a smaller number of providers makes it easier to monitor, quality assure and deal with safeguarding issues

    Is the express train taking us towards personalisation doomed to hit the buffers at some point when it becomes unaffordable or even unsafe?

    • Tom Cooper says:

      I agree with your analysis. A large proportion of people who need care services do not want the hassle involved in hiring and firing providers and running their own care packages. Also it is obvious that there will never be enough public money set aside to implement these schemes properly. Real choice is not about being able to select from a range of low cost and therefore probably low grade providers but lies in having access to help when needed from care staff who are reliable and know what they are doing. Why should a service user care who the provider is as long the service is good? I am tempted to suggest that the personal budget idea was designed with the aim of offloading responsibility from social services onto the vulnerable person -not really very caring.

      • Jeremy Labram says:

        I nearly agree with all of this. However the customer must be at the centre of the decision making, which is a combination of choice, and control over what choices are made. The process from assessing needs, defining outcomes, devising a support plan and working out what agencies (in the broadest sense of the word) will deliver it all gives opportunities for choice and control to be exerted by the customer in the light of ‘sound advice’; and yes, personal preference when it comes to individual care workers, maybe. If the agreed outcomes do imply that the support plan will be hard work, then the level of cooperation between the customer and the people they will be working with does need to be good.

    • Jeremy Labram says:

      Choice is often associated with control, quite wisely in my view. There is no point whatsoever in bamboozling customers and their families with a multitude of choices and not providing guidance as to how to choose. It is less about providing a wide range of choices and more about the customer remaining in control of what happens to them. When I was working with an adult social services department on just this topic they coined the term ‘sound advice’ which was really helpful. Isn’t that what all of us seek before making the big decisions we take in life? The lack of this was exactly the difficulty my sister and I had when we suddenly got confronted with a crisis. As my sister said, we were shocked to find we were like ‘babes in the woods’. As self-funders we were then under pressure to make quick decisions which would have enormous personal implications for our mother as well as for her wealth. We did not know how to weigh up the options or how to judge one care home from another. We needed sound advice.
      I firmly agree that large buyers, working closely with and for their customers, are in by the best place to know which providers are providing best value in terms of great outcomes and lowest cost. Why would I not take their sound advice? I think the provision of sound advice is a top priority. Where it comes from may be more debatable dependent upon who is commissioning and performance-managing the service.

  8. Andrew says:

    “The road to hell is paved with good intentions”. We created a system designed to help, support and protect, but which has ended up disempowering people and safeguarding the professional over and above the disabled person (please forgive the catch-all phrase). It’s left us with easy, safe and one-size-fits-all solutions being doled out by care managers and local authorities (LA’s). It’s also created a complete absence of customer service for disabled people (except through being lucky enough to be placed in a ‘good’ service) which no-one would accept in any other area of their lives. And often, it’s made people believe that they are incapable of choosing what support they want, when they wouldn’t bat an eyelid at choosing a builder or a hairdresser.

    In order to make these changes happen we must remind professionals that not all disabled people are ‘vulnerable’, that most people can be trusted to make choices and take decisions and that SDS is not an ‘either or’, but a sliding scale of change. In other words, people can choose how much they want to do for themselves to keep control, and how much they want someone else to do and then we plan for that.

    Personalisation is not about ignoring those that are especially vulnerable and those that need a great deal of support. But as it stands, the system forces us to assume that everyone is like that before we’ve even met them and disempowers more than it empowers.

    So…

    We need to stop thinking that ‘services’ are the answer to everything and take a more holistic view of people

    We need to remind ‘the system’ that it is not and should not be in control of most people’s lives.

    The system must not focus only on ‘solutions’ that have measurable results. The small stuff matters and good forward planning pre-empts many crises. But because you cannot measure a negative (i.e. how many crises were avoided), such ‘services’ are rarely commissioned. It’s a false economy to wait for a crisis to happen before the system contributes.

    We need to acknowledge that some professionals will resist these changes because it takes away their power, because they are scared of being directly accountable to service users and because they fear their jobs might be at risk. It is perhaps unfortunate that in many LA’s, it is the commissioner who is the lead on Personalisation… a person who often has no social care background and a person whose job is perhaps most at risk from the changes if disabled people will become self-commissioners. Turkeys and Christmas, anyone…?

    We must make sure that traditional provider services are aware that their customers are just that – customers. Nothing actually changes if disabled people don’t have an individual contract with those services and if they cannot actually take their money elsewhere. Yet this principle is too often forgotten as the council target is met when a support plan is approved, NOT when it is actually implemented. But it is only in the implementation that real change actually happens.

    We must remember that there is more to life than the Dept of Health. Disabled people are first and foremost citizens in their own right and not everything they do is related to or ruled by their impairments.

    And finally real choice must be offered on a level playing field. This means independent advice, guidance and support brokerage being a genuine offer and the LA accepting that they are not always the best person for the job. As it stands, LA’s are reacting to The Cuts by withdrawing funding and pulling everything in-house, the precise opposite of what they are supposed to be doing and what their customers would like them to do.

    The system persists in putting its own existence as a priority above and beyond the people it is supposed to serve. This must be turned around, with legislation if necessary.

    • Jeremy Labram says:

      There is a lot in what you have listed above. At its most fundamental social care is about giving people back their lives, not delivering services. In technical terms, it is about helping customers successfully meeting their desired outcomes. The most poignant statement I have ever heard was from a reablement worker, who said that before she got trained to reable people they basically did the opposite – disabled people who were fundamentally able. From this observation and a lot of other work we came to the conclusion that reablement was an ethos that needed instilling into every person involved in social care, whether that was a professional or a customer, their carer or their family and friends. It is something that needs to in the front of every body’s mind every second of the social care day. No one should be written off – everyone should have desired outcomes which ameliorate their lives in some way and support plans which have a high probability of helping a customer achieve them.

  9. Eunice Wormald says:

    As a recently disabled person I find it hard to meet people who are not neccessarily disabled. I do not feel it helps to only interact with only stroke people.
    When I lived in Norfolk the criteria was money, not needs, so tho I could not wash or dress myself I could get no care. luckily my neighbour helped me.
    Finding your own care did not give me more choice finding my own care was a nightmare as no own wanted the job. If my neighbour had not helped goodness knows what would have happened to me.
    I moved back to Nuneaton to be near my family.
    Social Services put me on to the books of carers they use in the private sector and I get as much or as little help as I want.
    There is no way I would want to go back to trying to find someone myself. I was offered the choice.
    I am more independent now but am down as high risk by Warwick C.C.

    • Jeremy Labram says:

      This is a very instructive story for me – particularly as I have not yet suffered the type of crisis described. You needed to have control over the process which arrived at what was best for you with help to make the choices you needed to make along the way. As the story unfolds this began to happen and you are now leading a more independent life and are able to take responsibility for and accept the risk this may cause you. This seems to be a high priority for you.

  10. Jenny Hurst says:

    user-involvement, support networks, a system that is unburocratic and decent funding are the key aspects for a personalised service. As a disabled person I have been using Direct Payments since the mid-nineties – I employ Personal Assistants rather than having agency carers or living in residential care. I work in the field as a personal budget co-ordinator in a user-led disabled persons charity – but the majority of peopl on my books use traditional methods of meeting their needs – especially agency care.

    So why aren’t more people trying some of the more innovative ways of meeting needs – well there is a real lack of meaningful service user input – we are not consulted from the start but after strategies and policies have already gone through several draft stages and a final draft is reached,. There is not much training provided to help people change their mindset – we are taliking Social services and users themselves – professionals are still paternalistic, and users still think professionals know best. People don’t have a clear idea of what is possible, and more importantly, exactly what their responsibilities are – before I recieved my direct payment I went through a 6-weeks course to help me understand possibilities and responsibilities! There is so much burocracy – we are now told that we have to use specific support planning documents – so much for someone being able to do a support plan in the way that suits the user – and there are now restictions on what is an “appropriate” use of a PB, essentially limiting people to care (agency or private) or certain bits of equipment – regardless of whether the more innovative uses put forward are meeting the need in the best way for the individual!

    As for funding, we have seen tightening elegibility criteria around the country and resource allocation systems that are designed to give the impression that they are taking account of social needs, whereas the only categories that translate into funding are personal and practical care – resulting in people only being able to afford “survival care”. As one of the other respondee has pointed out – it is very difficult to get good quality care when you can only offer a pittance in wages!

    And do I need to point out the decision to replace night assistance to use the toilet with the provision of incontinence pads? How can this possibly be seen as personalisation?

    These are all trouble spots that need to be addressed in order to really provide the opportunity for service users to design assistance that is really is personalised!

    The role of current, sucessful users of personalised care services is vital. Provision of peer support groups, service user “champions” and trainers (for both services users and professional) and service user input at the begining of any strategic decision will inevitably steer the service in the way that users choose and will highlight user issues that might be missed by professions who are on the other end of social care provision. (of course many of the members of my PB user groupl would love to be involved but their care packages aren’t generous enough as accessing the community / education / work score practically nothing on the RAS!)

    Independent support service are essential – a support sevice provided by the same organisation that has to deal with funding restriction, tightening of elegibility criteria and paternalistic practice represent a conflict of interests – we have already seen that council-funded support services told that they cannot “advocate” for the service user!

    There are no user groups that wouldn’t benefit from personalisation, however there are challenges. People can’t be set up to fail, which often happens where people don’t fully understand the system, and where the system is set up with no flexibility or where everyone has to fit the system, rather than the system fitting the individual. Additionally, development of marketplace needs additional investment, and thought concerning the support that can be given to smakk organisation providing a service and moving off a bllock contract, particularly charities who don’t necessarily have the business acumen of commercial providers.

    • Jeremy Labram says:

      In the work we have done we have confronted many of these issues and we believe we have workable answers to all of them. It has mainly been a question of working with customers as well as a having a clear understanding of how to incentivise the right behaviours in everybody involved. For example, in our model the registered providers do not necessarily carry out all the care and support – they coordinate the delivery of the support plan, and where possible they bring in activities from low cost / no cost sources. This takes a very carefully constructed specification and performance framework to encourage providers to work this way but it is quite possible to do.

  11. Bridget says:

    Increased personalisation, if it really means an acknowledgement that one size does NOT fit all, is great. But if it is being done mainly in order to reduce public service responsibilities and costs, it won’t work. And it must be remembered that some individuals want to have services provided for them and do not want to find services themselves or become employers of personal assistants. And the safeguarding implications of unregulated personal assistance are enormous.

    • Jeremy Labram says:

      Personalisation has to do what it says on the tin – the outcomes and the support plan have to belong to the person. Anything else is a corruption of the concept. How the person administers the plan also is an aspect of personalization – some will want to be completely in control and become an employer; others will want all that done for them. The key thing is that the person is given the best chance to meet their outcomes. Almost by definition if their desired outcomes are met, they will be in a better place than where they are now and should require less support to live, so there should be savings. That’s good for the person, the funder, and anyone else being funded from the same overall pot, as there is then a little more to go round.

  12. David says:

    I think that many of the principles of personalisation are great but I have one big concern – accountability.

    Where a person uses their money to pay for their own PAs/carers then they have some control, but where they use a residential home, having this home private not council means that it’s not subject to Freedom of Information requests because of commercial sensitivity, so it’s very difficult to find out if there’s anything amiss, and they don’t have the same DED that local authorities have.

    So give people control of their budgets but legislate for more openness by care providers because some (obviously not all) people needing care are vulnerable and some are on the edge of being able to manage their affairs.

    Also as a carer, I am all too aware that my father is very vulnerable to what I pressurise him to do with his money. I know that there are some accounting safeguards, but I think that there need to be some sort of spot-checks on care provided other than in residential homes.

    • Jeremy Labram says:

      All registered care homes are subject to CQC inspection and are therefore accountable to them too, are they not, so do you have some idea of their past standards? If you are a regular visitor to your cared-for person then you also will see what is going on day to day. As a serious influence on the cared-for person, who ultimately is the customer of the care home you will have means to express a complaint. I’ve just looked at the procedure for my mother’s previous care home and it is there all right, as is a policy for staff whistle-blowing. I was also pleased to see that a person centered planning approach is now part of their philosophy too.

      • Jeremy Labram says:

        In my vision there is room for even greater accountability. If a council appoints a limited and highly monitored range of providers who undertake to work in a person centred way to help customers meet their desired outcomes, they are in an excellent position to see how each doing in relation to the others. This puts them in a very strong place to provide sound advice as to who the best of their providers are and where their respective strengths and weaknesses lie. This can work in advising those customers they directly fund as well as those who have to fund themselves.

  13. Ray Chandler says:

    An important but badly neglected requirement for personalisation is the achievement of equal rights. The fundamental principle should be that while people are entitled to the services and help they need to live independently, they should enjoy the same rights to choice, privacy and self-determination as any other citizens.

    This means that for people willing and able to use direct payments to choose and run their own care support, they should be allowed to do so without interference from the council. There should be a fair, transparent and consistent resource allocation system (RAS) to determine the personal budget, and then people should have the right (equal to any other citizen) to run their lives without control or veto by the council.

    This requires an end to the unacceptable current practice by councils of using support plans as additional budgeting tools – with people having to comply with highly intrusive interference and an insistence that their detailed support plan is approved by the council before their personal budget is released.

    Without a radical reform to this part of the personal budget process, ‘personalisation’ is just an admin device which perpetuates the dark ages of control, discrimination and paternalism.

    • Jeremy Labram says:

      This is a tough one. You are asserting the need for equal rights for all. Is there not a corresponding need for personal responsibility too, to use a personal budget wisely?

      If you accept the former but not the latter then a council seeking reassurance on how the budget is spent would be seen as an intrusion.

      My position as a tax payer (and without social care needs luckily) is that I want my money spent effectively – not just handed out.

      My position as an observer of how personal budgets can work is that their recipients and their cases are less likely to come under formal and regular review. If a person’s outcomes are being met, all well and good. If not, what then?

  14. Mercia Phillips says:

    There are many aspects of personalisation and co production which would be useful tools for helping vunerable people or people with limited finance…or both; to function on an equal level. As with most things the controlling aspect is finances with respects to the council’s involvement in releasing a direct payment or personal budget. There are also overlooked choices as a person becomes more vunerable and requires NHS involvement and assesments. Somerset PCT release a personal budget while N Somerset does not which means one group of people are controlled by the budget and via a succession of people from the ones who hold the purse strings at government level to the nurse or carer who come to look after a sick person who’s ‘time slot’ can run out leaving someone more vunerable than before. This can and does occur with domicilliary and home care from the PCT and social services provisions.
    On the other hand, or perhaps level would be a more appropriate word…..the other group of people have finances in the bank after care and consideration is given to assess the requirements. A certain amount of control of finances and the direction of them is required as this is a world where, sadly, even the vunerable are capable of cheating the system using valuable money that could make life easier for the genuine needy.

    • Jeremy Labram says:

      I agree with what you are saying, and its implications. he principal implication is that there is a bit of a post-code lottery over what type of service you are going to get, depending upon which bit of Somerset, for example, you live in.
      I am failing to see what material local differences there can be between someone living in Weston super Mare and Burnham on Sea.
      There must be a need for a bit more consistency. This is going to take a vision which is capable of being understood and held by all. Is this not what the DH is there to provide?

  15. Jenny C says:

    I beileve this works but it is mixed up with bad deilvery and councils who think it is right to restrict what the person should 1 have in there support plan and 2 spend there Personal Budget on. Choice should not be restricted unless it is not legal. People’s lives have changed for the better because someone listened to the person and made a resonable adjustment for the person so the person could do a job and leave the day centre I think that is an achievement and actully personalisation can give people increased confidence and change the person’s life. Please no one tell me personalisation does not work. As it is giving the person time to get to know you and the same with them and actully see what the person can do. I say anyone can do anything if given the right support.

    • Jeremy Labram says:

      I think you are advocating a virtually complete ‘hands off’ approach to how a personal budget is spent. As I’ve said further up the page, as a tax-payer I would want to feel reassured that the money would never be squandered. That ressurance could be provided by a pretty light touch of control from the budget issuer.

      There is a far deeper issue however, which the current process does not address well at all – that of changing needs. Particularly where a person improves. If their outcomes have been met by their personalised support plan then the process should not stop there. They should be reviewed again, at which points their needs may be found to be less. In which case their PB should reduce too and a new support plan constructed.

  16. Nick Pahl says:

    he British Acupuncture Council agrees that patients with such social care needs should be able to choose their preferred care, based on a care plan tailored to their individual needs. The British Acupuncture Council welcomes this opportunity for patient empowerment.

    The British Acupuncture believes acupuncture has an important role to play in meeting the needs of people with social care needs and agrees with a “hands off approach”. The British Acupuncture Council can provide information to patients and carers to assist with their research as to how acupuncture can play its part in meeting their care plan.

    • Jeremy Labram says:

      I have little to add as I’m not an expert at all on ‘health’ or medical procedures. Were something similar part of a social care support plan that I was signing this off on behalf of my local authority, then I would like to understand and feel convinced about the part it played in delivering the customer’s desired outcomes and when it would be reviewed.

  17. michele poole says:

    I care for my mum who has dementia and the personalisation /choice issue is a non starter for me. I neither have the time or the energy to take this on…hiring and firing, police checks, financial management,all would have to be done by me as my mother is incapable….and I dont have power of attorney, my sisters do and they live miles away…so…why are they making such a deal of this? Simply to save money and put the burden of care onto the carers, AGAIN….
    Who would monitor all these personal budgets to ensure safety for all involved? I can see huge sums of cash disappearing!

    • Jeremy Labram says:

      Michele,

      My Dad and my Mum both died with dementia. My mum cared for my Dad, who had always made the big family / business decisions. As a carer for my Dad she was not in a position to take on this employer role either. My job as a remote son was to ‘care for the carer’ but she was very vulnerable to rip off merchants – were they mobile phone cold callers or rogue builders. Her social worker reduced to her tears of self doubt and inadequacy. What she needed more than anything else was reassurance and company – not being told she was doing it all wrong.

      As I understand it, personalisation starts from what the person really needs and wants, rather than what the professional thinks at the outset. Had this been applied then I think the outcomes would have been so much better all round and probably have cost less.

      Personalisation should not be another version of ‘one size fits all’ – it is tailored to the person. In your case this would involve helping you to make the decisions needed to arrive at what you think is best for your mother and you. One small part of that is how the money for that is administered. For example you don’t have to take a personal budget – you just have to be offered one.

  18. carol says:

    Yesterday I watched the Channel 4 programme “The Queen’s Cousins”. There was a shot of a day room for adults with learning difficulties from about 40 years ago. Lots of people were sitting silently passive around the room. Today I visited a care home for elderly people (just old people), they were all sitting silently passive around the sides of the room. Haven’t we learnt that conversation and interaction are routes to well being and engagement with life?

    • Jeremy Labram says:

      My experience is much the same – even in a very expensive care home in Harrogate. My sister and I were continually disappointed at the misleading expectations set and never met – trips out, daily activities – there were always reasons why they did not take place but no accountability for not delivering.

      Having seen a reablement approach working for people still in the community I really think this needs to apply to people who could, with time, attention and the will, get a bit or a lot better. A residential care home can so easily become a death trap literally. What happened to the convalescent home – another relic from the sixties? I just looked it up on Google. Chilton House which has been going from this time does seem to be doing the right type of thing.

      “Though it’s very good to be back home, I certainly miss Chilton House, you have certainly succeeded in what you set out to achieve.”
      Mr M, Bury St Edmonds

      “I feel so different from when I first arrived and can now begin to pick up the threads at home with much more confidence.”
      Mrs L, Tring

      Getting care homes to work in this way is not easy as their business model encourages them to hang on to people rather than getting them well enough to leave. Nonetheless it is possible, and this is what I’m devoting my professional lfe to doing at the moment.

  19. Jeremy Labram says:

    CUSTOMER CHOICE AND CONTROL

    I’ve been reading all the comments with great interest and replying where I thought I had something to add. As the process is nearing its end here’s my contribution.

    I advise local authorities on this subject and have actively worked on one ground breaking project which is now going live after 18 months of work. We have developed a way to give choice and control to the supported person over their lives whilst still securing economies of scale from the provider base. The person has nine opportunities to exercise choice and control over what would happen to them after presenting their needs to Social Services. At each point they are presented with sound advice about what they might do to make choosing as easy as possible. Here are the main principles for the customer and the Council.

    Customer
    1. Don’t bamboozle the customer with too many choices at a time
    2. Use person centred planning to arrive at the right final decisions
    3. Provide ‘sound advice’ along the way, but the customer has the final say
    4. The offer works for self funders as well as council funded customers

    Council
    1. Retain some influence over where the business goes
    2. Reward providers who deliver the best outcomes for the least cost

  20. Dorothy Runnicles says:

    As an 86 year old who became decrept enough to qualify for a self funded tiny care package 3 years ago, , I have been a user of commercial and” not for profit” care systems in 2 Local Authority areas- I also work as a community activist and advocate to improve the services- comparing the rhetoric with the reality of the services by various means. The complacency and the lack of service progress by so many peo[ple who have earnt their living in the big business of old age has been astounding and can only be explained by our culturaL norm of ageism, endemic in our society.
    My suggestion in order to make progress is to consistently involve users of services in all systems- ie inspections, (I am an Expert bt Experience with Age U>K,) ,;in action-research( as happens with some oranisations witgh whom I work. eg ( Joseph Rowntree Foundation; the NTDI research/ social change programmes .
    We have colluded with ageist behaviour just as we did with sexism and racism. We need to understand how it manifests itself( one example given above in the day centre). Thereafter we need a cultural change which requires a willingness to pursue action and for organisations to provide incentives for this to happen. Soial changes of this dimension do not happen easily, and will not happen unless we involve in all systems those who are directly involved. Would you organise a change system or strategy against sexism without women?

    • Jeremy Labram says:

      Any thought of working in isolation from the people who are at the centre of social care is completely against the point of personalisation which has been so much to the fore over the last two years. So I can only agree. Wiltshire council espouse “customer centricity” as the means to do this, and having worked with them using these tecvhniques it does seem to work.

  21. mary ryan says:

    I hope I am posting a question for tomorrow’s open forum which I cant take part in.
    I am concerned that the drive towards personalisation, which sounds a good idea in theory, puts those with mental ill health at particular risk.Many of us with enduring and severe mental ill health have times when our judgement is poor and struggle to manage even the simplest of tasks. Taking care of a budget would be impossible in such circumstances and we would be an easy target for manipulation and expoloitation.
    I hope that any changes will allow adequate protection and monitoring to ensure that the most vulnearble are not disadvantaged by a well intentioned but inappropriate attempt to give them greater control and autonomy.

    • Jeremy Labram says:

      I think this is a really well made point. Pushing the onus of responsibility for looking after oneself is all well and good if this does not exacerbate the need for care. We’ve had to consider this carefully in our particular setting and come the the following view.

      The personal budget needs to stay, but the most important point is who looks after it. For some people takiing that as a series of direct payments and then them administering how they are spent will be highly desirable. For many others they would prefer for the budget to be looked after by a trusted organisation, the most obvious example being the local authority, so in these circumstances there is effectvely no change from now.

      • Johanna says:

        2) PersonalisationHow could we give people more cchioe so that they can choose the type of care that is best for them? This should be achieved by consulting both potential and existing service users such as myself about what type of care, help and support they want and need and what is best for us. I have never felt as though what I need or want has been taken into account by the people who actually make the decisions e.g. about who is given funding initiatives such as the Supporting People contract. Instead, I have always felt that I have just been a victim of circumstances and been forced to accept whatever package of care and support council officials decide someone like myself needs. From my own experience I seriously doubt exactly how much they do know and understand about what individuals on the Autistic Spectrum need, so how can they possibly know who to give the contract to? I very strongly believe that people with autism such as myself should be able to specify who they want to provide them with their support since they are the people who are actually receiving the support and it is the quality of their lives that is being affected by the quality of support that they receive. As I understand it, the current proposal is that individuals can choose the type of care that is best for them. However I believe that the reality of the situation is that individuals such as myself can only really have a cchioe if they are given the right amount of money to be able to purchase the support that they both want and need from their chosen provider. Even if it is expensive, if it is the best placed provider to deliver the care and support they need, that should be their cchioe. Otherwise, people are being forced to accept the support they can afford to buy regardless of their own needs and wants. As stated before, I would much rather pay more money and know that I would receive a much higher quality service that I know really would be able to meet my wants and needs even if it meant that I got fewer support hours for my money than to pay less money to a much cheaper provider knowing that I would get a much lower quality service but be able to purchase more support hours for my money. There are currently two main problems with personalisation as far as people such as myself are concerned:1.It is not very good value for money because services would no longer be being bought in bulk as individuals may not want and / or need the same type/s of help and support.2.Some individuals receive direct payment so that they can arrange their own care, but I would have problems with receiving a direct payment.This would essentially make me someone’s employer and I definitely do not want or need the extra additional responsibility because it would add to my anxiety levels.I am not against personalisation if it means that people such as myself can have the level of cchioe and control required to enable them to buy in services for themselves and if it gives them the power about which services they want and need to use that are currently being provided by local authorities – this would be a very good idea. What I am against is ideas such as this which are not very good value for money and which would ultimately make life even more stressful than it already is for individuals on the autism spectrum, whose anxiety is already higher than that of other people without this diagnosis.

  22. Natasha Muirhead says:

    2) Personalisation
    How could we give people more choice so that they can choose the type of care that is best for them?
    This should be achieved by consulting both potential and existing service users such as myself about what type of care, help and support they want and need and what is best for us. I have never felt as though what I need or want has been taken into account by the people who actually make the decisions e.g. about who is given funding initiatives such as the Supporting People contract. Instead, I have always felt that I have just been a victim of circumstances and been forced to accept whatever package of care and support council officials decide someone like myself needs. From my own experience I seriously doubt exactly how much they do know and understand about what individuals on the Autistic Spectrum need, so how can they possibly know who to give the contract to? I very strongly believe that people with autism such as myself should be able to specify who they want to provide them with their support since they are the people who are actually receiving the support and it is the quality of their lives that is being affected by the quality of support that they receive. As I understand it, the current proposal is that individuals can choose the type of care that is best for them. However I believe that the reality of the situation is that individuals such as myself can only really have a choice if they are given the right amount of money to be able to purchase the support that they both want and need from their chosen provider. Even if it is expensive, if it is the best placed provider to deliver the care and support they need, that should be their choice. Otherwise, people are being forced to accept the support they can afford to buy regardless of their own needs and wants. As stated before, I would much rather pay more money and know that I would receive a much higher quality service that I know really would be able to meet my wants and needs even if it meant that I got fewer support hours for my money than to pay less money to a much cheaper provider knowing that I would get a much lower quality service but be able to purchase more support hours for my money. There are currently two main problems with personalisation as far as people such as myself are concerned:
    1. It is not very good value for money because services would no longer be being bought in bulk as individuals may not want and / or need the same type/s of help and support.
    2. Some individuals receive direct payment so that they can arrange their own care, but I would have problems with receiving a direct payment.This would essentially make me someone’s employer and I definitely do not want or need the extra additional responsibility because it would add to my anxiety levels.
    I am not against personalisation if it means that people such as myself can have the level of choice and control required to enable them to buy in services for themselves and if it gives them the power about which services they want and need to use that are currently being provided by local authorities – this would be a very good idea. What I am against is ideas such as this which are not very good value for money and which would ultimately make life even more stressful than it already is for individuals on the autism spectrum, whose anxiety is already higher than that of other people without this diagnosis.

    • Jeremy Labram says:

      Again another really well made point, in my view. The very word, personalisation, means being matched to that person and their needs and wants, rather than trying to make a person fit a standard package. This fundamental difference in apporach simply needs an asssessment to be done that is ‘person centred’ – ie it starts with what life outcomes the person wants to achieve. A support plan is then skillfully put together with the customer to achieve those outcomes in a defined amount of time. In our work we identified nine places where the customer has a chance to exert choice over what happens to them, including feeling comfortable with those who work most closely with them.

      As for ensuring that the best value for money is achieved for personal budget holders, we have solved this by helping a local authority recommission how the necessary services are provided which ensures there is economy of scale and that customer’s also get the best possible support plan.

  23. David Durston says:

    I am in receipt of Continuing Healthcare funding. As a result I have no choice about who provides my care. The NHS procure the care directly from an agency and therefore are paying the massive agency margins. The first agency that they chose were completely unsuitable, but were chosen because they were local and were on their preferred supplier list. They had no knowledge of my condition, or needs, and carers were not adequately trained.

    Prior to being on CHC funding I received Direct Payments and could employ and train my own carers to meet my needs. The cost of the care was two-thirds of that incurred by using an agency. £20k pa could be saved on my care alone by allowing CHC funding to use direct payments. In addition the care would better suit my needs.

    • Jeremy Labram says:

      Yes. Good point. There is a huge advantage to be found in jointly commissioning social care for both the local authority and ‘Health’. This way both volumes go into the procurement exercise so providers bid harder and give better prices. More importantly the providers work in the same way for both CHC customers and Social Care ones. It can be made to work very well which not only saves money but also ensures providers are managed in the same way to acheive as much as they can with each customer.

  24. Guildford Soroptimists says:

    All care should be personalised and where economically viable, the recipient’s choices should be respected and indeed given the highestt priority above those of fund holder, relatives and other stakeholders.

    However for very vulnerable individuals this may not be fully possible. But respect for them should be maintained. There have been instances of carers being changed to stop them forming relationships with individuals and strangers entering their houses unnanounced.

    No carer should leave an individual until their needs are met.

    • Jeremy Labram says:

      Agree entirely. There often seems to be an assumption that personalised support costs more than traditional care. This is certainly not often the case, in fact. Traditional care is bought as a ‘box’ – same level of care from the start until it is next reviewed – maybe a year. Person centred support plans,delivering customer’s outcomes will, in many cases, taper downwards over time as the customer recovers – the box should be a triangle. What starts as a high level of support is reduced as it is no longer required. This can be make it a lot cheaper inn the long run and everyone is happier and better off. The customer is more independent, the carer knows they have done a meaningful job, and the funder has saved money.

  25. Jean Cozens says:

    I have been diagnosed with a mental illness. All the care I recieve is centred around drugs I have been prescribed and making sure I take them. I have done my own research into these drugs and they have many harmful effects. I personally dont find them helpful at all. I would like a choice of humane, non-coercive, drug-free care such as pioneered in the Soteria project in the USA and in teams working in Scandinavia.

    • Lilian says:

      I am in receipt of Continuing Healthcare fnuidng. As a result I have no choice about who provides my care. The NHS procure the care directly from an agency and therefore are paying the massive agency margins. The first agency that they chose were completely unsuitable, but were chosen because they were local and were on their preferred supplier list. They had no knowledge of my condition, or needs, and carers were not adequately trained.Prior to being on CHC fnuidng I received Direct Payments and could employ and train my own carers to meet my needs. The cost of the care was two-thirds of that incurred by using an agency. a320k pa could be saved on my care alone by allowing CHC fnuidng to use direct payments. In addition the care would better suit my needs.

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