The Dilnot Report on social care funding and the palliative care funding review comment - 1

The Dilnot Report on UK social care funding and palliative care funding review in mid-2011: links and critical commentary
July-August, 2011 by Malcolm Payne, St Christophers Hospice London

Two crucial reports have come out. The first is the report on funding palliative care: The report here: http://palliativecarefunding.org.uk/wpcontent/uploads/2011/06/PCFRFinal%20Report.pdf Palliative care Funding Review (2011) Funding the Right Care and Support for Everyone: Creating a Fair and Transparent Funding System; the Final Report of the Palliative Care Funding Review. London: Palliative Care Funding Review. This report, commissioned by the Department of Health aims to arrive at a funding mechanism for palliative care. The Review has a website: http://palliativecarefunding.org.uk The second, and more important one, is the much-awaited Dilnot review of social care funding. The Dilnot Report here: https://www.wp.dh.gov.uk/carecommission/files/2011/07/FairerCare-Funding-Report.pdf Commission on Funding of Care and Support (2011) Fairer Care Funding: The Report of the Commission on Funding of Care and Support. London: Commission on Funding of Care and Support. This was also commissioned by the Department of Health and, it seems, the Chancellor of the Exchequer. It connects with the Departments social care policy statement: Policy statement here: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/d igitalasset/dh_121971.pdf Department of Health (2010) A Vision for Adult Social Care: Capable Communities and Active Citizens. London: Department of Health. It also connects with the Law Commission report on social care law, because the government will have to decide how it is going to implement the social care report, and then how the law is going to be shaped to support it.

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Law Commission report here: http://www.justice.gov.uk/lawcommission/docs/lc326_adult_social_care.pdf The Law Commission (2011) Adult Social Care (Law Com 326)(HC 941) London TSO. Isnt it interesting that nowadays all these reviews, which are supposed to be independent, have their own logos and websites, instead of being clearly being clearly the product of the Department that commissioned them? Actually The Dilnot review has a heartening message telling you how wonderful its results are, which at one time would have been addressed to the Secretary of State and pointed out how it answered the questions he asked. Now, it is a breezy personal statement from the three important people in the review to us, the public. All this, I think, is designed to say how independent these people are, suggest that they invented what they want to say, in spite of the fact that the Secretary of State actually specified their terms of reference and so had a strong influence on the answers they have come up with. Except for the Law Commission which reports to Parliament, and so its reports have a gravitas that the others dont: they are a serious bunch dont have to sell their report to the public.

Overall comment: the problem of care quality

My overall view is that the Dilnot review has some clever new proposals on the old theme of paying for social care, particularly for older people but it covers wider groups. However, it will probably still be too expensive for the government. Also, it misses the flap-eared wrinkly grey animal in the room: care quality. No one will take insurance to pay for something that they fear will not be what they want, so the aim of stimulating an insurance and private market will be hard to achieve. However, politically and managerially, someone sometime has to do something about this, because it is a widely-recognised shambles that is going to affect important voters markedly in the near future. But its still mainly the future for most people. So theyve got to do something, but you can just hear George Osborne, the Chancellor of the Exchequer, saying: please, not too soon. So expect to see acceptance by the government of the principle of doing something, a White Paper (later this year is the planned date) saying they are going to do something, and an expert committee to work up some detail, so that they can introduce something after the next election, or in any case in a few years time. By that time, they hope the finances will be better, and the level of privatisation in health and social care will be higher, so that a more privatised social care fits in. On the proposed model: the aim is to formalise co-payment, the person needing care pays some (up to the cap: current talk is about 35,000, but the report also mentions it going up to 50,000 guess where I think it will be pitched?), then if necessary, the government paysthe rest. By making clear what the individual will have to pay, and setting it within bounds for people who have the capacity to make a contribution (capping the co-payment for the person who needs care), the government gets itself out of having to bear the full cost for people who can afford something, and encourages an insurance market so that individuals can lay off some of the risk they might face.

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This is to recognise that the government says that it cannot afford to pay everything, as is the objective with the NHS. The information about public attitudes in the report suggests that this is a surprise to many members of the public, who see it as just like the NHS: after all they are sick and frail, isnt that healthcare? Unfortunately not, because our system distinguishes between health problems that need healthcare (NHS and free) and health problems that lead to your not being able to do everyday things in life (not healthcare and therefore you pay why should the taxpayer pay for the things that you would normally do yourself?). The public does not understand this distinction. Isnt social security and the NHS about making them feel secure when troubles come upon them? When the report talks about the problem being fear and insecurity, I think it fundamentally misunderstands this issue. The public expects the government to help them when troubles come upon them; capping the likely to cost to them and making them insure for it is not securing government help, it is opting out of taking on the troubles in the first instance. Yes, people accept that theyve got to do as much of their bit as they can, but the insecurity has to be taken by the government first, not last.

The care deficit

And the other big misunderstanding is that the big insecurity is not the cost: the big insecurity is the risk of poor quality. Lets nail this right away. I remind you of the concept of the care deficit, invented by Hochschild. She says there has never been in history and there never will be enough care of the right quality. Why does the care deficit exist? One reason is that there are not enough people who actually want to do caring: its boring, hard tough work. People sometimes do it willingly for people they love, and get a lot out of it in a sense of achievement and social contribution, but its not something that you would spend a big slice of your life doing if you could avoid it. And its not like caring for children where mostly you can get the satisfaction of seeing someone flying into a successful adulthood. With frail older people, or people with long-term care needs because of disability or illness, you cant see the end but you know it will be greater disability or death. As well as this, most care is just OK, not good. This is not because care homes of home care agencies are bad people doing a bad job: there are two main reasons why most care is only OK care. Its OK because the government, if its paying, and private individuals if theyre paying, do not pay enough to get and train (hear that again : and train) the staff to do a good job and spend enough time to be really caring. So they do the basics, and often its OK. Its also OK care because its never what people want. Ive said this before and Ill say it again: when Im frail and elderly I want my lovely competent wife to care for me, but theres only one of her and shell be frail too by that time. So any care I get will be OK at best, because it wont be her. Shes a bit less sure about this, because shes not too sure Im all that competent, so it will certainly only be OK care for her. Most people know this instinctively. And they hear that what they will get if they become really frail is their loneliness relieved by a series of fifteen minute visits during the day by a succession of people they dont really know to do basic care tasks, or a moderately pleasant but rather scruffy and institutionalised care home. They do not expect a pleasant and

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personally developmental time of it, and they know that at worst this may go on for several years. An old girl friend of mine used to say that playing the field as a single person meant going out with people that you dont quite like well enough to hitch up with. Its the same with paid carers: you get possibly pleasant but bored and harried people whom you dont really know very well probably from a different background to you, coming into your house to do intimate things with your body or routine jobs around your house. Not enticing is it? And this is what were supposed to commit tens of thousands of our money or equity in our house to insure for? People wont go for this insurance until the quality is massively improved and they feel secure in what theyre going to get. They dont see at the moment how theyre going to manage all this, so theyll leave it in the hope that it might not be the worst for them, and if it is the worst, theyd rather have the government to complain at and some of their money going on to their children instead of being eaten up in just OK care.

People dont trust financial services for care costs

A quickie in passing: the Financial Services Authority wrote to Dilnot saying they would be happy to be engaged with setting up a regulated system for supplying and advising on financial services that would provide for care costs. This just shows that the financial world sees Dilnot as another chance for making loadsa dosh. The letter here: http://www.fsa.gov.uk/pubs/other/dilnot.pdf Not a lot of people have much faith in the financial services, considering the mess they have made of our pensions over the past two decades. One of the worries about Dilnot is whether it will encourage another raft of deviously constructed financial services to extract our money and not do the business in the end of providing for our care needs. This connects with the anxiety many people have of the quality of care they will get and the advice they will get in making plans and decisions. Most of whatever they get will come from health and social care professionals, who dont have the expertise to give advice on financial products. However, specialist advisers on financial products (a) cannot know what will happen years hence when their products are needed to provide care (b) are interested in making money from their clients now, not dealing with the complexities of care in the future. The Financial Services Authority has a record of bolting the stable door, when the horse is already living it up in distant pastures green. While appropriately qualified financial advice will be needed, it is clearly not going to be relevant to the most important decisions that people are going to need to take about their care. Theres a difficult issue here about separating the financial means for providing a service into a financial product separate from the decision-making about what the product will provide for.

Who wrote the report?

My social policy teachers always told me to assess official reports by looking at who commissioning them, what the terms of reference were (so you understood the ways in which they were limited) and who was chosen to write it, because that would tell you what the commissioners hoped to get to of it.

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It is commissioned by both the Department of Health and the Treasury, so its clearly a money thing, deriving from a widespread politico-economic view that we know we cant afford this but we know sooner or later well have to do something: please tell us something we want to hear. I think the starting point is clearly: we cant afford this, rather than how are we going to do this well? and Dilnot will be successful to the extent that those with power think it helps them to afford this entirely dislikeable responsibility. The Report is signed by Dilnot, an economist who used to run the ultra-independent Institute of Financial Studies; he already has a CBE: the K is obviously coming along soon, or the lord if hes prepared to be not too independent in his thinking. The other two signatories are (Lord) Norman Warner, the former civil servant, director of social services (but not a social worker) and Labour minister in the Lords and (Dame) Jo Williams, who actually is a social worker, former director of social services, former director of Mencap and only a week or two ago apologising on the telly on behalf of the Care Quality Commission, of which she is chair, for some failure or other there are so many). So heavy duty, appointed to be clearly independent of the present governments interests, knowledgeable about how it works from several different points of view. Also the lead, Dilnot, is clearly not from the sector, so theyre hoping for a fresh look, another sign of George (the Chancellor) and Andrew (the Health Secretary) saying please, please, please tell us how to get out of this mess without spending any money.

Terms of reference
The terms of reference also have their interest: finance is clearly the issue and the worry is clearly protecting middle England from having to sell their houses to pay for their care: thats the political issue, not really the quality of care. Note, too, the fourth term about making sure it fits in with the (rapidly changing) scenario about financial regulation of the new NHS: this has got to fit in with privatisation and government control of finances. There are four terms: how best to meet the costs of care and support as a partnership between individuals and the state; how people could choose to protect their assets, especially their homes, against the cost of care; how, both now and in the future, public funding for the care and support system can be best used to meet care and support needs; and how its preferred option can be delivered, including an indication of the timescale for implementation, and its impact on local government (and the local government finance system), the NHS, and if appropriate financial regulation. Then, in the management way of these things, they are given four criteria for success in their model, and they do refer to these fairly consistently in the report, so theyre clearly important: Choice, fairness, value for money, sustainability.

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Not really a lot on quality of care there either.

Dilnot on funding for carers

One aspect of the Dilnot proposals is a better funding system for carers (informal caregivers in the medical jargon for you international readers). The argument is that they are trying to rebalance the system between state privately funded and unpaid, informal care. This makes an extremely important point: if you are going to try to have a clear system of provision, you also have to be clear about what informal carers are expected to do. Three things are needed, according to the carers and their organisations that Dilnot spoke to: better funding for carers, better assessment, and more support and information. The Dilnot answer on better funding is that since more money is going to come into the system, there will be less financial pressure on informal carers. I have my doubts about this, because the money that is going to come in is going to come from people insuring or paying for a higher proportion of their care (so it will come from the family that is supporting the carers: people dont keep separate tranches of money, they mostly cant afford it), or from public services paying for more care and thus not spending so much on carers services. Hidden in Vol 2 (the workings out) (p 39) is this statement: Removing fear and uncertainty by capping costs will make it easier for people to make the choice to buy care services rather than relying on their families. I dont think this is how it is for service users, for the same reason that I make the points in my previous overall comment post. People prefer relying on their families, if they trust and like them, which they mainly do. So therefore they start with their carers and only move on to paid care if there is no alternative, because paid care is always less (because of the care deficit) and always less good (because its less personal). So this is a nave comment, which is holding out a hope that is not there.

Dilnot on assessment for carers

On assessment, the Dilnot report supports the Law Commission proposals that there should be rights to carers assessments. Dilnot argues for carers assessments to be done at the same time, but separately from service users assessments, so that carers get listened to. Currently, social workers are supposed to tell carers of the people that they assess for care services that they also can have a separate assessment, and carry out the assessment, which should feed into the service users care package. There is a good deal of evidence that they dont do this consistently, mainly because they do not have a lot to offer when they do their assessment, because no extra money was put in to achieve anything. I once came across a case where a carer had injured herself through caring for her husband, to the extent that she needed an operation. The carer assessment noted that she needed respite care, and a weekly afternoon at a carers support group was offered. This might have been valuable, but it did not address the actual needs that this carer had, which was for more

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extensive paid care for her husband to substitute for her. There was no way the local authority was going to pay for that, so they did almost nothing. What is made available should, says Dilnot, follow the desired outcomes for carers in the National Carers Strategy. This strategy has been refreshed, presumably by the new government; the concept of refreshing a strategy (click the icon on your browser to refresh the page when it gets stuck) is a new one on me, and shows how computer language infects every form of marketing activity remember I see the Dilnot report as marketing what the government wants you to think. Links to carers documents below. In case you think these wonderful objectives in the Carers Strategy are going to change the life of carers by well-planned and active interventions, let me just reprint the outcomes for you; they are seriously vague and aspirational (airy-fairy, as my mother would have said): Carers will be respected as expert care partners and will have access to the integrated and personalised services they need to support them in their caring role. Carers will be able to have a life of their own alongside their caring role. Carers will be supported so that they are not forced into financial hardship by their caring role. Carers will be supported to stay mentally and physically well and treated with dignity. Children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive and to enjoy positive childhoods. So dont be looking for any progress from the Dilnot proposals there. I think the only way assessment and support and information is going to be better is if carers assessments are done by an independent body (Im thinking about some of big society social enterprises, perhaps run by carers organisations and employing their own social workers, providing assessments independently and then providing advocacy to ensure the local authorities toe the line). But Im afraid that cuts in legal aid funding suggest that the government is not looking for anyone who is poor and has needs to be able to enforce their rights, and I suspect that their aim in getting social workers to set up independent social enterprises is to cut the costs of providing basic services, not use the independence to generate greater demands on local authorities. Not much hope for carers there.

Official carers strategies and the lack of independent advocacy in them

Here are the links to carers strategies, and by looking at these you can see what a low priority advocacy for carers is (except possibly in Scotland). Here is your chance to see a refreshed strategy (clicking the refresh icon if your browser is stuck gets the page again) by looking at the National Carers Strategy here: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digital asset/dh_122393.pdf

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If you want to see the unrefreshed document and other things go here: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuida nce/DH_085345 There are also separate strategies for Northern Ireland: http://www.dhsspsni.gov.uk/ec-dhssps-caring-for-carers.pdf; this is quite old and there is an updating website (not quite up for refreshing in NI, it seems): http://www.dhsspsni.gov.uk/index/hss/ec-community-care/ec-carers.htm for Scotland: http://www.scotland.gov.uk/Publications/2010/07/23153304/22 and for Wales: http://wales.gov.uk/topics/health/publications/socialcare/carers/;jsessionid=9FfnTXGF8vvyX 3yVJ34hyrH3YzWc8fQDJBGyxtpYBJ3QNT98WNhr!1215994767?lang=en (there are a series of annual reports in Wales: links from this site). Interestingly, the Scotland document specifically proposes developing advocacy services for carers (see this page: http://www.scotland.gov.uk/Publications/2010/07/23153304/22), and this really is about advocacy if carers are dissatisfied; this is the meaning attached to advocacy in the NI report too. The only UK comment on advocacy (although the consultation showed that carers wanted advocacy) is advocacy so that people understood how good personalisation is for them. Thats not advocacy, thats telling people whats good for them. My impression is that its only the Scots who are interested in advocacy. The England government seems to think: Lets make sure the carers cant really press what they want and need.

Carers going out to work

The previous government had a big emphasis on ensuring that carers maintained their education and skills for the job market, and this is still a feature of the Dilnot proposals. So, when youve had your few years off caring for granny, you can go straight back to work, thus not costing the government any extra money in social security. This is not unreasonable, and desired by many carers. Ive come across a lot of carers who are frustrated by having given their all to look after someone for many years, and then feel theyre on the scrapheap. The problem is that, if you are going to rely on family and friends to do most of the caring, so that caring does not cost too much, the carers have to spend most of their time caring, so help to prepare for their future is mostly just a token. Added to helping people to remain in or return to work, Dilnot emphasises the importance of the right to ask employers for flexible conditions of service, so that you can take time off when you need it for your relative with long-term care needs. I can see some employers, for example local government, doing this, but not red in tooth and claw private sector employers, who are going to think this is an imposition on their freedom to drive all their employees into the ground.

Overall comment on carers strategies

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So it seems to me that carers strategies are stuck, need further refreshing and the Department of Health needs to click on the icon. #

The palliative care funding review

My overall view of the Palliative Care Funding Review, is inevitably affected by the almost simultaneous publication of the Dilnot report on the funding of adult social care, not to mention the fairly recent Law Commission final report on Adult Social Care Law, which looks set to lead to legislation next year. People with a focus on palliative care alone may wonder why I should think these other reports relevant, but constant readers of my social care/palliative care blog will know of its aim to place palliative care within the context of wider social and health care. The point is that all older people know they are approaching death, so they will be receiving some degree of end-of-life care, mostly by looking after themselves and their own affairs, but also from their families and friends. Mostly, they will continue with their personal aspirations for their lives, supported by the ordinary social and health care they receive. That will be the major element of the formal help they get; specialist palliative care will be a minor element for the few. So, we should really not start from a funding review of a rather specialised, healthcare-focused provision. Instead, what we should be doing is starting from personal aspiration, informal and general social and health care during the period running up to the end of life, and seeing where palliative care for advanced illness fits. But the Review is here and central to the aims of this blog, so here goes, although to compensate for the conception, which comes from the Reviews focused terms of references, Im going to include some compare and contrast with how I would look at it from a social care point of view.

Palliative care funding, Dilnots funding proposals and the future of end-oflife care
Reading the Palliative Care Funding Review alongside the other reports, Dilnot especially, the surprising thing about it is how old-fashioned it seems. The reason for this is, I think, that it is trying to do what nobody else is thinking about, or has thought about for quite a while: get the government to fund a service more. The reason for trying to do this, and for the government having commissioned the report presumably, is that the Conservatives have been fairly upfront in saying they want to fund hospices, particularly childrens hospices, properly. This is largely founded on the same sentiments that get big charitable donations for hospices and other palliative care services such as Macmillan and Marie Curie nurses; it is recognisably a good thing. So there is a bit of a policy impetus and an opportunity there. It seems a sensible move to grab the opportunity and see if we can get a bit further with palliative care funding. Moreover, the ConDems know that there is a lot of charitable money coming into hospices and they want to encourage services that achieve this; its part of the big society agenda. So you could argue that palliative care is getting the reward for its big society achievements over the decades. However, knowing that the money is there probably means that the government

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dont want to spend any more on them; rather they would like to get more out of them; that is also the big society agenda. I dont think it is an unmitigated political good that the government has recognised the amount of charitable money coming into palliative care. If I were Andrew Lansley, Id be looking at how I could get that money transferred into funding my mainstream healthcare services. After all, people are usually happy to donate charitably to a hospital or a local healthcare service that they find useful: I dont know that they particularly care whether their local hospice or home nursing service is run by an independent organisation so long as it is doing the job. Some years ago I remember giving a donation on the retirement of my GP for a new local hospice that, it turned out, was actually part of the local general hospital. It got its funding with no problem, and I suspect the same would be true if the NHS went all-out to define extra end-of-life care bits in its mainstream services and get charitable donations for them. So there is a risk that moving along the path of greater involvement in the mainstream NHS will lead to greater incorporation of independent provision into a dominating NHS commissioning process. In the end that might vitiate the independence that has served palliative care so well in maintaining its creativity and lightness of foot. The social work historian in me is reminded of the cause and function debate in social work in the 1930s: once youve stopped being a movement to achieve something innovative, you shift into becoming part of the functions of the state, and a bit of pizzazz is lost in favour broader security of provision. But, I hear you say, isnt Dilnot also trying to get the government to pay more for a service? Hasnt the main criticism been that it will cost the government billions when austerity is the order of the day? Yes, but Dilnot is addressing an issue that is widely recognised as a major social issue of the day, that the government has to do something about. Although, as Ive already said in a previous post, the real problems will still not be here for a decade or more, so the government can follow the grand tradition in dealing with difficult issues and frisbee Dilnot into the long grass without difficulty. Another thing about Dilnot, thats not true for the palliative care funding review, is that its helping the governments money problems because although Dilnot will cost more, it will tie co-payment into the social care system, so that it will become the publicly-accepted norm that people will make contributions for their care. This would be a great political achievement. They already make contributions of course, but Dilnots research shows that it is not widely accepted. The political gain in implementing Dilnot will be that the whole adult social care system would be set up to achieve public recognition that we as individuals have all got to pay for our social care, and, on top of that, weve all got to pay more than we have been assuming we are going to pay. And as the years go on, I have no doubt that the system will be tightened so that we will all have to pay even more as individuals; that process has been going on since the mid-1980s, when the care home system was privatised. The palliative care funding review is not offering that to the government: it wants to incorporate free social care into palliative care, when Dilnot is taking social care the other way into people paying more for what they get. The fear must be that if Dilnot is implemented, tying social care funding into palliative care provision will lead to creeping acceptance of social-care-style co-payment for end-of-life care services, rather than the NHS

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assumption for free at the point of delivery. So its understandable that the palliative care funding review is trying to be very clear that this should all be done on an NHS basis. However, I think there is an opportunity open to the government here of saying: Well, were moving into end-of-life care here, not specialist palliative care, so its more appropriate for it to be like social care. My suspicion is that such a view might eventually (after the next election, say) not only be applied to end-of-life care but to all sorts of what is currently community healthcare provision: Its all a bit like social care, isnt it? No reason that people couldnt pay something towards it. I hope not, but I suspect so; the more so because I hear from the financial pages of my newspaper about the possibility of an L-shaped recession (austerity is going to go on for ever). Moreover, the palliative care funding review is saying that there is wide inequity in the provision, so that the whole thing should be more coordinated and coherent. We can all agree with that, but any astute civil servant will know that making everything coordinated and coherent will probably mean that there will have to be more of it. This is because places that have not got much will have to be brought up to the more usual level of provision. The more of it will cost money, and so there will be upward quality creep very desirable from the point of view of patients and palliative care services that want to improve their offering (the Reviews perspective), but not so good if youre George Osborne and trying to save money. Balanced against this, the Review offers some possibilities to meet the governments present preoccupations. First, by coordinating effectively it has been made clear by some of the Marie Curie projects used here as case studies that you can do a lot to provide a more comprehensive service in an area without too much cost push, by facilitating more efficient delivery of care. However, if I were an NHS commissioning group, Id be worrying about stimulating too much demand that I couldnt meet in straitened times. Second, and I think the major advantage that the Review can offer the Chancellor as he views the Olympic volleyball finals from his study window in number 11, if you can really get palliative care going well in home care and other community settings, you can take some financial heat off the hospitals because its absolutely clear that effective community end-of-life care more or less stops the unnecessary emergency admission of dying people to hospital care. Which brings us back to social care, because a lot of that community provision is going to be in residential care homes and require integration in community social care provision, and I think the detail of how social care will knit with what the Review proposes is unclear. One of the important aspects of that is that the Review mixes together palliative care for people with advanced illness (a relatively limited provision) and broader end-of-life care (a universal requirement) with the aim of getting end-of-life care more accepted into the mainstream of community social and health care. The problem is that these are fundamentally different animals: what I think we should be about is knowledge and skill transfer. We need to transfer knowledge and skill from palliative care, so that end-of-life care can build up its knowledge and skill resources to provide what in many areas is a fundamentally new aspect of their generalised services. This is less about service funding and more about development work. Doing this will take away the resource pressure that arises from unnecessary hospital admission, as the Review rightly says. But it should also reduce the need for palliative care services, because better general end-oflife care provision in social and health care will reduce the need for specialised palliative care

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except where there are complex advanced illnesses and complex social circumstances to deal with. Putting these two together, as the Review does, makes clear the connections, but I think it does not make the argument that palliative care is the senior service. It is currently the service with the expertise, but as a service once it transfers its expertise, the need for the specialist resource has to be looked at in relation to its more limited specialist role within the wider non-specialist provision. So to some more detail.

Trying to get more for palliative care

What, then are the detailed arguments in the Review for developing end-of-life and palliative care? Postcode lottery: there is wide variation in the funding, so that the minimum spend in PCTs is about 0.2m, the average spend is 3.1m and the maximum 21m. the cheapo PCT spent about 181 per death in their area, while the Rolls Royce PCT spent 6213. The average spends less that 1000 a death. Im a bit doubtful about the extreme variation of these figures: while I believe the average, I suspect that there may be variations in what is being counted in different PCTs. Complicated and variable funding mechanisms for hospices mean that theres a block grant in many areas, spot purchasing sometimes and 97% of independent hospices thought that the NHS did not pay fully for their patients. All too true, but if an NHS commissioning body looked anew at that, they might decide that they would prefer to stop funding beds in hospices and spend more in the community, in care homes and in hospital palliative care, where the major lacunae are. As a result, it might be able to reduce a lot of demand on and criticism of its emergency services by having a more secure universal end-of-life service. More rational funding does not mean more for beds in hospices, although their part in community services might be secured. Funding is further complicated. Palliative care is done in hospitals, hospices, peoples own homes (using GP and community nursing services) and care homes, and they are all funded through different processes. Not to mention the major (and largely unfunded) contribution of self-care and informal caregiving by friends and family. The Law Commission on adult social care law is recommending a reform of the rights of informal carers to assessment and service provision to improve their own wellbeing. If more government money is going on them, an NHS commissioning body might find it beneficial to focus on supporting informal carers and general community services. Again, simplification does not necessarily mean more beds in specialist palliative care, or a funding priority to palliative care responsibilities. Crucially, there is a chance of saving money always a good move to say this to governments and it is because too many people are being admitted to accident and emergency units inappropriately, when if they were properly cared for in their own homes and in care homes they would not consume expensive NHS resources at the

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end of life and, even more wonderfully from a politicians point of view, they would prefer it. The last two items point to a virtuous circle: we could save money if we did what people like: better than a slap in the face with a wet gurnard (youre supposed to be enjoying unfamiliar fish dishes so as to preserve endangered fish stocks; get the behind me codfish, and look with favour but according to BBC Good Food, not with flavour on scorpaeniform fishes in the family triglidae). What is not clear is that savings in accident and emergency would pass to fund better end-oflife care: they are more likely to pass into the hands of Mr Osborne. So better end-of-life care might have to be funded from existing resources in palliative care.

Proposed new funding system

The last time work was done on this, we got to a system of paying for each patient for a period (perhaps about 12 days) in a hospice. This Review had research which has come up with a much more sophisticated model. Basically, the idea is that bits of the NHS that are treating people for a medical condition get the money for doing that, and when it is decided that they are also dying, they get another bit for palliative care services. Its a bit like James Bond and the man from Smersh in a struggle on the clifftop: they sway to and fro between the condition money and the palliative care money, until they fall off the cliff, the man from Smersh dies (and so the money stops) and James meets a nurse and sails off in a rubber dinghy into the sunset. Theres a diagram of this a wavy line goes up and down with more condition money giving way to more palliative care funding and then back again, as the patients needs change. The amount of money is worked out on patients needs. These in turn are calculated by allocating patients to a category. The main thing is the stage of the disease (stable, unstable, deteriorating, dying); but added to this is whether they have a specialist or non-specialist provider, low or severe problems, their functional status (can they walk or sit up?) and age (over or under 60). This produces 13 classifications for adults. The same principles are applied to children, but I wont go into the detail. The first stage is that it is decided that the patients require palliative care; this means that they get the money for that added to their disease money. Every time they enter a new stage of the disease (pay attention: from stable to unstable, unstable to deteriorating or deteriorating to dying and so on), their service provider gets another slice of money. There are two things about this: one is that the healthcare system is much more used to doing this sort of thing than social care. The decision about whether you require palliative care is the surprise question (would you be surprised if this patient died within the next whatever period you decide perhaps 12 months?). Care homes and adult social care staff tend to ask that sort of question about their clients even less than healthcare staff (because they generally dont have a focus on peoples overall physical condition) and they tend not to have the kind of good evidence that would mean that you can trust the decision, as you would trust a GP or district nurse thinking about it. In particular, its easier to ask if you have a clear medical condition and even more so if, as in palliative care, you have an advanced illness, where the stages of progression are well mapped out. I wonder if this will mean that people who are

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getting frailer in the community and mainly being looked after in social care will not get the palliative care money because nobody will be thinking clearly about their end of life. There is evidence that many people in care homes who pay for themselves do not get a lot of attention from professionals; for example social workers do not review them regularly because the local authority is not paying. So they might not get assessed. Alternatively, what may happen is that there will be a demand from adult social care departments for GPs to make this assessment, or ticklists will be set up for social care staff to go through to do the assessment. This could mean that the decision-making for people outside healthcare will be more rocky and inconsistent than the Review assumes. This feeds into my next point. This system is a big incentive to put people on the palliative care money as soon as possible in their illness career. I reckon there will be phasing drift. Social workers, care home managers, and other commissioners will put people on this extra money as soon as they can. Who will the commissioners be? GPs and their friendly local hospital doctors and other healthcare professionals will be running the commissioning show, so there will be a financial incentive to get their hands on the palliative care money, and speed up the shifts to the later and more lucrative stages of the palliative care money. This means that people might be progressed up the levels of care quicker than necessary; not a good outcome for the psychology of patients in my view. Care home proprietors and social care staff will realise that if they can get someone on the palliative care money they will get enhanced funding and, if the Reviews recommendations are accepted, anyone they get onto palliative care funding will get free social care for which they would otherwise have to pay. The report specifies various scales that will have to be completed for assessing the funding group, but as I frequently point out, scales are just forms filled in by human beings; they are not evidence. The people filling in these forms, and the people they are filling them in about, will have a strong financial incentive to look for reasons for extra funding for this patient.

Social care in the new system

Following on from the previous points, how social care is funded and organised is clearly going to be a big issue for many people moving into this end-of-life care system. The proposal is that social care will be a clip-on to the palliative care money. Once someone is defined as end-of-life, all their social care would be paid for by the NHS. The effect of this is that people defined as at the end of life would be accepted as being eligible for what is currently NHS continuing care funding. Its a nice idea that people should get social care within their NHS services and indeed my experience of dealing with continuing care applications is that most people feel this is fair. Although the system distinguishes between healthcare needs and social care needs, most social care needs are offshoots of health problems, and people find the distinction drawn by the present system nonintuitive. It is also true, as the Review rightly argues, that most people are beyond social care once they are receiving palliative care, so there should not be a massively increased cost to the NHS. However, while I think this argument is right, I dont think it is how continuing care is played by most commissioners at the moment. I know civil servants are rather gungho about their wonderful rational national assessment system for continuing care, but many people who are applying for it find that commissioners tend to resist very strongly too much drift onto full funding. Therefore, although if you look at the criteria, most palliative care patients should get it, and so the extra cost of this proposal is not great, the reality of how it is

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allocated means that actually many people are not treated as eligible and phasing drift and the increased comprehensiveness of a universal end-of-life care service may mean much greater demand to deal with. Moreover back to the point that most people pay for their social care, and particularly for their care homes this proposal will be very much at odds with the way in which the government wants to take the social care funding system, which is to get people to pay more, not less. I would be very surprised if the government will go along with allowing people to opt out of their own contributions and shift the burden onto the NHS; thats not the signal that they want to give the public about being responsible for your own care. Reading the document, I do not get a clear sense of what clip-on means; the implication is that an extra sum to fund social care will be added to the palliative care money. But where is this money going to come from? NHS continuing care budgets? Or will it simply be a call on the palliative care money that you get at the different stages of your progression towards the dying phase. If so, money could actually be taken away from palliative care funding for, say, hospices, to fund social care costs. More likely, the whole thing will be lost in a translucent general budget allocation, which over time will be increasingly squeezed, so we will not be quite clear how much money is being allocated for each patient at all; it will all become very discretionary. Which goes against what the Review is trying to achieve. Finally, the main focus of the Review is on funding the end-of-life care system, but just a question about social work (which, as opposed to social care, is little mentioned in the Review), because it is not clear to me how psychosocial and social work needs will be met within a system like this. I think the intention is that formally assessed needs will be met in a coordinated system commissioned by an end-of-life coordinator from adult social care departments. When someone is defined as end-of-life care, the palliative care money will snap in, paid presumably to an end-of-life care coordination body in the area, commissioned through the healthcare system because thats the focus of the report. So where a frail older person is receiving a continuing adult social care service, for example regular reassessment in their care home or community setting, will this be pulled out in favour of a new palliative care service? I suspect an adult social care department will ask for money and if they dont get it, theyll be over the hills and far away, because, the report says that social care is being paid for by a clip-on to the palliative care money, although not (in alignment with Dilnot) accommodation costs. The Review reports that stakeholder views saw social care, along with other non-healthcare elements of multiprofessional palliative care as it is currently conceived as something that should be supported by a combination of the state and society (p 17). Its not quite clear what that society might be or how much might not be funded by the state: presumably social care and related things would not be an NHS-funded provision, but resources would be recruited from elsewhere and coordinated by the NHS service, including the voluntary sector and adult social care departments. But if this is not funded, it may well be hard to integrate comprehensively. I dont say this cant be organised, but I dont think the working together can be left to organise itself and I suspect it will mean money from the extra palliative element of the payment.

Well-being in end-of-life care

Which brings me finally to my concern about the way in which the Review rather elides major differences between the direction of the adult social care system as a part of a universal

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end-of-life care system and palliative care as a specialised service for people with clearly identifiable advanced illness. As I look at the Law Commission on adult social care law, I see the proposal that there should be a legal focus on wellbeing in social care provision. It is also proposed that provision should come from a legal duty on local authorities to provide both a service user and carer assessment. It is not clear how this would interact with the single assessment for palliative care. The outcomes proposed for the legislation that an adult social care department will have to achieve are: (1) health and emotional well-being (2) protection from harm and neglect (3) education, training and recreation (4) the contribution made by them to society (5) social and economic well-being; and (6) securing their rights. These are very broadly phrased and include some aspects which would be unexpected in health care or palliative care. Many of the broader outcomes would also tend towards the things that the palliative care funding review would see as provided by society rather than the state (although this distinction is reported from stakeholders rather than pursued by the Review). However, note the inclusion of rights. The Law Commission points out that under the Human Rights legislation, people receiving care services under a well-being principle are entitled to demand their rights as follows: Among other matters, it emphasises that the Article 8 rights of disabled people to participate in the life of the community and to have access to essential economic and social activities and to an appropriate range of recreational and cultural activities. This is a quotation from a legal judgement. If we are to include social care into a palliative care service that respects patients human rights as defined in the proposed social care legislation, it will need to respond to needs very much broader than a healthcare definition of what should be provided in end-of-life care, while the Review, presumably because of its terms of reference, rather focuses on such a healthcare definition. The Law Commission assumes that a necessary outcome of a social care service is the provision of social, leisure, communication, education and training activities for patients. While some palliative care services, St Christophers pre-eminent among them, have made great strides in including arts and personal development into what they provide in hospices, care homes and in the community, this is not generally what the NHS sees itself as there to provide, and what Mr Osborne will see himself paying for. The end-of-life care provision proposed in the Review is firmly focused on financing healthcare objectives in alliance with broader NHS provision and commissioning. It is not clear that this is going to allow for the broad understanding of social care that human rights

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legislation and the proposed social care legislation requires, not to mention fulfilment of the aspirations of many in social care, and I believe also many in palliative care.