Social care and social work are important in end-of-life care.
Malcolm Payne's blog focuses on developments in social care and social work that affect palliative and end-of-life care. It is part of the information work of St Christopher's Hospice, London.
I’m back after working abroad for a few weeks, and I notice that the Department of Health website now has a tag cloud: see the picture:
So you see ’social care’, let alone ’social work’ there? Or ‘palliative care’? Or ‘end-of-life care’? Or ‘older people’? Clearly none of that bothers the DH.
The recent Report by the National Audit Office on personalisation and social care provides lots of useful information, and also a thoughtful critical review of the issues in the developing social care sector. Its main focus is whether local and national oversight is sufficient to ensure that needs are met and personal budgets are not misused. It comes to the conclusion that the government doesn’t have much in the way of levers to manage situations that go wrong, and there are insufficient resources to move in and take over if a major supplier goes bust. It was also hard to find care providers who could deal with very complex needs and getting advice and support for care users in setting up and managing their care was also difficult.
This bit includes a brief study of the collapse of the main national private provider of care homes, Southern Cross, recently. It confirms what we already knew, that this was mainly because its private equity owners sold its property and leased it back a few years ago. This is a typical manoeuvre by private equity companies, whose job is to squeeze the assets of the companies they own to get as much money out of them as possible. It has led to the downfall of a lot of retailers because they have too much debt to cope when market conditions get tough. The report makes the point that care homes and the care sector generally are not good candidates for this, because they have high fixed costs anyway, and if there are fewer people using them (because local authorities and other funders won’t pay or they come up with other options, which they will because this is policy), there will be more competition with other providers, fees will go down, and losses start to accumulate. Will we see less private equity involvement in the care sector? Don’t bet on it if there is money to be made: this should be restricted in the cause of quality care.
Another feature of the social care system that makes a market system a poor way of providing is a comment made on p 28:
From a consumer perspective, the care homes market has some characteristics of an inefficient market:
Entry into a care home is often unplanned and can be made in response to a specific event (such as a hospital admission or the death of a spouse).
By definition, switching rates (choosing to switch care home) are very low, and consumer research commissioned by the Office of Fair Trading suggests that it is considered to be a last resort by most residents (it can often adversely affect residents’ health).
As is the case with most care services, buying a care home place is inevitably an ‘experience good’, meaning that the consumer cannot really tell their satisfaction until it has been experienced.
There are also difficulties in getting new entrants to the care market, for three reasons:
Providers struggling to recruit staff to cover isolated and sparsely-populated rural areas.
High rent costs in some urban areas.
The challenging nature of care work, often unsocial hours, and relatively low levels of pay. (p 31)
To deal with this they recommend:
Subsidising adviser posts in voluntary sector advice and support providers.
Helping new small providers and social enterprises to enter the market by making local authority tendering and contracting processes more flexible and less burdensome for small providers.
Providing advice and in some cases limited financial support to help new small-scale care businesses enter the market.
Of course, they could come to experienced high-quality care providers like hospices, and get them to enter the social care market; this is happening in some areas.
Interestingly, an ADASS report on how things were developing suggests that most of the development is not in direct payments (the government’s and enthusiasts’ preference for the future of user control) but managed budgets (you get allocated a budget, but the local authority or some friend of the local authority – their tame voluntary organisation – manages it for you. This may be realistic, but it may signal the end of the shift to giving people government cash for care. Or it may mean there is going to be a hiatus while people get the confidence to move on again.
One of the things to ask is why the government is so keen on giving away its money in cash – generally treasuries don’t like allowing real people to get their hands on government cash; it means things can get out of control. The answer is two-fold: the politicians like it because people like the flexibility and control, so there is positive feedback in social care, an area that often gives problems rather than positives to government, local or national. The other answer is that the present political elite would like to have a functioning system of vouchers or something like to show that it can work. In most other areas where it is politically important to right-wingers to displace publicly funded services (health and education) vouchers have been shown not to work. So here the treasury (local and national) view may accord with the political view: by developing managed budgets, they can hang on to control while offering the semblance of giving user control. I’m a bit doubtful whether, in the long-term and covering every service user across the country, managed budgets will give real user control. The advisers and managers of the budgets will not have the incentives in the local government system (where not giving out money for any purposes if at all possible is totally ingrained) to be creative in getting imaginative ideas from service users and implementing them. They’ll fall back on standardised responses. So much more convenient and manageable.
The Report doesn’t get stuck on whether user choice is desirable and is actually enhanced; in general it follows government policy in thinking that it is. However, there are different views in different sectors of the population who might use personalised social care. Older people are less enamoured, although in general a majority of all sorts of service users thought that their mental well-being was improved and they achieved support that met their needs.
The Report at: http://www.nao.org.uk/publications/1012/oversight_of_care_market.aspx?dm_i=4O5,JGIK,UF1K0,1L8WB,1
National Audit Office (2011) Oversight of user choice and provider competition in care markets: Report by the Comptroller and Auditor General (HC 1458). London: TSO.
This post looks at the House of Commons discussion about the Health and Social Care Bill on 6th September. As usual, a lot of what was going on was detailed technical stuff, but the first day of it was mainly about privatisation and competition, including the removal of the ‘private patient cap’ (the limit on the proportion of income-earning private patients a Foundation Trust could have). This is relevant for social workers because if the critics are right, poorer people who only have access to the NHS rather than the cash to buy what they need, or a job that gives them health insurance, are likely to find it slower and longer to get their healthcare than they have become used to in the last few years because priority will be given to privatecare and money-earning
It is relevant for palliative care and social work for the main reason that the debate was not about what is most important. Most important are the increasing number of older people who are getting more frail and approaching the end of life, and have other long-term conditions. All this debate was mainly about political views about whether increased competition and increased private providers will be good for more effective care. No doubt there will be more private providers and and more competition if the Bill in its present form passes, because everything about the government’s and the Secretary of State’s attitude suggests that this is important to them and it will therefore happen by hook or crook. This is what happens in our poitical system: the people in power get their way by swinging the system slightly in favour of the things they want; not that increasing the private contribution was much less important to Labour’s health tsars during the period of the last government.
It does not seem that there will be much protection for the increasing population of older frailer people and others who will need longer term care. The debate did not address that directly. Therefore we can expect their position to worsen; care for them will slow up and go missing. Any amount of coordinating less money will not solve that. The likelihood is, however, that what one minister said will also be true: most long-term health providers will not be doing a lot of private patient stuff so nothing much will change for most people with long-term care needs. They will be getting the best they can out of a slowly-deteriorating system that does not take much priority political notice of their needs, while the whizzies with their acute care will be making money from the people who can and who want to pay, for the people who want to get more money for being involved in healthcare.
Some of the debate was about balancing competitiveness with collaboration; critics think the government has still not ensured that collaboration is more important than competitive markets. And that’s really important for palliative care patients and social work service users who also need a good NHS service
Most of the huffing and puffing frankly sounded like old-style political skirmishing over very little, rather than transformational change for the people palliative care and social work deal with: see what you think [my comments in square brackets].
The first group of amendments were about the vexed question of whether, to what extent and in what ways the government’s aim was to privatise the NHS. You can see this debate at:
It was tetchy. The Secretary of State discussed five main changes about this. The first issue was what would happen if a service (such as a foundation hospital) went bust.
First, the Bill puts clinically led commissioning at the heart of securing high-quality services for local populations. It is therefore right that commissioners should have a leading role when continuing access to services is threatened. Our amendments therefore strengthen the role of commissioners. For the first time, commissioners will have an explicit role in working with Monitor to agree plans to secure continuity of services. [Continuity of services means carrying on with providing somehting if the healthcare provider - eg the local hospital - collapses in debt or for some other reason.]
Secondly, commissioners will need to be supported in acting with providers to ensure that they have access to the scope, quality and choice of services they need. It is about promoting high-quality, effective and integrated services, as set out in clause 58. This will be the task of Monitor. If need be, when continued access to services is threatened because of failure occurring in a particular provider, Monitor will have a range of actions it can take. For example, it could take action to secure sustainability of essential services by adjusting prices. This would be necessary where a provider is otherwise unable to cover the costs of essential services—for example, because of lower patient volumes in more remote areas of the country.
Thirdly, if a provider gets into significant difficulties, we have provided Monitor with powers to be able to try to turn around the provider. The aim would always be to support the recovery of the provider, wherever this was possible. Specifically, the amendments require Monitor to maintain an ongoing assessment of risk to the continued supply of NHS services. Monitor must then intervene proactively to help a provider to address problems and, where necessary, agree contingency plans with commissioners.
Fourthly, we have put in place provisions to deal with the rare event of a provider no longer being sustainable in its current form. In that instance, the priority must be to secure continued access to the services patients need. [But not, you notice, continuation of the present provider, so if my local Hospital goes under they can call someone else in; possibly one of their private friends] This protection is particularly important in relation to foundation trusts, which of course are the principal providers of acute, emergency and specialist hospital services.
Fifthly, it is essential that political accountability runs through what hon. Members will all know is central to our responsibilities to our constituents. Our plans therefore strengthen political accountability at both the local and national level. At a local level, the amendments enhance democratic legitimacy by extending local authority scrutiny to all NHS services [this could in the end, if the local councillors and their, mainly social care, advisers do a good job of demanding a health service that is locally responsive and integrates with social care - they could push NHS people to respond to local social care need better, rathre than accepting this constant winge that social care does not help meet NHS objectives]. That is in contrast to previous proposals, where only designated services would have been subject to such scrutiny. At a national level, we will establish a process for the Secretary of State to veto proposals, in individual cases relating to unsustainable foundation trusts, if he decides that they do not secure continued access to NHS services and, as a last resort, to intervene where he believes that the NHS commissioning board or Monitor has failed to discharge its functions.
This is the comment from Frank Dobson, the former Labour Health Secretary:
To ask the essentially collaborative health care system in this country to turn over to being competitive is a bit like asking the Meat and Livestock Commission to promote vegetarianism: it is simply not what people want to do; it is not their approach and nor should it be. It remains the case that Monitor is still rigged in favour of promoting competition. Let me point out…that clause 58(3) states:
“Monitor must exercise its functions with a view to preventing anti-competitive behaviour in the provision of health care services for the purposes of the NHS which is against the interests of people who use such services.”
However, it does not say that “Monitor must exercise its functions with a view to preventing competitive behaviour in the provision of health care services which may be against the interests of the people who use such services”. Apparently, then, there is a basic, intrinsic and fundamental assumption that competition must be beneficial and non-competition must be harmful. If the Government say that Monitor is neutral, it should be given a neutrality in respect of competition and non-competition. …the unfair competition of some of the independent treatment centres was harmful to and threatened the services provided by neighbouring NHS hospitals. There is clear evidence here of problems within the private sector.
I recall that, a few years ago, United Health—a subsidiary of the US United Health—took over three GP services in my constituency. It bid that it could provide the range of services for less than the local GPs, so it got the contracts. It has not complied with all the conditions that were set, but in the end, the primary care trust decided that it could not take it to court because it would be such a lengthy and expensive exercise and it feared that the PCT might not win. Not content with that, United Health recently announced that it was selling the franchise to another private outfit. It did not consult the staff. It did not consult any elected local representatives—neither myself nor councillors. Above all, it never consulted the patients. These private sector outfits regard patients as part of the chattels that they can dispose of to maximum benefit and maximum profit.
That illustrates the fact that if we are to have contract-based provision of services, a huge amount of lawyer effort will be put into trying to draw up watertight contracts. What one lawyer thinks is a watertight contract, another lawyer will make a leaky contract by puncturing a hole in it, and we will go over to the system in the United States, where zillions of dollars are spent on court challenges or settlements with the providers of health care.
Furthermore, there is virtually no major American supplier of health care that has not been indicted for defrauding federal taxpayers, city taxpayers, state taxpayers, doctors or patients—and sometimes all five. I thus asked the Secretary of State whether he would rule out giving any NHS contracts to any organisation that had been indicted for defrauding people in another country. He gave me about a page-long answer, which could be summarised as, “No, he would not rule them out.”
We are thus talking about the possibility of European competition law being used to force our Secretary of State to allow people to give contracts to American companies whose greatest claim to fame is that they have defrauded innumerable Americans. I think that that is intolerable. I would have thought that all these anti-EU Conservatives would have found it rather embarrassing to think that European law was going to be used to allow fraudulent Americans to get contracts working in our national health service. All those things, however, will be possible under the system proposed by the Secretary of State.
Liz Kendall (Labour) made some related points:
The Bill establishes Monitor as an economic regulator, modelled on the same lines as those for gas, electricity and railways. The explanatory notes make this explicit. Page 85 states that clauses in part 3 are based
“upon precedents from the utilities, rail and telecoms industries”.
Indeed, in an interview with The Times earlier this year, David Bennett, the new chairman of Monitor, confirmed that that was the Government’s plan, saying that Monitor’s role would be comparable with the regulators of the gas, electricity and telecoms markets.
Labour Members have consistently argued that such a model is entirely wrong for our NHS. People’s need for health care is not the same as their need for gas, water or telecoms. There is a fundamental difference between needs, ability to benefit, the complexity of services and the fact that they are far more interlinked. The NHS is not a normal market. It is not like a supermarket, or like gas or the railways. There are much more important issues at stake.
…The Bill will guarantee that the NHS will be treated as a full market, and the providers of services will, for the first time, be treated as undertakings for the purpose of competition law. The Secretary of State said that the Bill would not increase the applicability of competition law, but the Minister of State confirmed it when he told the Committee:
“UK and EU competition laws will increasingly become applicable…in a future where the majority of providers are likely to be classed as undertakings for the purposes of EU competition law, that law…will apply.”––[Official Report, Health and Social Care Public Bill Committee, 15 March 2011; c. 718.]
Andrew George (Labour) talked about some of the amendments he had proposed:
That said, the purpose of my amendments…is primarily to ensure that Monitor’s role to ensure that anti-competitive behaviour is kept in its box is balanced by looking at the impact of competitive behaviour that might undermine the ability of NHS services to collaborate. The underlying purpose of amendments 1207 and 1208 is to neutralise or balance the new duty on Monitor to prevent anti-competitive practices that are against the interests of the people who use the services—in other words, patients—by also applying a duty to prevent anti-collaborative practices that would have the same effect.
…we need to ensure that we sustain the essential services. …certain services clearly need to integrate. An example is acute emergency trauma centres. If the orthopaedic, paediatric or ophthalmology services were removed from such essential centres, their ability to deal with a wide range of emergencies would be fundamentally undermined. They serve populations of between 250,000 and 500,000 people—sometimes more—and they are absolutely essential. We must ensure that we do not end up with a regulator that allows them to be undermined by imposing a duty on them not to act in an anti-competitive manner.
The House then went on to discuss the private patients’ cap. Emily Thornberry (Labour) made the crucial point:
…Baroness Williams…wrote an article…in which she says:
“One thing that remains…is the decision to lift the cap on private beds in foundation hospitals. Not only could that mean that many of our finest hospitals would gradually become private, it also means that inevitably foundation hospitals would be subject to European and British competition law.”
…the argument is about whether we should have a cap or not. If the House votes tonight to lift the cap, our constituents will ask how it can be that their representative has voted for a clause that allows private patients to fill up the national health service hospital paid for by those constituents’ taxes so that they will be pushed out of it.
The Health Minister Simon Burns defended the proposed change:
The cap is arbitrary and unfair. Several NHS trusts that are not subject to the private patient income cap have private incomes well in excess of many foundation trusts. Last year, four of the top 10 private income earners were NHS trusts—that is, without a cap. A few FTs have high private incomes simply because they did a few years ago. The cap locks FTs into keeping private income below 2002-03 levels and means that last year about 75% of FTs were severely restricted by caps of 1.5% or less. Meanwhile, patients at the Royal Marsden benefit from its cap being 31%, and it has consistently been rated as higher performing by the Care Quality Commission [part of the reason for this is that the RM does a lot of research and the cap allows some research and other activity].
…FTs will retain their principal legal purpose—to serve the NHS. This means that the majority of their income will continue to come from the NHS. With no shareholders, any profit they make will have to be ploughed back into the FT, and so will support that purpose of caring for NHS patients. The vast majority of FTs have little, if any, potential to increase private income, never mind the desire to do so. For them, NHS activity will remain the overwhelming majority of the work they do, if not all of their work. It is extremely unlikely that even the most entrepreneurial FTs with international reputations would seek to test the boundaries. Their commissioners, public and NHS staff governors would hold them to account in fulfilling their duties and serving their NHS patients.
Caroline Lucas made the ideological point:
I find it unacceptable that taxpayers’ money has ever been used to allow private patients to jump the queue and use NHS facilities. The history of the cap was all very interesting, but the bottom line is that it serves an important purpose, which is why it should stay. The Government argue that income from private patients is put back into the NHS and ultimately benefits the health service, but the reality is that when people become ill and need treatment, it is hard to justify asking them to wait longer because capacity in our NHS hospitals is being taken up by private patients. The bottom line is that an NHS hospital has to treat NHS patients, and I do not believe that we have adequate spare capacity sloshing about in the system to justify private queue-jumping into NHS hospitals.
…It is often argued that foundation trusts are about choice, but I would argue that such private treatment should be offered only when there is surplus provision in the system. It is one thing to talk about a choice of general goods and services, but it is enormously inefficient and massively costly to apply that kind of mentality to the health service. Now, we see the present Government trying to use the model introduced by the previous one to allow foundation trusts to do as they please, and lifting the cap on the income that can be derived from private sources.
The hundreds of constituents who are contacting me about this do not want private queue-jumping; they want NHS services paid for from taxation. The future of the NHS should be about developing whole systems, not isolated institutions, and private health care in the NHS should be phased out. The NHS needs to be about building networks across professional and institutional boundaries, not about creating new barriers. It needs to be about IT and information sharing, not reducing connectivity, and about getting more people treated in the community and in primary care.
Chris Leslie made an important follow-up clarification:
Long waiting lists matter because they are also the lifeblood of the private medical industry. We need only look at the advertising slogans of many private medical insurers to see how people with promises of “speedy service” and “getting your health situation sorted out quickly”. This, however, can happen in the context of NHS hospitals.
What we must do is ensure that we put the needs of NHS patients first. My worry about removing the private patient cap is that it changes the incentives relating to how the foundation trusts will work, putting revenue generation ahead of patient treatment. The allure of revenue will, of course, be there, but keeping waiting lists high is, in a sense, part of ensuring that revenue continues to come in. I want to see trusts focused absolutely and completely on reducing waiting times.
Another interesting outfall from the McDonald case: this was the former ballerina who wanted a continuation of all-night care, but whose local authority (let’s hear it again for those fine supporters of dignity in old age, Kensington and Chelsea) argued she should wear incontinence pads to save them some money, even though she was not incontinent. A legal website makes the following comment:
The cost of care forms an important part of personal injury compensation awards. In the past, Defendants have sought to argue that local authorities will ‘pick up the tab’ for providing care. This ruling brings into sharp focus what is taken into account in the assessment of care needs. It reflects the divergence between local authority assessment and assessment by independent care experts, as commonly used in personal injury and clinical negligence claims. It will now be harder for Defendants to claim that full care will necessarily be provided by local authorities.
So it seems that the lawyer’s response to this is that they can argue for higher personal injury compensation. I don’t mind that, but more to the point, what price the dignity that the present and past government both said was so important? If we are to have a right to some diginity, how much dignity, and who is going to make the professional judgments that meet a reasonable standard of personal diginty for older people. Clearly not the law. And clearly not Kensington and Chelsea. So how are we going to get good social care professional decisions authoritatively supported? Another job for the College of Social Work?
The legal comment: http://www.lexology.com/library/detail.aspx?g=a1b2ebac-8df8-4e27-ae9f-7055148b398b&utm_source=Lexology+Daily+Newsfeed&utm_medium=HTML+email+-+Body+-+General+section&utm_campaign=Lexology+subscriber+daily+feed&utm_content=Lexology+Daily+Newsfeed+2011-08-11&utm_term=http://www.lexology.com/library/detail.aspx?g=a1b2ebac-8df8-4e27-ae9f-7055148b398b&utm_source=Lexology+Daily+Newsfeed&utm_medium=HTML+email+-+Body+-+General+section&utm_campaign=Lexology+subscriber+daily+feed&utm_content=Lexology+Daily+Newsfeed+2011-08-11&utm_term=
Both this and the previous post about legal cases raise the question about discretionary decisions in social matters. How are social work professional decisions to be enforced in a cash-cutting political environment, when the UK is still a rich country in which the people in the street, I think, believe in dignity in care.
Apologies that the blog did a tizzy last week, while I was on holiday, and I’m tweaking the post on the palliative care funding review so that it reappears again today.
I’ve finally got to an overall view of the Palliative Care Funding Review, but inevitably my view of it is 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 this social care/palliative care blog will know of its aim to place palliative care within the context of wider social and health care.
The palliative care funding review here: http://palliativecarefunding.org.uk/wp-content/uploads/2011/06/PCFRFinal%20Report.pdf
The Dilnot report on adult social care funding here: https://www.wp.dh.gov.uk/carecommission/files/2011/07/Fairer-Care-Funding-Report.pdf (there are two other volumes: http://www.dilnotcommission.dh.gov.uk/2011/07/04/commission-report).
The Law Commission report of adult social care law here: http://www.justice.gov.uk/lawcommission/docs/lc326_adult_social_care.pdf
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 Review’s focused terms of references, I’m going to include some compare and contrast with how I would look at it from a social care point of view.
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 children’s 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; it’s 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 don’t 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 don’t 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, I’d 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 don’t 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 you’ve 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, isn’t Dilnot also trying to get the government to pay more for a service? Hasn’t 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 I’ve 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, that’s not true for the palliative care funding review, is that it’s helping the government’s 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 Dilnot’s 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, we’ve 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 assumption for free at the point of delivery. So it’s 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, we’re moving into end-of-life care here, not specialist palliative care, so it’s 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: ‘It’s all a bit like social care, isn’t it? No reason that people couldn’t 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 ‘Review’s’ perspective), but not so good if you’re George Osborne and trying to save money.
Balanced against this, the ‘Review’ offers some possibilities to meet the government’s 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, I’d be worrying about stimulating too much demand that I couldn’t 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 it’s 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-of-life care provision in social and health care will reduce the need for specialised palliative care 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.
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. I’m 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 there’s 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, people’s 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 well-being. 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 end of life and, even more wonderfully from a politician’s 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 (you’re 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-of-life 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.
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. It’s 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. There’s 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 patient’s 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 won’t 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 don’t have a focus on people’s 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, it’s 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 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 Review’s 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.
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. It’s 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 off-shoots of health problems, and people find the distinction drawn by the present system non-intuitive. 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 don’t think it is how continuing care is played by most commissioners at the moment. I know civil servants are rather gung-ho 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 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; that’s 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,m 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 that’s 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 don’t get it, they’ll 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). It’s 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 don’t say this can’t be organised, but I don’t 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.
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 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 Christopher’s 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 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.
On Southern Cross: here’s an interesting statistic. Southern Cross is the care home company that has just gone bust, after lingering on in difficulties for some months. A journalist submitted a Freedom of Information request to the Scottish regulator asking about complaints made about SC and its subsidiary. The regulator said ‘no’ because there were 841 complaints – 243 of which were upheld and 437 partially upheld – and it would cost too much to extract the details. The journo was hoping to get qualitative information about care in these homes as their present owner passes out of existence. Remembering that complaints to the regulator are likely to have gone through several stages at SC and possibly commissioning bodies such as local social work departments, this is an astounding number of complaints to have been upheld by the regulator, and it makes you wonder what the evidence is for the standard of care in these homes. And will the change in ownership mean that complaints about SC will now be lost in the future?
And remember, this was only about Scotland: what must be the level of complaint across the UK? And this is not only relevant to the unmourned Southern Cross: there are of course many other care home chains and other smaller-scale providers. Are there complaint statistics about each home provider? I’ve never seen any. If not why not? And who is analysing them for the qualitative information that they could provide? Obviously not the regulators, since it seems the Scottish regulator was not collating the complaints about this particular provider, so how can they really be regulating these providers?
If I were making an analogy, it looks very much to me like News International and the Metropolitan Police. An investigator of complaints collects up loads of data about bad practice, and then chooses to lose it in its filing cabinets. How is this information not relevant to assessing quality standards in social care?
The Press Gazette report here: http://www.pressgazette.co.uk/story.asp?sectioncode=1&storycode=47486&c=1
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 don’t 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. There’s 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.
The Dilnot Report here: https://www.wp.dh.gov.uk/carecommission/files/2011/07/Fairer-Care-Funding-Report.pdf
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.
It is commissioned by both the Department of Health and the Treasury, so it’s clearly a money thing, deriving from a widespread politico-economic view that ‘we know we can’t afford this but we know sooner or later we’ll have to do something: please tell us something we want to hear’.I think the starting point is clearly: ‘we can’t 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 he’s 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 government’s interests, knowledgeable about how it works from several different points of view. Also the lead, Dilnot, is clearly not from the sector, so they’re 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’.
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: that’s 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 they’re clearly important:
Choice, fairness, value for money, sustainability.
Not really a lot on quality of care there either.
As I’m working my way through these reports, I’m coming to fairly discrete bits of them, and posting a comment on these. This is about what the Dilnot report on social care funding says about carers funding and services. Not too hopeful, I’m afraid.
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 don’t keep separate tranches of money, they mostly can’t 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 don’t 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 it’s less personal). So this is a naïve comment, which is holding out a hope that is not there.
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 user’s care package. There is a good deal of evidence that they don’t 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 carer’s 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 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 Carer’s 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 – remmeber 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 don’t 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 (I’m 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 I’m 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.
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 Carer’s Strategy here:
If you want to see the unrefreshed document and other things go here:
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=9FfnTXGF8vvyX3yVJ34hyrH3YzWc8fQDJBGyxtpYBJ3QNT98WNhr!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. That’s not advocacy, that’s telling people what’s good for them. My impression is that it’s only the Scots who are interested in advocacy. the England government seems to think: Let’s make sure the carers can’t really press what they want and need.
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 you’ve 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. I’ve come across a lot of carers who are frustrated by having given their all to look after someone for many years, and then feel they’re 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.
So it seems to me that carers strategies are stuck, need further refreshing and the Department of Health needs to click on the icon.
Normally I go through reports and put the comment alongside the account of the report. However, the Dilnot and Palliative care funding reviews are both central to this blog and so I’ll be dealing with a lot of detail. So I’m putting up front in this post an overall comment, and then will go into detail, drawing on the reports, in subsequent posts.
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 it’s still mainly the future for most people. So they’ve 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 government pays some, the person needing care pays some. 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 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.
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, isn’t 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. Isn’t 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 they’ve got to do as much of their bit as they can, but the insecurity has to be taken by the government first, not last.
And the other big misunderstanding is that big insecurity is not the cost: the big insecurity is the risk of poor quality. Let’s 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: it’s 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 it’s not something that you would spend a big slice of your life doing if you could avoid it. And it’s 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 disabilty of illness, you can’t 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. It’s OK because the government, if it’s paying, and private individuals if they’re 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 it’s OK.
It’s also OK care because it’s never what people want. I’ve said this before and I’ll say it again: when I’m frail and elderly I want my lovely competent wife to care for me, but there’s only one of her and she’ll be frail too by that time. So any care I get will be OK at best, because it won’t be her. She’s a bit less sure about this, because she’s not too sure I’m 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 don’t 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 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 don’t quite like well enough to hitch up with. It’s the same with paid carers: you get possibly pleasant but bored and harried people whom you don’t 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 we’re supposed to commit tens of thousands of our money or equity in our house to insure for? People won’t go for this insurance until the quality is massively improved and they feel secure in what they’re going to get. They don’t see at the moment how they’re going to manage all this, so they’ll leave it in the hope that it might not be the worst for them, and if it is the worst, they’d 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.