Over the Christmas period, I missed the government consultation on bereavement benefits, but you’ve got until 12^th March to reply. And there’s lots of useful info in the consultation document.

There are three bereavement benefits currently payable:

Bereavement Payment – a one-off tax-free payment of £2,000 payable to someone after their wife, husband or civil partner has died.

Bereavement Allowance – a taxable weekly benefit which can be paid to someone for up to 52 weeks from the date of death of their wife, husband or civil partner if they are over 45 and under State Pension age.

Widowed Parent’s Allowance – a taxable weekly benefit which may be payable to a parent whose husband, wife or civil partner has died if they have at least one child for whom they receive Child Benefit. It is payable until the claimant reaches State Pension age or upon cohabiting or remarriage/formation of civil partnership.

So that’s basically a cash sum to pay for the funeral and other expenses at the time, a weekly allowance for re-adjustment immediately after the death of a partner and then an extra payment if you are responsible for a child. The government’s position is that it’s too complicated and, playing their current relooping Mpeg (this is the new form of a cracked record – who has records any longer? Do young people know that they could get cracks?), it disconnects people from the employment market, so bereaved people are not incentivised to get back into work (which of course would be good for them and save the government money).

The first aim of their proposed reforms are that people should be supported by normal income support, rather than special measures for bereaved people, so they want to have a bigger up-front  bereavement payment for the transitional period. This of course will push all bereaved people sooner rather than later into the standard ‘get work or else’ approach of the present government. There is a whole paragraph about the ‘lack of conditionality’, which means there’s no requirement to seek employment as a condition of getting the benefit. I imagine people did not think about that back in the 20s when widows benefits were first thought of. I don’t know how I feel about it now: on the one hand I recognise that most women as well as men who are bereaved now do go out to work and want to do so, and tying them into help and encouragement to move forward into work is useful. On the other hand, making it a condition of a benefit has a harsh feeling about it that naïf old me sort of feels I don’t want to be part of our welfare state.

They want to remove the age criterion (civil servants are now so illiterate, they don’t know the singular of criteria, but I do) and comment that the combination of the age limit and different contribution requirements for the longer-term benefits means…

that around 80 per cent of Bereavement Allowance recipients and 46 per cent of Widowed Parent’s Allowance recipients do not receive the maximum payment.

As a result they suffer from greater uncertainty, which is bad when they are already suffering from the ‘loss of control’ in bereavement and emotional turmoil which means they don’t take in how the benefits are calculated. Alongside the ‘conditionality’ approach, I find this claimed concern with people’s feelings a bit hard to believe; it feels out of place in the generally callous style of the text. Perhaps they should give their consultations to social workers to vet for niceness, as well as the Plain English people for readability. Or perhaps they don’t feel social workers are nice enough nowadays to make a difference.

Then, as we know, there is a plan to have a universal benefit the same for everyone, to simplify the system, and the aim will be to have bereavement benefits alongside this. So most regular provision will be from the universal benefit, if you are eligible for it. However, they did research which shows that most people suffer a period of disruption in the immediate aftermath of bereavement and are proposing to target these benefits there.

There are two options they are consulting on:

1                    Pay an increased lump sum payment in the region of £6,000 for all claimants without dependent children and £10,000 for claimants with dependent children

2                    Pay a lump sum in the region of £3,000 and a monthly allowance of £250 for a period of 1 year for recipients without dependent children; and a lump sum in the region of £5,000 and a monthly allowance of £400 for a period of 1 year for recipients with dependent children.

Obviously option 1 would be quick and easy, while option two would maintain the security of a sense of support for a longer (but not too long) period. The sums proposed seem decent and realistic.

They are also consulting about whether to simplify the contribution requirements to whether the deceased partner contributed for the tax year before the death; the problem with this is that if they were palliative care patients they would have been ill, so they might well not have made those contributions so close to the date. Another option is to remove the remarriage disentitlement, on the grounds that they would not be paying the benefits for very long and it is unlikely that most people will be ready to partner up again, so they simplify the arrangements (and reduce civil servant time and the length of application forms) – always a good thing. This of course would generally be true, although I’m sure any palliative care social worker can tell you about the widows, or more often widowers, who have lined up the replacement partner well before the death. Perhaps even the DWP doesn’t have the life experience to be aware of that sort of thing.

Department of Work and Pensions (2011) Public consultation: Bereavement Benefit for the 21st Century. (Cm 8221) London: TSO.

The consultation document on the web: http://www.dwp.gov.uk/docs/bereavement-benefit.pdf

In a legal commentary on R (on the application of (1) Sefton Care Association (2) Melton Health Care Ltd (3) Westcliffe Manor Nursing Home (4) Benridge Care Homes Ltd (5) Craignare Care Home) v Sefton Council, (a case heard in November 2011) there is a nice crisp comment from the lawyers. The court decided that:

the local authority had failed adequately to investigate or address the actual costs of care and had thereby failed to have due regard to those costs, contrary to both the guidance issued by the secretary of state and that issued by the Department of Health

the local authority was clearly under a duty to consult with the care home proprietors. There had, however, been no consultation in any meaningful sense and the local authority had therefore failed in its duty.

What this means for social landlords.

Here comes the comment:

Local authorities cannot just cut the fees it pays in a ‘cavalier fashion’ and in effect, say ‘tough luck’ to providers.

This may not seem reasonable to local authorities, who are under all sorts of pressure, but it does make sense to any normal person. Once a care home takes on a resident, they are stuck with them, unless they are going to upheave their lives again by sending them somewhere cheaper. So a local authority should be serious when it assesses what is a reasonable charge.

I wonder if the same applies to the commissioners of healthcare services, since they mainly do not pay the full cost of providing hospices. The previous government looked at the costs of providing palliative care and decided to carry right on relying on charities. but policy, in the UK and internationally, is that people are entitled to palliative care. The Conservative view is that hospices are a good thing, and a wonderful example of the Big Society. It is views like these that lead one to the cynicism that their view of the big society is something someone other than the government pays for.

The legal comment at Lexology: http://www.lexology.com/library/detail.aspx?g=1867ece5-5277-4902-9db0-ae264cb6d08b&utm_source=Lexology+Daily+Newsfeed&utm_medium=HTML+email+-+Body+-+General+section&utm_campaign=Lexology+subscriber+daily+feed&utm_content=Lexology+Daily+Newsfeed+2011-11-29&utm_term=

The government is thinking of introducing a ‘duty of candour’ in the NHS. If it does, social care cannot be far behind: why would you have candour in health and not in social care?

The consultation  document is interesting because it makes clear that the professional advice is to be open, explain and apologise when things go wrong and the legal advice is that explaining and apologising does not admit liability. So, the jumpiness among managers about admitting anything is inappropriate.

As a beginning social worker in local government, I was always told never to say what was going to happen on the grounds that it very well might not, local government and regulations being what they are. I believe this attitude is the main source of the complaints that well-meaning commentators make about local government officials. As with bumping my car against someone else’s, you are always taught never to say anything. And what with the addition of the pressures of the past twenty years of businessification in public services to market your organisation and say how good it is at all times, it’s not surprising that candour is rarely to be seen.

But how can you enforce candour, when most professionals are trained to be elegantly non-committal and most employees not to drop the organisation in it?

Here’s what’s proposed:

There must be an appropriate investigation undertaken to establish the facts of the incident. This should be consistent with published guidance

Then there should be a communication with patients, carers and families with:

An apology – a sincere expression of sorrow or regret for the harm caused during the treatment or care. Saying sorry is not an admission of liability and is the right thing to do.

A step-by-step explanation of what happened, in plain English, based on the facts known at the time, as soon as is practicable after the incident is identified. By this, we mean as soon as practicable after the incident is reported to local risk management systems, and within 5 working days at most. If necessary any meetings with patients or their representatives can take place after the 5 working day period provided the offer of a meeting occurs within 5 days.

Both written and face-to-face explanations and apologies, unless the patients and their families/carers explicitly decline an offer of a meeting. This must be clearly recorded and open to audit.

Full written documentation of any meetings, according to the principles in the Being Open guidance, with these records filed separately from medical records and copies shared with the patient and their family/carer. These records will form the audit trail for use in cases of possible breach of the contractual openness requirement.

The consultation notes that since, under the proposed Health and Social Care Bill, clinicians will be involved in everything, they are likely to be tainted by or aware of incidents that should be apologised for. The document proposes that they should report failures to be open to the local clinical commissioning group.  There is also the problem that it is sometimes hard to find out when things have gone wrong.

The difficult I see with this is that, aside from the business and marketing pressures in a competitive system to seek to close down complaints or concerns, people are not good at openly admitting they were wrong, and it is not a good move to snitch on others, unless the failure is gross, when you have to continue to work with them.

Moreover I don’t think a big investigation followed by a formal letter and meetings is about being candid. That’s about standing up and saying that you got it wrong. The problem is that most of us also want to be able to say that we tried, that we did our best, that it seemed reasonable at the time. My wife never accepts that as an excuse for making a mess at home and I suspect that people would rather not hear all that when they say they want a simple apology and a statement that it’ll never happen again.

And that’s another thing, what with the pressures all services are under, it probably will happen again so that promise will not work either.

No, I think a duty of candour is unlikely to be a success, due to human nature rather than anything else. It’s another of those things that politicians should have thought twice about before promising.

Anyway, whenever was a government candid about something that went wrong? Who are they to tell us? And isn’t this whole business of apologising for the unfortunate acts and thoughts of a while ago getting a bit out of hand?

The consultation document: Department of Health (2011) Implementing a ‘Duty of Candour’; a new contractual requirement on providers: Proposals for consultation. London: DH. http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_130443.pdf

The government may not have got the Health and Social Care Bill through Parliament yet, but since GPs are slated as the people at the front-line of service rationing in the new regime, here is the GPs guide to rationing ethically. Apparently, you should aim to do as much good as you can, and if you can’t do good, be fair. And tell your patients when your decision is because you are rationing and not because it’s best for them. An interesting guide to the dilemmas of rationing, and since social workers also ration services, they could not do better than giving it a good read.

Oswald, M. and Cox, D. (2011) Making Difficult Choices: Ethical Commissioning Guidance to General Practitioners. London: Royal College of General Practitioners

On the web: http://www.rcgp.org.uk/pdf/RCGP%20ethical%20commissioning%20guidance%20v1.pdf

I’ve been confused about what’s happening about the coroners’ service for some time, so I appreciate a House of Commons Research briefing which explains what’s going on.

It seems to have been a right lash-up. The present proposal is to have an Office of the Chief  Coroner as part of the Department of Justice, without having a chief coroner, whose functions will be spread around various senior judges. The previous government legislated, and most people involved supported it, to reform the system for doing coroners’ inquests in the Coroners and Justice Act 2009. The present government cut an important aspect of the reform, having an Office of the Chief Coroner, on what seem to have been mainly financial grounds – they also have some objections in principle. The House of Lords, set onto this issue by Baroness Finlay – good old Ilora – is there anyone else in the House of Lords that concerns themselves with death and dying issues? – put a stop to this by re-writing the government’s proposals. The government is now making new proposals to fit in with this which seem to involve doing as little as possible. The junior minister, Jonathan Djanogly, is trying his best to make sure that change will be as little and cost as little as he can achieve. He is still facing more or less universal opposition from everyone who actually knows anything about it.

Why is this minor issue so important that it has achieved a government reversal in the House of Lords and a general outcry? It seems to be informed mainly by a cost-cutting mentality rather than actual governmental ill-will. Djanogly is a rich man revealed by the Guardian as having a conflict of interests in cutting legal aid, since it might potentially make even more money for his insurance interests. This is because it would mean that people have to enrich the insurance companies by insuring themselves against the need to take legal action to enforce their rights. It also means stopping poor people from having the chance to go to law to stop rich corporations and the like from oppressing them. The Guardian report here: http://www.guardian.co.uk/politics/2011/sep/16/conservative-mp-legal-aid-cuts, but they’ve been harping on about it over the weeks as they find out more about Mr Djanogly; you can find a small item about him most days in the Guardian it seems, often linked to Dr Fox and his demise as a cabinet minister for conflicts of interest. However, as with the coroners’ service, his main aim seems to be saving money on legal aid; just the same with coroners reform.

There also seems to be a bit of a ‘what do we need to enforce all these rights for?’ mentality, too.  Being mainly very rich men (and not having very many women who have to deal with the realities of life even in rich men’s families’), Cabinet members cannot quite get their heads round the fact that people who don’t have public school accents and friends in high places often have problems in getting big corporations and governments to do the reasonable thing. While I don’t suspect actual antipathy to coroners, I think there is a coherent attitude within the present government that says all regulation of what big corporations and governments do is just trouble-making red tape and better got rid of. And you can’t help noticing that coroners have occasionally been critical of government actions, for example in Iraq and Afghanistan. It is noticeable that in transferring some chief coroner functions to the Lord Cief Justice (who is expected to delegate them – beneath his notice presumably) that the immediate training needs mentioned about about sevrice personnel. Perhaps the coroners can be trained into doing what the government wants. Having most of this function within the Ministry of Justice, alongside people whose main job is supporting the government view on things, is hardly creating independent judicial review in a service that looks at how people have died when they die in suspicious circumstances. You may have forgotten that this slow-moving reform has partly come about because for a long time nobody noticed Dr Shipman killing an awful lot of his patients.

Checking that there is no funny business in how someone has died is, or should be, very important to everyone; and the government too. And palliative care social workers will be only too well aware that bereaved people often value the public review of the death of their loved one as a way of setting them on the path to renewal of their lives after what is for them often a very difficult experience.

As Baroness Finlay pointed out, making coroners more efficient and giving them training ought not to be a big thing, indeed it’s rather obvious. But the previous government planned to put them into a Ferrari administration at vast expense, rather than the old banger of an administration that most palliative care social workers experience. One understands that being an independent judicial officer requires good administration around you, because you have to respond competently to problems. However many millions for setting up the office does seem a bit over the top.

You can get to the briefing paper here: http://www.parliament.uk/briefing-papers/SN05721; it shows you how to get in touch with the campaigners if you should want to, and it shows you what a Ferrari administration can do in supporting people; would that we all had a House of Commons library to help us in knowing what is going on.

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.

In an interesting literature review on citizen participation, Paul Sanderson implies a lot of thoughtful criticism of the ‘participation at all costs’ brigade. His work suggests that we have to be careful of assuming that citizens participating in official decisions is always a good thing. It depends on how you organise it and what they are participating in. There’s a bit of a critique of the Arnstein ladder of participation, presented as the way to understand participation in a lot of social work literature. This puts ‘citizen control’ at the top of the list, and ‘therapy’ near the bottom alongside manipulation as a form of non-participation. This is simply silly: they are different things to be used for different purposes, and Sanderson accurately reports the criticism that its use represents a political preference for particular forms of participation.

Sanderson distinguishes, in the context of the Conservative ‘Big Society’ policy between participation (like clients sitting on a committee to write a new social work course), co-production (being involved in delivering services, like clients being involved in training social workers) and ‘co-regulation’ (being involved in checking that services are OK – like clients being involved in validation of social work courses). Sanderson points out the ‘democratic deficit’, that increased efforts to get citizen participation in all sorts of activities is going alongside a marked reduction in people taking part in elections and voting, which you might call full democratic participation. Democratic systems are obviously not working, so we look for other forms of participation. There is then a problem about representativeness, but this also exists in elections. As societies get increasingly diverse, broad elective mechanisms are never going to get at the potential range of interests. People interested in politics tend to bemoan reducing involvement in political activity, but in my view this reflects the reality that traditional politics no longer represents and interests people. So what do you do?

Why do citizens get involved? Sanderson says this is for a variety of reasons. People who are keen on participation will tell you it is because they want change: maybe, but some forms of participation also give people advantages, and they get involved for that reason. It’s often said that the reason why complaints systems are important in health and social care is that it allows people to contribute to improvements in the services that they have experienced. This is self-serving managerial nonsense, although you sometimes hear it from self-justifying reports about people complaining about their local hospital ‘nobody should experience again what we went through’. The reality is that, like me, most people dine out on hair-raising stories of incompetence – it gets good laughs – but think the shambles is probably unreformable, because of all the barriers in the way. The way to get change in our society is to attach money to it. You get your money back if the train is late; you get compensation if you can prove they made a mess of it. That is the real way of getting managers moving: their budgets are suffering. This is why you get all this government whining about the ‘compensation’ culture; it puts  a bit of pressure on to change.

Sanderson is all very rational and evidence-based, and what he makes clear is that you have to think who you want to be involved, how you can do that, what yopur aims are and what their aims are – do you want them to describe their experience and express their views? Or do you want them to take part in some deliberative process that can contribute to your policy? My experience of health and social care is that politicians think only they have the right to make policy, but increasingly the democratic deficit means that their right is leaching away. And a lot of managers would rather be waterboarded that have real people involved in suggesting to them what they might do (let alone getting involved in regulating their outcomes).

And sometimes with good reason. One of the very useful points that Sanderson makes is that you have to decide on the role of research evidence, professional expertise and knowledge of the full situation in making decisions. Frankly, a lot of the time, citizen opinion is just plain wrong, based on inadequate evidence, unworkable and participation is timewasting. So the message of this report is to think very carefully what and how, and with what useful outcomes, you are going to encourage citizen participation, and plan accordingly. You also need to look at how you are going to balance the different types of people involved and their influence on the final decision. It is also worth thinking about whether it is important to engage with the stakeholder in a decision (who may be self-interested), or with people who are not very affected by it (who may be more independent, but are less likely to be bothered to get involved – as the government is finding in its desire to pass planning decisions on to local groups – they say why should we do a planning official’s job for them?). And also that the evidence that it is useful in achieving the objectives that people set for it is a bit thin, although decisionmaking, service quality, and sense of community are all enhanced by at least some forms of participation in some circumstances.

Sanderson, P. (2011) The Citizen in Regulation: A Report on the Evidence Base for The Local Better Regulation Office. Cambridge: Centre for Housing and Planning Research University of Cambridge.

On the internet here: http://www.lbro.org.uk/docs/citizen-in-regulation.pdf

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:

http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110906/debtext/110906-0001.htm#11090649000003

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.

Palliative care funding, Dilnot’s funding proposals and the future of end-of-life 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 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.

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. 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.

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. 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.

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. 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.

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 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.