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.

I’ve started looking at the Palliative Care Funding Review, Final Report. And as with Dilnot, I haven’t finished with it, and give you here again the link: http://palliativecarefunding.org.uk/wp-content/uploads/2011/06/PCFRFinal%20Report.pdf. I’ll eventually discuss it in overview. In the meantime, as I go through, I’ll post some comments on particular bits.

And here, quoted on page 51, is a hospice chief executive still living in the dark ages:

‘While actual care components may be delivered in a variety of settings, provided by a range of organisations and funded from multiple sources, the assessment of needs and coordination of the care plan must sit within statutory funded services and be the responsibility of an NHS key worker’ Hospice Chief Executive

You have to ask: why? Two whys – why statutory and why NHS?

There is considerable research evidence worldwide that you can commission and provide assessment and coordination outside the state. In fact, it has advantages, because you then have an independent view of needs, and can develop advocacy on behalf of the service user and carer for their needs, as I was arguing with carers’  services last week: July 8th or search for ‘carers’.

Then in many areas the person with the skills and access to a coordinated view of palliative care services is sitting in a voluntary sector hospice. It’s perfectly possible for that planning and coordination to be commissioned in a voluntary sector organisation, no need for it to be an NHS person. And actually the people with experience and trained in skill in coordination are social workers, so you could think about the local authority as well, since the NHS is supposed to be working with them.

Wake up at the back there: the government is trying to make the NHS more flexible.

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.

Two crucial reports have come out before and after last weekend. I started writing about them, but it got so long, I’m breaking up the posts: this one mainly gives you the links.

The first is the report on funding palliative care:

The report here: http://palliativecarefunding.org.uk/wp-content/uploads/2011/06/PCFRFinal%20Report.pdf

Palliative care Funding Review (2011) Funding the Right Care and Support for Everyone: Creating a Fair and Transparent Funding System; the Final Report of the Palliative Care Funding Review. London: Palliative Care Funding Review.

This report, commissioned by the Department of Health aims to arrive at a funding mechanism for palliative care. The Review has a website: http://palliativecarefunding.org.uk

The second, and more important one, is the much-awaited Dilnot review of social care funding.

The Dilnot Report here: https://www.wp.dh.gov.uk/carecommission/files/2011/07/Fairer-Care-Funding-Report.pdf

Commission on Funding of Care and Support (2011) Fairer Care Funding: The Report of the Commission on Funding of Care and Support. London: Commission on Funding of Care and Support.

This was also commissioned by the Department of Health and, it seems, the Chancellor of the Exchequer.

It connects with the Department’s social care policy statement:

Policy statement here: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_121971.pdf

Department of Health (2010) A Vision for Adult Social Care: Capable Communities and Active Citizens. London: Department of Health.

It also connects with the Law Commission report on social care law, because the government will have to decide how it is going to implement the social care report, and then how the law is going to be shaped to support it.

Law Commission report here: http://www.justice.gov.uk/lawcommission/docs/lc326_adult_social_care.pdf

The Law Commission (2011) Adult Social Care (Law Com 326)(HC 941) London TSO.

Isn’t it interesting that nowadays all these reviews, which are supposed to be independent, have their own logos and websites, instead of being clearly being clearly the product of the Department that commissioned them? Actually The Dilnot review has a heartening message telling you how wonderful its results are, which at one time would have been addressed to the Secretary of State and pointed out how it answered the questions he asked. Now, it is a breezy personal statement from the three important people in the review to us, the public. All this, I think, is designed to say how independent these people are, suggest that they invented what they want to say, in spite of the fact that the Secretary of State actually specified their terms of reference and so had a strong influence on the answers they have come up with. Except for the Law Commission which reports to Parliament, and so its reports have a gravitas that the others don’t: they are a serious bunch don’t have to sell their report to the public.

I reprint the following post from one of my other blogs (http://intsw.blogspot.com) which comments on social work sisues as they come up round the world. This has relevance to palliative care, not least because many palliative care practitioners do their work because of some religious commitment. There are also some palliative care providers who are based in particular religions. All hospices are enjoined by quality regulators to accept and implement equalities policies: so would a Catholic hospice say they can’t continue to provide services because they are required to provide them equally to gay and lesbian people as to people in heterosexual relationships? I don’t hear that they are doing so. Most hospices are open to all faiths and beliefs as a matter of principle.

Does all practice in a religious social work agency have to reflect that religion?

An American Catholic archbishop has made a speech that raises issues that should be considered by Catholic social work agencies, agencies and social work practitioners with other religious or denominational commitments and anyone who is thinking about: ‘what is the nature of social work’?

The main point he is making is that if you are going to call yourself a Catholic social agency or Catholic social worker your practice has to reflect and espouse your Catholic beliefs. Otherwise stop calling yourself a Catholic.

I think there are some problems with this point of view. To start with, I know some Catholic agencies that say: ‘we are Catholics providing services for everyone’. I remember Catholic Social Services in Liverpool, when I was involved with them as saying this: I don’t know what their policy is now. I also remember some children that I was responsible on behalf of local authority who were ‘in care’ (being ‘looked after’ in current jargon) in a children’s home run by nuns from a Catholic children’s agency; again, Catholics helping children in general rather than just Catholic children.

There are many care and aid agencies that operate with wider communities in this way. If they are going to do social work, they will have to accept different denominational and cultural beliefs and values and behave in a neutral way about these; thus not including their Catholic emphasis in everything that they do. The aim of a social agency is not to be ‘useful to the Gospel’ as the Archbishop puts it, in this way. They are useful to the Gospel by demonstrating that Christians care about everyone, whoever they are.

Archbishop Chaput’s point, though, is a bit different. He is commenting on a situation that we have also experienced in the UK, and will probably be a worldwide issue. That is, if equalities legislation says you cannot discriminate against gay and lesbian people in an adoption and fostering service, you shouldn’t run an adoption  and fostering service.

There is a practical problem here: how far does a Catholic go? Do Catholic social workers or agencies have nothing to do with a child care system that accepts decision-making on these grounds that are so anti-Catholic. In that case, Catholic people rule themselves out of engagement with increasingly wide swathes of social provision. Or do they accept that some of it goes on, but avoid direct involvement with it. You can almost see the Catholic working in a school, jumping back faced with a child of gay adoptive parents saying: ‘Ugh, no! We cannot teach that person, they are contaminated’. Well no, most Catholics I know and most Christians, maintain a concern for others and do their job with others, even though they may not like the social trends reflected in some of the things that happen. So a Catholic agency or a Catholic social worker should not be saying: ‘we don’t go there’.

The Archbishop is quoted as saying: ‘Catholic ministries “have the duty to faithfully embody Catholic beliefs on marriage, the family, social justice, sexuality, abortion and other important issues. And if the state refuses to allow those Catholic ministries to be faithful in their services through legal or financial bullying,” he added, “then as a matter of integrity, they should end their services.”

There’s a broader ethical point: if you agree to provide services to the public, you have to accept that the society in which that public lives may not agree with you about many of the things you believe, and a public service means an equal service for all the public, not the ones you happen to agree with. If they don’t agree, and the law, which enacts the general settlement in a society about an issue, supports them, a Christian should not just take their bat and ball home. To me, then, this stance is not Christian, and so therefore cannot be very Catholic.

More important, it is not and can never be social work. The whole point about social work is that it is concerned with achieving more solidarity and resilience in social relationships among all peoples. An agency or a practitioner that says: ‘We don’t do these kinds of social relationships’ cannot be a social work agency or practitioner because their social preferences detract from general social engagement.

Of course, any agency can decide on an admissions policy that limits the range of people and issues that that they deal with. I know several Jewish agencies that focus on providing services for Jewish people in their area only and several Muslim and Hindu agencies whose style, presentation and policy means that they are only likely to attract clients from their particular community. but they don’t say: ‘We’re not going to have anything to do with the way in which most of society wants to play ball’. You’re cutting yourself off from that society, and with a good deal of arrogance too.

A bit of Christan humility means taking part in society, and not rejecting fundamental principles about how that society is run, such as equality with people who you don’t like and don’t agree with. I don’t want to see Christians of any kind (or any other religion) cutting themselves off in this kind of way. What does a Catholic social worker who is committed to equality and who wants to work in adoption and fostering, a vital and valued service, do? Catholic agencies are closed to them, does it mean all practice in this area is closed to them, too? I suppose the Archbishop would say that in their professional practice they are not pursuing a ‘Christian ministry’. Yes, but can’t a valuable social agency do the same thing?

The account of the speech by Archbishop Chaput: : http://www.catholicnewsagency.com/news/archbishop-chaput-warns-about-catholic-institutions-losing-religious-identity/

The interesting online journal Music and Arts in Action, from the University of Exeter recently had a special issue on Music and the Arts in Health and Wellbeing. This inlcudes a long artucle on the St Christopher’s Schools Project, a public education project that helps children to be more in touch with death and dying; it also has a good piece on arts work with people with dementia.

http://musicandartsinaction.net/index.php/maia/index

Starting point: older people are the main issue in the NHS reforms

There’s been a flurry of activity on the NHS Reforms, which have been becalmed by a listening exercise after a lot of political and professional protest. Of course, it’s a Health and Social Care Bill that’s been held up, and is apparently going to be reconsidered in House of Commons Committee in (probably) July, but the concern about social care has been sotto voce; the main social care element is to get rid of the GSCC. However, do not be deceived: all this has considerable significance for the political position of social care, and probably also of palliative care.

Let’s start from a social care/palliative care view of the issues. The big client group in both areas is older people; and it’s a growing client group. Not growing quickly, but by 2030 the post-war baby boomers will be well into the age range that uses health and social care in a big way (myself among them if I last that long – I’m planning to be a charmingly dotty old social care client – this is the best personality style to get people to provide services for you). As we saw when looking at the Nuffield study last week, typical usage of social care in the last year of life grows slowly in the latter phase of your old age, and in the last few months you become very expensive because you get lots of in-patient treatments. So it is cheap to provide for most people until they get near the end, although there will be some hips, knees, heart bypasses and boomps-a-daisy (injuries through falls) to be coped with in the meantime, but that can be a bit more planned and strung out. Then if you do the end of life well (look back at my posts on the end-of-life social care framework) you can stop a lot of emergency admissions to hospital care and cut down the costs of healthcare substantially and everyone would still think the care was wonderful.

Unfortunately, although voters would doubtless be very pleased to see improved social care, the political problem there is that people have to contribute to the cost of it and don’t like whittling away their family’s wealth in doing so. They much prefer an NHS model of free care, but are realising that this is not possible. So they don’t like to think about the government spending the money on social care, even though this would be the best option for most people. they want to have as much through the NHS as possible. The political problem has pushed back genuine integration of social care into this legislation because we are waiting for the Dilnot report in the next few months, which is going to have yet another go at suggesting how to get round the social care costs issue. Until that one is sorted out, you cannot have a rational discussion about where we’re going with NHS care, because the only rational way to think about it is in tandem with social care for older people, particularly those who are nearing the end of life.

But even so, the reality is that for the NHS, as well as social care, the big client group of odler people will mainly need community and primary healthcare from their GPs and a modicum of social care for a minority. Also, a lot of mentally ill, learning and physically disabled people have long-term care needs, which are relatively expensive because they’re long-term but are fairly predictable and do not cost a lot per person. These are the groups of people who the NHS should be concentrating on. However because the voters think that what they need to worry about is the hi-tech care they get if they are in a road accident or have a heart attack or some other serious illness when young, and they want to be sure that all the drugs and clever doctor things are available pronto from their local hospital, we are getting all this suspicion about these plans. It is clear that it would be fine it they got them more efficiently from a less local hospital that has properly geared up emergency department to do the skilled job of dealing with these occasional problems, but that feels a bit less certain, and the picture of the local place closing raises insecurity.

It may seem impossibly romantic to hanker after your local NHS hospital, but actually I wonder if people who think this way are reflecting a genuine preference that we should be thinking about. Lord Darzi (remember him? a doctor recruited as a minister to support New Labour’s attempt to promote local care) had an idea of community-based polyclinics for London and beyond which does reflect the need for a well-planned system of local care. My friends in European countries are not so worried about local general hospitals, happily accepting the regional specialist provision, because they have access to nearly everything but the seriously hi-tech quite locally.

Look at the mortality statistics: mostly people don’t die between 1 and 65. And, looking at the budgets, mostly they cost the NHS very little until they are in their upper 70s. So, it is a reasonable aim to save money by putting the clever doctor things a bit further away, getting us fitter and giving us all statins so that we don’t have heart attacks. Unfortunately, the voting public seems to think this is all a trick to take away the comfort blanket of their local NHS hospital. We should go back to Lord Darzi, because local general-purpose treatment and investigation provision would be genuinely welcomed, even though the hi-tech doctors don’t like it – it’s not whizzy enough for them. But my two recent cataract operations did not, I fancy, need to be done within the boundary of a large general hospital. A polyclinic would have been ideal.

So, the main problems that lead Lansley, the Secretary of State for Health, the coalition and people such as Alan Milburn (the former New Labour Health Secretary who emphasised competition when he was in power) to want substantial reforms are to deal with the real issues of:

-         demographic change (a growing population of older people making more extensive demands on the NHS), and

-         medical advance (the demand for ever more costly medical interventions as the doctors get cleverer at managing more serious illness).

There are some doubts about the importance of these. For a start, the big increases in the older population are a decade or more away, although o courfse, we have to work up to them. More important, if community care and end-of-life services for older people were really made to work, the demand on hospitals would be much lessened. And research that allowed doctors to manage older people’s many physical conditions better over the long-term are likely to reduce the cost of long-term conditions to the NHS, because most of it would be done in the community or in care homes. So what the Bill should actually be about is improving social care, including a good dollop of effective advance care planning for the end of life, with a little bit of NHS fiddling around the edges. But the political commitment to the NHS means a focus on convincing people that the nasty Tories not going to take away the beloved local hospital, that most people are probably not going to use much. As well as that, their eneds could probably be met by specilaised regional centres and better local investigation and treatment.

Substantial increases in much cheaper age-proofing of general public and commercial services, so that older people could carry on under their own steam for much longer than they can now would delay and reduce demand for expensive social and health care. Really effective social care provision would also reduce the demand on expensive hospital provision. The reason for the focus on GP control in the NHS reforms was that the GPs are the centre of providing for the massive number of people needing long-term care, most of which can be provided in the community, and a lot more of which could be provided if we stopped sending people to expensive hospitals. Incentivising GPs to provide community health care for older people would hold back the rising costs of NHS hospitals. It was just this that the hospital doctors and nurses feared: their status, and some of the elite status of medicine over the denigrated social care comes from the scientific status of constant medical advance. We should be spending some of this research money finding out how we can improve community provision for long-term care.

So what’s been going on? There have been three events within the last week or so:

- The Prime Minister made a speech confirming the political support for rowing back on the complained-about aspects of the reforms

- The NHS Future Forum reported on the ‘listening’ exercise, in which views on how to adjust the reforms were collected

- The government responded officially to these, accepting the main import of them. Of course, we don’t know the detail of how they’ll change the Bill to take account of them. Also, there have been some more individual reactions from Lansley and from Alan Milburn.

Cameron accepting the main changes

Cameron’s speech confirming the acceptance of the main points of the proposed changes, given on 7^th June 2011, in advance of the Report of the Future Commission being published, is at:

http://www.conservatives.com/News/Speeches/2011/06/David_Cameron_Protecting_the_NHS_for_tomorrow.aspx

His argument is for getting the best possible value for money and big variations in quality across the country. These current problems are forerunners of significant difficulties of over-stretch if we don’t plan for larger demands from older people and medical advance in the future. As people have thought about it, there is a lot of support for these plans, but we need to get them right…’our vision of an NHS that is more productive, more patient-friendly, more professionally-driven and more diverse is clear’.

On competition: I do believe competition is a good thing. But not as an end in itself. It is a means to give doctors more choice to get the best possible care for their patients, and for patients to have that choice too. It is a means of bringing in fresh thinking, new ideas, different ways of doing things that deliver better and better value for money. Put simply: competition is one way we can make things work better for patients.

On the pace of change: We will make sure local commissioning only goes ahead when groups of GPs are good and ready, and we will give them the help they need to get there.

On integrated care: patients…are keen to make sure that whatever happens their care is joined up, that they don’t have to put up with the frustrations they have today – with different appointments in different places, with different people, all to discuss the same thing…professionals who have dedicated their lives to the NHS who are desperate that clinical decision making should replace bureaucratic decision making …but worry that only GPs will have responsibility and that will lead to a fundamental break and juncture between primary and secondary care…

Hospital doctors and nurses will be involved in clinical commissioning. We will also introduce clinical senates where groups of doctors and healthcare professionals come together to take an overview of the integration of care across a wide area. And of course, where effective networks of clinicians already exist, we will support them, not reinvent the wheel…Monitor will now have a new duty to support the integration of services – whether that’s between primary and secondary care, mental and physical care, or health and social care.

On waiting times: Patients tell me just how big an impact the time they wait for their healthcare can have on their well-being, and how they worry that by scrapping the old targets we might lose control of waiting times…The whole reason why transparency and choice are so important is so that patients can hold the health service to account and get the care they demand, where they want, when they want. That’s why we’re releasing a whole raft of information so you can compare and contrast different providers within the NHS – and make your decisions based no real solid evidence. And that includes evidence and information on waiting times. But we’re not going to leave anything to chance, especially as our changes are working their way through the system. So we’re keeping the 18 week limit…And we’re not going to lose control of waiting times in A&E either.

On NHS budgets: There will be no cuts in NHS spending…This year, and the year after, and the year after that, the money going into the NHS will actually increase in real terms with £11.5 billion more in cash for the NHS in 2015 than in 2010.

But…every year without modernisation the costs escalate. Demand pressures increase, driven by an ageing population and drug and alcohol abuse. At the same time, there are supply-side pressures too, driven by new and expensive drugs and technologies. We can’t pretend that the extra money we are putting in will be enough to meet the challenges. We need modernization of the NHS to do that.

The listening exercise

The NHS Future Forum reports and documents are at:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_127443

There is also a website that offers some criticisms of the Future Forum proposals:

http://healthandcare.dh.gov.uk/category/conversations/future-forum

The introductory material mentions voluntary organisations and hospices as having a clear role:

To provide this choice for people at the end of life will require an integrated approach in health and social care with greater involvement of the third sector, including the hospice movement. (p 8: Summary; Chair’s letter to the Secretary of State)

There’s also a comment on integration with social care, using the Health and Well-being Boards (p 12):

Local government and NHS staff see huge potential in health and wellbeing boards becoming the generators of health and social care integration and in ensuring the needs of local populations and vulnerable people are met. The legislation should strengthen the role and influence of health and wellbeing boards in this respect, giving them stronger powers to require commissioners of both local NHS and social care services to account if their commissioning plans are not in line with the joint health and wellbeing strategy.

Avoiding boundary disputes is also included (p 12):

Better integration of commissioning across health and social care should be the ambition for all local areas. To support the system to make progress towards this, the boundaries of local commissioning consortia should not normally cross those of local authorities, with any departure needing to be clearly justified. The Government and the NHS Commissioning Board should enable a set of joint commissioning demonstration sites between health, social care and public health and evaluate their effectiveness.

There are five main areas of discussion:

Choice and competition – broadly it promotes the availability of choice, in the context of patients’ and public security that local services are good. Since in an emergency, you have to go to the local provision and most people do not want to travel massively, choice about where to go is not so relevant as being able to influence the quality and style of the provision you experience. For me, it is a relief to see this point made, when the private sector commentators are all keen to get you to go to their local private hospital. Most people are perfectly well aware than in an emergency, the best place is the NHS. Of course the attitude is different for residential social care – people have got used to private sector provdiers there. Rather than the finance watchdog, Monitor, encouraging competition, the Future Forum says it should ensure that people should have the right to challenge commissioners if they are not getting adequate choice about how they are being provided for. Cherry-picking by private providers that would mean that integrated local services are not viable should be unacceptable.

Patient involvement and public accountability – it argues for integration as the main objective, delivered by patients having a strong say in how they are cared for, and stronger public accountability for the quality of provision at local and national level. Doubters think that health and wellbeing boards and local government generally are being cut so much there is little chance of htis happening.

Clinical advice and leadership – it should be wider, thus allowing the hospital doctors and nurses (no mention of social care) to stymie seriously community-oriented priorities.

Education and training – this is included to respond to problems about how the system will integrate with medical education; the comment is really ‘don’t know, we’ll have to work on it’. No attempt of course to connect this with training needs in social care.

The pace of change – set up the NHS Commissioning Board to give clear leadership, but don’t press too hard to get everything done by deadlines.

Government acceptance of the Future Forum recommendations and afterwards…

You can read the positive announcement (and a statement that the Future Forum is going to carry on listening) here:

http://www.conservatives.com/News/News_stories/2011/06/Government_accepts_recommendations_for_NHS_reforms.aspx

As usual, the King’s Fund has a good analysis of the announcements:

http://www.kingsfund.org.uk/current_projects/the_health_and_social_care_bill/nhs_future_forum.html

and Anna Dixon on their blog makes some useful comments:

http://www.kingsfund.org.uk/blog/nhs_privatisation.html

They also have a chunky report on the role of the voluntary sector in the reforms, done with NCVO. I’m going to return to this:

http://www.kingsfund.org.uk/publications/voluntary_sector.html

The Financial Times has a good in-depth briefing (but be careful how many times you click on the FT website; after a while their paywall looms up to hit you).

http://www.ft.com/indepth/nhs-reform

A useful briefing by the NHS Confederation (the health organisations’ organisation) on the government response and what they thought. Generally, they were pleased by the government’s report.

http://www.nhsconfed.org/Documents/110614%20member%20briefing%20govt%20response%20to%20FF%20-%20FINAL%20FOR%20WEBSITE.pdf

A video of Lansley addressing GPs yesterday, carried by the Telegraph from ITN, makes clear that GPs are going to be well on the way to their commissioning role by 2013, even if they’re not quite there yet. Clinical commissioning groups will cover all England by the due date, even if they’re not fully functioning. This was probably inevitable anyway before the pause for listening. So the claimed slowing up of the process until people are good and ready is largely non-existent.

Link to the Lansley video: http://www.telegraph.co.uk/health/healthnews/8576849/Andrew-Lansley-NHS-reform-consultation-not-a-PR-exercise.html

Alan Milburn’s Daily Telegraph article attacking the government’s proposed changes to the reforms is at:

http://www.telegraph.co.uk/news/politics/8578226/This-NHS-debacle-sets-us-back-a-generation.html

Milburn’s analysis is that quietly going ahead on the present track would have delivered many of the improvements, but that Lansley was inept in claiming that there would be a revolution in competition and a ‘free-for-all’ in who was allowed to provide NHS care, encouraging private providers. If we accept this judgment, it is easy to guess that Lansley might have done this to promote his position politically in the right-wing of the Conservative Party. More important, probably he actually believes that this would be a better way of running the NHS; lots of people do.

For people who are doubtful about how the private sector is going to react to the possible loss of opportunities for profit, I also like this Spinwatch diagram, which shows how people with political influence and private sector organisations favouring private sector involvement in the NHS are connected:

http://www.powerbase.info/index.php/File:Private_Healthcare_Network_SpinWatch.jpg

Conclusion

Actually, I don’t think the private sector has much to worry about. I don’t think competition red in tooth and claw was ever going to operate, and I think Lansley was ramping this up for political reasons, and has come a cropper as a result. There will continue to be steady increases in competition where it makes sense and in some places where it doesn’t. It is clear that the proposed changes are going to make the commissioning groups more difficult to manage, but it is clear that the process of reorganising is going ahead apace. I recently gave a talk to some pct managers, some of whom could remember their new job title, some of whom had been made redundant and some of whom had new jobs but didn’t know what they were going to be doing. Already, we’re beyond the point where the present system can carry on, so the question really is: how can we make the new system work well?

The Nuffield Trust published an interesting study last year, which I’ve only just got around to. It looks at all the people who died in three local authority areas and compared their use of local-authority-funded social care and in-patient hospital care (about 20% of people fund their own care, so the study tells you nothing about them). It is also good at citing other similar studies, so it gives you an in to related material.

It finds that about 30% of people had some social care during the last year of their lives, rising to 40% for older people. The number of people using social care rises from 15% to 30% during the last year of care. Much of this average increase in the last year represents increasing use of (expensive) care homes. Of the people studied, 7.2 per cent used only social care, 49 per cent used hospital inpatient care and 23 per cent used both. Use of social care increased slowly over the last 12 months, inpatient care increased hugely, except for people who already had high social care costs (meaning they were in care homes). Above age 60, hospital costs at the end of life declined with increasing age, while social care costs increased. A crossover occurs in people aged 90 and above when estimated social care costs in the last year of life exceed the hospital inpatient costs.

People with a mental illness of any age used more costly social care than any other group; people with cancer used fewer social care services (possibly because they have access to special services for cancer sufferers, such as hospices, Macmillan and Marie Curie).

There are some caveats but, on the interaction of health and social care costs, the report concludes:

There is a subset of people accessing both social and hospital care who are associated with proportionately higher costs.

Social care costs in the last 12 months of life are most significant for older people. Increasing age is associated with higher social care costs and a broadly equivalent reduction in hospital inpatient costs.

The level of hospital inpatient costs is lower for people with high social care costs (people in care homes). This inverse relationship is observed at different age bands and is not solely linked with activity in the few final weeks of life.

A Canadian study has similar results. Possible explanations include:

Some people have health problems that are not amenable to hospital‐based treatment and the concentration of these may be greatest in the population in care homes.

Sometimes a hospital admission can be avoided by care in a residential setting – a substitution effect.

There may be some discrimination about offering hospital‐based treatment because the recipient is old and in a care home.

People within care homes may feel better able, or better supported, to cope outside of the hospital.

Interesting stuff.

Martin Bardsley, Theo Georghiou and Jennifer Dixon (2010) Social care and hospital use at the end of life. London: Nuffield Trust.

On the web: http://www.nuffieldtrust.org.uk/uploadedFiles/Publications/Social_care_and_hospital_use-full_report_061210.pdf

Back in the country again and back to the computer (I’m so old-fashioned, I regard being away teaching as an excuse not to look at my emails – my son checked his emails on his honeymoon – that’s the new generation for you – but he did say that I was not to regard him as a saddo).

Catching up, the Department of Health has published a consultation on quality markers on spirituality and bereavement care in end-of-life care. You may know that NICE is consulting about quality standards in end-of-life care (not markers, notice the difference – standards are a posher form of quality apparently), but somebody noticed this did not cover bereavement and spirituality, so the DH has rushed out some lesser quality wotsits to compensate.

All this activity is a positive sign of the DH intention to embed end-of-life care in broader services.

On these particular quality markers, they suffer, of course, from the tendency to equate the existence of policies and the provision of a service with quality, rather than the actual quality of the human relationships engaged in the service provision. These are the measures:

For commissioners:

Evidence that service level agreements (which include explicit contract monitoring requirements) have been established with provider organisations.

Contract monitoring to include requirements for providers to:

- Gather feedback from service users, including an agreed measure of outcome achieved as appropriate to the service being provided

- Audit service uptake

- Monitor waiting times (as appropriate)

Providers to share this information with commissioners at the agreed time;

Service specification and needs assessment documentation to be available.

For providers:

Service user feedback on the availability, timeliness, usefulness and appropriateness of support and information provision;

Audit of documentation showing whether information was offered to the carer/family member;

Tell Us Once services developed in partnership with Local Authorities.

Documentation showing that a clear, agreed pathway is in place;

Audit of service provision demonstrating implementation of this pathway, including appropriate onward referral;

Agreements in place with other providers to enable appropriate onward referral.

Evidence of general introductory training, incorporating dealing with loss, grief and bereavement, being made available to, and accessed by, all staff;

Evidence of the use of competences as part of appraisals and professional development plans for staff directly involved in bereavement assessment and care delivery.

Organisational HR policies include provision for staff and volunteers who have been personally bereaved, or have been affected by death and bereavement in the course of their work;

Audit of support, counselling and supervision available to, and level of access by, staff and volunteers in the workplace, including those who have exposure to, and are affected by, death and bereavement;

Audit of staff and volunteer feedback on the service.

The human resource policies focusing on support for staff and volunteers are a welcome recognition that this can be a personally demanding area of practice.

And it’s of note that the idea is spreading of developing a widely-understood ‘pathway’ as a way of integrating services. So local serviecs would understand the normal progression from having a relative who has died, through immediate responses to bereavement on towards more specialised care required in a relatively few cases. I have my doubts whether this is relevant in a very broad area of need, such as bereavement, where there are many social and community responses. Integrated care pathways developed from the need to coordinate disparate professional services in a clearly defined condition with a recopgnised progression, such as Parkinson’s disease. I think it’s less clear that this form of coordination is appropriate for issues such as bereavement and even less so with something like spirituality, which should be integrated into what every prcaititoner does in relation to the end of life.

And as we have seen in the recent fuss over abuse in a hospital for learning disabilities, you can have all sorts of services and agreements, but no human response to the needs that have to be met and no real acceptance of managerial responsibility for a good quality experience for service users at any level, from  front-line staff to regulator. This is particularly important in areas such as bereavement and spiritual care, where how you do it is far more important that the systemisation of what you do.

Still, the consultation is there to respond to:

http://www.endoflifecareforadults.nhs.uk/assets/downloads/Draft_Spiritual_Support_and_Berevement_Care_Quality_Markers.pdf

This is my third discussion of current policy fads and fashions and their consequences for health and social care, and in particular end-of-life care: this time the focus is on Bog Society policy. In it, I argue that Big Society policy is underdeveloped, but reveals important features of Conservative thinking about society, in particular the wish to move away from public service approaches to service provision towards service provision that reflects the asumed ‘enterprise’ of the private sector.

Like most people, I’ve spent a bit of time struggling with BigSoc (this is what I call it), and you can see my struggle represented in my BigSoc blog (http://bigsoccommsw.blogspot.com/). I keep this separate from my St Christopher’s blog, partly because it deals more directly with party political issues (which is a no-no for St C’s). Also, it includes a lot of detail unrelated to end-of-life care and blogs need to stay with one main subject, so that people know what they’re getting. Hence the separation. However, struggling with BigSoc elsewhere does mean that I have a stash of material to ground my thinking in relation to palliative care. That’s what I’m doing in this post.

The contradictions in BigSoc policy

Why is BigSoc a struggle? For two main reasons. One is because its political focus and objectives are claimed to be unclear, by political commentators in the press. My stance in my BigSoc blog is ‘details tell all’: that is, if you dig around in what people actually say and do in some detail, you can get a picture of the whole, because what they are doing in practice informs you about the big ideas behind it. The picture reflects Conservative ways of thinking: they want a more private sector ethos in public services.

The other reason is that the BigSoc idea seems attractive to those of us who have always been committed to community work. Community work is the practice (sometimes it’s  an element of social work and sometimes broader) which seeks to facilitate people from communities, both local communities and communities of people who share interests, to come together, work collectively on issues that they share and create solutions that they put into action themselves. BigSoc seems to want to encourage this; groups of local people are encouraged to find their own solutions.However, the engagement with people at the grass-roots that is typical of community workdoes not usually produce the kinds of initiatives and engagements that can be presented as colourful, imaginative developments demonstrating an important political idea likfe BigSoc. Consequently, activities selected to represent BigSoc, in order to promote the policy, are often quite untypical of what is actually done in community work and of what local government will achieve by decentralising and localising decision-making.

Therefore, contradictions seem to grow out of how the ConDem coalition has tried to implement BigSoc. I have pointed out before in this blog and elsewhere that the history of attempts to encourage community endeavour through government action is littered with government finding out that community action often leads very rapidly to protest about what government is doing, and rapid squashing of what communities want. It often also leads to communities creating responses that government does not expect. Governments (or the politicians in them) tend to think that their political views are widely shared, whereas they are often only shared by the people those politicians meet. The people who come together to share views and work on things together often find that their views and what they want to do about them differ from the political assumptions. Their public response is often protest or resistance, rather than imaginative development, or development of local services which do not offer a lot of zip-zap for someone who wants to promote a new BigSoc policy.

The main aims of BigSoc policy

BigSoc seems to have two main drivers. One is a conception that government is too big. There are at least two elements to this: one is that it is too large as part of the UK economic system, and that if you reduced its economic role, it would leave space for non-government sectors of the economy to be creative, expand and get us out of economic problems. The second element is that government looms too large in people’s minds as the solution to social problems and that if you reduced its role in providing services and responding to social issues, people would sort out answers on their own. These are broad objectives for cultural change, based in broad political philosophies. Can encouraging local engagement in quite prosaic local government decisions or developing responses to small-scale local issues achieve such change?

The first concern driving the policy is that government is too big in the economy, leads to an economic policy which reduces government expenditure and tax, and associated political policies such as the ‘bonfire of the quangos’ and the ‘bonfire of red tape’, with the aim of reducing the burden that government places on the economic capacity of other sectors of the economy to innovate and expand.

The second driver, people should be enabled to become more active in resolving social issues, rather than relying on government, leads to attempts to reduce the role that government takes in providing many services and encouraging citizen activism.

Both these diagnoses and prescriptions might be questioned in serious economics and sociology, but I leave that aside. Also, critics from the left would say that these are just new formulations of a conventional liberal position, which argues on economic grounds for a small state. I’m leaving that on one side, too. The ConDem government has given these ideas importance in BigSoc, and so that is what we are playing with. In ConDem policy they are connected because reducing government expenditure and activity inevitably means present services or activities disappearing altogether, or being replaced by something less extensive. Making space for non-government enterprise at the level of the whole economy can also mean making space for individual activism in responding to social issues.

In a speech reported by the BBC, David Cameron, the UK Prime Minister, connects these two things: ‘My mission is social recovery as well as economic recovery’.

The BBC report, including a clip of Cameron speaking: http://www.bbc.co.uk/news/uk-politics-12443396

Another good political report from the BBC looks more comprehensively at the concept: http://www.bbc.co.uk/news/uk-politics-12163624 , and includes a lot of comments from viewers and listeners.

Existing activism and BigSoc?

As this report makes clear, virtually anything that has to do with activism, such as volunteering or people demonstrating commitment to and involvement in their locality or some other social interest, may be seen as BigSoc. Since in the UK a lot of such activism goes on, the government might be able to claim wide support for its concept and the press might be able to identify lots of BigSoc activity. In one of my BigSoc blog posts, I looked at the claimed evidence for ‘broken Britain’ and the need for greater volunteering, and came to the conclusion that the government was overstating its case: a lot of community involvement and volunteering goes on, more than the government claims. This post is at: http://bigsoccommsw.blogspot.com/2011/03/good-evidence-exists-for-strong.html

Similarly, an earlier post looking at stated Conservative Party policy on BigSoc found that this rather naively seemed to be unaware of a lot that goes on in local community activity:

http://bigsoccommsw.blogspot.com/2011/03/bigsoc-minnie-mouse-policy-minimal-and.html.

The problem with this approach to BigSoc is twofold. First, it demonstrates a general ignorance and naivety or, alternatively, complete denial about what valuable things are going on in local communities and suggests that the policy is based on ignorance and denial. Second, it will allow Conservatives to claim all sorts of activities as the product of its policy initiative, when they were there anyway.

Palliative care organisations such as hospices fall into this category: they are there, they are successful, they substantially fund themselves. They are therefore a good example of what BigSoc policy might achieve. However, as I argue below, hospices are rather unusual voluntary organisations, and their size and funding cannot transfer all that easily to other comunity activties. So people in hospices should not be too forward in claiming either that what they do can be replicated elsewhere, or that they are some wonderful example to others: that is calculated to irritate lots of local government and the voluntary sector, who do not have the same advantages.

Claims that BigSoc is everywhere are already happening. In another BigSoc blog post, I examined all the projects that had received a BigSoc award from the Cabinet Office, at the time twelve, although the details of one of these was missing from the Cabinet Office website http://bigsoccommsw.blogspot.com/2011/03/details-tell-all-analysis-of-number-10.html. There were, of course, a variety. But an interesting feature was that many of them were for really rather ordinary community activities, carried out with pizzazz. In my later post, I listed the top ten words for putting into your applications for a BigSoc award, things like inspiration, passion, life-changing: the whole list here: http://bigsoccommsw.blogspot.com/2011/03/top-10-words-for-getting-number-10.html.

BigSoc as chutzpah

In many respects then, the government is treating BigSoc as a marketing tool for things that it wants to encourage. You’ll have gathered from many comments in this blog that I’m unhappy about marketing as an approach to health and social care. In another BigSoc blog post (http://bigsoccommsw.blogspot.com/2011/02/bigsoc-is-not-pr-message-it-demands.html), I pointed to a PR wonk’s take on BigSoc; she was saying that people in government were treating it as a way of conveying a warm friendly image, in the face of criticism about cuts.

I connect this with Steve Burghardt’s recently published book on macro social work (Macro Practice in Social Wokr for the 21st Century Los Angeles, Sage, 2011), in which he describes community work as being ‘chutzpah meets humility’. The point is: if you are going to facilitate people to come together and make their own decisions, you have to take a step back out of the limelight and help them to work things through in their own way. One the other hand, you also have to have a certain amount of zip-a-dee-doo-dah to promote new ideas, get people engaged and push things along. It’s a difficult balance to achieve, and one of the skills of community work is achieving this.

I think the Conservatives understand the chutzpah bit, but not the humility. You can see this in the kinds of things that they support as BigSoc.

BigSoc is (in the Conservative mind)…

So what is BigSoc as the government sees it? Cameron has made a number of attempts to describe this.

The first general presentation of the ideas is the Hugo Young lecture in 2009: http://www.conservatives.com/News/Speeches/2009/11/David_Cameron_The_Big_Society.aspx

The conclusion of my analysis on this in the BigSoc blog (http://bit.ly/i3pD3L) is as follows.

To sum up the argument, Cameron is arguing that the size of the state leeches away personal and shared social responsibility. BigSoc policy aims to provide government to action to reverse that. Subsidiarity is the thing, giving responsibility to the lowest possible level in society. They will try to give individuals the responsibility and capacity for helping themselves, through family, education and welfare reforms. Where that is inappropriate, they will encourage shared action in neighbourhoods, and when that is not possible they will make the lowest level of government, local government responsible, and make it more transparent, accessible and responsive to active citizens.

In an article in the Observer, after some criticism of BigSoc, he says:

The big society is about changing the way our country is run. No more of a government treating everyone like children who are incapable of taking their own decisions. Instead, let’s treat adults like adults and give them more responsibility over their lives. That’s why, in reality, this is quite different from what politicians have offered in the past.

This is not another government initiative – it’s about giving you the initiative to take control of your life and work with those around you to improve things. It has the power to transform our country. That’s why the big society is here to stay.

The article here: http://www.guardian.co.uk/commentisfree/2011/feb/12/david-cameron-big-society-good

An article in the Observer recently claimed that some of Cameron’s ideas are from Schumacher’s famous book of the 1970s, ‘Small is Beautiful’. Quoting extensively from the book, I argued in the BigSoc blog http://bit.ly/dN1rvU , that, if so, it is a complete misunderstanding of Schumacher’s point. He is arguing that a policy of pursuing economic growth to achieve larger economies, with larger economic units consuming larger finite natural resources, is unsustainable. The outcomes of this growth model are the increasing use of finite natural resources to achieve merely transitory consumption. Present Conservative policies clearly aim at this kind of economic growth, which Schumacher criticises. Conservative BigSoc policy is completely antithetical to Schumacher’s position. It seeks to reduce constraints on big business in order to achieve higher economic growth. It sees the main constraint as big government, and so it wants to remove big government in favour of localism, because it thinks this will release economic growth. Schumacher does not talk about localism so much as the small and the human.

The BigSoc critics

In his Observer article, Cameron notes, fairly accurately, the criticism of the concept, and these are his answers:

It’s too vague: he rejects this because he is against creating one central design

It’s a cover for cuts: he says supporting social responsibility is a different matter and he has supported that for a long time; anyway, greater social responsibility will benefit society.

It will work in rich areas, but not where there are no resources: he rejects this because there is evidence of activism in poor communities.

It’s not new: yes, but he wants to encourage more of it.

Voluntary bodies are being squeezed: no, they will be restructured because the Conservatives will open up opportunities for voluntary bodies to bid for contracts for public sector activities. (To the extent, I would say, that they demonstrate emterprise thinking and chutzpah.)

Polly Toynbee and a range of commentators on her article cover most of the issues about cuts to voluntary groups. She distinguishes between small very local social groups and the organisations providing services, often under contract from the government already, although it may limit their preparedness to criticise government.  The fact that small groups fund themselves is irrelevant to support for that part of the voluntary sector that provide useful serviecs. She also criticises the concept of the BigSoc bank, providing development loans at commercial rates to help voluntary organisations compete for government contracts as part of her argument that government support is central to succesfsul voluntary endeavour.

http://www.guardian.co.uk/commentisfree/2011/feb/14/david-cameron-big-society-charities?intcmp=239

Similarly, a Jackie Ashley article sums up well the critics who say you cannot achieve BigSoc if you simultaneously cut funding to charities and voluntary organisations, because they are the major existing aspect of BigSoc. If you cut local government, those cuts will have a disproportionate effect on voluntary organisations, since local government will priorities its own staff and services.

http://www.guardian.co.uk/commentisfree/2011/feb/13/big-society-destruction-david-cameron?intcmp=239

BigSoc in practice

So what does BigSoc seem to involve in practice? To work that out I looked at a number of policies and practices, and you can follow the detail in the following  BigSoc blog posts.

What’s happening in the three continuing BigSoc ‘vanguard’ local authorities (one, Liverpool, gave up in a shower of sparks because local government cuts was preventing it from developing BigSoc policies and had reducing funding for voluntary sector BigSoc activities):

Sutton, in south London: http://bigsoccommsw.blogspot.com/2011/02/suttons-bigsoc-vanguard-tells-us-what.html

Windsor and Maidenhead, to the west of London: http://bigsoccommsw.blogspot.com/2011/02/details-tell-all-windsor-maidenhead.html

Eden, in the Lake District: http://bigsoccommsw.blogspot.com/2011/02/details-tell-all-windsor-maidenhead.html

Overall, what is going on in local government is not very impressive and not very imaginative – no chutzpah there. First, most of what they were doing they were doing anyway, they were just relabelling it BigSoc. sometimes openly. Second, many of the initiatives were about local involvement in planning; nice, but probably they should have been doing that anyway. The problem with participation in decision-making is that it is not very attractive to local politicians, because they feel they have been elected to make decisions and achieve their political objectives, not have them questioned by every Tom, Dick and Harry that turns up to public meetings.  Third, there were meetings with local citizens or with voluntary organisations to discuss what BigSoc might mean. These seemed to be part of getting more volunteers for things, especially if it meant reduced local council costs.

Another important aspect of BigSoc policy is what I call ‘enterprise’ thinking, and I have sometimes called it ‘businessification’, following John Harris’s critique of treating social work as though it was a business activity.  In many Conservative eyes, an important objective of BigSoc is that it is a local arm of the government’s aim to encourage the private sector to be engaged in what is now public sector activity; this is inherent in many of the government’s policies. Part of the reasoning for this is an opposition to bureaucratisation, by which Conservatives often mean unimaginative thinking which opposes change of the kind that Conservative politians would like to achieve. The answer to this is being enterprising, imaginative, creative and all these traits are assumed to be associated with the private sector, rather than the public sector. To the extent that voluntary organisations emulate that, they are good and not part of the public sector. To the extent that they just take government money for providing government services, they are bad, and just another aspect of the public sector.

It’s back to chutzpah again.  Conservatives like to see community activity that demonstrates chutzpah; humility and participation are not enterprising; they do not understand why you would need it. So only particular kinds of community activity are required, therefore, and activities such as continuing to build and provide end-of-life care through professional integrated community services (to give one example) do not have it.

Much of the rest of my blog has been about the debate on voluntary organisations. Here, the pattern is quite clear. Conservative commentary is anti the ‘establishment’ of the voluntary sector, which receives government money for providing services (http://bigsoccommsw.blogspot.com/2011/03/tories-reject-establishment-charities.html) they are really hoping for radical, enterprise oriented voluntary organisations with right-leaning policies enabling disabled people and single mothers into employment, for example. And chutzpah. A ‘society of the second chance’ is an Iain Duncan Smith phrase which seems to mean forcing people to take whatever second chances they can get, instead of staying comfortably on social security benefits.

BigSoc and palliative care

What does all this mean for palliative care? It’s a complicated picture. Most palliative care is in hospices in the UK, whereas a lot of non-specialist end-of-life care is with GPs and general health and social care services and BigSoc policy is different in these two areas.

Hospices are talked up by the Conservatives, including Cameron. I have commented before in this blog that this seems to be for two reasons. First, hospices raise a high proportion of their own funding, so they are not ‘establishment’ charities, in the sense that the government supports all their activities. However, they are not enterprising; they do not have chutzpah. The need for chutzpah if you want to appeal to the government is the reason for the success of organisations such as Marie Curie and Macmillan: they employ high-profile senior staff who trumpet successes in a glossy, businesslike way with lots of advertising and image. Solid service provision from your local hospice is a lesser priority.

Second, there is a sentimentality about end-of-life care, which politicians pick up from general public attitudes. Most people have little to do with the end of life, don’t like to think about it and support organisations that make them feel that it’s all going to be handled very nicely and kept out of their way.

On these two counts, BigSoc will have little impact on hospices, for so long as they are able to continue raising their own funding and put up some people with chutzpah. This means that the government does not actually have to make clear decisions about the extent to which they support end-of-life care as against other priorities, and it all sounds jolly good. I suspect that if they did have to think about it, they might not be so supportive, and might in particular want to see a reduction in the high costs of quality palliative care. The distance means that everyone can feel a warm glow of doing something nice with a little bit of funding and expressing support.

End-of-life care is not much involved in local authority and voluntary sector funding cuts, so it neither irritates government supporters by whingeing about cuts nor engages with the problems of local health and social care organisations. That will last until local service changes begin to affect hospices’ capacity to achieve home care.

Another factor is that most hospices, although theoretically voluntary organisations, and locally committed, are really part of the health service, and BigSoc does not talk a lot about the NHS. Health promotion and well-being are good things, but actual services are part of the public sector bureaucracy. Hospices do not generally have a lot to do with the local voluntary sector establishment, or with local government, and are much more affected by NHS policy. The more generous funding of the health sector tends to insulate them from the debates about BigSoc, at the same time as being a potentially desirable element of BigSoc.

So BigSoc is not a big deal for palliative care yet, but BigSoc policy is going to permeate lots of thinking about public services. This will have a particular impact on palliative care as the health and social care reforms that I discussed on Tuesday begin to affect palliative care. My next post will try to bring together health and social care reform, BigSoc thinking and end-of-life care.