All the press publicity about a number of ghastly child protection cases that have come to light does raise the question about child protection in palliative care.

There is a perception from outside that palliative care social workers have a restful time counselling people distressed by grief. But like many other health-related social work specialties, palliative care social work means dealing with the whole family and all their problems; it’s like the generic social work that many local authority social workers have been forced to move away from. Families under stress because a family member is dying will face all their usual pressures of poverty, poor housing, mental illness, poor environment and many other stresses alongside coping with their bereavement. If they are already chaotic, child protection issues that already exist may be raised in more serious form; adults who don’t do child care well will probably do it less well when they are under stress.

Some of our social workers have found it hard to interest local authority social workers who are dealing with looked after children in the possible consequences for the children of a death in the family, and the need to plan for secure child care after the mother or father (or the aunt or grandma who supports child care in the family) dies.

Other people in palliative care, especially community nurse specialists who are visiting homes regularly, need to keep their awareness of child protection issues and procedures up-to-date, because they are certainly going to come across it. But I think that their focus on the dying person and the feeling that child protection is health visitor and social worker business might lead to the risk of one of them appearing on the front pages in the future, too ‘hospice nurse visited but did not notice’ sort of thing.

Could stressed family members abuse their children (or groom other families’ children who are also visiting) on hospice premises too? It can’t be ruled out but I wonder how many hospices have policies and procedures to respond to the risks.

While the following Parliamentary answer will not be news to readers of this blog, it does remind us that the government plans to introduce direct payments to the continuing care system next year. If they want to experiment, they could do it for palliative care patients first, many of whom would appreciate the flexibility that direct payments offers.

10 Nov 2008 : Column 826W
Continuing Care: Finance

Jeremy Wright: To ask the Secretary of State for Health when he plans to begin the national pilot programme on primary care trusts making direct payments for people eligible for fully funded continuing care; and if he will make a statement. [231588]

Mr. Bradshaw: As announced in the Next Stage Review, we will launch a pilot programme in 2009 to test personal health budgets, as a way of giving patients greater control over the services they receive and the providers from which they receive services.

As part of the programme, we intend to pilot the use of health care direct payments, where it makes most sense for particular patients in specific circumstances. We intend to bring forward legislation to enable this; subject to parliamentary approval, we will extend the pilot programme to include health care direct payments from 2010.

The rest of the programme will explore models of personal health budget where the budget is held on the patient’s behalf. These are already available to primary care trusts under current legislation, and also offer considerable scope to give patients more choice and control.

Hansard at: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm081110/text/81110w0013.htm

This link is to an IDEA case study on Cheshire County Council policies on carers – they have a carers lead in each council department and an overall carers policy person, and spend £2.5m. Since the specific carers grant is coming to an end soon, social workers everywhere, and in palliative care, will need to make sure that their local council has a mainstreaming policy like Cheshire’s, otherwise we’re likely to see services lost again. In particular, the specific grant is being put into main council budgets, so people concerned about carers need to check that this doesn’t lead to money being chopped.

If you didn’t know, Idea was a local government training body, but was privatised a while ago, so it makes money by doing lots of development projects with local government agencies.

The Idea info: http://www.idea.gov.uk/idk/core/page.do?pageId=9016531&aspect=full

A question about LCP, which elicited the answer that it’s wonderful, but, since it is expressed in the past tense, the Department of Health has stopped actually paying to ‘roll it out’ (the image is of the garage door rolling down to clang shut again after some abnormal load has been tugged into place by some hefty workpersons):

Dr. Iddon: To ask the Secretary of State for Health what his policy is on the use of the Liverpool Pathway for Terminal Care. [231589]

Phil Hope: The Liverpool Care Pathway for the Dying Patient (LCP) is an established and respected evidence-based tool that is used extensively throughout the national health service for the care of people at the end of life. It is recommended in the National Institute for Health and Clinical Excellence’s Guidance on Supportive and Palliative Care and is also commended in the Government’s recently published End of Life Care Strategy for adults. The Government supported the roll-out of the LCP, and other tried and tested tools, through the NHS End of Life Care programme (2004 to 2007) to help improve the care given to people at the end of life.

The question at: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm081111/text/81111w0025.htm#08111182000034

What about, you might wonder? Life, the universe etc, or is it just the younger people?

It seems that more than a third of people being treated in the community for depression are elderly. Here’s Phil Hope again (http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm081111/text/81111w0023.htm#081111820000120)who didn’t know the answer but had some information which gave questioner Norman Lamb a bit of an answer:

‘…between July 2007 to June 2008, 40.2 per cent. of items dispensed for the treatment of depression were given to people aged 60 and over. This is based on a full analysis of all prescriptions dispensed in the community.’

Hung on the recent case of a 13-year-old girl whose doctors thought about forcing her to have a heart transplant when she refused, there was a Westminster Hall canter round the issues about assisted dying (Westminster Hall is the sub-Parliament, where MPs have interesting but not politically important debates). The issues about the young woman were around her entitlement to express a view as a child, but the debate went much wider and covered the usual ground, mentioning also the recent case where a patient tried to get the high court to say that the Crown Prosecution Service should publish its guidance.

I understand that people feel that they need some certainty in these situations; but there’s no certainty in death. As a social worker, accepting the court’s view that it’s a matter for Parliament, I worry that human situations are generally too complicated to be susceptible to a simple legal answer, and people have to accept that those involved will inevitably have to use their discretion.

The Westminster Hall debate is at:
http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm081111/halltext/81111h0005.htm#08111147000004

An interesting House of Lords debate on top-ups, following Mike Richards’s report on allowing people to buy drugs and still get NHS treatment (mainly for cancer). Their lordships went on to talk about top-ups in principle; the issue being whether this leads in the short- or long-term to inequalities between patients; perhaps one should say more inequalities, since there already are a lot, but I suppose in this case the government is creating the potential for more.

This connects up with the fairly constant demand in continuing care cases that I deal with for families to be able to top-up the price the NHS will pay for care homes (either with or without nursing) so that they can choose the ones they want to go to. Currently, the pcts in our area mainly have a limited list (of cheapo care homes) and you have to be able to show that these cannot meet your need before they will (unwillingly generally speaking) pay more. This proceduralises the process for getting your needs met, because you have to prove that the cheap list cannot cope with your needs, rather than it being an active process of looking for the right place.

However, this excludes choice; the government rhetoric is of choice, and people cannot understand why they cannot have it. Choice is severely limited unless you can pay for everything, and because you are not allowed to top-up the NHS bedget, there will inevitably be pressure to allow top-ups. The present system is unsustainable at least partly because the social services require you to contribute to costs, while the NHS refuse to let you; a total inconsistentcy in policy. But it is true that eventually this will mean that only poor people will end up in the cheapo care homes (which are not all awful, but it’s tougher for the managements because of high costs in London) and the middle classes with a bit of money will migrate, while they are at the moment forced by continuing care policies of no top-ups also to occupy the cheap care homes. So the argument for top-ups does aim to advantage the middle classes, leaving the poor to put up with worse.

This means that whatever system eventually allows people to top up will have to be more generous about the needs of the poor, because otherwise their care will be less pleasant and creative than that of the middle classes who can afford to pay a bit. Does this matter, if the basic needs are met? The palliative care and social work view is that it would matter, because people at the end of life should have a stimulating environment, with worthwhile and fulfilling things to do. Pcts, by their nature, only look at the minimal healthcare needs rather than these wider issues of social participation. The poor also have social needs.

You can see the debate in Hansard at: http://www.publications.parliament.uk/pa/ld200708/ldhansrd/text/81104-0005.htm#08110439000010

(6-9th November 2008)

In Portugal to speak at a conference on social work in the 21st century. A member of the audience asks me what the role of social work will be in the 21st century. I point out that we have 92 years to go, and I cannot possibly imagine what social work will be like at the end of that time. There is a lot of talk about the environment and how people in poverty and who suffer mental illness and other problems, including the rising number of older people, will get left behind as governments focus on reacting to climate change. Will services for dying people be cut back in the cause of environmental action?

There were crowds of enthusiastic southern European students. One of the lovely things about my occasional involvements in social work education is how you meet enthusiastic committed young people itching to get on with improving the world; I always have hope for the future when I meet one of these audiences.

Another characteristic shock of speaking to people at European conferences is their commitment to and interest in ‘the European social model’. They mean by this reasonably comprehensive state services focused particularly on people in poverty, housing stress, fuel poverty (a theme of this blog) and suffering unemployment. They contrast this is an American model (they are too polite to comment on the British) of believing that social care should be provided in the market. I don’t know that you get the same level of commitment to state social provision from students in British social work courses; it’s all been knocked out of them by the prevailing political climate.

I also wonder whether social workers and indeed everyone in palliative care has the same commitment to state provision for people in poverty that you meet in such European conferences. We have too much focus on the technicalities of what we are doing to raise our eyes up to the role of palliative care in combating health inequalities that the WHO website on palliative care demonstrates although even this points up how inexpensive palliative care is (http://www.who.int/cancer/palliative/en/).

However, you get also the same question that British social work audiences always ask, and in this case put very assertively by a social worker in the audience. The main thing that gets in the way of social work practice is bureaucratic procedures, lack of resources and limitations on what you are allowed to do, she says. How can you deal with this in practice?

To which I always say: ‘by doing the best job you can for the people you can get to and finding your way around some of the limitations’. Social workers, and other professionals, have to be accountable to the people who pay for what they do as well as to their clients, and we have not won them round to pay for what it would be possible to provide. To be allowed to do what social work can achieve we have to communicate the research that shows how effective and valuable social work can be to the people who make the decisions. We also have to demonstrate in everyday practice to our colleagues in other professions in the services that we are part of how valuable what we do is.