The ghastly cases of lack of care for people with learning disabilities in hospitals raises the question of whether we really get it right for them in palliative care, or whether if someone looked some of the same things could be said.

The report at: http://www.ombudsman.org.uk/improving_services/special_reports/hsc/six_lives/index.html

A commentator tells me that a new edition of the ace guide to the law for voluntary organisations has come out ‘Voluntary but not amateur’, that I was bemoaning needs renewal has now appeared. New readers might not see the comment, so here is the information again:

I hope you’ll be pleased to know that a new – completely updated – edition (the eighth) of Voluntary but not amateur has just been published.

The new edition is published by the Directory of Social Change and is available from www.dsc.org.uk/Publications/Law/@2911 or 08450 77 77 07/ 020 7391 4800, price £35 + postage.

Demos has been dreaming up a constitution for social care, following up on the government’s constitution for healthcare. Well, at least someone is thinking about social care. This is a report from a left of centre think tank that at one time was quite popular with new Labour, now probably less so.

All the citations are to the CSCI and the Treasury, so this is a policy wonk’s proposal, not from anyone who knows anything about doing the job. So it’s strikingly naïve about the human negotiations that go on about people providing care for their relatives. It’s mainly wanting to tell carers and people needing care that they have this or the other right, without thinking about the fact that carers’ rights conflict with users’ rights, and nobody is prepared to pay for any of it.

On the good side it has a ‘citizenship’ model of social care, as follows: Social care needs to be based on the principle of equal citizenship. Everyone should have an equal opportunity to live a full and active life, to be in control of one’s own life and home, and to take a full part in family, social, cultural, economic and community activities (p 5). That’s nice, but it’s only clear in policyland (the new version of Alice’s travels) because sometimes families do not want their older relatives playing an active life with them, so what about their rights not to have the old biddy around, which Demos is just as keen on?

‘Of course, as with any publicly funded service, there are resource constraints’, it goes on to say. ‘In the current climate, we accept that people who can afford it might reasonably be expected to contribute to the cost of their own care. However, any system of contributions must seek to minimise disincentives for people to work or save, and not undermine people’s chance to lead a full and active life. There are other responsibilities for people who use the service too, such as recognition that improvements also depend in part on people playing an active role in making them happen’ (p 6). Yes, nice idea but how do you minimise disincentives and get people to play an active part? Nobody’s worked that one out yet, another human failing, certainly not something the guys and gals at Demos have worried their heads about.

However it does look at funding: ‘Building a system based on the principles we have set out in this constitution will almost certainly cost more. It is difficult to estimate exactly how much that will be, partly because there are no accurate figures on how much people spend on their own care, and how many people are currently going without. The current social care system in England as a whole costs the public purse around £14.2 billion every year, and it is likely that reform along the lines suggested here would cost an additional £5–10 billion a year. Precisely where this additional money would come from – whether general taxation or specific insurance models for example – is not something considered here. However, it worth noting that such an increase would amount to just 10 per cent of the total NHS budget.’

So we might think about how much less the NHS should get, so that we can have some semblance of good quality in social care. Hard to do, when people get scandalised about what the NHS does badly, and have never really thought about what they expect from social care. At least having these sort of principles might get people to think a bit more about what they’d like to be scandalised about in social care.

Bartlett, J. and Guglielmi, S. (2009) A Constitution for Social Care. London Demos

An interesting research report on what dignity in care means to older people has been done for Help the Aged by the Picker Institute. Among other things it evaluates a lot of dignity assessment instruments, and contains quotes from older people about what helps them to feel dignified and from service providers.

Here’s a quote about a hospice: ‘I had a terrible argument with the director of [hospice] about whether a hospice was the right thing and I said it wasn’t for me and he ended up saying… “What you’re doing is taking away the rights of my nurses to look after dying people”, which I thought was atrocious’ (recent inpatient)(p.15). I agree with this patient: the patients aren’t there to enable us to care for them how we think is right, we’re there to find out what they want by way of care and provide it.

The report starts from the Help the Aged domains of dignity (from a previous report). The comment about end-of-life care is: ‘Although a number of end-of-life care strategies have been developed, we found few examples of surveys of older people’s experience at the end of their life – other than those addressing common care issues such as involvement in care planning and privacy when being examined. Other surveys explored people’s attitudes towards hypothetical future situations, which may not accurately reflect their attitudes at the actual end of their life’ (p 29).

Well worth looking at.

Magee, H., Parsons, S. and Askham, J. (2008) Measuring Dignity in Care for Older People. A research report for Help the Aged. London: Help the Aged.

http://policy.helptheaged.org.uk/NR/rdonlyres/4EEDFA38-D850-4C53-81DE-C0D2664B50FE/0/MeasuringDignityinCareID8041.pdf

A friend has recently been called to be with her sister while she died of cancer, but this was in a non-Western country with few public health facilities; the cancer had been neglected, so the time during which she died was not long. Novertheless, the family incurred tens of thousands of pounds of debt for medication and other care needs, even though they did a lot of the caring themselves. This has been shared out among family members. It reminds us of the stark inequalities in services for dying people across the world.

I am reminded of this by having my attention drawn to an article about private African health services for women having babies, from the interesting women’s enews website.

The article about maternity services: http://www.womensenews.org/article.cfm/dyn/aid/3955

The women’s eNews website: http://www.womensenews.org/index.cfm

Guardian Public had a nice interview with Rodney Brooke, the guy who’s just stood down as the first chair of the General Social Care Council, a worthy of local government, perhaps, judging from the interview, the source of the ’steady as she goes’ style of the GSCC.

Not to worry though, the musical chairs in chairpersonships of public bodies has brought in someone else who says she knows nothing about social work: why is it better to have both a chairperson and a chief executive who have no background in what they’re regulating? Surely at least if one hasn’t, the other should.

After all, the Laming report on how child protection is going comments that where you have a director of children’s services who knows nothing about social work practice, you should have a senior person who does. Not a principle they’re noticeably following at the GSCC, where it’s pretty light on social workers in senior positions.

It’s all a sign of the continuing influence of the claim of private sector business managers that anyone can manage anything, even if they don’t know a lot about it. Perhaps this view will change, now that it’s been shown not to work in banks.

Dudman, J. (2009) This charming man. Guardian Public January 2009: 10.

I see the Department of Work and Pensions has done somehting good about death (soon to be renamed perhaps the D of the credit-crunched unemployed and post-employment poor (or docupep). Anyway, you now only have to ring them once to notify them of a death and they will tell everyone else in government. The catch is that you have to answer security questions about the deceased person. Knowing the DWP, I guess this will be a quiz of University Challenge Paxmanesque proportions on your loved one, but if you fail the challenge they will check you out with whoever they have listed as next of kin. Still, good if it works.

DWP (2008) Reporting a death. Touchbase 53:17

The last post leads me to the gloriously-named Fallon Horan-Swords who deals with queries for the Offrice of the Public Guardian. The name is the most exciting thing about a Department of Justice consultation on Mental Capacity Act forms. One of the more boring, if necessary, outgrowths of government.

Jere if you want to look: http://www.justice.gov.uk/docs/reviewing-mental-capacity-consultation-response.pdf

You’ll have gathered that I’m doing catchup with my intray this week, after two months of being away a lot.

There’s a whole load of new leaflets about the Mental Capacity Act 2005, including stuff about the IMCA service and in particular about DOLS. No, that’s not a female type of IMCA as in guys and…, it’s the Deprivation of Liberty Safeguards for vulnerable adults.

These are the arrangements that have been brought in because of the Bournewood case, and affect people working in hospices and care homes where they might reduce the freedom of a patient or resident for their own good, restraining the, not allowing them home, not allowing visitors that they want and so on.

We’ve just had a worry here, because of the very common situation where members of a family all have different views about what to do for the best for a patient. But DOLS is not about what families do to each other, it’s about what care homes, hospices and the like do or don’t do. It’s always best for us to help families find a way through their disagreements, so they can agree how each should be involved.

You can download or ask for copies of various leaflets at the Office of the Public Guardian’s website (no that’s not The Guardian newspaper, so you won’t be sullied by left-wing journalism):

http://www.publicguardian.gov.uk/forms/forms.htm