First, two of the parties in government in particular nations of the UK.

Of those I have not previously looked at, the DUP (the Democratic Unionists in Northern Ireland) have a quite detailed manifesto compared with many others. It wins out on palliative care, among all the manifestos I have seen:

The World Health Organisation recognizes that palliative care incorporates physical, psychological and spiritual needs and it is important that all elements are properly resourced.Three quarters of people indicate that they would prefer to die at home, and this must be respected as services are commissioned.Those in receipt of such care should be informed about benefits available to them and given sound advice around finance and other personal matters as they plan for the end of their life. (p 45)

Can’t say fairer or more thoughtful than that. Then, their final objective on health:

• greater delivery of end of life care in primary and community settings rather   than secondary care (p 32)

Then, mentions of social care:

Opportunities should be freed up for charities and other providers with a proven track record to deliver services.The third sector has much to offer
in social care provision in areas such as mental health,dementia,learning
disability and acquired brain injury. (p 29)

The recommendations of the Bamford Review of Mental Health should be implemented. Approximately 24,000 people currently suffer dementia in Northern Ireland, and this figure is expected to climb to 50,000 by 2051. Health and social care costs for dementia of £200 million will double within twenty years.We need to be well-equipped to treat and support these individuals. A comprehensive dementia strategy for Northern Ireland is required. (p 45)

As well as these specific points, they are good examples of the way the health agenda is markedly preventive and community oriented; it rather nicely recommends asking NICE to identify existing practice that is non-cost-effective, as well as new things that are. There’s a fairly positive section on valuing older people. There’s also a lot on poverty and inequality -  of course they’re sticking up for the protestants against the catholics.

The Scottish National Party has a smallish manifesto; however its summary puts older people right up there at the front:  a fair deal for pensioners with pensions rising in line with earnings and a guarantee to protect free personal care and concessionary travel (Page 4 after the photos). A lot of the manifesto is about being champions for the interests of Scots people; for example:

we believe Scots must not lose out as a result of policy decisions for england. That means there should be no new taxes or contributions, or changes to attendance allowance or Carer’s allowance that will impact on Scots, to pay for reform of care for the elderly down south.

Referring to Sinn Fein, the other power-sharer in Northern Ireland, there still seems to be no manifesto, but there are campaign statements:

Website for these: http://www.sinnfein.ie/election-campaign-statements

I’d like to comment on the Respect Party manifesto, but my browser will not download it. However, the website does not reveal much interest in health and social care, or older people; it mainly focuses on anti-racism and equality issues, particularly around housing, education and work; a party for the working man, I decided.

The website: http://www.therespectparty.net/breakingnews.php?id=864

The British National Party has now published its manifesto; searches for palliative, end of life and social care drew a blank. However, it does mention ’social work’; apparently the police are doing too much of this, politically correctly, and it’s got to stop.

Looking more broadly at the manifesto, NHS funding would be increased if there (in your dreams) were a BNP government by removing the foreign aid budget, and old age pension and public sector pensions would be sorted out. Housing and other public services would be relieved by not having to provide services to any immigrants, and human rights and equality legislation and organisations would be removed. Serious criminals will be similarly removed to South Georgia (the little British colony miles from anywhere in the Atlantic) and the death penalty would be applied to lots of nasty people, especially rapists.

They are also into compulsory volunteering: ‘a Community Award Scheme for our young people which will take the form of a compulsory one year period for all school leavers during which they will work in the community as the final element of their education. This scheme will allow young people to choose between a variety of community service options which might include, for example, caring for the elderly or disabled people, environmental or heritage restoration projects or military training. The final choice of direction in this regard will be dictated by the school leaver’s scholastic record, preferences and suitability. These courses would be character building and would instil discipline, social and community values and work ethics in all young people.’

That’s going to be popular with the gap year middle classes. Yes, when I’m elderly, I want to be cared for by some lout forced to look after me. Volunteering should mean what it says; you should want to do it.

You would laugh at all this, or weep about the attitude to other human beings. But these views are the attitudes of many pub bores across the country. You can imagine them poking you in the chest to emphasise their points, as they down yet another pint. How is it that we are educating people in social and personal understanding so badly that this sort of approach to the world still exists?

Website: http://bnp.org.uk/pdf_files/BNP-Manifesto-2010-online.pdf

Last week’s post on the Law Commission is actually likely to be the most important long-term material on social care. But today’s announcement that the election is starting means that a lot of political debate will shift away from detailed policy considerations, and everything will be up for grabs again.

The debate about care costs

Parliament in going into its ‘wash-up’, getting through all the stuff that’s still hanging around, so I feel that I need to complete my own wash-up and pick up on the accumulation of materials on funding of long-term care. Most of the emphasis is on older people, the largest population group, and perhaps the one most of interest to people in palliative care, but of course whatever is decided will affect all groups who might use social care services. Perhaps the best general analysis of the issues is contained in the Select Committee on Health Report, originally an investigation of and response to the Green Paper. This is both informative and politically astute, because it explores political judgements alongside the usual policy stuff.  Paragraph 372 gets it right:

We would have liked to see all the political parties come together in that spirit to map out a programme of sustainable reform. Instead,  regrettably, the Government is hastily drafting a White Paper while also rushing through Parliament a hurriedly concocted Bill that cuts across its own Green Paper, in a febrile atmosphere of unedifying pre-election party-political squabbling and point-scoring.

The Select Committee on Health Social Care Report: http://www.publications.parliament.uk/pa/cm200910/cmselect/cmhealth/22/22.pdf

The social care green paper last year was about issues broader than the funding issue, but how to fund adult social care is the big political issue. No politician cares much, unfortunately, about the many issues about the quality and availability of social care. This is in part realistic, because it is development in social care practice and professional education that will have most impact here. Let’s hope that the proposals for taking on the Task Force recommendations on social work will make a contribution, but it’s hard to imagine this in view of the fuss about the least important of these, the College of Social Work. And also not a lot will happen because nobody much is going to spend money on social care or say a lot about it in the election. Even though some of the importance that people attach to health care is partly about how they or their parents are going to be cared for in their old age, government thinking treats this separately.

Getting personal care right, and the care deficit

The Green paper offered a number of options for funding adult social care, and primarily care for older people, which led to a great deal of political and media interest. To everyone’s astonishment, the government then came forward on 25^th November with a partial scheme for free care for older people in the Personal Care at Home Bill, at the same time publishing a consultation, which ended in late February, on regulations that would go with the Bill.

You can see the consultation at: http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_109139

And the report on the responses at: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_113945.pdf

What they found, not surprisingly, is that most people and organisations involved supported the idea about making free care at home available to more people with the highest needs, but were worried about funding and organising it, particularly in short order. A significant feature of the proposals is an emphasis on promoting home care rather than residential care, and promoting re-ablement services, to help more with people who would be capable of a greater degree of self-care at home. You can’t disagree with this, and you can understand why the government is concerned that the funding debate, as so often before, does not degenerate into how you can fund more care home places, which on the whole are not the favoured option for many older or disabled people. This is a welcome focus on how we can use professional skills and an effective preventive service; just what I said I would like to see when talking about the development of professional social care above.

But…

The perception arises that this is another New Labour ‘stop relying on state care and taxes paying for it and get yourself together to care for yourself’ policy. Such policies are entirely reasonable in one way, because a lot more getting people towards independence would be possible than in our currently dependency-focused care services, and most older people would really like these independence and prevention priorities to be more important in social care. However, you can’t also avoid the impression that this is about trying to organise the services in such a way that the government can get out of paying for most of it, as with their policy on disabled people and single mothers – in fact anyone who is likely to be a significant drain on state resources for a longish time.

I think people just find this unacceptable: their experience of the NHS, and frankly their view of common humanity, leads them to expect that when they need care and it is absolutely clear that they need care, in addition to their own efforts and family support, they expect the state to rally round and do the business. There would be mixed views about how much they are prepared to contribute towards the cost. For most people the answer would be a fair bit if they could afford it probably, and most families would also expect to do their bit too.

But people actually expect the service to be there when they need it, and they don’t expect to be told to sort it out themselves. Neither do they expect to be punished by physiotherapy and aids and adaptations into coping at home with inadequate personal care when they’ve had their approved slice of re-ablement. Physiotherapy, aids and adaptations are valued, but they are not personal care.

The implication of this is that we need to get the personal bit of personal care right. At the moment most people, because of the ghastly stories they have heard, and with some truth, don’t believe their care will be personal and good. We all know, and it says in the Select Committee Report, that there is not enough money in the system currently for that to happen: it’s underfunded. Moreover, the country’s financial mess is likely to mean that for the foreseeable future it’s going to continue underfunded and probably get worse.

There’s a further stumbling block of all these policy statements: they assume that there is no ‘care deficit’. The care deficit is the concept that there is not and never has been in all of history enough care in the world to go round.

Do you share the following scenario? The care I want, when I’m really up against it, is my lovely wife. Unfortunately, there’s only one of her, and when I’m up against it, she will probably be older and in need of care herself. So what I really need is two people who will care for me just like her; actually what I want is for them to be just like her. In shifts, so that means four of her. For me, there aren’t four Margarets in the world. And she’s likely to be competent at it. If you ask her, she would probably say that she’d like me to be around when she’s up against it, but actually she’d like someone better than me at the hands-on personal care. In shifts, so that’s another four people as well as me. You only have to think about it to realise that the kind and quality of personal care that most people ideally want is not realistically likely to be available to them if their care needs are significant. Something more or less adequate most of the time is probably what most people expect and would put up with. But there is not enough pay and there are not enough people who want to do the job for the numbers we are talking about in twenty years time.

The BBC News account of issues about care costs (includes interviews with the main parties’ health spokesmen, a clip of a woman talking about the costs of her husband’s care and a link to the BBC’s good summary of the issues in Social Care Q & A): http://news.bbc.co.uk/1/hi/health/8593118.stm

Guardian news items: http://www.guardian.co.uk/society/social-care

The Personal Care at Home Bill

Meanwhile the Bill has been going through Parliament. I’m not going to go through this, because the debates represent the issues about paying for care looked at more generally in this post, and because I think the detail and  a lot of these actual politicians are going to be lost in the election. Time enough when something actually happens later on. If you want, you can see information about the Bill and read the latest version and explanatory notes at: http://services.parliament.uk/bills/2009-10/personalcareathome.html

I list below where you can read the main debates:

(House of Commons)

http://www.publications.parliament.uk/pa/cm200910/cmhansrd/cm091214/debtext/91214-0008.htm#0912147000001

http://www.publications.parliament.uk/pa/cm200910/cmhansrd/cm100112/debtext/100112-0005.htm#10011255000002

http://www.publications.parliament.uk/pa/cm200910/cmhansrd/cm100112/debtext/100112-0020.htm#100112103000002

(House of Lords)

http://www.publications.parliament.uk/pa/ld200910/ldhansrd/text/100201-0002.htm#1002012000311

http://www.publications.parliament.uk/pa/ld200910/ldhansrd/text/100222-0002.htm#1002222000313

http://www.publications.parliament.uk/pa/ld200910/ldhansrd/text/100301-0002.htm#1003011000638

http://www.publications.parliament.uk/pa/ld200910/ldhansrd/text/100317-0002.htm#10031747001048

(House of Commons considering the House of Lords amendments)

http://www.publications.parliament.uk/pa/cm200910/cmhansrd/cm100330/debtext/100330-0026.htm#10033137000007

Death tax or national care service?

There was a political fuss about all this when the three main English parties had meetings to see if they could arrive at a political consensus about how to fund adult care, which was blown apart by jockeying for the election. The Conservatives are keen to say that the option of a levy to pay care costs on people’s estates after they die is a ‘death tax’. Actually, it’s what goes on now if your local council agrees to defer its charges until after you die. So Labour came forward with a delaying White Paper, which, aside from helping people with the ‘highest needs’ with free-ish care now, puts off the decisions for a Parliament and funding for longer.

A good Guardian report about this, which gives links to some of the political shenanigans, is at: http://www.guardian.co.uk/politics/2010/mar/30/burnham-old-people-reforms-concessions

You can read the White Paper at: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_114923.pdf

Citation: DH (2010) Building the National Care Service (CM7854) London: TSO.

The title refers to the policy wish to build a national care service that mirrors the NHS. This objective is understandable, because most people cannot understand the distinction between health and social care, and expects to see a similar approach. The aim is to achieve this by portability of assessment between local authorities which would continue to have autonomy about the care provision that they make. However, as the Law Commission consultation on adult care law, which I discussed in detail last week, makes clear, you cannot legislate for total portability because each local authority will vary in what it provides in response to an assessment brought from somewhere else. One point which politicians and policy wonks don’t seem to realise also is that a professional organising or providing a service to a vulnerable older person cannot take responsibility for a service unless they make their own assessment and judgment. So it’s not possible to give people the security that what they’ve got now in Dawlish they can get if they move to Daventry (that’s from one small town in Devon to another in Northamptonshire if you’re geographically challenged). It’s not even possible to ensure that their needs will be seen in the same way.

Another problem with this is thinking mainly about people with the ‘highest needs’, because focusing on this group ignores preventive work. Social care has never been resourced to do a lot of prevention, certainly adult social care – there’s been a bit more in child care on occasion. This plan virtually encourages not bothering with anyone until they, their carers or their family are really desperate. It’s not what people want because it does not provide that sense of security that the NHS provides: that give or take a bit of shambles from time to time, it will be there for them when they need it.

The Conservative option of a low-price voluntary insurance scheme with a one-off payment at retirement for care homes only also won’t work. As most of the comment has suggested, while some Conservative voters can probably afford it, poorer people probably can’t, so the state will end up paying for lots of care anyway. Also, most people will not pay insurance for needs that they can’t yet foresee and hope to avoid. That would be so even if they trusted the insurance companies, which because of their behaviour over the last two or three decades most people don’t. Insurance that everyone pays throughout their working life would probably be acceptable, as it is in Germany for example. However, our benighted level of political debate sees this as an unnecessary tax rather than a sensible collective provision, so this is probably not a runner. A practical problem with this Conservative proposal, like the Labour ‘highest needs’ one, is that it only focuses on a small part of the care system: most people will need home care, not a care home and this proposal will push them towards a care home.

(In parenthesis, if we’re going to get people to understand this we probably need to change the terminology, too: did you understand that last sentence? Of course you did, because you are in the system, but the distinction between care home and home care is likely to be lost on a lot of people.)

So this debate also comes back to the care deficit. There is not enough of the absolutely right personal care in the whole world. This would be so. even if you imported enough poor African and Asian women to do the rich world’s low-paid care and domestic work at the current low level of resources in the care system. Or you could export older and sick people to be cared for in situ in poor countries where the low-paid labour is available. I expect we will be doing a lot of that in future decades, in the same way that the well-off middle classes moved to the Mediterranean in the 1980s and ‘90s (and came back again when they got older without family support and the NHS).

No, what we need to do is to put enough preventive resources into the care system so that people can be helped to stagger on independently for as much of their increased time on this world as possible. Then, we need to resource services so that a reasonable proportion of them get good enough care for as much of the remainder of their time on earth as we can manage. It will not be wonderful; I don’t think anybody believes it will be. Nobody wants the experience of growing older, becoming heavily dependent on others, needing masses of personal help just to get through the day and not being able to do very much interesting with their time. So drop the rhetoric about quality of care and personal development in our third age. Right at the end of our third age, just about coping more or less adequately is about what most people expect. If people hope and plan for better many of them might well be lucky. Really demanding care needs arenot universal,  so quite a lot of people will  be happy with how it goes. Quite a lot of people will also make plans to leave this earth if an adequate experience in their later life is not available.

In a way, I think the Labour approach has actually been realistic. We can probably stagger on with the present system until the early baby boomers are in their mid-seventies – that’s the early-mid 2020s. By that time, let’s hope the economy and political will can ante up enough resources and caring competence to do a reasonable job for them. That reasonable job will be more preventive, more making the world older person-friendly – we can start on that now. And it will also be a mixture of state, personal and family finance and action. All of those contributors will be paying for care services through insurance and commercial services as well as state provision. All are going to have to do more and better than they currently can. This means better professional training in a whole range of professions, more family care and support (I’d better start improving my skills up towards my wife’s likely expectations) and more taxpayer money and effective state, private and voluntary sector service management and provision. That will be hard to do, but we still have a decade to get better before the real crunch comes.

There was also a moving account from something called Pearl (it means ‘positively enriching and enhancing residents lives’. Yuk – they should not have bothered with the words; this is a hotel company that also does care homes and it calls its hotels pearl; they could have done without this). And notice that they don’t know about apostrophes, when I’m a crabbit old service user, I shall be demanding that my provider is able to spell and puctuate their glossy brochures, as evidence that they take trouble over what they do.

However, now I’ve had the grouse, I thought this was a very good, non-unipart, way of motivating their staff to learn and develop both the systems and the skills of good care for people with dementia. Note, you management consultants: systems, skills and people – all together, all at once. That’s holism for you.

And truly convincing.

There’s a website but it’s not very informative: http://www.fshc.co.uk/elderly-care/dementia-care

It was assisted dying day on tv last night and in the press in the last week. To sum up:

The controversialist, novelist Martin Amis, advertising a book, complained about a tsunami of older people with dementia.

The original interview was in the Times:

He is painfully aware that his time as a writer is running out. “Writers die twice: once when the body dies, and once when the talent dies,” he wrote recently in a review of Nabokov’s The Original of Laura. “Medical science has again over-vaulted itself,” he says now, “so most of us have to live through the death of our talent. Novelists tend to go off at about 70. And I’m in a funk about it. I’ve got myself into a real paranoid funk about it, how talent dies before the body.”

I can’t help feeling he’s being a leedle dramatic here, but his hatred at not feeling “100%” is genuine. He is disgusted at the problem of the ageing population: “How is society going to support this silver tsunami? There’ll be a population of demented very old people, like an invasion of terrible immigrants, stinking out the restaurants and cafes and shops. I can imagine a sort of civil war between the old and the young in 10 or 15 years’ time.”

Amis’s solution is typically extreme: mass euthanasia. “There should be a booth on every corner where you could get a Martini and a medal,” he says. In fact, he was thinking about it only last year, when his stepfather died “very horribly”, he says. “He thought he was going to get better. But he didn’t. I think the denial of death is a great curse. We all wanted to assist him… It was clearly a lost battle.”

http://entertainment.timesonline.co.uk/tol/arts_and_entertainment/books/article6996980.ece

The  Guardian has a video of him talking about this afterwards; he says he is a fan of euthanasia:

http://www.guardian.co.uk/commentisfree/belief/video/2010/feb/01/martin-amis-euthanasia-assisted-suicide

What is particularly striking about this comment is that it is more about ageing and dementia rather than assisted dying. This is a very negative view about ageing and its impact on society, and a very excluding view about older people and people with dementia. However, he has had some sympathy for this point of view, as opposed to the reaction to his euthanasia comment. It’s alright to feel that all the older people are a blot on the landscape then? I think there might actuially be a majority for this. Our media do not seem to have realised what, sixewise,  an important population group we are; they are still into the importance of catering fro youth because they are the future. Well just remember that older people of 60, like Martin Amis are the future, probably fro the next thirty years.

Then there was quite an interesting debate reported in the Observer:

http://www.guardian.co.uk/society/2010/jan/31/assisted-dying-debate-euthanasia

This included Ilora Finlay doing her defence of care and palliative care; a sample:

IF: The whole of palliative care is about trying to help people to make choices that are right for them, to enhance the quality of their life when they have it. That is hard work. The minute you start saying you can take shortcuts in care or you can leave people or give them the impression that things can’t be done for them, then you drive them further into despair. What you’re presenting them with is not about real choices in care, you’re giving them a choice of either staying in despair or being dead. I don’t think that is a choice.

I think this is a really good point: it is important not to polarise the issue between despair and death; there are other alternatives.

Listening to her on Today, on BBC Radio 4 on Monday morning, as they were promoting both the Panorama and Terry Pratchett programmes on BBC1 that night, I found it interesting that she was arguing to take the issue out of healthcare; make it a legal process, so that trust in doctors is not affected by providing assisted deaths. Is she recognising that the public and media pressure for some sort of provision for assisted dying makes a change in the law inevitable, and she’;s beginning to set out the stall for the way it should be organised. Of course. she was also connecting with Pratchett, because he is arguing for a tribunal to make the decisions, including medical and legal involvement, as you can see in my excerpts from his speech below.

The Panorama programme then had an extended interview with Kay Gilderdale, found not guilty of attempted murder of her daughter last week (she has previously been found guilty and sentenced for assisting suicide). The 31 year old daughter was very disabled by serious and chronic ME and had injected herself with large doses of morphine, explicitly trying to kill herself. When she seemed distressed her mother crushed up more tablets and did other things, including getting advice about how to follow through. Because she did this at her own decision, rather than just accepting the course of her daughter’s actions, this put her outside the Director of Public Prosecutions’s guidelines for deciding not to prosecute. See my post on Saturday, October 10th, 200 for information.She is not the only person recently, since Frances Inglis was given a life sentence for a ‘mercy’ killing of her brain-damaged son.

There are excerpts from Kay’s interview on the Panorama website:

http://news.bbc.co.uk/panorama/hi/

This is a news account, including an interview with a neighbour who speaks of Frances’s feelings, of the Frances Inglis case: http://news.bbc.co.uk/1/hi/uk/8466140.stm

Panorama also commissioned a public opinion poll which showed that for a terminally ill patient, 75% of people thought that family and friends (or medical professionals) should not suffer prosecution; opinion was evenly balanced where there was chronic pain. This suggests that for many people, the issue of whether patinet is terminally ill is an important factor. This reflects an unreal perception, since as Ilora Finlay said in the Observer debate cited above that deciding when someone is terminally ill is quite hard.

Article about the poll: http://news.bbc.co.uk/panorama/hi/front_page/newsid_8487000/8487768.stm

Poll details here: http://news.bbc.co.uk/1/shared/bsp/hi/pdfs/01_02_10_Poll_results.pdf

The main event last night was Terry Pratchett’s Richard Dimbleby lecture (mostly actually read by the actor Tony Robinson, since Pratchett was not well enough to be able to get through such a long )text. It was a beautifully turned speech, and there is a shortened version in the Guardian today:

http://www.guardian.co.uk/society/2010/feb/02/terry-pratchett-assisted-suicide-tribunal

The new thing about this, to me, is the suggestion of an assisted dying tribunal:

That is why I and others have ­suggested some kind of strictly non-­aggressive tribunal that would establish the facts of the case well before the ­assisted death takes place. This might make some people, including me, a little uneasy as it suggests the govern­ment has the power to tell you whether you can live or die. But, that said, the government cannot sidestep the ­responsibility to ensure the protection of the vulnerable and we must respect that…

The members of the tribunal would be acting for the good of society as well as that of the applicant – horrible word – to ensure they are of sound and informed mind, firm in their purpose, suffering from a life-threatening and incurable disease and not under the ­influence of a third party. It would need wiser heads than mine, though heaven knows they should be easy enough to find [no, I think actually is will be tough to come up with a procedure that is not horrifically bureaucxratic], to determine how such tribunals are constituted. But I would suggest there should be a lawyer, one with ­expertise in dynastic family affairs who has become good at recognising what somebody really means and indeed, if there is outside pressure. And a ­medical practitioner experienced in dealing with the complexities of serious long-term illnesses.

I would also suggest that all those on the tribunal are over 45[bit ageist that; many young people are sensitive to these issues too], by which time they may have acquired the rare gift of wisdom, because wisdom and compassion should, in this tribunal, stand side-by-side with the law. The tribunal would also have to be a check on those seeking death for reasons that reasonable people may consider trivial or transient distress. I dare say that quite a few people have contemplated death for reasons that much later seemed to them to be quite minor. If we are to live in a world where a ­socially acceptable “early death” can be allowed, it must be allowed as a ­result of careful consideration.

Let us consider me as a test case. As I have said, I would like to die peacefully with Thomas Tallis on my iPod before the disease takes me over and I hope that will not be for quite some time to come, because if I knew that I could die at any time I wanted, then suddenly every day would be as ­precious as a million pounds. If I knew that I could die, I would live. My life, my death, my choice.

This proposal speaks to one of my concerns about possible changes in the law, because I think that once these things become official in some way they also have to become bureaucratised, so that they are no longer personal decisions by those involved, but will mean officials, no matter how qualified and experienced, having to go through complex and time-consuming procedures to implement intricate guidelines. Ilora Finlay’s point in the Observer debate is also relevant, that a legal change will also lead to a change in social attitudes, which will make killing more acceptable in a variety of ways.

Amis’s point and another Finlay insight is that really this is all about care. people do not much want to be cared for for a substanital lump of their life, the care we can provide is not good enough; resources are limited and will increasingly be rationed. So are we proposing to assist in people’s deaths because we are not willing to provide the best care? At least in these cases a person providing outstanding care and clearly, as with Frances Inglis, ‘with love in their heart’ they are reacting to a personl predicament. But will official assisted dying become an acceptable practice in a policy context where we are not prepared to provide enough care services and good enough care serviecs.

And a social work view? Social workers are going to be involved, because whatever the decision-making process, social information and social records will be used as part of it. Either they will be sent out to make a report, like adoption, guardian ad litem, and social histories, or their past records will be sued to see what family attitudes are, because they will be the profession that has kept records of families.

And these matters are social and policy matters: how much care are we prepared to provide to increasing numbers of people whom the media, like Amis, find smelly and not very interesting? And who is going to provide it? There will not be enough carers and care serviecs to go round; there are not enough now. So is no services the reason we want to go for assisted dying?

I think most social workers instinctively agree that people should have the choices. but how far does poor care mean that the reality of their choices is ‘no choice’. And most of the people arguing for assisted dying currently are strong-minded middle-class people who can think through and support their own opinions. Pratchett talked about granny going and banging he stick on the tribunal’s desk. Not of lot of dying people have that capability. He talks about early decisions, but that’s only relevant to a few well-prepared, long-term disabilities; what about most of the people that I meet that are not thinking in the long-term about what is going to happen to them? Will the tribunal clog up with bureaucracies and not be able to deal with urgent cases. Or will we all say what grade of assisted dying we want in our lasting powers of attorney when we register them with the Public Guardian, as he is urging us all to do?  What about not-very-articulate people who do not have the confidence to apply to one of Pratchett’s tribunals, or need someone to prepare their case? The Government is cutting back on legal advice and aid in many socially important legal situations: is this going to be another where you either make it on your own or not at all? Will there be class inequality in making your case for assisted dying?

Even if you support assisted dying. there’s still a lot to be thought about.

The Land Registry sent me a pile of leaflets pointing out that older people who live away from their property (for example in a care home) run the risk of fraudsters taking over the title of their home without their knowledge and selling it on. You have to make sure the register is up-to-date and they know how to contact you if you live somewhere else. Otherwise, presumably, someone claiming to have taken over your house can simply pick up mail from the Land Registry and you would never know.

Contact them on: http://www.landregistry.gov.uk/ to get leaflets yourself; currently this issue is on their front page, but there’s loads of other property info there.

Now off to a centre for older people in Wroclaw. Actually this is a virtual centre, because there are only two people who organise services in local centres and run a telephone helpline. Most interesting: they have imaginative partnerships with local companies, and give out certificates to businesses if they are assessed as older people friendly. This is a great development on disabled friendly assessments; I have not seen the older people assessments elsewhere. I forgot to ask, but wouldn’t it be good if they had a team of older people to do the assessments?

Discussion about older people’s attitudes to local services. Some people prefer local community involvement, while others prefer the anonymity of a central information service. This emphasises how important choice in the style of provision is – not everyone wants to be community-involved.

Also, about the communist past and the engagement-focused present. A bit of a feeling that older people who spent most of their lives expecting that the state will provide, actually want services, and do not want to be engaged in participation and self-management activities. Makes you think about the personalisation and self-directed care agenda in the UK.

My view: people should be entitled to say: ‘Just give me what I’m entitled to, never mind all the participation rhetoric. I just want the services, not the self-direction’.

A new Alzheimer’s Society survey looked at care for people with dementia on hospital wards: a massive 77% of carers were dissatisfied with the weay that their relatives with dementia were cared for in hospitals wards. Would it be any better in hospices? You would hope so, at least partly because staffing is better. But most older people do not come into hospices for their dementia, but for other conditions, so nurses and other staff may be as clueless as their colleagues in hospitals about caring appropriately for people with dementia.

Lakey, L (2009) Counting the cost: Caring for people with dementia on hospital wards. London: Alzheimer’s Society.

Note that many of the official websites focus on social care, not on healthcare; yes, there are healthcare treatments to be done, but most of the issues are about how people live with dementia.

The main BBC report on the study has an interview with Angela Rippon, the former tv newsreader, about her mother as well as a good summary of the main facts:

On the web: http://news.bbc.co.uk/1/hi/health/8359836.stm

The BBC learning site has an ace video case study of a woman with early stage Alzheimer’s and her husband. Although her family resources are such that many of the problems health and social care people see are mitigated, it does show people working on coping.

BBC Headroom info: http://www.bbc.co.uk/headroom/wellbeing/guides/alzheimers_and_dementia.shtml

There are also lots of  good Alzheimer’s society fact sheets: http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137

On a positive note, there’s a lot of useful practical and professional information on the SCIE dementia gateway website:http://www.scie.org.uk/publications/dementia/index.asp

You may also want to look at the Department of Health National Dementia Strategy website: http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Olderpeople/NationalDementiaStrategy/index.htm

A number of local councils have ‘Beacon status’ (that means the government has decided they are an example to us all) for ‘positive engagement of older people to support and promote greater independence and well-being in later life’; there are four case studies on the Idea website which show what they did. We could all learn from this, including palliative care organisations, because we should all be encouraging older people to change our services for the better.

On the web: http://beacons.idea.gov.uk/idk/core/page.do?pageId=9413984

I see from Hansard that we have a minister for the ageing society; I’m so pleased – does that mean anyone’s doing anything? Perhaps someone would ask her.

The Minister for Pensions and the Ageing Society (Angela Eagle)