Social care and social work are important in end-of-life care.
Malcolm Payne's blog focuses on developments in social care and social work that affect palliative and end-of-life care. It is part of the information work of St Christopher's Hospice, London.
A Parliamentary answer draws my attention to the Government Equalities Office and its website, which is a bit nothing at the moment, but has some interesting factsheets and publications; we might hope for more and better once it gets going. Its advisory group are doing the study of whether social class affects other strands of inequality; in interesting place to watch.
An absolutely astonishing debate in the House of Lords (29th January) on choice and inequality. I say astonishng because I do not usually think of a legislature as a place where they have such an informed and thoughtful discussion on a fairly high-flown topic. Daily politics in the trenches it was not, but political it certainly was, because it drew attention to arguments that public choice does not necessarily benefit individuals and that participation in everything is not all it’s cracked up to be.
It starred, you can only put it that way, the eminent philosopher and bioethicist Onora O’Neill and the equally distinguished economist Lord Desai. The point of their contributions to the debate was to emphasise that making choice available to people does not ensure equality, and anti-discrimination legislation should look at the outcomes for individuals, not only the statistical proxies of communities that may suffer high levels of inequality.
Here are some gems:
Baroness O’Neill of Bengarve: …Many of the more established arguments for greater choice have stressed the supply side. The complaint has been that monopoly providers fail service users, be they patients, parents, pupils or others. The hope has been that choice by service users will empower them, incentivise all providers to do better and sanction the worst providers. Ideally, on this argument, everyone gains except the inadequate providers—and that is all right.
However, these are not the only effects of increasing choice. The more obvious effects are on choosers, not on the chosen—on the public, not on providers. Choices will differ and the subsequent experience and opportunities for those who choose variously will also differ…Someone who chooses to smoke will increase their risk of illness and earlier death. These very obvious features of choice suggest that we should expect choice in public services to lead to varied inequalities.
We therefore have to decide which choices matter and should be protected and which equalities matter and should be supported. Inevitably, protecting some kinds of choice will produce inequalities. If individuals are free to choose to work long hours or to pursue the fabled work/life balance, then working hours, earnings and leisure are likely to differ between those who choose differently. Some inequalities will be judged fair because they reflect fair processes and differing choices. In others, we judge equality as more important than choice. For example, we do not allow individuals to choose not to pay the same tax as others in like circumstances…
Anti-discrimination legislation seeks to prevent discrimination on irrelevant grounds. However, it also requires discrimination on relevant grounds. Anti-discrimination legislation, for example, requires employers to discriminate on the basis of relevant skills and experience, both in making job offers and in promoting…
However, a great deal of discussion around the Bill is not about prohibiting discrimination on irrelevant grounds but about achieving what is called a more representative social and ethnic composition within each line of employment or each profession, or among students or holders of public office…
The attraction of focusing on this statistical equality is presumably that it looks like a way of reconciling choice with equality provided that…the people choose the right way. But people do not. In a diverse population, choice leads to different outcomes for individuals and for groups. So a question that we shall face in debating the equality legislation is whether a quest for more representative cohorts of employees, students and office holders is compatible with prohibiting discrimination on irrelevant grounds. Is this very abstract statistical equality—equality in the social composition of groups—compatible with genuine commitment either to choice or to substantive equality for the individual members of those groups? The reality is that trying to secure a representative composition within each group neither respects choice nor furthers equality for individuals.
It is worth asking whether representative participation is an important social aim for which we should be prepared to sacrifice both choice and other equalities. Perhaps the best case that can be made for it is that it matters for policy-makers who are looking at participation levels for some benefit or activity that is expected to be universal. Here population-level evidence is, I think, useful. For example, the United Nations Development Programme looks at the relative proportion of boys and girls in primary education in different regions. However, from the point of view of the little boy or girl who loses out, it does not really matter whether boys or girls are doing better in their region—they have lost out. Public health policy-makers also need to look at the social composition of those who do not receive immunisation. However, information about the unrepresentative composition of the group of children being immunised is, frankly, of little value to the children who lose out or to their parents. What matters to them is substantive equality of treatment…
Lord Desai:… given that the distribution of endowments may be, and often is, unequal, economists would argue that, given choice, each person can move to a better position than what the initial endowment gives them. Inequalities are not altered very much by that, if at all, but the level of individual satisfaction or utility is enhanced thereby. That is all that economists ever say. One of the questions about the notion of equality is the end-state that we want to achieve. By what measurable or at least comparable indicator would we judge whether we have achieved equality?
What struck me about British society when I arrived here 44 years ago was the strong notion—partly due to the influence of the Second World War, a very egalitarian experience for a very unequal society—that uniformity is equality. In the field of education, which I know something about, a lot of debate around equality in the choice of subjects and schools is hampered by the fact that people do not discuss the prior condition that career paths are very narrow and very few. We all take it for granted that the only high road to advancement in life is GCSEs, A-levels, university and onwards. If that is the only path involved, certain comparisons are indicated. The first would be to question the narrowness of the path. Why should there be only this path?
…We have to change our notion that there are right royal roads, and only a few of them, to advancement. We have to allow society to open up and create alternatives…
…There is great debate today about reserving jobs in government or places in higher education institutions for people who are deprived by social origin. Again the question is: should you judge an individual by membership of a certain category—you cannot avoid being a woman or black, for example—or should you judge individuals qua individuals? It is often the case that one member of a community which is on average deprived may be less deprived than another member of a community which is on average better off. Therefore, we do not want to subject people to a community label. Most importantly, when women are assigned to communities—a woman can be described as a Muslim or a Hindu, for example —it may often lead to greater disadvantage than if one just treated the person as a person, because the Muslim or Hindu society in question may have its own forms of discrimination which we may want to overcome.
The subject of our search for equality is the individual; it is not communities. We go by communities because they are rough indicators of where discrimination lies, but we have to remember that the subject is the individual and the end-state is how well the individual achieves the maximum potential that he or she can. The measuring of maximum potential may lead to problems, and involve categories such as happiness or income, but we have to be absolutely clear that in searching for equality, we do not restrict either the subject of our search or the end-state by which we define equality. In both, choice is crucial.
The full debate at: http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90129-0008.htm
Who rescues the rescuers, I ask? Sitting at home today, having decided it’s impossible to get to work in snow which is apparently the worst in London for 19 years, I see an RAC van stuck in the road outside my window, accompanied by another RAC van that has come to rescue it, only also to get stuck. I’ve often been caused to wonder who deals with the social workers who beat their children or neglect their elders. Yesterday, a nursing colleague who is in hospital has been plied with requests by her consultant to have a private room, on the grounds that she should have the privileges of a senior NHS staff member. Equality of access to health care?
What is ‘a public function’? With the increase in private organisations offering various services that used to be public services and everyone thinks of a public services, what rights do the people receiving have? Often, hospices as charities don’t have to comply with the same duties that public organisations have. This is true in combating various inequalities, for example. But I think that in general private organisations providing public services should have to meet all the same standards. Hospices will doubtless complain that they don’t have the bevies of lawyers to protect them that local authorities have and staff to deal with all the bureaucratic requirements. However, people’s rights should not be lost just because it is government policy to offload public responsibilities to non-government organisations and then not pay properly to cover all the rights that they would have had.
I was caused to think about this because writing the previous post led to me looking up the organisation that Jack Straw was speaking to, the British Institute of Human Rights. I came across their briefing, done with other groups, on the fact that the Human Rights Act didn’t cover older people in private care homes, or possibly provided with private social care services in their own home. This is old information, because the campaigners successfully got the Health and Social Care Act 2008 s 145 changed to include everyone who provides services in a private care home to be treated as though they were carrying out a public function.
The Health and Social Care Act 2008 at: http://www.opsi.gov.uk/acts/acts2008/ukpga_20080014_en_12#pt5-pb3-l1g145
The briefing on human rights in private care homes: http://www.bihr.org.uk/sites/default/files/HealthAndSocialCareBill_briefing2.pdf
The British Institute of Human Rights at: http://www.bihr.org.uk/
I came across an interesting review of equality statistics. Although rather technical, it usefully gives you a picture of what statistics are available on various forms of inequality (race, age, gender etc). I ound the most interesting sections were about security, and it points up: how can you feel secure if you fear being discriminated against in important aspects of your personal identity. For example, if older people fear that health and social care services do not give them the same priority as younger people, they can be made generally insecure.
Walby, S., Armstrong, J., and Humphreys, L. (2008) Review of equality statistics London: Equality and Human Rights Commission. http://www.equalityhumanrights.com/en/publicationsandresources/Documents/Equalities/review_of_equality_statistics.pdf
The annual Joseph Rowntree publication on poverty and social exclusion has come out, with as usual interesting statistics on health inequalities, measured as usual by premature deaths.
One interesting feature of the information about older people shows that fewer older people are helped to live at home in rural areas than urban areas. Associated with this, perhaps, older people are disadvantaged in using transport; particularly if they are single tey don’t get to make so many journeys if they don’t have a car.
Palmer,G, MacInnes, T. and Kenway P. (2008) Monitoring poverty and social exclusion 2008 York: Joseph Rowntree Foundation.
See it at: http://www.jrf.org.uk/bookshop/eBooks/2315-society-poverty-exclusion.pdf
Dropping into a local library while visiting in Clapham, I picked up a local history booklet about Caribbeans in Wandsworth, which reminds us of racial discrimination in the early days of the NHS.
‘Many of the Caribbeans were…trained professionals but…very few Caribbean nurses ever became Ward Sister and on the whole they were the ones that looked after the geriatrics, the disabled and the mentally handicapped…In fact, a quota system appears to have been in operation in the early days, but subsequently…[local hospitals] had predominantly black staff. White nurses were by then either seeking and obtaining posts in more prestigious hospitals or leaving the profession altogether’.
I wonder what this history tells us about feelings in the current situation.
Lock, G. (1992) Caribbeans in Wandsworth. London: Department of Technical Services Wandworth Borough Council.
Pics of the St Christopher’s building works, in solidarity with colleagues who are working in difficult conditions, so that things can be better in the future.
No way in – this is the work going on around the prospective new entrance to the building, but currenrly, there is no way in there.
The Department of Health has published a guide to doing equality impact statements for service developments; this is part of meeting the duty on public bodies to promote equality and avoid discrimination. Voluntary sector hospices do not have this duty, but they would want to ensure equality etc, too. Wouldn’t they? EqIAs (the jargon abbreviation – you should learn this one, you know you’ll be better for it) involve looking at new developments to make sure they do not discriminate and do promote equality.
The trouble is that voluntary sector organisations do not have the staff or resources to spend the time to do this for everything they do. So a free gift from me: I think the most important tip contained therein is the suggestion to think about possible effects or impacts on equality before you start doing anything and incorporate equality thinking into everything you do, so that it becomes as natural as British Summer Time (that was a joke). Then you’ll focus before you start on doing things to promote equality. It might not be as good as an EqIA, but it’s cheaper and better for the soul.
If you want to learn how to do them, though: Department of Health (2008) Equality Impact Assessment: Summary: Tool and Guidance for Policy Makers. London: DH.
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_090396
Every so often, the Parliamentary researchers produce a listing of unemployment and changes in unemployment for each area, which you might find useful if you want to look at how your area is being affected by thh credit crunch, or make a case about this issue.
You can find it at: http://www.parliament.uk/commons/lib/research/rp2008/rp08-083.pdf
Pics of the St Christopher’s building works, in solidarity with colleagues who are working in difficult conditions, so that things can be better in the future.
The new way (preparation, we think, for the new entrance from the road)
Phil Hope, the post-reshuffle Minister for Care Services, announced the government’s programme on age discrimination in Parliament recently. There’s going to be a new Equality Bill next year with the aim of ‘tackling age discrimination in the health and social care sectors’. These are the principles, which show that personalisation has made a switch from being a scoial care slogan word to applying to health as well. Note also, in principle 4, that we are not tackling age discrimination if it means we don’t get value for money. So equality is not a priceless value then?
age discrimination and unfair treatment based on age have no place in a fair society, which values all its members;
personalisation means that individuals’ needs for health and social care should be on the basis of their individual condition and circumstances, not general assumptions about their age;
services should be differentiated by age only where this is objectively justifiable; and
services for all people should be subject to achieving overall value for money in the use of public funds.
See the statement at: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm081111/wmstext/81111m0001.htm#08111153000010
Pics of the St Christopher’s building works, in solidarity with colleagues who are working in difficult conditions, so that things can be better in the future.
Quatermass and the pit (this is a title for science fiction freaks and really old people who remember the BBCtv serial from the 1950s; big hole in the ground, but woodwork suggests that that something is going to emerge: could it be an alien?