St Christophers
Malcolm Payne

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.

Misys Charitable Foundation

Archive for the ‘inequalities’ Category

UK minority ethnic groups – cancer rates

Wednesday, October 28th, 2009


The NHS Evidence Update on cancer rates has been published, and gives you an idea of the accumulated evidsence on what kinds of cancer differentially affect particular minority ethnic groups. It says:

Overall cancer incidence was found to be lower in South Asian, Chinese and mixed race groups than whites.  However, some important specific differences were also identified:

  • Black males of all ages were more likely to have a diagnosis of prostate cancer than white males. (Age standardised Relative Risk (RR) between 1.26 and 2.48, based on different assumptions regarding patients with unknown ethnicity)

  • Black males and black females had higher rates of cancers o f the stomach. (RR 1.14 – 1.74)
  • Black males and black females had a higher rate of liver cancer than white males and females. (RR 1.47 – 2.67)
  • Black males and black females had a higher rate of myeloma than white males and females. (RR 1.79 – 2.80)
  • Black females aged 65 and over were at a higher risk of cervical cancer than white females of the same age. (RR 1.13 – 2.50)
  • South Asian men and women had a higher rate of liver cancer than white males and females. (RR 1.47 – 2.43)
  • South Asian females 65 and over had an increased risk of cancer of the mouth (RR 1.18 – 1.97), whereas South Asian men may have a lower risk of getting cancer of the mouth than white men.
  • South Asian females aged 65 and over had a higher risk of cervical cancer than white females. (RR 1.15 – 2.29)

Worth a look at the whole thing and links to the evidence:

http://www.library.nhs.uk/ETHNICITY/ViewResource.aspx?resID=326764&tabID=290

Worldwide inequalities in services for dying people

Monday, March 23rd, 2009


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

Inequalities info

Tuesday, February 3rd, 2009


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.

http://www.equalities.gov.uk/Default.aspx

Choice, inequality and the House of Lords

Tuesday, February 3rd, 2009


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?

Monday, February 2nd, 2009


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?

Public rights in private and voluntary organisations

Monday, February 2nd, 2009


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/

Older people not secure because of discrimination?

Monday, February 2nd, 2009


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

Poverty and exclusion, especially among older people

Monday, January 12th, 2009


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

A person is a person because of other people

Wednesday, December 3rd, 2008


This rather nice phrase, from the African, it looks like, but it doesn’t say, is from a very impressive knowledge survey on social exclusion internationally, in relation to health inequalities.

Jennie Popay, Sarah Escorel, Mario Hernández, Heidi Johnston,Jane Mathieson, Laetitia Rispel on behalf of the WHO Social Exclusion Knowledge Network (2008) Understanding and Tackling Social Exclusion: Final Report to the WHO Commission on Social Determinants of Health. WHO.

You can get it at: http://www.who.int/social_determinants/knowledge_networks/final_reports/sekn_final%20report_042008.pdf

It’s part of the WHO commission on what to do about the social determinants of health inequalities, which has a website with loads of useful information: http://www.who.int/social_determinants/en/

EqIAs: now you’ll have to read this to find out what they are

Tuesday, November 18th, 2008


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