I’ve had these two comments on a post some time ago about end-of-life care in prisons, and although I’ve published them as part of that post, I think comments sometimes get lost to people who come to the blog at other times, so I reproduce them here also as a new post.

Thanks Ros and Kate.

Comment from Ros Cook [Visitor] in response to End-of-life care in prisons

Email: ros.cook@westrminster-pct.nhs.uk • IP: 194.176.105.47 • No Spam Karma

A piece of work that is going on with regard to prisons that I can highlight is the challenging Inequities working group of Action for London. (Action for London is a vision for cancer that is about improving the outcome and the experience of Londoners with cancer.) This working group is currently looking at prisons and specifically the access to cancer screening and the access to end of life care. We have identified considerable challenges to overcome in order to implement equitable end of life care in that setting and will be making recommendations around advanced care planning and workforce development.

Comment from kate heaps [Visitor] in response to End-of-life care in prisons

Email: kateheaps@gbch.org.uk • IP: 84.92.199.81 • No Spam Karma

At Greenwich and Bexley Cottage Hospice we are working with our local prison (Belmarsh) which holds Category A prisoners and therefore has the potential to have more prisoners who are approaching the end of life. The prison officers themselves as well as staff working in the healthcare wing have identified the needs of their inmates/ patients in the area of advance care planning and are well aware of the specific challenges they face. They are also well aware of their own needs around training and suppport supervision. We are by no means there yet, but I was heartened by the attitude that I encountered.

People keep asking me for this, so I thought that readers of the blog might find the information useful. These are the three documents that specify the content of social work courses; you can use these for explaining to colleagues from other professions what social workers ought to be able to do and know.

The Department of Health document says what the Secretary of State has ascertained, as he is obliged by the Care Standards Act to do, as the requirements for a social work course; these are rather generalised and prosaic. The more detailed ones are the QAA benchmark, written by academics for other academics which tell you what should be in the curriculum of social work courses. The occupational standards tell you what social workers who have qualified should be able to do. This is being redrafted at the moment, so I’ll update these links again when the new document appears. There are also documents for lower-level courses in social care, published through the Qualifications and Curriculum Authority.

DH (2002) Requirements for Social Work Training. London: Department of Health.

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4007803

QAA (2008) Social Work. Mansfield: The Quality Assurance Agency for Higher Education.

http://www.qaa.ac.uk/academicinfrastructure/benchmark/statements/socialwork08.pdf

TOPSS UK Partnership (2002) The National Occupational Standards for Social Work. Leeds: Skills for Care.
http://www.york.ac.uk/depts/spsw/documents/3SWNOSdocpdffileseditionApr04.pdf

(18th February 2009; inserted later because I am away)

A colleague not in the palliative care world has recently been admitted to hospital with cancer and died after only a short admission; it seems that she did not want visits from work colleagues, and people are shocked that she did not seek treatment earlier. As I read the paper on the journey home, this connects in my mind with the commentary on Jade Goody, the reality tv star who has announced she is now suffering from terminal cervical cancer, and plans to get a lot of well-paid publicity from her impending marriage and death ‘in public’, as the paper puts it, to fund her children’s future.

That’s a legitimately personal choice. How people die, who they want alongside them as they do so and how they get themselves through the process ought not to be subject to others’ demands. I was always taught that you could invite who you like to your wedding and nobody was entitled to be aggrieved; is that the same as your death? You can be generous about who is allowed in, but why should you be?

To Stavanger, in a new university in the oil capital of Norway, to give some lectures on international social work and globalisation with my colleague, Gurid Aga Askeland; our joint book (see 23rd June 2008) is on the masters in scoial work curriculum here. The Western coast of Norway, warmed by the Gulf Stream, is not regarded by Norwegians as really having winter. The joke apparently is that they have winter (i.e. what a Norwegian regards as serious snow) one day a year. However, as we know in the UK, the Gulf Stream is being a bit temperamental with climate change and they are having their second winter in a fortnight, what Gurid (who originates up-country) calls a ‘light covering of snow’ when we get to our hotel breakfast on the second day.

This light covering is about the level that led to London completely closing down a few weeks ago, but the Norwegians just get on with it, and we catch our bus up the hill (the university is on the outskirts) as usual, slowed a bit by fairly heavy traffic, since, even with the de-rigeur snow tyres, the radio station has abjured everyone to be careful. People are weaving between the traffic on bicycles; Gurid tells me that you can get snow tyres for bicycles too.

The main focus of our work here, though, is the cultural outcomes of faster and better communication and travel on relationships between different ethnic groups, both across the world and within countries, particularly as a result of migration.

Students are interested in issues about death and dying and in the university bookshop, there are a number of books about palliative care, but in socialist Norway, you get a strong feeling that everyone should be responsible for social support and that it is integral to how they see health and social care. There’s a bit of an impression of ‘why would you separate that off from ordinary health and social care?’ and a general acceptance of the role of the state. One of the issues with palliative care is that its proponents focus on the specialist role, while I think most people think first about non-specialist help at the end of life.

However, you get the same picture as I got in Portugal a few months ago (see 10th November 2008), of a commitment to social provision, but a frustration with the bureaucratic character of it. But is the UK provision any less bureaucratised in spite of its efforts to marketise and privatise health and social care services with the aim of de-bureaucratisation? I’m not convinced that the Thatcher/Blair anti-statist revolution in ownership of care has led to any greater responsivemess in providing care services. I am convinced, visiting European countries, that a greater commitment to shared responsibility is a valuable thing that they sometimes retain and we have mostly lost.

And the St Christopher’s paper in the journal Groupwork is one of our series on day care. For some time, we have been arguing that the main purpose of palliative day care is to meet social objectives, but the focus on medical objectives in the research has tended to suggest that day care is not ‘effective’. What this means is that it’s not effective in meeting medical objectives. Whoever set up a day centre to meet medical objectives?

This is another example of the Department of Health promoting something called ‘healthnsocialcare’, thinking that social care just supports healthcare objectives. Actually, of course, there are very legitimate social objectives in healthcare, which ought to be defined and explicitly measured. But what you get from healthcare researchers is a shrug of the shoulders and a ‘not us gov’.

This research set out to see if patients could identify social objectives in the groups they were part of in the St Christopher’s day centre. Yes, they could, and they liked what they experienced, as all the research shows. Interestingly, though, many of the staff focused on achievement and self-fulfilment, but didn’t explicitly pursue and help people with the social objectives.

Food for thought there. Social objectives are just like healthcare objectives in that you have to specifically define them and set up activities that aim to meet them. You can’t just assume that people will develop social skills because you put them in a social situation; you have to design the social situation and the programme to hit the objectives. I think healthcare professionals and researchers tend not to think about that.

Payne, M., Hartley, N. and Heal, R. (2008) Social objectives of palliative day care groups. Groupwork 18(1): 39-75.

Unusually I see a recent copy of the journal Groupwork because it contains a St Christopher’s article. It has only recently appeared, although the journal issue is dated January 2008.

However, it also has a very interesting article by Gillian Chowns about groupwork with children facing the loss of their parents, and involving the children in collaborative research; they researched the children’s experience together. As always with groupwork the preparation phase was key. Another interesting point is how both children and researchers were part of multiple other groups alongside their involvement in the project.

Chowns, G. (2008) ‘No, you don’t know how we feel’: Groupwork with children facing parental loss. Groupwork 18(1): 14-37.

To Northern Ireland for a rehabilitation in palliative care conference organised by the University of Ulster. This conference was unusually involving with a large number of short discussions of their work by a range of occupation, physio, complementary and arts therapists, You rarely have the chance to hear the detail of the issues discussed in some very impressive work. The Allied Health Professionals are making an increasingly strong contribution to palliative care, which is underestimated, such as social work is. There ought to be some alliances to be made there.

Conferences website: http://www.ahp.ulster.ac.uk/academy/index.php

Palliative care social workers might be interested in a House of Comons answer that produced information about people getting high rate DLA under the special rules (which means that they are likely to have been terminally ill).

Since this blogging program does not do tables, you have to upload the Table: click here:

High rate DLA claimants Jan 09

Or get it in Hansard with a series of social security questions: http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090128/text/90128w0014.htm#09012878000058