Over the Christmas period, I missed the government consultation on bereavement benefits, but you’ve got until 12^th March to reply. And there’s lots of useful info in the consultation document.

There are three bereavement benefits currently payable:

Bereavement Payment – a one-off tax-free payment of £2,000 payable to someone after their wife, husband or civil partner has died.

Bereavement Allowance – a taxable weekly benefit which can be paid to someone for up to 52 weeks from the date of death of their wife, husband or civil partner if they are over 45 and under State Pension age.

Widowed Parent’s Allowance – a taxable weekly benefit which may be payable to a parent whose husband, wife or civil partner has died if they have at least one child for whom they receive Child Benefit. It is payable until the claimant reaches State Pension age or upon cohabiting or remarriage/formation of civil partnership.

So that’s basically a cash sum to pay for the funeral and other expenses at the time, a weekly allowance for re-adjustment immediately after the death of a partner and then an extra payment if you are responsible for a child. The government’s position is that it’s too complicated and, playing their current relooping Mpeg (this is the new form of a cracked record – who has records any longer? Do young people know that they could get cracks?), it disconnects people from the employment market, so bereaved people are not incentivised to get back into work (which of course would be good for them and save the government money).

The first aim of their proposed reforms are that people should be supported by normal income support, rather than special measures for bereaved people, so they want to have a bigger up-front  bereavement payment for the transitional period. This of course will push all bereaved people sooner rather than later into the standard ‘get work or else’ approach of the present government. There is a whole paragraph about the ‘lack of conditionality’, which means there’s no requirement to seek employment as a condition of getting the benefit. I imagine people did not think about that back in the 20s when widows benefits were first thought of. I don’t know how I feel about it now: on the one hand I recognise that most women as well as men who are bereaved now do go out to work and want to do so, and tying them into help and encouragement to move forward into work is useful. On the other hand, making it a condition of a benefit has a harsh feeling about it that naïf old me sort of feels I don’t want to be part of our welfare state.

They want to remove the age criterion (civil servants are now so illiterate, they don’t know the singular of criteria, but I do) and comment that the combination of the age limit and different contribution requirements for the longer-term benefits means…

that around 80 per cent of Bereavement Allowance recipients and 46 per cent of Widowed Parent’s Allowance recipients do not receive the maximum payment.

As a result they suffer from greater uncertainty, which is bad when they are already suffering from the ‘loss of control’ in bereavement and emotional turmoil which means they don’t take in how the benefits are calculated. Alongside the ‘conditionality’ approach, I find this claimed concern with people’s feelings a bit hard to believe; it feels out of place in the generally callous style of the text. Perhaps they should give their consultations to social workers to vet for niceness, as well as the Plain English people for readability. Or perhaps they don’t feel social workers are nice enough nowadays to make a difference.

Then, as we know, there is a plan to have a universal benefit the same for everyone, to simplify the system, and the aim will be to have bereavement benefits alongside this. So most regular provision will be from the universal benefit, if you are eligible for it. However, they did research which shows that most people suffer a period of disruption in the immediate aftermath of bereavement and are proposing to target these benefits there.

There are two options they are consulting on:

1                    Pay an increased lump sum payment in the region of £6,000 for all claimants without dependent children and £10,000 for claimants with dependent children

2                    Pay a lump sum in the region of £3,000 and a monthly allowance of £250 for a period of 1 year for recipients without dependent children; and a lump sum in the region of £5,000 and a monthly allowance of £400 for a period of 1 year for recipients with dependent children.

Obviously option 1 would be quick and easy, while option two would maintain the security of a sense of support for a longer (but not too long) period. The sums proposed seem decent and realistic.

They are also consulting about whether to simplify the contribution requirements to whether the deceased partner contributed for the tax year before the death; the problem with this is that if they were palliative care patients they would have been ill, so they might well not have made those contributions so close to the date. Another option is to remove the remarriage disentitlement, on the grounds that they would not be paying the benefits for very long and it is unlikely that most people will be ready to partner up again, so they simplify the arrangements (and reduce civil servant time and the length of application forms) – always a good thing. This of course would generally be true, although I’m sure any palliative care social worker can tell you about the widows, or more often widowers, who have lined up the replacement partner well before the death. Perhaps even the DWP doesn’t have the life experience to be aware of that sort of thing.

Department of Work and Pensions (2011) Public consultation: Bereavement Benefit for the 21st Century. (Cm 8221) London: TSO.

The consultation document on the web: http://www.dwp.gov.uk/docs/bereavement-benefit.pdf

Staff working for a care provider in the Isle of Man lost an unencrypted memory stick (encryption means you have to put in a password before you can get at the information on the stick) with lots of client/patient information on it. Nobody knows where it went. They have had to sign an undertaking with the Isle of Man and UK regulator for information security.

Within the undertaking Praxis have agreed that all memory sticks, laptops and similar devices will be encrypted, all staff will be trained in the company’s policy for the storage, use and disposal of personal information, information which is no longer relevant will be disposed of in a secure manner, compliance with data protection policies will be regularly monitored and lastly the company will take steps to ensure personal data is secure.

In the iPad age, information is becoming more mobile, and people take it for granted that they can work on stuff on their mobile phones, Blackberries and iPads wherever they are. That means stuff is going to get lost. I wonder how many health and social care memory sticks have been lost from handbags or pockets over the past year or two. And how many were encrypted – difficult because you have to remember and input the password every time you use it. But it’s still personal information and often in a hospice or social care agency it will be highly personal stuff. Are we thinking carefully enough about this?

Another organisation got hammered for losing membership aplication forms on a train.

Details on the web here: http://www.ico.gov.uk/news/latest_news/2012/action-taken-after-care-provider-lost-unencrypted-memory-stick-18012012.aspx

I don’t know if you have ever talked to a woman who is approaching retirement with a reasonable salary but facing the prospect of an entirely inadequate pension; I find they are often in tears of frustration, anger and anxiety. This often arises because of the way the pension system has assumed women will rely on their breadwinning husbands, when for many people in the present generation long-term relationships that support a good pension just do not exist. It also happens because in the present and previous generations, and to a great extent still, women have usually borne the burden of child care responsibilities and other family caring, particularly for older relatives. A high proportion of women still get a lower basic state and second state pension than men in the same position, and this inequality will not be righted for some time, although the system is slowly moving towards equality.

I’m taken, therefore, by the detail of another House of Commons research report on Pension Contribution Conditions: sounds like a boring topic, but not to someone who is affected.

In particular, I think social workers should know that where people are doing more than 20 hours a week caring for children of other members of the family (even if there are breaks for respite care, holidays and hospital admissions), they can get a professional in health and social care to certify that they are careers and get National Insurance credits towards their pension. Anyone in health and social care can do this, carers do not have to be receiving some standard allowance. Have a look round the carers you’re working with and see if you can help them towards a better pension in the future. They might not be thinking about this, with all they have to do.

But their social worker should be thinking about it and doing something.

The report on the web here: http://www.parliament.uk/briefing-papers/SN03111. This also has stuff about other pensions changes and a current consultation on pension changes.

I said in my last post that Sue Taplin had been awarded her doctorate, and obviously you’ll be thinking that it’ll have interesting stuff in it about something to do with palliative care. Well, not quite. It’s about cancer survivors, but interesting for all that, because working in palliative care, you tend to think that everyone dies from cancer, but it’s not so, and she found that people’s lives are changed by surviving cancer; a greater sense of self-awareness very often. Like most abstracts, it doesn’t tell you enough detail to be satisfying. We’re all waiting for the articles, Sue; no pressure.

Abstract

“A few decades ago, cancer illness was a topic shrouded in social silence.  Today…stories of cancer illness have found a place in our culture…The emergence of this discourse means that those who become ill with cancer can expect some degree of acceptance and understanding (Kleinmann, 1988). The same cannot be said, however, about all those who survive cancer. Despite the interest that is often generated by stories of survival…there still remain unresolved tensions for those who have lived beyond the acute phase of extreme experience (Frank, 1995)” (Little et al, 2002).

This study, inspired by my practice as a social worker in the field of palliative care, seeks to uncover and explore these “unresolved tensions” in the lives of those who have experienced cancer as a long-term condition. By means of conducting semi-structured interviews with 18 people who could be described  as ‘living with and beyond cancer’, and analysing these narratives through a grounded theory approach, I sought to identify the meaning of this experience for these individuals, with the aim that these findings would inform future policy and practice in this sensitive area.

The themes that emerged from my study were that, in the main, individuals experienced cancer as not only life-threatening, but also life-changing,  not only in terms of how they developed in terms of self-awareness, but also of how they related to the world around them. Issues of hope and fear are explored, along with the meaning of support and spirituality in the lives of the respondents, and the new perspectives that resulted from the experience of facing one’s own mortality and ‘living to tell the tale’ (Stacey, 1996).

The glitterati of London palliative social work gathered at St Christopher’s yesterday (naturally, I exclude myself from this description) partly to congratulate Sue Taplin on achieving her doctorate, but mainly to discuss competencies in palliative social work, aided by a visit from Dr Susan Cadell, a senior academic at Wilfred Laurier University in Canada who was involved in the Canadian attempt to write social work competencies for what they call hospice palliative care.

Among the arguments for creating competencies is to clarify for other professions in palliative care what exactly social workers say is special about their role. Since other professions, in particular nursing, use competencies a lot, some people think that having similar statements about palliative social work might help to establish the profession more clearly with colleagues who can’t quite get what social work is about.

Some of the audience also wanted to use them to distinguish the wonders of palliative social work from other (and by implication in some eyes, lesser) forms of social work. This objective was greeted doubtfully by others, who thought that social work in child protection, or with mentally ill people, or with frail older people (or just about anything really) also dealt with difficult emotions, was stressful and a really important contribution to social well-being (especially if it was well done).

The Canadian project

Competences are based on research into the functional analysis of work roles. This was very popular in the 1980s as a way of looking at interdisciplinary teamwork. It takes a job title and breaks it down into a detailed list of functions. These are usually researched by getting together a whole crowd of people involved and recording their discussion, so you get a detailed list of possible functions, which are then tested out in consultation with a wider range of people. And indeed, this is what the palliative social workers did in Canada: they used a research technique called Delphi, which involves getting together a whole crowd of people involved, recording their discussion and then testing the results out with a wider range of people.

You can read the article here: Bosma, H. et al (2010) Creating social work competences for practice in hospice palliative care. Palliative Medicine. 24(1): 79-87.

(Researchers like to give classy – or classical – names to doing the obvious. You may be vaguely conscious that Delphi is a place in Greece where there was a famous oracle foretelling important events through the gods possessing a series of local peasant ladies of ‘blameless life’ – if you want to know how it worked, Wikipedia is the place: http://en.wikipedia.org/wiki/Delphi. Now you know that, you want to hear one of the prophecies, don’t you: also from Wikipedia: There are two roads, most distant from each other: the one leading to the honourable house of freedom, the other the house of slavery, which mortals must shun. It is possible to travel the one through manliness and lovely accord; so lead your people to this path. The other they reach through hateful strife and cowardly destruction; so shun it most of all.

(I’ll leave you to think that over. Anyway, the Delphi technique, originally created to help the American armed forces decide how the Soviets where going to target them in the cold war, is now used to achieve widespread consultation among different groups to gain agreement on a complicated problem, particular in healthcare professions – that is, according to the British Council, which publishes a useful and short description – with citations – of it: http://www.britishcouncil.org/eltons-delphi_technique.pdf. Deviation now over.)

Of course, any attempt to get social workers to agree about anything is bound to be complicated and so it was with this Canadian study. Finally, they got down to a basic list of competencies. These were:

Advocacy

Assessment

Care delivery

Care planning

Decision making

Evaluation

Education and research

Information sharing

Interdisciplinary team

Self-reflective practice

Community capacity building

Later in the consultative process, they added t these:

Cultural competency.

Each of these is buttressed by a fairly detailed list of what is involved in each. Apparently, some of the other professions have commented that these were fairly lengthy.

See for yourself: they are available on the Canadian Hospice Palliative Care Association website: http://www.chpca.net/social-work_counsellors_competencies.

The aim is then to create curricula for these in specialist or qualifying social work courses.

The Americans have also been at this: have a look at the NASW standards for social workers in palliative and end-of-life care:

On the web: http://www.naswdc.org/practice/bereavement/standards/standards0504New.pdf

Doubts about competencies

So far so uninspiring: what’s all the fuss about? It might seem obvious that you want people doing a professional job to have the ability to do it, so finding some way of defining what they ought to be competent at seems a reasonable thing to try to do. But, as Dr Cadell pointed out, many academics have their doubts about competences, and people who would like to look at the British literature on social work competences might like to find the following in their libraries:

O’Hagan, K. (ed.) (2007) Competence in Social Work Practice: A Practical Guide for Students and Professionals. (2nd edn) London: Jessica Kingsley.

Vass, A. A. and Harrison, B. (eds)(1996) Social Work Competences: Core Knowledge, Values and Skills. London: Sage.

Of these two books, O’Hagan is the only one now up-to-date and is written by people who are broadly sympathetic, whereas Vass and Harrison, while not totally dismissive, present the critique rather more enthusiastically. And any glance at the giant glossy American introductory texts on social work will tell you that the concept is alive and well over on the other side of the Atlantic (but not, according to Cadell, among her academic colleagues in Canada). There’s also a lot of it here, although it’s sometimes not called that, in the way in which social work education operates. For example, if you look at the higher education Quality Assurance Agency benchmark for social work courses, it has listings of things social workers have to be able to do, which includes listings of knowledge and skills in a variety of areas: these are in reality competencies, although the term is not actually used in the document, because UK academics have the same problems with it that Canadians do.

On the web:  http://www.qaa.ac.uk/Publications/InformationAndGuidance/Documents/socialwork08.pdf

And also in palliative care. To see the sort of thing that is available in the UK, look at the Common Core Competences for Social Care Workers in End-of-life Care produced by Skills for Care, the National End of Life Care Programme, the Department of Health and Skills for Health.

On the web at: http://www.skillsforcare.org.uk/developing_skills/endoflifecare/endoflifecare.aspx

So lots of people are at it, what’s the problem that the academics have with it?

The first problem is these long lists of things that people should be able to do. It’s complicated and detailed. All those of you who are refusing to be practice educators for students from social work qualifying courses have probably been put off it mainly by one thing. That is, the long tickbox lists of things that you have to produce evidence that the student can do, rather than people relying on your experience that in a global sense this person is OK at social work. There are practical ways of dealing with this. I get the students to write down the evidence that they would claim shows they can do this, and then I check it. Someone else refused to do it, and to get the placement the University paid one of their minions to be a ‘long-arm’ supervisor, complete the forms for the agency and shared the fee between the supervisor and the agency. One part-timer I know uses her own time just to go through the lists and put the evidence together: not everyone has this opportunity or would give up their free time to do it – particularly because the agency usually keeps the fee, rather than handing it over to the person who does all the work. But whatever you do, it is time-consuming, detailed, boring and repetitive.

As a result, it doesn’t encourage creative, flexible practice education focused on priorities.

On the other hand, I’m old enough to remember when some people, asked to write a report on the student they had just supervised for six months, sent in a few handwritten lines saying what a good egg they were. As an external examiner in those days, I not infrequently had to instruct universities to upset their relationships with their placement-providing agencies by complaining to the director of social services about the professional performance of their staff doing supervision work. I used to do it that way so that I could be blamed, not the poor staff on the course, who entirely agreed with me but had the job of fixing the placements for next year. Agency participation in qualifying education was partly designed to get the agencies to take responsibility for this, although generally this just meant that they stopped doing anything about social work education. I also remember the times when some supervisor would react adversely to a student and end up by psychoanalysing them for their personal problems, rather than looking rationally and in an organised way at what they could actually do. The use of competency checklists is an ace way of dealing with both of these problems. Both the practice educator and the student know what the student is required to be able to do, and there is a clear benchmark to assess them against.

The second problem is the research base: you can dignify it with research technique with a Greek classical name, but in reality all Delphi does is collect opinions. There’s not real empirical evidence there that this is what social workers actually do. In fact, Delphi tends to tell you what experts agree about: it doesn’t tell what actually happens on the ground. So what you have here is a list of what the competences that the people who believe in and are committed to palliative social work say is essential, but you have no idea what competencies social workers actually display.

The third problem is both theoretical and researchy. Functional analysis of job roles disaggregates something that is done holistically. So you don’t look at the job in the round and see the actions integrated into one another: instead you look at the job in little bits. It is difficult to research the distinctions between these different bits, hence the long and repetitive lists that tend to build up. And it looks at jobs in terms of ‘functions’ assuming that jobs contribute to an existing structure of tasks in an organisation, rather than looking creatively at possible new constructions of roles.

The fourth problem is that the listings start to look presumptuous. Outsiders look at it and say: ‘are they really claiming that they do all this and it is all essential to what they do?’ Other professionals look at it say: ‘Well, we do all that, too.’ The British Association of Social Workers once produced a report on the ‘social work task’ based on 1970s functional research into social work (now out of print and not on the internet, so I can’t give a link) and got roundly chastised for arrogance.

The answer to this point is that all the professionals (and others) working in palliative care occupy a territory in which their roles, knowledge and skills overlap. It’s the particular combination and emphasises of each role which defines it. But this, of course, also questions the methodology of functional analysis of job roles.

So how do you define palliative social work?

It’s all very well for me to witter on about the problems, how can we tell people what social work is in an understandable way. Several people at the meeting had various ideas, and of course I have several publications – I like to tell you about tehse occasionally. In particular, you can see my article on the role of social workers in end-of-life care in the journal End of Life Care:

On the web: http://endoflifecare.co.uk/journal/0101_colleagues.pdf

and you can download excerpts from my book: What is Professional Social Work?

http://lyceumbooks.com/WhatisProSW.htm

But in general, I’m a great believer in making clear that social work is about the social. Many social workers are currently keen to say that social work is not a ‘healthcare’ profession, particularly since in England it looks as though the registration of social workers will shift soon to the Health Professions Council (renamed the Health and Care Professions Council). So what is it then, the healthcare professionals all ask? To me, the objective of social work is increasing the resilience and solidarity of people in society. We work in healthcare, or with schools, or with parents and their children or wherever in order to achieve better parenting, better family care, better care for older people, disabled people and others and a better society in general. Getting involved in healthcare is only an instrument for achieving those social objectives. We don’t ourselves improve people’s health, we help them deal in their families and communities more effectively with the ill-health that assails them.

And the social involves being concerned with the whole social context of the people that we work with: their families and communities, their workplaces and schools. So palliative social workers tend to say (accurately) that while doctors and nurses focus only on the individual patient, social workers focus on the family and wider context that affects the patient and their care. That;s why social workers deal with boundary problems when agencies disagree or services need integrating. That’s why it’s their job to make the system work for their clients.

If you want a concrete example: here’s the one I use. Ask a counsellor to see someone with family problems because of death, dying or bereavement. The counsellor will sit down with their identified client (and refuse to see anyone else, because they’re focusing on their client) and help them to think through the emotional and relationship difficulties and practical problems that they are facing and identify ways of dealing with them, supporting them to do so. The social worker will get involved. For one thing, they will visit the home. If the children are distressed, they will work alongside the parents with the children. If there are relationship problems they will talk to both the husband and wife and anyone else who can help or is getting in the way. If there are money problems, they will sit down and work out what benefits can be claimed and help claim them. Show me the counsellor or clinical psychologist that will get involved in that way.

A visit to an old people’s home in Croydon for the launch of a new St Christopher’s project, bringing together social care and end-of-life care. I just had to go because the topic is such a direct hit on the subject matter of this blog.

For some time now, St Christopher’s has been focusing on all the people in our community who don’t get and don’t need a hospice service – the majority of people who die at home and in care homes. Too many of them, as the National End-of-life Care Programme says, end up in hospital, often because of anxiety by staff in a care home about whether they can cope with someone whose condition seems to be getting suddenly worse. Or, to be honest, whether the management of the care home have got anxious because too many people are dying and they don’t want to get the reputation for that. The problem with this is that, even if people think care homes are God’s waiting room, the managements mainly act as though everyone’s going to live forever with this wonderful care they’re getting. Of course, older people themselves realise that the reason why they’ve moved out of their own home is that they’re going to die soon and we have to recognise that better in health and social care.  As it is, we can all remember the Fawlty Towers episode in which a resident dies and John Cleese has difficulty in smuggling the body out of the hotel; that’s another example of the ‘nobody dies’ syndrome. Some hospitals and hospices are also set up to get the bodies out the back way (the John Cleese way, but probably not that incompetently), and in reality most people do not want to be involved with someone’s death unless they have to be. So it’s not surprising that people, even health and social care people, back away a bit when the prospect comes up. You can feel confident in your professional or interpersonal skills and still not think that you want to be involved in the death of someone that you’ve got to know.

So the National End-of-life Care Programme in its document: ‘The route to success in end-of-life care – achieving quality in care homes’ is keen to get care homes to be more prepared to take on people who are dying in their care home.

That is what the St Christopher’s project is all about. Pre-project statistics in Croydon showed that above the national and regional average of people (more than 50%) died in hospital and below the national and regional average died at home or in a care home – the place where they live. So, for some time, they’ve been working with nursing homes there, using the Gold Standards Framework (GSF), which improves training and commitment to good quality care at the end of life. They’ve massively improved the proportion of people dying in the nursing home rather than being blue-lighted to hospitals from  55% to 76% over a  year period. Obviously that means people dying where they are surrounded by things and people that they know rather than being in an alienating hospital. So now they’re going to repeat the trick with ordinary care homes starting with the four that are taking part in this project. Fewer people die there, but it’s still a big issue.

How do they do it? It’s mainly about supporting and developing staff so that they feel they can make a real contribution to making it better for their patients. At the launch, Veronica McCleary from Sanctuary Care in South Norwood, talked about the very real difference the preparation for the project made to her staff. She spoke about the increased confidence and a feeling of achievement that she and staff who attended the training had felt. They are now going to use this new project to help to improve the infrastructure in the organisation to support them. And you can’t change practice just by giving people training: you have to back that up by showing people in the care home how you can do things better and supporting them while they practice until the point where they feel able to do it on their own.

The St Christopher’s people are using the ‘six steps’ of the route to success document materials: you can see the St  Christopher’s document on their website: http://www.stchristophers.org.uk/sixsteps.

But some of this is greyed out because the Croydon project moves through the six steps in order. If you want to see a more complex document about six steps, you can look at the document prepared by a similar project in the North-West (but that seems to enjoy complicated forms more, although the overview guide is comprehensive):

http://www.endoflifecumbriaandlancashire.org.uk/six_steps.php

Or you can keep coming back to the St Christopher’s website as things get ungreyed over the next year:  http://www.stchristophers.org.uk/sixsteps. They also give you the email address of Jo Hockley to write to. She’s leading the show.

All this is a bit nursey and toolified (see below). The level of disability of people in care homes has grown and the consequent need for help and care has become more complex over the years, so skills with physical care have become more and more important. It’s a pity that this means that we concentrate on this, because a bit more skill on people’s social needs and personal development would also be a good idea (hence the St Christopher’s work on taking arts activities to care homes that I’ve talked about before). But the main point is that it’s quality of care that will help to move social care forward, and less concern about the financial and commissioning models which at best re-arrange the recliner chairs on decking of the Titanic care home

To go back and read up on the whole thing: the route to success document (the basis of the St Christopher’s and North-west projects) here: http://www.endoflifecareforadults.nhs.uk/assets/downloads/RtS_Care_Homes___Final__20100804.pdf

And if you;re interested in Gold Standards Framework for nursing homes (it’s also done with GPs), go here: http://www.goldstandardsframework.org.uk/.

Actually there are other route to success documents, for example on prisons, but more to the point there are many resources on the route to success website (now gnomically called RTS, so you might not have realised what it was about. Indeed, you might not have realised that route to success was about improving practice in end-of-life care. Obviously someone thought this was a cool title and it’s become a National Eol Care Programme brand. Unfortunately, it’s a brand that hasn’t had the advertising heft of Heinz, so while old hands may realise it’s end of life care baked beans, newcomers won’t know what it’s all about).

Anyway, you can get shedloads of useful documents, together with hammers and chisels to use on the coalface of end-of-life care. (Regular readers will know that I think there’s too much of a tendency in the NHS to conceal the reality that our job is mainly to fill in lots of forms, by calling forms tools – it seems so practical and sounds so professional and focused when you mention them to politicians. We might almost be as useful as plumbers).

Sorry about that, there is a website with lots of RTS tools to download. (There you are: if I’d just said that would you know what I was going on about?)

Useful stuff for helping people at the end of life: http://www.endoflifecareforadults.nhs.uk/tools/core-tools/rtsresourcepage

With all the talk about personalisation and direct payments, you might find it useful to look at a House of Commons Library report on the legal basis for direct payments, the things local authorities have discretion over (for example, employing relatives to help someone who is receiving direct payments), who is eligible, how much you can get and so on. It also (on the last page) has good links to further information. It’s only eight pages long. Presumably they write these things because MPs need help to deal with them.

It’s on the web, here: http://www.parliament.uk/briefing-papers/SN03735

I’m not sure what I feel about the Dying Matters writing competition – you can win a prize for writing about death, dying and bereavement, from DM, the coalition that wants everyone to know about, understand and cope with death better. There are already many accounts by skilled writers about their experience of death, dying and bereavement: Simone de Beauvoir springs to mind, and Joan Didion’s books more recently. And many of these are set in the context of an extended account of the life of the person concerned, or their philosophy, or their relationships and family life.  So you see the death in its place within the whole life of this person. I think that is far harder to do in 2,500 words; perhaps slightly easier in 40 lines of poetry.

Putting death in the context of a whole life with its joys, achievements and strangenesses is important; othewise what you get is a death misery memoir or awfulising about the services or what some professional said. Death is only important in the continuity of the life with which it connects.

And we’ve had too many misery memoirs of late – you know the sort of thing: how dreadfully poor we were, how our father beat us and so on. And how we rose above it and achieved. Like many people, I don’t want to wallow in the past misery that someone experienced. What I always remember when I read them is all the people I’ve worked with who went through terrible experiences in their families and their lives and who actually did not come out of it into the sunny uplands of international best-selling authordom; most of the people I’ve worked with who had rotten lives and were abused and oppressed by the people and public services around them stayed that way for most of their lives. They got very little out of this world that those of us who are richer or had better chances are living in.

Some people have begun to say the same sort of things about misery memoirs. I think most people thought that Joan Didion’s 2006 book ‘A Year of Magical Thinking’ was an inspiring, thoughtful account of her responses to her husband’s death and could inform everyone’s responses to similar aspects of their lives. At the same time her daughter was also dying, and a book published this last year ‘Blue Nights’ is not exactly a death and bereavement book, but is more about ageing and her relationship with her daughter. However, some people at least thought this was exploiting these events in her life too much; more than we wanted to know. This was so even though, skillfully written, they view a broader canvas than the death that generated the thinking and feeling that they explore. So, again, more about the interaction of events in our lives.

So are we encouraging people to express publicly more than we want and need to know? We have found at St Christopher’s, in recent years, that artistic expression through music, art, craft and writing can be a powerful way of helping people explore and value the experience of their lives and their deaths, and to learn about others’ experiences. The result of these expressions is an artistic product, which represents that person, their experiences and their thoughts. But many of the products are either personal or deal with wider aspects of life. I reproduced a poem from one of them in my book written with Margaret Reith ‘Social Work in End of Life and Palliative Care’: it expressed how someone in the building trade who was now ill missed the buzz of working and getting results from his work. So yes about the experience of dying, but about that experience within the mainstream of a life.

I worry about too much wallowing in the death experience, even though I know that people value using their artistic skills to work on their experience.

You can see information about the competition here: http://www.dyingmatters.org/finalchapters

To Poland to speak at the launch of ‘Live with Dignity To the End: Clinical and Social Aspects of Palliative and Hospice Care’ a book of papers about palliative care edited by Dominik Kryzanowski and colleagues; this is volume 3, but I didn’t see the first two volumes. A very Cicely Saunders title: she used to say that people must live until they die – with the emphasis very much on the ‘live’ and all that is entailed by living. Strikingly, the first half is mainly about psychological and social aspects of palliative care, while there’ s also a pile of medical stuff too. Many of the papers reflect a ‘quality of life, quality of care’ approach to palliative care, and it’s an interesting update on palliative care in a European country from their own perspective.

I ran into Kamila, a graduate from the Wroclaw school of social work who had a placement at St Christopher’s a year or two ago and on the back of it is now a volunteer organiser at the Wroclaw hospice – I’ve been there, it’s an attractive new building among trees in the grounds of a hospital on the outskirts of the city.

An interesting paper in the book from Marian Niemiec (Marian is a boy – he’s a priest) describing the struggle to get a hospice going in the Opole area – getting the support and finance together has taken most of a decade, although a home care service is already operating. I had some minor involvement at an earlier stage, visiting the gutted school, a distinguished redbrick building, they were converting and appearing on Polish tv to promote their attempts to extract money from various sources. I’m glad they’re almost there – he told me at the conference that they will be open by next May when I visit again.

Just one sign of the struggle of so many people to introduce palliative care across the world.

Interesting that the book and the conference was a production of the public health department of the Medical University in Wroclaw (I’m not attempting Polish transliteration). Palliative care is very mnuch a public health iniaitive in the World Health Organisation’s eyes, and so it should be: successful palliative care prevents so much distress in people’s lives by increasing families’ resilience to later stresses and strains.

The book is ISBN 978-83-62640-24-9

From: Publishing house WCM

Plac Mikolaja Kopernika 4/6

45-040 Opole

Poland.

In a legal commentary on R (on the application of (1) Sefton Care Association (2) Melton Health Care Ltd (3) Westcliffe Manor Nursing Home (4) Benridge Care Homes Ltd (5) Craignare Care Home) v Sefton Council, (a case heard in November 2011) there is a nice crisp comment from the lawyers. The court decided that:

the local authority had failed adequately to investigate or address the actual costs of care and had thereby failed to have due regard to those costs, contrary to both the guidance issued by the secretary of state and that issued by the Department of Health

the local authority was clearly under a duty to consult with the care home proprietors. There had, however, been no consultation in any meaningful sense and the local authority had therefore failed in its duty.

What this means for social landlords.

Here comes the comment:

Local authorities cannot just cut the fees it pays in a ‘cavalier fashion’ and in effect, say ‘tough luck’ to providers.

This may not seem reasonable to local authorities, who are under all sorts of pressure, but it does make sense to any normal person. Once a care home takes on a resident, they are stuck with them, unless they are going to upheave their lives again by sending them somewhere cheaper. So a local authority should be serious when it assesses what is a reasonable charge.

I wonder if the same applies to the commissioners of healthcare services, since they mainly do not pay the full cost of providing hospices. The previous government looked at the costs of providing palliative care and decided to carry right on relying on charities. but policy, in the UK and internationally, is that people are entitled to palliative care. The Conservative view is that hospices are a good thing, and a wonderful example of the Big Society. It is views like these that lead one to the cynicism that their view of the big society is something someone other than the government pays for.

The legal comment at Lexology: http://www.lexology.com/library/detail.aspx?g=1867ece5-5277-4902-9db0-ae264cb6d08b&utm_source=Lexology+Daily+Newsfeed&utm_medium=HTML+email+-+Body+-+General+section&utm_campaign=Lexology+subscriber+daily+feed&utm_content=Lexology+Daily+Newsfeed+2011-11-29&utm_term=