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

If you haven’t come across these, you might be interested in some end-of-life podcasts from the University of Buffalo School of Social Work. There’s an interview with Jean Kutner, a medical professor from somewhere else, on the development of evidence-based practice in American hospice practice; this is really just an average trawl through why it’s good to get evidence on your practice (which is frankly a bit dull) but towards the end, she’s good on how you facilitate research in your hospice.

The real gems are three talks from one of their own faculty members, Deborah Waldrop, talking about her own research on end-of-life care decision-making. She has a really engaging manner, and is easy to listen to (unlike Dr Kutner). The first one explains ‘what is hospice?’, tells you about American hospice care and has a bit of history, which includes St Christopher’s and Dame Cicely. This is less than 15 minutes, so it packs a lot in, but she makes it really interesting, explaining also doing personally relevant research.

The later episodes are about her research: how did people make decisions on their pathway through hospice services?  Episode two explains some of the issues in doing research with people who are dying. You get the results in the longer (but still less than 15 minutes) episode 3, with some nice quotations from patients and carers about some of their dilemmas in deciding on their pathway through end of life care serviecs.

I expect many of my readers are not used to podcasts. How do you get these? First, you go to the website; click on the link below. It gives you a list of their many podcasts. Click in the search box (top right-hand corner) and type in ‘end of life’. This gets you a list. Choose the one you want and click on ‘download MP3′. You get a rectangle which has a slider on it showing where they are as it plays the podcast. It will start off saying ‘buffering’, while it downloads enough, and the rectangle fills as more of it downloads, usually it keeps ahead of the slider, but if not it will stop for a bit until more arrives at your computer. When it’s ready your media player (probably Windows) will open and start playing it – the rectangle becomes a narrow line at the bottom, but the slider continues its way along as it plays. Each of the podcasts has some music and an intro. Once you’ve heard this, you won’t want it again; you can click and hold your cursor on the slider to move it to the right along the rectangle or line until you get to what you want to hear about; you can also slide it back to hear stuff again. It will carry on to the end (which is always an ad for the Buffalo School of Social Work – look at the website, it’s one of the historic schools in the US), and you can leave it running in the background and do other stuff on your computer while listening to it.

The website: http://www.socialwork.buffalo.edu/podcast/

I was full of excitement last week with the Queen’s birthday honours. Those revealing pictures of Catherine Zeta Jones, said by The Guardian to be ‘leading’ the honours, left me all a-flutter.

Down the list, we find that Barbara Monroe, the CEO of St Christopher’s, also got one (and a zizzier one than CZJ – Barbara’s now a Dame). The photos just do not offer quite the same thrill, though. But never mind; soon, presumably, we’re going to get new pics in the hat for the Palace ceremony. Or will it be a fascinator? We’re all agog to know and I shall reveal it as soon as a photo is extant.

In the meantime, congrats Dame Barbara; that’s recognition for the recent renewal of St C’s under her leadership, for child bereavement services where she has played a big role, and end-of-life care in general. And for social work – we can claim one of our own.

Some pics of the new consultation rooms at St Christopher’s – part of my continuing series about the building updating. Our plan is to encourage more patients and carers to use the Anniversary Project open space as a base for coming into the hospice for a range of activties, including consultations with doctors, nurses, welfare officers, social workers and many other professionals. This reduces travel time in crowded London and means that more people can be helped with the same number of staff.

Therefore the environment of the consultation rooms is important. They have three elements: an office element, an examination room element and an interview element, as you can see from these pics of one room:

This post is about some follow-up on the NICE guidance in palliative and supportive care. Non-British readers perhaps need to know that NICE (the National Institute for Health and Clinical Excellence) is the government body that collects research and views about what is effective in various healthcare services, advising government bodies that purchase them. Social workers have been concerned about its discussion of psychological support. In most hospices, social workers do a lot of this. Of course doctors and nurses also do it and probably do most of it, but they tend to pass on the complicated and time-consuming bits. NICE did not really deal much with social work. This was partly because it is a healthcare biased body that gives priority to healththink. Most people involved would have thought that it was fine to neglect the fact that most palliative care patients have been receiving social care services for years before they end up connecting with a hospice. It is also because a similar body (SCIE, the Social Care Institute for Excellence) should do this, but wasn’t commissioned at the same time to do the same thing for social work in end of life care. They don’t do joined up thinking at the Department of Health on social care because they have a healthcare mindset.

The National Cancer Action Team has been pegging away for ages at operationalising the NICE Guidance. It has finally got around to psychological support, which it issued a consultation paper about, and of course it continues to pursue the NICE line. This has hyped social work concern although the consultation is about the measures that peer review teams will apply to cancer networks. These are the multiprofessional committees that coordinate palliative care services in each area, so they’re hardly at the frontline or organising services and the measures actually offer quite a fair bit of flexibility. They are the sort of guidelines that say ‘You’ve got to have this, that or the other plan’, but don’t really tell you what the plan should be.

Whatever, to work out the guidance on psychological support the NCAT has picked up the NICE approach which, not unreasonably, was to ask psychologists what they thought and of course they came out with the idea that anything called psychological should be be done by psychologists. So NICE set up four levels of psychological care, in which, rather sniffily, people such as nurses and social workers can do the two lowest levels of, although they need to be trained and guided by the wise, and the upper levels can only be done by psychologists, or, in the case of level 3 those who have been made a bit wise by being given extra tuition by the specially wise.

In case you haven’t worked it out, in the previous paragraph wise = qualified in psychology or psychiatry. You’ll have gathered that I’m not all that sure that a qualification on psychology gives you that much more competence in responding to people’s life problems or the problems of the world than rather similar qualifications in other related fields (or possibly just developing yourself as a competent human being, but that’s another story). There’s a whole range of knowledge out there and different qualifications give you a purchase on different bits of it.

This kind of specialisation produces sillinesses among all professions. As an example of a psychological silliness I am inclined to quote the British Psychological Society’s publication on psychology in palliative care. This is a classic example of professional imperialism, claiming that the whole world is to be understood as a psychological problem that only psychologists know how to do something about. One role of psychologists in palliative care for example is said to be: ‘Dependency issues, such as fear of leaving the hospice/hospital, etc.;’ (BPS, 2008: 17). They’re welcome to dependency issues, a term which I regard as an offensive way of labelling people as psychologically inadequate for being dependent on others, which we all are. On the substantive point, though, most people who fear leaving hospital or hospice quite legitimately worry about how they’re going to cope with a major illness in their own homes, and they also fear losing their own home and having to go into some ghastly nursing home (they’re not all ghastly, but people fear this move). It just brings psychology into disrepute to call these widely-experienced and legitimate fears ‘dependency issues’. Then seeking to justify psychotherapy to resolve them takes the biscuit. The much more sensible social work approach is to sit down with patients and their relatives, find out what their problems are and organise the services or help them make decisions that remove the problems that raise the fears on the first place. Psychologists don’t do that because they only work with the patient, or their family, they don’t go on to sort out practical problems, or they do that by opassing it on to social workers. I say ‘get a social worker in the first place’. See BPS (2008) The Role of Psychology in End of Life Care. Leicester: British Psychological Society.

One of the problems with the NICE approach is that in reality there are very few psychologists around in palliative care and most of this work is done by social workers.Consequently, it tends to be closely intertwined with social care responses to issues, as you see with the ‘fears on leaving hospital and hospices’ example. It is senseless to set up a whole series of practices that rely on a limited set of ideas associated with one small and not very important profession, that seek to exclude other small and not very important professions.

Another problem is that, because palliative care is not a mental health or psychotherapy service, the main focus is not on psychological problems. Some people (I’m thinking here of Randall and Downie, 2006) have argued that patients and certainly their relatives, who are not anyone’s patients, have not given informed consent for psychological, social and spiritual interventions and all people really need is a nice kindly doctor to assuage their worries. This is a medical silliness similar to the psychological kind. However, it does make the legitimate point that we should be cautious of psychologising or sociologising common humanity. And, says he, delinquently, medicalising it too. See Randall, F., & Downie, R. S. (2006). The philosophy of palliative care: Critique and reconstruction. Oxford University Press.

The NCAT measures, and the NICE guidance, contains a really expert piece of professional imperialism by the psychologists, which says if it’s psychological call a psychologist. NCAT should have applied their minds to it and realised it’s not just psychological, it’s  also a lot of other things. It’s all to play for, of course, because even if NCAT falls for this, the measures are only about how cancer networks organise themselves, not about services. So what social workers have got to do is stick up for themselves, get themselves on the committees and fight for reality as they understand it, just as the psychologists have done for reality as they understand it. Playing the game means joining the team.

Consequently, for the St Christopher’s response to the consultation I have drafted a comment that starts off by saying this:

There’s been a gap while I’ve been giving lectures abroad and while the new format of this blog has been sorted out.

Now another pic of the new St C’s; it’s another view of the new Anniversary Centre (I’m now calling it Annicen) where patients and family members congregate before or after appointments or day centre, or to look for info. I have been known to say it’s really just like Starbucks, but the menu’s better.

This blog is written by Malcolm Payne as part of the information work of St Christopher’s Hospice.

St Christopher’s, a constant innovator in end-of-life care, is one of the UK’s largest hospices, a leading palliative care charity and a founding source of the worldwide hospice movement.

Website: http://www.stchristophers.org.uk/

St Christopher’s has one of the largest and most comprehensive programmes of palliative care education for professionals and others: you can see the programme and book courses here.

St Christopher’s is also a partner with Help the Hospices in Hospice Information, one of the most comprehensive information services on palliative care in the world: http://www.hospiceinformation.info/