This is the promised comment on the social care framework for end-of-life care. And this is the disclaimer: I was a member of the Advisory Group that led to this document. I don’t blog about these things as they’re going on, because I think it’s only fair to wait until the whole thing’s been produced by the people who are responsible for it. But obviously I am committed to the thing having a life as part of end-of-life care debate, so I’m not an outsider on this one.
The whole thing is a bit confusing and a print designer has tried to put in lots of cheery and involving boxes with things service users and others have said (they haven’t asked any, these are garnered from various sources). Different boxes (also variously garnered) contain inspiring little case studies about what various organisations have done that might give you ideas for what to do. Some of these from the palliative care world frankly do not demonstrate a lot of gumption in thinking about social care and social work, although there’s no harm in what they’re saying. You have to extrapolate a lot.
You will gather then that the whole thing shows that nobody is doing very much about social care and social work in palliative care. Presumably that’s why we’ve got two social care leads – one of them an eminent social work academic on death (Margaret Holloway) and one of them an adult social care manager (Tes Smith), so they’ve got a good combo. But you can only think it’s nearly all to be done. Still, merely doing this is a big move on from the almost total absence of social care and social work in the end-of-life care strategy itself.
So what does it say? First, there’s a one page of 8 ‘key messages’. This basically says social work and social care ought to be an important aspect of end-of-life and palliative care, but we’re struggling to achieve that, so here’s a go at working out what to do.
Then there are a set of 10 objectives; what it’s telling us we should be aiming to do. These emerge from 7 sections; these are basically the areas we should be looking at. Most of these (not number 7, they ran out of ideas by then presumably) have recommended actions. There are many recommendations (I haven’t counted) and they’re the detail of what we might do: all the ideas someone on the working party had, presumably. Some of the objectives and recommendations are, how shall I put this, early in their journey from the jargon of best intentions to well-clothed overalls of practicality. How’s that for a mixed metaphor?
Reading through all of this, I’m struck by the number of agendas people have: I like to point out current obsessions, so I searched for agendas in the document. Here you go: transformation, personalisation, re-ablement, change, safeguarding, social support, human rights, Dignity Challenge (with capital letters – it must be important), social care, Extra Care housing (Extra Care capitalised but not housing), wider social care. I liked how one agenda had key thrusts; I always like a few key thrusts in my agendas.
The point of this is the main point of section 1: there’s lots going on in policy development in all sorts of areas relevant to end-of-life care and social care and although you can see connections, some group or other in the DH is ploughing on with all of these separately. You have to remember that it’s people we’re dealing with here and several of the agendas apply to each dying person’s life. Probably, they’re not coordinated in how they deal with individuals. When I’m dying, I’ll probably be lying in bed watching for each agenda to come up. ‘Now then, young man, you haven’t picked up on the transformation agenda yet I see.’ I plan to enjoy being a difficult client in my old age. ‘What’s the difference?’ my wife would say.
You almost feel sorry for the person who had to write section 2: it aims, no less, at a vision for integrated social and health care at the end-of-life; possibly a bit too ambitious, since it’s never been achieved anywhere else, but why not go fro broke? The agenda (yes!!!) was set by the Audit Commission, which pointed out that you need social care on board if you’re going to make much impact on making sure people die in their preferred place of care, that there were a lot of unnecessary and undesired changes in care arrangements for people, that people in social care had a poor training (when I first typed that it it said ‘poo training’ which accurately describes the availability of most social care training) and skills base for dealing with end-of-life care (and more generally). Finally, says the Audit Commission, there was poor coordination between health and social care. All the usual management things to deal with this are listed starting with ‘strategic commissioning’ bleep bleep (that’s the meaningless jargon alarm again). We’re going to have to stop talking about strategic commissioning, because under the new Condem government, GPs are going to decide where their patients go and hospital trusts are going to decide what they’re going to do and sod the rest. But no doubt there’ll be some new meaningless jargon to describe this; I’ll look forward to it.
The case study is about joint working in Essex. One outcome was that preferred place of care form completion by social care staff grew from 0 to 4% in one year. Well at that rate, only another quarter century to go then. But perhaps it doesn’t matter: is ppc form completion what it’s all about anyway? Is there any sign that ppc form completion actually leads to people getting to be cared for in their preferred place of care? They had a ‘groundbreaking’ conference though so that’s all right. (‘Groundbreaking’ is the new politically correct term for seminal in case you didn’t know; apparently seminal is too gender-specific since only men have it – unless they donate it.)
Most of the recommendations here are the national end-of-life care programme engaging with others. Hope they can make it groundbreaking enough.
Here we are in section three: this is telling us about strategic commissioning, although I’m no better informed about what it means. The objectives are person-centred integrated care, together with ‘embedding’ end-of-life care in commissioning and inspection frameworks and standards for practice. So we’ve all got to get in bed with some new documents. Finally, strengthen palliative care social work as potential advisors and consultants in incorporating social work into end-of-life care. Unfortunately, the new government plans to get rid of consultants who are making far too much money, second only to bankers, so obviously the palliative care social workers won’t be getting any pay for this. No change there then.
A lot of this is about creating more flexible budgets and better information; the example is an email communication service which isn’t working but is expected to do wonderful things when a lot of relevant organisations ‘gradually join’. The fact that they have to use an example like this shows only too clearly that there is virtually nothing out there to promote this kind of flexible working together. Another example tells us that when a medical assessment that death is predicted (presumably they mean soon, we can all predict we’re going to die) and care at home is requested, a single call will ‘activate’ immediate care. I do not believe with the present structure of continuing and community care funding and service commissioning that this is possible in most areas now, and I’d be interested to know how the government’s new commissioning arrangements will make it more possible.
Section four is about care and support planning and the main message is that you will have to involve social care in all of them if they are to work well, so assessments need to connect up with social care assessment and social care staff need training in end-of-life care to be able to participate in integrated working. Residents in care homes should have their end-of-life care needs reviewed regularly and have this included in their care plans. Discharge problems should be sorted out. This is the basic stuff that really needs to be worked on to make a difference to many people. If the ambitions here can be achieved, we can hope for slow and steady improvements on the ground.
Section five has a lot on education and supporting the social care workforce to see it as their business to be involved in end-of-life care, and to realise that they already have lots of relevant skills in doing this part of the job. This will be a big task in the face of other priorities, but they’re certainly right.
Section 6 wants to encourage better skills and capacity in the community to respond to end-of-life issues,
All of this is worthy, and it raises the flag for the importance of social care to end-of-life care and end-of-life care in social care; it needs to be said; loudly. I suspect that other agendas (yes!!!) will leach away the motivation and finance to do this stuff, but it’s a long-term programme so some steps along the way may lead to more than we can see so far. This is an ambitious expedition starting from a desert landscape. Let’s hope the welly (maintain the metaphor, Malcolm, desert boot) is there to move it on to the land of lactose and liquid sugar.
To see the document, here’s the link again: http://www.endoflifecareforadults.nhs.uk/assets/downloads/Social_care_framework_again.pdf
