An interesting document from the Centre for Welfare Reform on the ‘architecture’ of personalisation. The first thing to know is that this organisation, although it has a classy name, seems mainly to be the present resting place of Simon Duffy who had a lot to do with the organisation ‘In control’, which in turn did a lot of the work for the Department of Health on developing its pilot schemes on personalisation. From the documents on its website, it gives the impression of being a one-man band, working in Yorkshire mainly doing management consultancies for public authorities in the area. There is a booklet about them, which gives no indication of any accountability or management structure for Duffy, so I presume it is a single-trader social enterprise. There is vague talk about a network of writers, innovators and citizens. Several of their projects have reports done in association with other consultancy organisations. This one is in association with Paradigm, which seems to be a larger collection of people in a similar field, with a strength in learning disabilities.

So first of all, we are dealing with enthusiasts with a shared agenda here; they have a view about how things should be. All of this stuff is done as, in effect, management consultancy through social enterprise – one wonders how they are going to fare in a Condem world that is against management consultancy, presumably alright because social enterprises are good, even if consultancy is not. Democratic accountability is presumably through the public organisations that hire them. The other thing to say is that they seem not to actually manage anything. Advice about their brave new world, yes, doing it – who knows?

And because all their stuff is published by themselves, you can ask: what is the editorial control over what they say and the quality control over what they do? Presumably it is that someone will pay them for it. None of this material is subjected to peer review, as far as you can see, they don’t seek publication in peer-reviewed  academic journals but in self-published and internet documents. No doubt they would reject the values of academic rigour, but of course what it does is attest the credibility of what work is done. There are results here without a methodology. Four local authorities are mentioned, and we are given some original data and averages but no indication of how these were arrived at. We are given lists of projects that people have tried but little data about them. How were they selected? What projects were not selected and why? Would they show that something different also works? Enthusiasm for an ideal is no substitute for good-quality research.

So boring to have to say how you got and processed the information you’re using, but without this, what value do the outcomes have? What they do is simply support the opinions of the people who did the work, who presumably designed it so that it would, unless they can show us how they did the work so that it is credibly arrived at. And presumably they’re employed because of their commitment to their belief, not because of their independent analysis.

With all that, this small-scale project has the germ of an idea that should be properly tested. They looked at the costs of care management in some local authorities; that is, the actual management as opposed to the budget. Each service user costs an average of about £665.00 (I presume per year – it doesn’t say) for their £10,000 care package (this is per year, it says so). The suggestion is, suppose you packaged this in a different way. Say you took all the low-level easy cases and gave them a standard package that didn’t require so much assessment, you’d have about a third of the care management time left over to spend on working out really complex packages and providing good support to implement them.

If you look at some of their other reports you will see that Duffy and his network are big on peer assessment and review and community involvement, on the grounds that these are the people who really know what’s going on. Maybe you don’t have to employ professionals to do reviews, for instance; well-organised groups of users could provide a peer review service. So a lot of the new architecture is about setting up community mechanisms that can lead creatively.

None of this is costed (unlike the care management), I would just caution that setting up a new service system with heavy participation is not a free good. Neither is the labour of the big society of present service users who would be forming review teams; they would have to be paid. But they would perhaps not be paid as much as professionals (or well-established lobbyists in their social enterprises?) so it might be cheaper. However, they would have to be recruited, trained, supported and organised. There are costs there and they need to be looked at just as realistically as the costs of the present system. They might provide a much higher quality and relevance of review for their costs, but we cannot know this.

We can all agree that the present system of care management has been degraded from its original intentions so that it no longer does a good job for many people that it should be able to serve much better. We cannot continue like this, but we do need to be realistic about the costs of ideals about participation and community engagement; even of social enterprise.

However, the authors are right to say that we should look at where the money is being spent in the old system and see how we could reconstruct it to spend that money in new and better ways. It has always been the case that you follow the money to understand the system and Duffy and Fulton are right to point this up in a practical way. And it is a good notion to reconstruct it by freeing resources to focus most planning time on the most complex cases. By identifying a series of standard packages that would suit many people with low-level needs, they could choose for themselves without masses of assessment time.

So, pointing up a need for a change in the architecture is a good theme.

Actually, it was the original idea in the care management handbooks published in the early 1990s by the Department of Health. You would do more or less assessment according to the complexity of the case: what Duffy and Fulton are proposing. But that didn’t happen. If you were to ask why, my answer would be that as soon as this got out of the experimental phase (which personalisation is still in at the moment) the local authority treasury departments got their sticky fingers on it. No way were they going to let people decide on what they got without being assessed and controlled by someone the treasury employed and whose role was screwed down tight to make sure they used the absolute minimum of resources. That’s what treasury types do, and I have no doubt they’ll do it again for personalisation when they get their hands on it.

Duffy, S. and Fulton, K. (2010) Architecture for personalisation: a report on care management and community-based support in Yorkshire and Humber. Sheffield: Centre for Welfare Reform.

See the website and download the reports to see what you think at: http://www.centreforwelfarereform.org/

The Paradigm website: http://www.paradigm-uk.org/content/Home.aspx

I’ve now returned from the tender and reasonably effective NHS care; so back to blogging. My local no-star NHS hospital seems to have done an ok job, were congenial to deal with and efficient.

There will be a break in the blog for now becasue I’m off to experience the tender care of the NHS – let you know how it was when I get back.

I suppose I’d better say, if I get back

And incidentally, a thought from the beeravement conference, you’d almost think that psychological and social workerish people really love people to have a bad time emotionally. Why do we so need to use deficit psychospeak about people who are going through a perfectly normal social process like bereavement? Our loved one dies, we re-organise our relationships and feelings and adapt to a new way of life. Why do we have to be looking for distress, or in a recent document, ‘overwhelmed’, ‘vulnerable’ or ‘controlled’ behaviour in their psychological reaction. Why can’t we measure something positive like their adaptation to a new life?

Get rid of the deficit psychospeak.

To Dundee for the National Conference on Bereavement in a Healthcare Setting, where I was taking part in a panel discussion on assessing people for their bereavement needs. Of course there are lots of proformas for doing this, and some people think my views are a bit controversial.

Historically, in hospices, some sort of assessment has been done, often based on Colin Murray Parkes’s bereavement risk index. I have an aversion to saying that someone is at risk of anything like bereavement that is a perfectly natural social process, so bereavement risk is not my idea of an appropriate way of looking at it.

Other people agree, so recently, people have been talking about bereavement need, which I think is just as bad. When my granddaughter says: ‘Grandpa, I need an ice cream’, I wonder in what sense of ‘need’ this is. It’s different a doctor or social workers using their experience and the evidence in comparing you with other people and saying you need some specified kind of help. But deciding to assess a whole category of people for their needs smacks of unnecessary labelling, when we know that most people don’t need or want bereavement help other than support from their family and friends.

Also, I know and understand that caring nurses and doctors see someone very distressed when their loved one is dying and want to make sure they’re all right, but they are seeing them at a very difficult time and how they are behaving is probably untypical of how they are reacting to their bereavement. They might be well controlled, so you wrongly think they’re OK, or all in pieces so you wrongly think they’re not OK. Looking at them at the time of death is a red herring, so getting nurses to assess them or provide information at the time of death is very likely to be misleading. It only makes the nurses and doctors feel better; it doesn’t help a bereavement service to decide whom to help, except in a very few cases, and you can ask for permission to refer them then.

Thinking about it, what right have we to intervene anyway? The patient is the one who died, so who gave informed consent for a psycho-social referral of a carer or family member to the bereavement service? And how can you be sure that you’ve picked up the distant members of the family who might be distressed but the hospital never met. And if we’re collecting up information about potentially in need carers from the patient’s case record, we’re processing information from this record to create a new record about someone else, without their permission, without them even being a patient, and, in most hospital situations, we’re also passing it on to an outside service like Cruse bereavement counselling or some other local organisation. This is processing personal data in a way that is probably contrary to the Data Protection Act.

So I say wait until someone comes forward to ask for help and assess them then, within a therapeutic relationship with the bereavement service worker. But what about potentially suicidal or very distressed people? If you really think they’re at risk, ask their permission to refer them.

And I think we should work on making a lot of people – the GP, the minister of religion, the lady in the post office, the milkman – bereavement-literate, so that they know what to say if someone is distressed by their bereavement, and can refer them to a trusted service  in their locality. And of course that means we have to make sure there is a universal provision of a trusted bereavement service: we’re a long way away from that too.