Monday, 2 June 2014

Now is the Winter(bourne) of our discontent...

Now is the Winter(bourne) of our discontent

As has been universally acknowledged, the programme set up by the government in the wake of the Panorama undercover expose of horrendous abuse at Winterbourne View, a ‘specialist hospital’ for people with learning disabilities, has not to date been a success. From the description of the Care Minister, Norman Lamb, of the programme as an ‘abject failure’ ( http://www.hsj.co.uk/news/commissioning/winterbourne-view-scheme-an-abject-failure-minister-admits/5070443.article#.U4yKWPldWCk ) to the director of the programme, Bill Mumford, stating in a recent blog that “ A lot has been written by me and elsewhere which expresses a widespread and understandably deep frustration with the sector's response since” ( http://www.local.gov.uk/place-i-call-home/-/journal_content/56/10180/6211266 ), a winter of discontent has not been made glorious summer this June.



Three years on from the original Panorama expose and with only one year left of the official Winterbourne programme, the latest information from NHS England ( http://www.england.nhs.uk/ourwork/qual-clin-lead/wint-view-impr-prog/ ) is that the position is not only not improving as quickly as was planned (hoped for?), but that things are actually moving in the opposite direction to that mandated by the programme. @sarasiobhan has expressed far better than I can ( http://mydaftlife.wordpress.com/2014/06/02/a-place-i-call-home/ ) the sense of outrage that has met this continued evidence of the lack of impact of the Winterbourne programme. 

In this blogpost I just want to confine myself to a few observations and a proposal that is almost certainly completely unworkable but suggests a very different starting point to the current approach, which draws somewhat on the progress of the closure programme of large-scale institutions for people with learning disabilities in the UK.

Observations

1) There is a discrepancy in the numbers, between the 3,250 people in these services identified in the latest learning disability census (http://www.hscic.gov.uk/ldcensus ) and the 2,615 people in these services identified in the latest returns from commissioners. I think the reason for this discrepancy is quite straightforward – both numbers are correct, it’s just that there are around 500 people in these services who health commissioners don’t know about. If a person has been in one of these places for a long time (which we know isn’t unusual) how many reorganisations of commissioning have taken place (let alone all the internal reorganisations and relabellings) in that time. Are the cheques still being paid while the person has quite literally been forgotten about?

2) For the first two quarters that data have been available, the number of people being transferred into these services has been substantially bigger than the number of people being transferred out. I was shocked by this at the time, but on reflection I shouldn't have been as surprised as I was. The focus of the Winterbourne programme has largely been on those people who are already in these services – understandable, but unlikely to be enough to tackle the systemic combined behemoth of fragmented commissioner inattention and provider expansionism supporting these services ( http://chrishatton.blogspot.co.uk/2014/04/acts-of-commission-commissioners-and.html ).

3) I can understand the dilemma of whether to set up the Winterbourne programme as a time-limited endeavour versus something ongoing. However, given where we are now I think the time-limited nature of the programme with only 12 months left is a real problem. From what we’ve seen so far, I suspect that many commissioners and providers will be tempted to stick it out and hope that any pressure being exerted by the Winterbourne programme will soon go away (just see what happened after the disbandment of the Valuing People Support Team).

4) According to the latest NHS England figures, by far the most common reason given by providers (via commissioners) for people not having plans to transfer out is a ‘clinical decision’. Four thoughts on this for now, that for me raise questions about the appropriate status and role of psychiatry in these services:
·         Although these are designated ‘hospitals’, it’s useful to remember that institutions for people with learning disabilities were originally run by local authorities, and it was only the creation of the NHS in 1948 that magically turned these places overnight into health services (partly through their gradual colonisation by psychiatry throughout the 19th and early 20th centuries).
·         Reasons for transferring people into these services are frequently reported as ‘learning disability’, ‘challenging behaviour’ or ‘mental health problem’. The first two of these are not in themselves health issues, and effective support for the third can frequently come from non-medical approaches.
·         One would hope that ‘hospitals’ would at least provide effective physical health care for people with learning disabilities (especially as they can underpin many behaviours labelled as ‘challenging’ https://www.improvinghealthandlives.org.uk/securefiles/140602_1606//Factsheet-CBed.pdf ), but #justiceforLB and many other people’s experiences show that this simply cannot be guaranteed in these services.
·         There is precious little evidence that these services as a ‘model’ of care are routinely providing high quality therapeutic environments for people on the short-term basis they are apparently set up to provide. Over two-thirds of people getting anti-psychotic medication in the last month, over a third of people experiencing hands-on restraint in the last three months, 60% of people having lived in the service for a year or more (all from the learning disability census) – these services are not delivering on their own terms, let alone according to other ways of thinking about a person’s life.

A proposal

This proposal is not thought-out, economically tested, or in all probability practical. I simply offer it as a sketch of what could happen if we start from a different set of assumptions, and as the start of a conversation.

Most commissioners have demonstrated that they have not got anywhere near the target for transfers out by 1 June 2014, and I suspect may be too small, fragmented and focused elsewhere to pay proper attention. So:
·         Close all of these services to new admissions.
·         CQC to make a clear statement that they will not register new services of this type, and that they will have a process of deregistration of existing services.
·         For all commissioners still funding people in these services, take that funding off them to be administered by a national ninja closure taskforce. This would give the taskforce a starting budget of over half a billion pounds per year (could add in the Winterbourne View programme money too?).
·         Put people with learning disabilities and families really in charge of this ninja taskforce, making decisions about who is appointed to work on the taskforce in which capacities, what the taskforce does, and how it operates.
·         The ninja taskforce works to develop local, individual supports for people moving out of these services – with new people, agencies and supporters rather than with the usual provider suspects (unless the usual provider suspects can come up with something really good that the person and family members want). Obviously this would be person-centred, with the person and family in charge of circles of support.
·         Funding at its current ATU level moves with the person (howls of protest, two-tier Rolls Royce service, all true, but it would demonstrate what good looks like).
·         The ninja taskforce also helps to develop local, individual supports for other people with learning disabilities who might have been sent to these places by commissioners, including strong local structures for self advocacy and family advocacy.
·         The ninja taskforce to help to develop ways of supporting people with learning disabilities in acute distress/crisis for short periods of time.


I’m sure there are a million reasons why this is unworkable (sadly my reservations are mainly about how such a proposal could be sabotaged by various players). I’d be very interested to know what people think - it's time for more than Glycerine and Cucumber to protect us from this winter.

12 comments:

  1. Hi Chris, thanks for an excellent post. I've been thinking a lot about the failure of the Winterbourne JIP's 'abject failure' lately. I feel as if every week I come across another story of a family fighting (online, in the courts) to keep their relatives with learning disabiliteis in their home communities, and the system just ploughs straight on placing them in there. Not only are there a load of online campaigns, I'm often contacted by families in their desperate situation asking for advice, and in a legal sense it's just such an unholy mess that it's hard to find the brakes on this machine.

    Being a legal researcher, I do tend to think about these things in legal terms, and obviously it's about much more than law, but do bear with me... Let's start from first principles: are people actively choosing to live in these places? I strongly think not. Think about all the abuse scandals in services in recent history - what do they have in common? People were forced to live in places where they didnt' want to be and couldn't get out of them when abused. Deprivation of liberty clearly plays a critical role in facilitating these types of abuse, yet few strategies to address abuse have recognised this.

    Most people in the census were deprived of their liberty under the MHA. Before Winterbourne and the Cheshire case, there were probably more people who were unlawfully de facto detained (like Connor), possibly ostensibly using the Mental Capacity Act. Ok, so the first piece of law in this machine is the kind of legislation that allows you to confine somebody in a place when they - and their family - are objecting. Nobody was discharged from Winterbourne by a Tribunal, according to the SCR by Margaret Flynn, so that safeguard clearly ain't working. And now we're starting to see COP cases where the Court is finding that it is in a person's best interests to be moved into these units, apparently heavily swayed by expert evidence (e.g. Northamptonshire Healthcare NHS Foundation Trust & Anor v ML (Rev 1) [2014] EWCOP 2). So here's another cog in the machine: the credibility of professional claims that these units are doing something useful, despite a groundswell of opposition from families, people with disabilities, and charities. Psychiatric 'expertise' is clearly very persuasive within this particular legal machinery. I think disability organisations need, need, need to get on top of these cases and start intervening to put the case that nobody should be in units like this and public authorities should find another way to support them.

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  2. (continued!)

    Ok, but the picture is more complicated than that. Tribunals and the COP can't send people home unless there is adequate support in place. But that's a public law issue, and if the necessary support on offer is crap (or not on offer at all), those institutions which are supposed to safeguard rights to liberty can't do very much about it, as they can't force a public authority to provide the requisite services. You'd need a judicial review to do that. And judicial review is a) very hard to get funding for, and b) operates a very high threshold for showing a public authority has made an unreasonable decision. You might be able to swing it using a Human Rights Act claim, but again, we're talking quite tricky proceedings for people to get off the ground if they don't have funding to do so.

    Increasingly, I feel that what we need are enforceable legal rights to independent living. And I don't mean by independent living 'supported living', I mean the rights contained in Art 19 CRPD, to be able to live and be supported in a place of your choosing. And rights to personal assistance - (not personal budgets) - which mean that regardless of whether a person can manage a personal budget, they are able to influence who (at the level of the individual) supports them and how they are supported.

    I agree that there's also a need to close these places down, and I think that your plan for how this should work is brilliant. But my worry is that these types of institutions may pop up in another guise - perhaps as 'care homes', but still miles away from home and still just as restrictive (Steven Neary was, for example, detained in a care home, although it operated in many ways more like these units). The trouble is, 'total institutions' defy easy legal categorisation, so you can ban them in one form and then they crop up in another (we closed the old public asylums, and then Castlebeck & co created their replacement...). We need legislation that locks in, directly, to what people themselves want, not what others think should be done to them.

    Anyway, these are my fleeting thoughts... they're not terribly well developed which is why I'm inflicting them on you rather than blogging about them!

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  3. Sorry, just thought of a P.S. on the train home... does anybody know if the Winterbourne JIP has done any work training judges (in the Court of Protection and the Mental Health Tribunal) on these types of placements? There is, in any case, a legal obligation under Art 13 CRPD for judicial training on disability issues. Might be another strategy to try to get these institutions asking more probing questions when they consider placements...

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  4. Thank you very much for your extended comment Lucy. Sorry it's taken me a little time to respond - although you've escaped Twitter for the moment there have lots of positive comments and conversations arising from it.

    I think the legal aspects of this are really important and probably haven't been systematically targeted by organisations trying to support people with learning disabilities and their families - I think some charities and individuals do great work but as you say they're not networked to provide rapid, comprehensive support to anyone in this position and getting the right 'expert' support for the individual and their family hasn't routinely happened. It would be great for a coalition of disability organisations to get something like this up and running to get some convincing challenges into this system at an early stage. Also agree that it shouldn't be allowable to legally argue that a highly restrictive option is allowable in law because services/supports elsewhere would be terrible for the person - I don't know much about any of this but judicial reviews presumably happen too late or take too long (as well as issues of complexity and cost), so the issue often de facto becomes a reason for someone leaving a restrictive environment rather than going into one in the first place.

    I like the idea of enforceable legal rights to independent living (and the support that makes this possible) - would like to read a blog on what this might look like (not very subtle hint)?

    Also agree with your points about systems seeming to retain an institutional 'space' for people with learning disabilities whatever the name/stated purpose, and closure programmes are like games of Whack-A-Mole, where once you've knocked one on the head another one pops up. Jonathan Beebee in a recent blog and others have made a similar point, that institutionalisation is not confined to ATUs and focusing on these may not tackle some of the wider issues of institutions regarding people with learning disabilities. This is absolutely the case, but I would say two things I think:
    1) Focusing on an explicit closure programme for ATUs makes it very clear that this type of service (by itself and by the function it serves in existing service ecologies) is simply not acceptable - not matter how 'good' any individual ATU may be the service model as a whole is clearly not, and commissioners and those working to support people need to find other ways of supporting people properly (and there is plenty of evidence and examples of how this can be done).
    2) The #justiceforLB campaign is very upfront that ATUs and institutional services are only part of the picture, and that bigger changes to society and the status of people with learning disabilities and their families are fundamental to meaningful change, to stop Whack-A-Mole oppressive practices rearing their head (accepting that, as for anyone, there is no way of living a life that can 'guarantee' that nothing bad will ever happen to you).

    On your final point, I'll try asking!

    Thanks so much again for your comments.


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  7. تستطيع الاعتماد على صيانة يونيفرسال في اصلاح الأعطال الفنية المتكررة في أجهزة منزلك الكهربائية.

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