Friday, 15 August 2014

A gilded cage? Part 2





“A glided cage is still a cage” (Lady Hale, in the Cheshire West case)

Warning - this one's really long (there's a brief summary at the end though, so feel free to skip to that if you like).

This is Part 2 of a double-header focusing on documents made publicly available concerning the NHS England “Transforming Care and Commissioning Steering Group”. Part 1 (available here http://chrishatton.blogspot.co.uk/2014/08/a-gilded-cage-part-1.html ) focused on the terms of reference and minutes of the first meeting of the Steering Group. This post (imaginatively titled Part 2 will focus on the original ACEVO plan also made public on the same NHS England webpage as the ‘Scoping solution’ document (available here http://www.england.nhs.uk/2014/08/01/community-support/ ).

As Sir Stephen Bubb’s initial blog is remarkably faithful to the longer plan, many of my initial observations from reading his blog (available here http://chrishatton.blogspot.co.uk/2014/07/deja-vu-all-over-again.html ) still apply. This post will ask some additional questions arising from some of the details contained in the plan. 

I’m also aware that as I’m writing this a bunch of excellent folks on Twitter are digging out very similar questions to me, so apologies when I’m repeating what someone else has already expressed more pithily than me.

The sections of the four page document are as follows, providing a handy guide in themselves to the plan’s preoccupations:
·         Addressing the problem
·         Commissioning appropriate local placements
·         Capital Implications
·         Revenue Savings
·         Long term contracts
·         A National Framework locally delivered
·         Future Considerations for the NHS

Addressing the problem

To paraphrase, this states that:
·         The Winterbourne View programme has failed (“out of a total of 2,615 patients, only 256 have a transfer date”).
·         The voluntary sector are the people to sort it (with the “capability and aspiration”, “deep knowledge and experience of this client group”, and “extensive operational expertise and national reach”).

In terms of a plan, the final point is the crucial one, stating that:
“The numbers of clients (estimated at 1,702) are not impossibly high to deal with (between them, the charities represented at the ACEVO meeting alone support tens of thousands of people each year, including with supported housing) and the sector is in a position to directly develop local services that meet the needs of children and adults with a learning disability and behaviour that challenges.”

This final point makes me doubt where the group as convened does have the “deep knowledge and experience” required to make the task a success:

First, I’m not convinced they know their numbers. The 2,615 “patients” number they mention is from the latest commissioning returns, but this is likely to be an underestimate as some people in specialist inpatient services aren’t known to commissioners and the overall number of people in specialist inpatient services is going up, not down (see http://chrishatton.blogspot.co.uk/2014/06/now-is-winterbourne-of-our-discontent.html ).

Second and more worryingly, I don’t know where the suspiciously exact figure of 1,702 “clients” comes from. In a relatively recent post (see http://chrishatton.blogspot.co.uk/2014/07/how-low-can-you-go-how-many-people-with.html ) I tried to present what we know about the number of people with learning disabilities in various types of specialist inpatient services under the broad label used by NHS England. I also tried to tease out the implications in terms of how many people, with the right support available in the community, did not need to be in inpatient settings. Looking at these numbers again, I wonder if this plan is ignoring all those people with learning disabilities in various types of forensic inpatient settings (perhaps all those commissioned by NHS specialist commissioners rather than locality-based clinical commissioning groups?). To my mind (and others too) this group of people absolutely needs to be included rather than excluded from a national action plan.

Commissioning appropriate local placements

Again, to my mind this section also shows a misunderstanding of some fundamental issues. I know it makes for a long post, but most of this section is worth quoting directly:
·         Regardless of the reasons why patients have been classified as not appropriate for transfer to the community, it remains the case that people have ended up in long stay, large-scale hospital services because appropriate local services have not been effectively commissioned.
·         This has increased and perpetuated the use of long term hospital placements which are poor value for money and far removed from home. This is a key stumbling block for successful transfer.
·         It has therefore the view of the ACEVO group that the key to transferring current patients out of hospital placements is the development of cost effective and sustainable local housing and support solutions as soon as possible.
·         This will help to overcome other barriers to transfer that have been identified.
·         We understand that the numbers are debated and that they may be higher than the stated position, especially as patients in crisis continue to be admitted. This is largely the case because there is no other crisis support available
·         That is why we propose that as well as commissioning local placements for existing patients, there should be a two pronged approach to ensuring that there are no more inappropriate admissions. This will involve:
o   1. Strongly linking the national transfer programme to a national closure programme. This has the added advantage of reducing the risk of double-funding placements;
o   2. Creating a national crisis support service that local authorities can draw on instead of inappropriately sending patients into ATUs. The model that we are most interested in developing is small scale emergency support and care homes specifically for clients with a learning disability who are in crisis.

First, understanding the reasons why people have been judged to be not appropriate for moving out is, I believe, rather fundamental to achieving a successful closure. This is a particularly resistant part of the system that many Winterbourne View Joint Improvement Programme local initiatives have foundered on, and it needs to be understood and measures taken to do something about it.

Second, the inpatient services for people with learning disabilities being discussed here are absolutely not “long stay, large-scale hospital services”. This is a really worrying misunderstanding – we’re not talking about closing big, old institutions here that were designed to (ware)house people for life. These inpatient services are usually small, often quite new (indeed purpose built, which we’ll come to later), and have an ostensibly assessment and treatment rationale. Some ‘lessons’ (gah!) from other closure programmes are transferable but in many respects the terrain is quite different.

Third, I agree that the lack of provision of appropriate local services is a major reason for people ending up in inpatient services. I’m unconvinced that the magic bullet for overcoming all the ‘barriers to transfer’ (an aside: the dehumanising language of this document is quite astonishing) is only the “development of cost effective and sustainable local housing and support solutions as soon as possible”. It ignores completely the role of commissioners, the interests of inpatient service providers and the crisis of resources within public services and the devalued role of people with learning disabilities within our society, and it raises the very obvious question to me of if it’s so straightforward, why hasn’t it happened already? I also wonder how phrases like “cost effective and sustainable” will play out in terms of people’s actual lives?

The two prongs of the proposal mention firstly a ‘national closure programme’. No more attention is given to what this should be and how it could be made to happen. The Winterbourne View Joint Improvement Programme has been trying to do this for some time and not succeeded on its own terms, and the DH Minister Norman Lamb has stated he doesn’t have the levers of power to force it to happen. So this issue seems worth more attention than a throwaway line that suggests the closure programme is someone else’s job.

The second prong is to create a “national crisis support service that local authorities can draw on instead of inappropriately sending patients into ATUs. The model that we are most interested in developing is small scale emergency support and care homes specifically for clients with a learning disability who are in crisis.” Erm, I hate to break it to you at ACEVO, but word for word this is a description of what Assessment and Treatment Units would say they are currently doing.

Capital Implications

In my reading, this section is largely concerned with how to raise £10 million for voluntary sector service providers to build housing for people with learning disabilities moving out of inpatient services. The rationale for such a capital investment programme in purpose-built housing is that challenging behaviour is “strongly influenced by their environment and how it is managed”. My understanding of “environment” in this context is that it is much more about interpersonal environments than a built housing environment, and it is very individual. This plan also ignores the mental health issues and traumatic life histories that some people will be carrying with them.

Based on this understanding I am unclear why purpose built housing is necessary (will housing designs be individualised to each person? What happens if they move house?), rather than finding existing suitable housing in a place where the person wants to live and will afford active engagement with people’s worlds beyond their house. And how big will these purpose built houses be? Will people be “allowed” to move house? And if there’s then an empty “bed”, will someone else be slotted in, old-school? These sound like group homes to me, ignoring the hard-won insights from supported living, person-centred planning and personalisation (of which there is no mention in this plan).

I’m struggling a bit to understand the money/social investment bit, and I’m more than happy to be set straight on this. Even with my limited/absent understanding, I’m not completely convinced of the maths on this:
·         So – Mencap raised a £10 million bond (in my understanding, a fancy name for a loan?) which they used to provide housing services for ‘over’ 137 people with learning disabilities.
·         On this basis, the plan concludes that it costs £10 million to develop housing solutions for 150 people (not 137 people?), it will therefore cost £150 million for capital investment to house 2,000 people [er, wouldn’t this be 2,250 people?].

The plan is to raise 90% of the money, so £135 million, from ‘social investors’ (apparently the Treasury’s Libor Fund will stump up 10%). My knowledge of social investment is restricted to some googling today, and my simplistic view is that in this context social investors have funds (like venture capitalists) which they would lend to fund the capital programme at an undetermined rate of interest? (if these services are provided by big voluntary sector organisations I’m assuming they wouldn’t want an equity stake in them?). As with any loan/mortgage, this would mean no big public investment up front, but at the literal cost of interest paid to the investor (of which a little more in a bit).

Revenue Savings

There are a lot of figures here, but I think it comes down to the assumptions in the plan that existing inpatient services cost £3,500 per week per person, and that the voluntary sector could deliver community-based, purpose built services for the same group of people 40% cheaper (not a great deal of evidence is provided for the second part of this assumption).

So on their assumptions there are 1,702 people (or is it 2,000 people, or 2,250?) to whom this would apply. Currently, they are costing £309.8 million per year (or £364 million? Or £409.5 million? – think the differences in assumptions are starting to stack up).

The plan states that services could be provided for £185.9 million (saving £123.9 million) (or £218.4 million, saving £145.6 million? Or £245.7 million, saving £163.8 million?).

And over the 10-year cycle recommended in this plan as necessary for the contracts (never mind the assumptions made here about whether the people in these services will want to stay in the same house for 10 years, or whether they might want to stay in their house while changing how and who supports them?), even without inflation we’re talking about savings of £1.24 billion (or £1.46 billion? Or £1.64 billion?)

These savings are crucial for the social investment model mentioned earlier. Remember that this plan relies on social investors to invest £135 million at beginning for building the purpose built houses. My understanding is that the return for investors will come out of this notional ‘saving’. If this is right, then a major problem I have with this model is that a big slug of public money that could be reinvested into better community supports at a time when they’re really needed, ends up in the pockets of social investors. If social investors expect a return of only 2% over 10 years, then they make £29.5 million profit on their £135 million investment; 3% gets you £46.4 million profit; 5% gets you £84.9 million profit and 10% gets you £215.2 million profit.

Perhaps the most crucial line in this section is the final one: “This is a cashable saving that would be prioritised for repaying investors’ capital, but in theory a portion could be returned to the NHS.” [my italics]. So perhaps the model for the social investor is to take all the savings?

Long term contracts

This section has just four points, which are repeated in full below:
·         A key principle for the success of this project would be commissioning for long term contracts of around 10 years.
·         This supports the development of partnerships, reduces risk to providers and maximises efficiency and effectiveness for commissioners.
·         A short-term approach will limit the potential for social investment and therefore reduce the financial savings that can be achieved.
·         The other major consideration is the stability of clients. The consistency and continuity of their care is paramount and would be put at risk if providers changed regularly.

Essentially, this insists on 10-year contracts jointly cooked up with commissioners and providers, with no flexibility or autonomy for the people with learning disabilities living with them. People may want stability, they may not, and there is no Plan B for what happens if the service is failing (unless the plan assumes that such failures cannot happen in the voluntary sector).

A National Framework, locally delivered and Future Considerations for the NHS

On my reading, the final two sections of the plan essentially park all the difficult issues that the operational elements of the plan have resolutely ignored, including issues of accountability, what to do about commissioners, local authorities and social care generally, and supporting people with learning disabilities so they stop going into these services in the first place. To me, this reveals the essential nature of the plan. When looking at all sorts of plans and policies, I’m increasingly asking myself the “Cui bono?” question. To whose benefit? I’ll stop there.

A quick summary (if I put this at the beginning no-one would read it!)

·         It misunderstands the situation of people with learning disabilities in inpatient services
·         It ignores a large group of people with learning disabilities in inpatient services who really need to be included
·         It shoves the thorny issue of how to actually close existing inpatient services elsewhere
·         It aims to partly replace short term assessment and treatment units with, erm, short term assessment and treatment units
·         It misunderstands the nature of challenging behaviour and proposes expensive and unnecessary purpose built accommodation will is likely to replicate some of the shortcomings of group homes
·         The social investment model takes large amounts of scarce public money out of supporting people with learning disabilities, rather than investing that money into better support for people with learning disabilities
·         The plan ties commissioners and providers into collusive 10-year block contracts, recreating some of the worst aspects of the current system to the detriment of people with learning disabilities

·         The plan parks, hives off or ignores most of the thorny issues that prevented the Winterbourne View Joint Improvement Programme being successful, while extracting a significant amount of public money over a long period of time towards large voluntary sector providers and social investment

PS: The unconscious is a strange and wonderful thing. Exodus by Bob Marley and the Wailers has just come on my headphones...

A gilded cage? Part 1



I really don’t know how to start this post. To their credit, NHS England have published online what is presumably the original plan submitted to NHS England by Sir Stephen Bubb on “Bubb’s Challenge”, which as revealed in his blog (available here http://bloggerbubb.blogspot.co.uk/2014/07/the-winterbourne-view-concordat-and.html before any word from NHS England) caused so much consternation. The plan is available here http://www.england.nhs.uk/2014/08/01/community-support/ as the ‘Scoping solution’ document. Also available on the same page are the Terms of Reference for the “Transforming Care and Commissioning Steering Group” and the minutes of the first meeting of this group on 28th July. As an aside, it’s revealing that this page of the NHS England website is completely separate to the NHS England pages about the Winterbourne View Joint Improvement Programme (available here http://www.england.nhs.uk/ourwork/qual-clin-lead/wint-view-impr-prog/ ), with as far as I can tell no connections between them.

I’m very mindful of @neilmcrowther’s comments and Philipa Bragman’s excellent blogpost (available here http://changepeoplephilipa.wordpress.com/2014/08/05/bubbs-breakfast-why-all-the-fuss/ ) about people in glasshouses not throwing stones in terms of making sure that people with learning disabilities, family members and allies are at the heart of decision-making, so I’ll try and confine myself to some questions that occur to me reading across these three documents. Sir Stephen Bubb’s blog is also remarkably faithful to the longer plan, so many of my initial observations from reading his blog (available here http://chrishatton.blogspot.co.uk/2014/07/deja-vu-all-over-again.html ) still apply.

I’m also aware that as I’m writing this a bunch of excellent folks on Twitter are digging out very similar questions to me, so apologies when I’m repeating what someone else has already expressed more pithily than me.

This is also turning out to be quite a long post, so I’m going to post it in two parts. This bit focuses on some questions arising out of the minutes and the terms of reference. Part 2 will take a look at the plan itself.

Timing

The documents between them give us some more clues on the timing of the process.
·         At some point before 29th May, Sir Stephen Bubb had his meeting with Simon Stevens.
·         The breakfast meeting referred to in Bubb’s Blog occurred on 29th May.
·         The plan is reported as being written in June.
·         Bubb’s Blog announcing the plan was published on 14th July.
·         The NHS England news release on a “National group to drive improved healthcare support to people with learning disabilities” was published much later on 14th July (available here http://www.england.nhs.uk/2014/07/14/learning-disability-support/ ).
·         Bubb’s Blog: the original post was updated on 14th July and other relevant instalments were published on 22nd July (http://bloggerbubb.blogspot.co.uk/2014/07/winterbourne.html )  and 31st July (http://bloggerbubb.blogspot.co.uk/2014/07/roasting.html ).
·         The first meeting of the Steering Group was on 28th July, with further meetings scheduled for 18th August, 10th September, 7th October and 27th October.
·         The Steering Group has a commitment to deliver a delivering a National Framework by the end of October.

So, from this timeline it seems that the plan was written six weeks before any public mention of it (I wonder how widely circulated it was around NHS England?). I also wonder whether there were any internal decisions that prompted Sir Stephen Bubb to write in his 14th July blogpost that this was, in effect, a done deal? Without Sir Stephen Bubb’s post, when would the plan have been made public?

Who is the Steering Group?

There are some revealing differences between the membership according to the Terms of Reference and the actual attendance/apologies list from the first meeting of the Steering Group.

Names that appeared to have been ‘dropped’ from the Terms of Reference to the actual meeting include representatives from the CQC, The Local Government Association, a Clinical Commissioning Group,  the National Forum (i.e. a person with learning disabilities), ‘Families and carers’ (i.e. a family carer of a person with learning disabilities) and an additional family carer representing Mencap in addition to Mencap’s Chief Executive.

People attending the Steering Group who are not listed in the Terms of Reference include 5 people within NHS England and the Head of Health Commissioning for ACEVO.

So the people actually attending the first steering group meeting included two people from ACEVO, nine people from NHS England, three people from voluntary sector providers, one person from the NHS Confederation, one person from the Challenging Behaviour Foundation, one person with learning disabilities and an ‘independent psychiatrist’.

The meeting summary just below this list states “A new steering group combining expertise from the public, voluntary and community sectors will develop a national framework for improved services for people with learning disabilities or autism. Local authority and provider representatives will be invited on to the group”. The minutes also note some “confusion and upset about the steering group because stakeholders have not been clear about what the group is doing.” Various solutions are discussed in the minutes but actions from these discussions (beyond “arrange meetings with Winterbourne View families” and “NHS England will provide the map of learning disability groups”) are unclear.

I don’t want to labour the point, but it’s clear that the membership of the Steering Group isn’t fit for purpose. Two quotes from the minutes: “GH [the only person with learning disabilities on the Steering Group] emphasised the important [sic – I assume importance?] of talking to people with learning disabilities as they know best what services they need”; “DS…time may limit the amount of engagement we can carry out”. Finally, it would be good if the reasons for the ‘disappearances’ between the Terms of Reference membership and the actual membership were made clear – for example were organisations such as the National Forum and the National Valuing Families Forum not invited, or were they invited and refused to take part?

Update: Vicki Raphael of the National Valuing Families Forum (amongst many other things) has tweeted "...In interests of record straightening...not invited originally or aware of steering group place".

What is the Steering Group going to do?

And, most importantly perhaps, what is the status of the plan in relation to the work of the Steering Group? The terms of reference aren’t completely clear to me on this issue. Is the Steering Group there to work out how to put the plan into action, and/or using the plan as a starting point for the “delivery of a National Framework for commissioning that can be locally delivered in partnership…and create new pathways of care in the community to support PWLD/autism to live at or near home and not in hospital” (Terms of Reference, page 3).

From the evidence available in Bubb’s Blog and other publicly available descriptions of it up until now, many people have pointed out its limitations and its disconnection from other useful initiatives and sets of ideas, and indeed, all the available voluminous evidence built up over many years. These include (but are certainly not confined to, so many apologies to those who I haven’t mentioned here):

The four key proposals developed by people with learning disabilities with CHANGEpeople and Lumos, to be discussed at a summit on 3rd September (available here http://changepeoplephilipa.files.wordpress.com/2014/08/summit-meeting-3rd-sept-2014.pdf )

The Winterbourne View Joint Improvement Programme, which has been meeting with commissioners all over England and will have learned a lot about how and why things are working or not in various places.


Proposals from the Housing & Support Alliance: available here https://www.housingandsupport.org.uk/site/hasa/templates/general.aspx?pageid=397&cc=gb

Proposals for an Access to Living Scheme from the Independent Living Strategy Group: available here   http://theindependentlivingdebate.wordpress.com/2014/07/09/making-the-right-to-live-independently-in-the-community-a-reality-a-new-way-forward/

Work on a change in the law with the working title of #LBBill http://rightsinreality.wordpress.com/2014/08/10/easier-read-what-lbbill-could-say-and-do/

I understand the pressure to do something quickly, given the history of the Winterbourne View programme. I do worry very much that the timescale of this Steering Group guarantees that it will have to be focused on working out the details of the Bubb plan (and what about that initial wasted six weeks, if there was such urgency?). This will not be based on what in my view is needed, which would include:
·         Putting people with learning disabilities at the heart of decision making, with family members and allies that people with learning disabilities choose.
·         Starting from what people with learning disabilities want to do with their lives and what people need to be supported in this, rather than tinkering with bits of service systems that are clearly not fit for purpose.
·         Understanding what hasn’t worked in the Winterbourne View Joint Improvement Programme (and places where good things have happened).
·         Understanding what the evidence tells us about what and is not likely to work.
·         Connecting and putting together funding streams across different bits of the system, and designing ways of funding people’s support that maximises people’s self-determination and minimises perverse incentives for services to simultaneously constrain and neglect people.

I also find it really saddening (which is I think one reason why I’m finding it hard to write this post) that so much positive energy being generated by people with learning disabilities, family members, allies and (dare I say it?) ‘professionals’ (including many good people in organisations such as NHS England) is being squandered by this plan and how the process has been conducted. Wouldn't it be great (for us all!) if I was writing positive posts about exciting new ideas rather than constant moaning...


In Part 2 I’ll have a look at the plan itself…

Tuesday, 29 July 2014

How low can you go? How many people with learning disabilities 'should' be in specialist inpatient services?

How low can you go?




In response to the continuing, and continuing, and continuing, and continuing call for the closure of assessment and treatment units, many voices have quite reasonably pointed to the diversity and complexity of inpatient services that have been lumped under the label of ‘Assessment and Treatment Unit’, and have also suggested that some of the services under this label might actually be necessary for the health and safety of some people with learning disabilities (and the health of safety of their communities).

This post tries to set out some of this diversity in inpatient services for people with learning disabilities (the complexity is added by the sources of information!), and to ask the question “How many people with learning disabilities ‘should’ be in specialist inpatient services”?

What do we know about the number of people with learning disabilities in England in different types of specialist inpatient service?

Although the information is typically confusing and inconsistent, there are a few sources of information that look at the number of people in inpatient services by the type of service and by the level of security of the service.

There are several different labels for the variety of specialist inpatient services for people with learning disabilities in England, and the information we have on them does not use a consistent set of these labels.

So, a detailed analysis of the 2010 Count Me In Census of specialist inpatient services for people with learning disabilities in England (Glover & Olson, 2012 http://www.improvinghealthandlives.org.uk/projects/ipbch) reported that there were 3,642 people with learning disabilities in these services, broken down into service type using the following labels:
·         1,344 (36.9%) people in assessment and treatment units
·         1,061 (29.1%) people in long-stay inpatient services
·         466 (12.8%) people in NHS campus services
·         362 (9.9%) people in rehabilitation services
·         85 (2.3%) people in short-stay services (less than a year)
·         132 (3.6%) people in respite services
·         192 (5.3%) in ‘other’ types of inpatient service

These numbers say that in 2010 there were still almost 500 people in NHS campus services, which by 2013 are all supposed to have closed – does this account for the drop in numbers of people with learning disabilities in inpatient units from 2010 to 2013?

Anyway, a survey by the Royal College of Psychiatrists (2013) and the 2013 Learning Disability Census have used similar labels to categorise inpatient services for people with learning disabilities in England, as shown in the table below.

Although there are some worrying differences between these two sources of information, a big proportion of inpatient services are forensic services of high, medium or low security, and of course other types of inpatient service can also operate according different levels of security.


Royal College of Psychiatrists 2013 survey (at 80% ‘bed’ occupancy)
2013 Learning Disability Census
Category 1: high, medium and low secure forensic beds
1,914 (60.5%)
1,361 (41.9%)
Category 2: acute admission beds within specialised learning disability units
651 (20.6%)
466 (14.3%)
Category 3: acute admission beds within generic mental health settings
Unknown
143 (4.4%)
Category 4: forensic rehabilitation beds
498 (categories 4 & 5 combined) (15.7%)
262 (8.1%)
Category 5: complex continuing care and rehabilitation beds
530 (16.3%)
Category 6: other beds including those for specialist neuropsychiatric conditions
10 (0.3%)
97 (3.0%)
Total number of people
3,163
3,250
Royal College of Psychiatrists (2013) http://www.rcpsych.ac.uk/pdf/FR%20ID%2003%20for%20website.pdf  

The table below shows information from the 2010 and 2013 census on the number of people with learning disabilities subjected to different levels of security in inpatient services in England.
Across all inpatient services for people with learning disabilities, around half of people with learning disabilities are in ‘general’ (no secure) services, with over a third in low secure services, so less than a fifth of people are in medium or high secure services.

Although the Royal College did not provide this information in their report, they did note that around 70% of the people in their Category 1 (forensic beds) were in low secure forensic services (around 1,340 people, vs 574 people in medium or high secure forensic services, consistent with the 2013 figure below).


2010 Count Me In Census
2013 Learning Disability Census
High secure
47 (1.3%)
73 (2.2%)
Medium secure
399 (11.0%)
512 (15.8%)
Low secure
1,247 (34.2%)
1,195 (36.8%)
General ‘no secure’
1,949 (53.5%)
1,470 (45.2%)
Total number of people
3,642
3,250
2010 Count Me In Census: Glover & Olson (2012) http://www.improvinghealthandlives.org.uk/projects/ipbch


 How many people need to be living in inpatient settings?

As far as I know, only one organisation has tried to directly answer this question.

The Royal College of Psychiatrists (2013) Faculty of Intellectual Disability Psychiatry report on People with learning disabilities and mental health, behavioural or forensic problems: the role of in-patient services http://www.rcpsych.ac.uk/pdf/FR%20ID%2003%20for%20website.pdf  recommends that there should be specialist inpatient services for 6-7 people with learning disabilities per 100,000 total population. Coincidentally, this works out at just over 3,000 people – the number of inpatient beds there already are!

There are a number of reasons (some of which are contained in the report itself) to think that this number is much too high:
·         First, the report points out that this is a substantial reduction from the figure of inpatient services for 14-29 people with learning disabilities per 100,000 total population recommended in Bailey & Cooper (1997). If such a reduction is possible over the last 20 years, why assume that further reductions will not be possible in the future?
·         Second, the report also states “If, in the absence of significantly improved community services, the less restrictive in-patient facilities (categories 2–5) are further reduced because they are all uniformly described as assessment and treatment beds, then many more people will have unmet needs that compromise their mental health and safety. The result of this could be even more people ending up in far more restrictive forensic beds (category 1).” So, if there are significantly improved community services (and I think there is agreement that better community services are urgently needed) does this mean that fewer inpatient services will be needed?
·         Third, the report also points out that people in forensic inpatient services are paid for by specialist commissioners, so the (to my mind perfectly feasible) option of moving people from ‘low secure’ inpatient services to community-based settings is largely blocked by a money transfer issue rather than anything about how people in low secure settings could be best supported in the community.
·         Fourth, information from the 2013 Learning Disability Census shows massive regional variation in how many ‘home’ people with learning disabilities are currently living in inpatient settings around the country. So the average across England is the Royal College recommended 6.0 people per 100,000 total population in inpatient units. However, one region (the South West) only sends 2.8 people with learning disabilities per 100,000 to inpatient units – less than half the Royal College recommended level – showing that it is possible.

It’s also worth noting that providers in the 2013 Learning Disability Census reported that only 141 people ‘required indefinite inpatient care’ because of physical or behavioural needs, with a further 496 people ‘currently not dischargeable because of mental illness’. Compare and contrast with the 1,702 people where the ‘reason’ for the lack of a transfer plan was a ‘clinical decision’ (NHS England, 2014 http://www.england.nhs.uk/ourwork/qual-clin-lead/wint-view-impr-prog/ ).

Using this logic probably gets you to the point of assuming that inpatient services are only really necessary for offenders with learning disabilities in medium or high secure settings, which is currently around 600 people, if high quality community services were in place. Furthermore, depending on the nature of the offence, the risks to self and others, and the success of interventions in these settings, it is possible that some of the 500 people currently in medium secure settings could move into community-based settings over time. Decent community services might also help people with learning disabilities not to become engaged in serious criminal activity in the first place, further reducing the need for these services.

The Mansell swerve

One notable omission from this  post so far has been the revised Mansell report (2007) http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_080128.pdf . This is because this report does not provide any specific recommendations on the number or rate of people with learning disabilities and challenging behaviour likely to need specialist inpatient services.

My reading of this is that these inpatient services are so much of a dispreferred last resort that to suggest an ‘ideal’ number of places in them in effect only encourages them (“if you build it, they will come”), when the aim is to see how near to zero you can get.

The extended quote from the Mansell report below shows quite clearly the weight that should be placed on assessment and treatment units in the overall scheme of things.

“The difficulty of bringing people back home once they have been placed a long way away is so great that every effort should be made to avoid such placement. What is needed is a much wider range of options locally so that the individual needs of the person in crisis can be better met. For example, options for respite can be expanded by:
·         funding a short hotel break for the individual or those they live with
·         providing more help at home
·         staying with staff identified as having a particularly good relationship and skills with the individual
·         spending less time in the house during the day
·         using a local house or flat before it is permanently occupied
·         staying in a designated short break care service

Options for intervention can be expanded by:
·         Extra skilled leadership/support for staff (‘getting back on track’)
·         Extra skilled staff (‘extra pairs of hands’ or ‘new pairs of eyes’)
·         Telesupport; phone or visiting checks
·         Extra help to enable access to ordinary settings
·         Stay in a designated assessment and treatment unit

Options for a breathing space can include:
·         Having services available for the individual when needed through proper person-centred planning
·         Staying with staff identified as having a particularly good relationship and skills with the individual while a new property is found
·         Turning property designated to provide individualised short break care into someone’s home (and developing new short break places)
·         Having spare capacity in anticipation of growth”

So, maybe the question is not “How many inpatient places do we need?” but “How low can you go?”

Reference


Bailey NM, Cooper SA (1997) The current provision of specialist health services to people with learning disabilities in England and Wales. Journal of Intellectual Disability Research, 41, 52–9.

Tuesday, 15 July 2014

Deja vu all over again

Deja vu all over again



Words fail me (short blogpost, huh?). Just a week after Bill Mumford resigned as lead for the Winterbourne View Joint Improvement Programme, the following blogpost began circulating (http://bloggerbubb.blogspot.co.at/2014/07/the-winterbourne-view-concordat-and.html ). It’s by Sir Stephen Bubb, Chief Executive of ACEVO (the Association of Chief Executives of Voluntary Organisations). It’s worth reading in full, but my take on a summary of the main points within it are as follows:

1) Simon Stevens, CEO of NHS England, asked Sir Bubb to come up with a plan to sort out the Winterbourne View debacle.

2) Sir Bubb invited an unknown number of voluntary sector organisations providing residential services to people with learning disabilities to breakfast.

3) On the basis of this breakfast, Mark Winter, Sir Bubb’s ‘multi-talented’ Head of Health Commissioning, wrote a Plan (as yet unseen by the wider world), which Simon Stevens has accepted.

4) Sir Bubb has been asked to Chair the Steering Group to guide the development of the plan, sorry, Plan.

5) The essential features of the Plan as described in the blogpost are as follows:


which we characterised as a "national framework, locally delivered".

In essence this envisages the closure of most or all of the current inpatient facilities and the transfer of clients to appropriate community placements near their families . This will require investment in buildings,  converting houses or building new. However social finance can cover this on the back of sensible commissioning i.e. 10 year contracts.  With will,  it is entirely  doable. And if we all share the interests of the 3,250 clients we need to move into better community settings we will do it. Of course with any such task there will be a multitude of views and interests but I've been pleased so far that we all seem to be on the side of sorting it out : and that means being client focused.

Apparently some time after the blogpost was published, NHS England produced a press release about the plan, which you can find here, and again it’s worth reading in full http://www.england.nhs.uk/2014/07/14/learning-disability-support/

This press release states:

NHS England has asked Sir Stephen Bubb, the Chief Executive of charity leaders network ACEVO, to head a new group of experts and advisors to develop a national guide for how we provide health and care for those with learning disabilities.  The group will also include healthcare, charity and voluntary sectors, as well as with people with learning disabilities and their families. It aims to design more innovative and integrated local commissioning of healthcare and housing to best support people with learning disabilities at home and in their communities, reducing reliance on hospital care.

The key objectives of the group are to:
·         develop models for local implementation that meet the needs of people with learning disabilities and autism
·         develop funding models for new services
·         identify potential sources of social investment
·         identify the best way for funding to meet individual needs
·         seek input and guidance from partners working in this field.

The group will provide a final report by the end of October 2014 to inform commissioning.

And Sir Bubb is quoted in the press release as saying:

While I am delighted that Simon Stevens has asked me to help create a plan to support the Government meet that pledge, I am also determined to bring the experience and strength of the third sector to help transform care for people with learning disabilities

I have some questions…

Is there a plan that has already been accepted or not? If so, can be it made publically available, and if there is a draft plan can this be published now so the public can see what changes are made as a result of the group’s work?

Where are people with learning disabilities, families and allies, in any of this process? Certainly not at the heart of decision-making and power here, which is absolutely essential if we’re not all going to take another ride on the Waltzer of Crapitude. A cursory look at the #justiceforLB #107days campaign, or conversations with any number of superb self-advocacy and human rights organisations led by people with learning disabilities, makes the centrality of this so clear. While people with learning disabilities and family members are glancingly mentioned in the NHS England press release, the nearest we get in Sir Bubb’s blogpost is a nod to “being client focused” – the fact that I have to write that this isn’t the same as “Nothing About Us Without Us” shows the total inadequacy of the starting point.

What on earth is the relationship to the current work of the (currently leaderless) Winterbourne View programme and the good work that is already being done to help individuals get out of ATUs? Is this supposed to stop while the Group deliberates? Even if not, it’s clear that existing commissioners, local authorities and service providers aren’t going to take this work seriously, while they wait for “Bubb’s Challenge” (not my words) to complete its work.

Why the focus on providers, and voluntary sector providers at that?
  •  First, do voluntary sector providers (and large residential ones at that) have a monopoly on good practice in this area? If voluntary sector providers were so transformative, why haven’t services for people with learning disabilities been transformed already? What if the people round the breakfast table were CEOs of similarly sized private care organisations, for example?
  • Second, surely one glaringly obvious lesson from the iterations of the Winterbourne View programme so far is that focusing on providers doesn’t work. Commissioning is weak and providers run rings round them already, and many commissioners and current providers have been resistant to the radical changes needed. Where’s the national strategy for closure, and the national strategy for ensuring that such places will never be thought to be needed?
  • Third, another glaringly obvious lesson is that without a strategy for addressing why people go into ATUs in the first place (as the ‘need’ is often purely a function of the failure of local community supports) and stopping this happening, they will stay open for business.

Why the focus on buildings and long-term contracts? To my mind, this is exactly the wrong direction to be going in on all counts:

  •  As we have seen so many times, institutional spaces are not a function of the type of building. Certain characteristics of buildings and their locations can make abuse and neglect more likely, and helping people live a fulfilling, meaningful, healthy and connected life much harder, but institutions are a set of practices, not an arrangement of bricks.
  • This Plan strikes me as building yet another set of proto institutions – where people are encased in an all-encompassing service with precious little by way of rights and self-determination. The central insight of supported living is the separation of housing and support – people should be able to live where they choose, with legal rights as tenants or owners, and have the power to sack their support if its rubbish without having to move home.
  • Absolutely the last thing we need are more, in essence, block contracts that lock people into a service for 10 years. Commissioners need to be disentangling themselves from these types of contract to allow for the nimble commissioning of support that people actually want and need from a much wider range of organisations (the voluntary sector is vital here, but the interests of the voluntary sector as a whole are not necessarily the interests of the CEOs of the big organisations round the breakfast table).
  • And surely this flies in the face of NHS England’s commitment to large-scale implementation of personal health budgets?

Why do we need a Group to answer the questions outlined? Many excellent ideas for fundamental changes to the system, including a new settlement with people with learning disabilities, family members and allies, are out there (I won’t list all the ones I know of as this post is long enough). There is good evidence on how all people with learning disabilities can be supported in their own homes to live meaningful, fulfilling and self-determined lives. We have the examples of successive waves of institutional closure programmes for people with learning disabilities in the UK and internationally to draw on (surely more relevant than the mental health institutional closure programme mentioned by Sir Bubb). Why not apply these?

Finally for now (this blogpost is long enough), why is this only about health services? Are these Bubbplexes going to run in splendid isolation from their local communities? Where does education fit in, or local authorities? Locking people into 10-year stretches as ‘health’ clients patients residents (err, can I just say people?) is a recipe for institutional recreation all over again.

No big conclusions, just two quotes:

It’s like déjà vu all over again” (attributed to the baseball player Yogi Berra)


If you build it, they will come” ((almost) Kevin Costner, Fields of Dreams)