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 ) 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 ).

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 ) 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 ).

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 ) 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 before any word from NHS England) caused so much consternation. The plan is available here 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 ), 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 ) 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 ) 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.


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 ).
·         Bubb’s Blog: the original post was updated on 14th July and other relevant instalments were published on 22nd July ( )  and 31st July ( ).
·         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 )

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

Proposals for an Access to Living Scheme from the Independent Living Strategy Group: available here

Work on a change in the law with the working title of #LBBill

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…