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  

2013 Learning Disability Census: Health & Social Care Information Centre (2013/2014) http://www.hscic.gov.uk/catalogue/PUB13149/ld-census-initial-eng-sep13-rep.pdf http://www.hscic.gov.uk/catalogue/PUB14046/ld-census-further-sep13-rep.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

2013 Learning Disability Census: Health & Social Care Information Centre (2013/2014) http://www.hscic.gov.uk/catalogue/PUB13149/ld-census-initial-eng-sep13-rep.pdf http://www.hscic.gov.uk/catalogue/PUB14046/ld-census-further-sep13-rep.pdf

 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.

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)

W(h)ither Winterbourne?

W(h)ither Winterbourne?

I first heard the news of Bill Mumford’s resignation from the Winterbourne View Joint Improvement Programme (http://www.macintyrecharity.org/news/details/?/Personal%20statement%20from%20Bill%20Mumford/2403/ ) in Birmingham New Street station – with police called into a second MacIntyre residential school concerning a ‘safeguarding incident’ brought to light by a whistleblower. Sinking feeling replaced by numbness for a while, then the brain starting to drift into ‘What next?’ thoughts as I got nearer to home. Then I was brought up short by this tweet from @sarasiobhan.

I’m ashamed to say that this is exactly what I was doing, and I was quite rightly jolted into keeping my trap shut and letting a night’s sleep do its work. So why this blogpost, with this title? Well, I do have my views (as I’m sure everyone does) on what next, but I don’t want to talk about the tactics, the structure, the exact arrangement of the deckchairs – it’s not right, right now, to do that. Before the rush to ‘fix’ the Winterbourne View programme (‘fix’ being a deliberately ambiguous term) I want to make three, connected pleas.

First. Whatever happens next, the process of who decides what happens next needs to be radically different. People with learning disabilities need to be at the heart of decision-making power in whatever comes next, together with allies who those people trust. This will certainly include families and it is also likely to include others (as @GeorgeJulian has pointed out, the assumption that you can’t be a committed ally of people with learning disabilities unless you have a family connection is just another form of devaluation, a variant of the “He’s got a face only a mother could love” joke/slight). But the power rests here – not as a few faces round a table of 20 or more, but as the absolute centre of decision-making. All (most? some?) of the professional expertise and nous currently round the Winterbourne View table will still be needed, but their function will be to help people with learning disabilities implement what they want to happen.

Second. In my reaction both to the news of Bill Mumford’s resignation and in my reaction to Sara’s tweet, not for the first time I felt a sense of shame. And in conversations (both face-to-face and in twitterland) I get hints of that too. I find this difficult to talk and write about, the extent to which I am a complicit cog in a system that does what it does to people with learning disabilities and their families. And also seeing the @justiceforLB and now the @justiceforNico campaigns (and of course @MarkNeary’s #107days blog) uncover depths of what can only be described as institutional malice, wondering whether my naivety about this is somewhat self-serving or self-protective. And I’m guessing I’m not unusual – whether highly committed ‘good’ people or not, how many people working with people with learning disabilities have a nagging sense of shame about aspects of the work they do?

What can a person do with such a sense of shame about what they do with their working lives? I’m no psychoanalyst, but I guess you can reassure yourself that you’re doing the best job you can in the circumstances and things would be worse if you weren’t there, you can try and pretend you don’t feel any shame at all, or maybe you can turn that shame into anger at the people who you think are making you feel like that. Or maybe you can be upfront about it and start having honest conversations with people on the receiving end of what you’ve done (or not done) – engage with the disappointment, hurt and righteous rage of people with learning disabilities, families and allies. The last suggestion in @neilmcrowther ‘s excellent blogpost We will only close institutions by opening up the world ( http://www.ndti.org.uk/blog/guest-blog-by-neil-crowther-independent-consultant ) was for a Truth and Reconciliation Commission where historic, current and systematic abuses of power against people with learning disabilities can be openly recognised as a vital step for achieving lasting equality.

Third. Partly as a result of frustrations with the Winterbourne View programme a number of ideas/plans/visions for alternatives have been emerging. I don’t want to debate the merits or otherwise of these here, but I do want the make the observation that they are all focused on trying to ‘fix’ (that word again) various bits of the service systems already in place for people with learning disabilities. Linked to my first and second pleas, and to Neil’s blogpost, my third plea is that people with learning disabilities, their families and allies, are in charge of starting from a different premise. If you were starting with a blank sheet of paper, what would you really want your life to be like? What would you need to help you live the life you want? The financial and service systems within which people with learning disabilities and families are ‘supported’ (or are completely excluded from) are forbidding in their complexity, and changing bits of the system is like chucking a hippo on a bouncy castle (all the other bits fall over when you do this). This can be a recipe for a gallic shrug and shuffling off for a defeatist Gauloise, or for blinkered tinkering with a particular bit without reference of what effect it has elsewhere. But with clarity about what people with learning disabilities really want for themselves and those close to them, at least there will be a sense of what to aim for. What will that look like? It’s not for me to say…

And last, let's remember the young people in those MacIntyre residential schools and their family members who placed their trust in the schools. Please let's not say some variant of "Every crisis is an opportunity". For those people at the heart of this - it isn't.

Very Important People

Very Important People

I wasn’t going to write a blogpost today to mark Day 107 of #107days. I’m quite reserved and expressions of emotion from me are likely to come out as quite strangulated and clumsily expressed.

But I just wanted to quickly share something that happened this morning, quite coincidentally. It was my daughter’s VIP assembly morning. One of my favourite things about my kids’ primary school is their VIP system. Every week, one child in each class is drawn by lot to be the VIP for the week (so that every child is a VIP for one week in the school year). VIPs get a special red jumper and get to do exciting jobs like going to get the school register, but the lovely part is the VIP assembly. At some point in the week, without the VIP present, all the other children in their class discuss what is great about them. In the VIP assembly the VIPs get to hear (with family invited and usually dabbing away the occasional tear at the back of the hall) some of the things that the other children value about them. It can be (and is) absolutely anything: working hard in school, having a different hairstyle every day, being kind, having a fantastic smile, making people laugh, making up good games to play. The message is quite simple; every child in the school is special and unique, every child brings something to make the school what it is, and the school would be poorer for them not being there.

So as usual, I was sitting at the back, tears quietly welling up (and how often has #107days made me cry?), watching my daughter smile shyly under the attention (she’s not a great attention seeker, unlike my son, but she does love the VIP assembly), and I was thinking about LB and all the other dudes of all ages. If my kids’ primary school can find a way of recognising and celebrating everyone’s qualities and appreciate that society is richer for that diversity of qualities, why should the rest of society find it so difficult?