The complexity complex

To accompany the #7daysofaction campaign to help spring people with learning disabilities from specialist inpatient services, I was thinking of doing some short blogposts looking at some of the official statistics around inpatient services for people with learning disabilities.

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However, I ended up writing this instead - prompted by Eden’s story (see here https://theatuscandal.wordpress.com/2016/04/18/mum-i-cant-get-the-words-out/ ) and some of the media coverage around #7daysofaction. This is the narrative coming from a range of professional groups that: 1) People with learning disabilities are in inpatient services because they are ‘complex’ (often a code word for ‘dangerous’); 2) For many/most people with learning disabilities in inpatient services, an inpatient service is the only rational response (even if people end up in them for too long); 3) Only professionals (principally psychiatry but also clinical psychology and others) have the ‘scientific’ expertise required, and other forms of knowledge and understanding (for example, those brought by the person with learning disabilities and family members) are at best irrelevant and at worst actively unhelpful. I want to take these points in turn.

Complex?

A frequent justification for putting people into inpatient units is their ‘complexity’. What does ‘complexity’ mean in this context, and why is it a justification for putting people in inpatient units? Even in terms of the official information provided by the Health and Social Information Centre, these claims to complexity are somewhat wobbly. For example, the Learning Disability Census 2015 (see http://www.hscic.gov.uk/searchcatalogue?productid=19718&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top and http://www.hscic.gov.uk/searchcatalogue?productid=20487&q=learning+disability+census+2013&sort=Most+recent&size=100&page=1#top ) reports that, of the 3,000 people with learning disabilities in inpatient services on 30 September 2015, 85% of people did not have a mental health diagnosis ‘severe enough to require treatment’, and 73% of people did not have a behavioural risk ‘severe enough to require treatment’.

While ‘complexity’ seems to be a term to ward off questioning (it’s too complicated for the likes of you to understand), it seems to me more like an admission from professionals that they don’t really understand what’s happening in terms of professionally-derived frameworks for understanding ‘behaviour’ – these frameworks alone are clearly inadequate for helping people. And for all the complexities that may be on show (I think it’s a fair bet that putting anyone, me included, into an inpatient unit would result in some complexity of behaviour), people in inpatient units and families seem to talk about what people want out of life in ways that don’t seem terribly complicated to me - a nice place to live, being with people you love and who love you, having a meaning to your life, and so on.

What is undoubtedly complex, and a serious obstacle to people not ending up in inpatient services, is the financial and service ‘systems’ (a loose term which seriously underestimates the shambles we have now) both constraining and ignoring people with learning disabilities (see here https://lastquangoinhalifax.wordpress.com/2016/04/16/its-more-complicated-than-that/ ). If a service system results in inpatient services being ‘necessary’, then we need a different system.

The only way is locked?

While people with learning disabilities (as with anyone) may need a place of refuge at points of crisis in their lives, does this need to be a specialist inpatient unit? The number of people in different ‘tiers’ of inpatient service is itself used as a rationale for these services existing, particularly when splitting ‘ATU’ places (‘maybe we can reduce these numbers’) from places with varying levels of forensicness (‘these people are dangerous and need to stay banged up’). Yet from Eden’s story and those of others, we know that people can end up in forensic or secure services for little apparent reason except there was a space available at the time. There is also huge variation around the country in how many people with learning disabilities end up in units with different levels of security, in ways that do not seem to make any sense in terms of local needs.

Eden’s story and those of many others also show in horrendous detail that what inpatient services do to people is not rigorously evidence-based ‘treatment’ or ‘therapy’, and can be actively harmful (to understate the case wildly). Where is the randomised controlled trial demonstrating that feeding a person through a hatch is clinically effective? What kind of health service think it’s OK that someone in an environment completely controlled by the service gains 16 stone in weight? What kind of therapeutic environments prescribe antipsychotics to 72% of people in them, when 6% of people have a psychotic disorder severe enough to require treatment? Or have administered rapid tranquilising medication to 11% of people in the last 28 days, used seclusion on 13% of people in the last 3 months, or used hands-on restraint with 34% of people in the last 3 months?

For all the apparent scientific expertise of professional groups, the professional logic for inpatient services is sealed and impervious to argument (or falsification, if you want to get all Karl Popper about it). People in inpatient services are complex and dangerous, therefore antipsychotics, seclusion and restraint are required. If people show signs of being intensely distressed in the unit, this isn’t a sign that the unit is failing or actively making things worse, but a sign that they need to stay in the unit and get more antipsychotics, seclusion and restraint, or to be transferred somewhere further up the ‘security’ hierarchy. The notion that an inpatient service is making people distressed, and the alternative is freedom rather than more restraint, doesn’t seem to occur.

Experts by…?

Various professional groups lay claim to arenas of exclusive expertise concerning how to ‘understand’ people with learning disabilities going through a rough time. For learning disability inpatient services, psychiatry (and to a lesser extent clinical psychology) loom large, partly for historical reasons (the psychiatric colonisation of institutional leadership throughout the 19^th and 20^th centuries) and partly to fill a vacuum left by the disdain of general medicine/education etc for people with learning disabilities.

What is the nature of these claims to exclusive expertise, and what consequences do they have? For me, while these claims are about having access to medical ‘knowledge’ and the approach of a ‘scientist’, when it comes to professionals justifying inpatient settings both these claims are on shaky ground. First, it is unclear how much the issues that get people with learning disabilities into inpatient units are medical or even psychiatric, and the general medical/health care that people experience in these units is less than ideal (as you can see, I’m working on understatement today).

Second, there are several problems with (and consequences of) professional claims to be taking a ‘scientific’ approach. The most obvious is that scientific research evidence demonstrating the superiority of inpatient units over alternatives (and demonstrating the effectiveness of what inpatient units do) is pretty much absent. Another obvious point is that, at the same time as appealing to being scientists, professionals also make a claim to their expertise being a craft built up through years of training and experience – which makes that expertise not transparent to anyone else and is passed on with little critical examination.

For me, a big consequence of this is that professionals take an approach with some of the cultural traces of experimental science. The person’s behaviour is a ‘problem’ to be studied, which involves removing the person to an inpatient unit where extraneous ‘variables’ (like home, family, identity) can be eliminated and they can be observed in a controlled environment (this is a persistent theme identified in Neurotribes by Steve Silberman, along with the less than subtle parent/mother blaming that is also likely to be relevant here). I can’t remember where I first heard/read it, but it reminds me of the tale of aliens coming to Earth to understand human behaviour. Aliens could observe at a safe distance what people were doing outside, but they really wanted to understand what people did within their homes. So they hovered over a house in their flying saucer, disintegrated the roof by alien ray, and observed…people running around screaming.

The final consequence I want to talk about is that these professional claims to expertise (perhaps partly because they are on such shaky ground) view non-professional expertise as at best irrelevant and at worst a threat to be crushed. When Steven Neary started every morning in the inpatient unit singing ‘I Want To Break Free’ (see this instalment of the weekly wonder that is Steven Neary’s Good Massive Songs Radio Station https://stevennearysgoodmusicstation.wordpress.com/ ), why was this not treated as admissible expertise? When Mark Neary and other families talk about their children possibly going through some sort of existential crisis in their late teenage years, why isn’t this seen as something seriously worth investigating? Why are parents seen as ‘toxic’ when they are bringing a lifetime of knowledge and love to the table?

I want to finish with a quote from ‘Against Method’ by Paul Feyerabend (1993, 3^rd edition, London: Verso), which is a sort of anarchist examination of the whole culture and philosophy of science:

“The way in which social problems, problems of energy distribution, ecology, education, care for the old and so on are ‘solved’ in First World societies can be roughly described in the following way. A problem arises. Nothing is done about it. People get concerned. Politicians broadcast this concern. Experts are called in. They develop theories and plan based on them. Power-groups with experts of their own effect various modifications until a watered down version is accepted and realized. The role of experts in this process has gradually increased. We now have a situation where social and psychological theories of human thought and action have taken the place of this thought and action itself. Instead of asking the people involved in a problematic situation, developers, educators, technologists and sociologists get their information about ‘what these people really want and need’ from theoretical studies carried out by their esteemed colleagues in what they think are the relevant field. Not live human beings, but abstract models are consulted; not the target population decides, but the producers of the models. Intellectuals all over the world take it for granted that their models will be more intelligent, make better suggestions, have a better grasp of the reality of humans than these humans themselves.” (page 263).

Professional knowledge alone will not do the business. The expertise of people with learning disabilities and families, leavened with personal experience and love, needs to take centre stage (and not in an expert by experience way, but in a seriously in charge way), if we’re serious about replacing inpatient services with meaningfully better alternatives. And professionals (of which I am one) need to be appropriately humble about what we bring to the table (if we’re invited to the table, of course, which wouldn’t be our decision) and what our professional knowledges have done to, as well as for, people. An appropriate note for me to stop writing!

Expectancy of life?

[Warning: this post contains quotes from a 1914 textbook using terms which are today highly offensive]

Earlier this week, I took a rare trip to our university library (a sad indictment of current academic life in itself), and found there a copy of “Mental Deficiency (Amentia)”, the 1914 second edition of a clinical textbook by Alfred Tredgold, one of the principal architects of eugenics for people with learning disabilities in the UK. This textbook was immensely influential, and ran through several editions over a number of years.

In this post I don’t want to offer any general observations on this book, as historians and social theorists have done a much better job of this than I could. As I was going through some of it (I couldn’t face reading it cover to cover as I was feeling distinctly nauseous), I noticed a relatively short section on mortality, including some data. Although the information is limited, it gives a point of comparison between then (around 1910) and recent information from the Confidential Inquiry (https://www.google.co.uk/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=life%20expectancy ) roughly a century later.

In the table below is information for the median age of death (the age at which half of a group of people will have died) for people with learning disabilities (from Tredgold for 1910 and the Confidential Inquiry for 2010), compared to the general population (the source for this is the quite brilliant Office for National Statistics website http://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/mortalityinenglandandwales/2012-12-17#trends-in-average-life-span ).

	1910 (ish)	2010(ish)
Median age of death
People with learning disabilities	15-19 years	64 years
General population	61 years	82 years

What can we learn from this?

• First, the median age of death for people with learning disabilities a century ago was 15-19 years – 15-19 years – a full 44 years younger than the general population.
• Second, over a century the median age of death for people with learning disabilities has increased hugely, by roughly 47 years, to 64 years.
• Third, although the gap in median age of death has reduced over the past century, the median age of death of people with learning disabilities is still a full 18 years younger than the general population. If these trends were to continue (and this is wildly simplistic for all sorts of reasons), equality in age of death between people with learning disabilities and the general population would be achieved by 2080 (when the median age of death would be, erm, 96 years…).

Why do I think it’s worth writing a post about this? Well, here’s what Alfred Tredgold had to say about mortality in his 1914 textbook (page 149):

“The physical welfare of the ament of to-day is the subject of far more care and attention than was the case a few generations back. Then many perished who, under present conditions, would have survived; and there can be no doubt than modern medical and surgical practice, together with advances in preventive medicine, have diminished the mortality rate, not only of the fit, but of the unfit also. Nevertheless, the vitality of aments as a class is decidedly inferior to, and their expectation of life still remains appreciably less than, that of the ordinary population.”

Remember, he was writing this at a time when half of people with learning disabilities were dying before reaching the age of 20. From a medical professional, this is a self-fulfilling expectancy of a shortened life - would he have expected, demanded, worked strenuously to find out why people were dying (in his book he reports data showing that the most common cause of death for people with learning disabilities was tuberculosis at an astonishing 40%, but focuses his attention on the ‘nervous system’ as the most important factor implicated in people’s deaths)? 

Would he have thought all the resources of a health service should be put at the service of people with learning disabilities, as they should be for everyone else? Would he have predicted (or thought desirable) an increase of almost 50 years in the median age of death of people with learning disabilities over the next century?

My last thought for this blog is that, with some changes in terminology, that 1914 quote could just as easily be uttered by some medical practitioners today, and indeed can be seen in some of the NHS Board papers that @GeorgeJulian has been investigating. The circle of inaction is completely sealed – there’s no need to investigate why people with learning disabilities are dying younger, and do anything about it, because they die younger. Shorter life expectancy is just that – an expectancy that life will be short, by those who are in the best position to do something about it.

Homelessness and people with learning disabilities: what do we know?

Prompted by a series of tweets from @CommCats about meeting a woman with Down’s syndrome sleeping rough on a London street after falling behind with the rent on her flat, and a question from @alexsharedlives asking if I knew any statistics about people with learning disabilities who are homeless, I promised to have a dig around and see what I could find. Rather than a tweet bombardment, I thought it would be better to put this into a quick blog, but most of these statistics are new to me so I would be grateful to hear if I’ve got anything wrong or missed out any useful sources of information.

Social services statistics

To start with, I looked at the local authority statistics on the types of accommodation that adults with learning disabilities are living in. There are some massive limitations to this as a source of information on homelessness: 1) It’s only for adults aged 18-64 years old; 2) Up to 2013/14 this was only for adults with learning disabilities known to (i.e. recognised as a person with learning disabilities by) councils; 3) From 2014/15 this is only for adults with learning disabilities getting long-term support from councils.

The table below shows the number of adults people with learning disabilities recorded by councils as being in five types of ‘unsettled accommodation’ that to me suggest homelessness: rough sleeper/squatting; night shelter/emergency hostel/; refuge; placed in temporary accommodation (e.g. a B&B) by the council; and staying with family/friends as a short-term guest.

  

From 2010/11 up to 2013/14, the number of adults with learning disabilities in these types of accommodation increased by 29% over these three years – by 2013/14, 0.8% of all adults with learning disabilities known to councils (1,170 people) were homeless or in extremely temporary accommodation. The nearest equivalent figure for Scotland in 2014 was 57 homeless adults with learning disabilities, 0.2% of people known to the council (see http://www.scld.org.uk/wp-content/uploads/2015/08/Learning-Disability-Statistics-Scotland-2014-report.pdf ).

In 2014/15, councils only returned information on people getting long-term support – the total number of adults with learning disabilities recorded dropped drastically (by 13% in one year) and the number of people reported as being in these types of temporary accommodation dropped even more drastically (by 29% in one year, to 825 people). This isn’t a decrease in homelessness – it’s a shuffling of adults with learning disabilities off the statistical books.

So, even these highly limited statistics suggest a trend towards increasing homelessness for adults with learning disabilities, especially among those people who were known to councils but aren’t getting long-term support from them.

It also ignores the much larger group of adults who as children were recorded by the education system as having learning disabilities, but who are not identified as such in social or health care services – likely to be at least 700,000 people (see here for a discussion of this http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html ). Even taking the rate of 0.8% of people in highly temporary accommodation reported for adults with learning disabilities known to councils in 2013/14 (which is likely to be an under-estimate), this would suggest another 5,600 homeless adults with learning disabilities in England. In total, this is getting up towards 7,000 homeless adults with learning disabilities in England. 

Statutory homelessness statistics

I also looked at the statutory homelessness statistics reported by the Department for Communities and Local Government (see here https://www.gov.uk/government/statistical-data-sets/live-tables-on-homelessness ) to see if they included any information on people with learning disabilities. I’m new to this information so I may well have got things horribly wrong, but my understanding is that households with a person with learning disabilities should count as one of the ‘priority need’ groups for local authorities in terms of a homelessness duty, on account of their ‘vulnerability’.  

Unfortunately, it isn’t clear from the national statistics that this is the case. Information is broken down by some ‘priority need’ groups (households with dependent children; household member pregnant; homeless in emergency; household member vulnerable through old age, physical disability, mental illness, being a young person, domestic violence, or ‘other’), but people with learning disabilities are not one of these groups and are not explicitly mentioned as being part of the ‘other’ group either.

I don’t know if this means that information on people with learning disabilities is collected but not explicitly reported (so they are part of the ‘other’ group), or if people with learning disabilities are not, in fact, treated as a ‘priority need’ group by councils.

Overall, the number of households in ‘priority need’ groups being accepted as homeless by councils has increased from 2010 to 2015 (from 42,390 people in 2010 to 56,500 in 2015, an increase of 33%). Among the English population generally, there has also been a big increase in rough sleeping (102% increase from 2010 to 3,569 households in 2015 – see https://www.gov.uk/government/statistics/rough-sleeping-in-england-autumn-2015 ). It would be odd if adults with learning disabilities, particularly those not getting long-term support from councils, were bucking this general trend.

A Shelter report into the 2014 Scottish homelessness statistics (see http://scotland.shelter.org.uk/professional_resources/policy_library/policy_library_folder/homelessness_in_scotland_2014_getting_behing_the_statistics ) reported that 630 out of 9,999 households with a priority need assessed as homeless included a person with learning disabilities as a ‘priority need’ – this was 2% of all households assessed as homeless by local authorities in Scotland.

Surveys

Given the severe limitations of the national statistics, surveys conducted by homelessness organisations can be really helpful. For example, Homeless Link do an annual survey of providers of support to homeless people, and in their 2015 report they found that 8% of people using homeless accommodation services were people with learning difficulties, and 7% using day centres for homeless people were people with learning difficulties (see http://www.homeless.org.uk/facts/our-research/annual-review-of-single-homelessness-support-in-england ).

What do we know?

From this initial look at the statistics concerning homelessness amongst people with learning disabilities in England, we know some things but not others:

1. Whatever information you use, homelessness is a significant problem amongst people with learning disabilities, and is likely to be on the increase.
2. Official statistics say very little about homelessness amongst people with learning disabilities, and are moving towards making the issue of homelessness amongst people with learning disabilities invisible.
3. We don’t know how many people with learning disabilities are homeless, how they have been made homeless, the extent to which homelessness services are accessible to people with learning disabilities, and how (if at all) people are being supported to regain a home.

Risky business

Another nerdilicious blogpost. This one is about a central part of the NHS England-led plan ‘Building the right support’ https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf , which is the latest Transforming Care reboot. ‘Building the right support’ makes the welcome point that reducing the number of people going into inpatient services will require much more extensive, earlier, and more useful community support.

As part of this, the plan says that there are an estimated 24,000 people ‘at risk of being admitted to hospital without the right support’ (page 36). My understanding is that there is quite a lot of head-scratching around how to identify in practice who these 24,000 people are, and then to work out what services are needed to support them so that they don’t end up in inpatient services.

Personally, I’m not convinced about this ‘risky cohort’ idea, and I think it might have some unhelpful unintended consequences.

First, the 24,000 figure is extrapolated from a study examining the prevalence of challenging behaviours amongst a population of people with learning disabilities in a large area of Wales (total population 1.2 million) in 2007 (Lowe et al., 2007). It is a relatively large, well-conducted study, with similar findings to previous research. However, using this as a benchmark to construct a ‘risky cohort’ raises a number of problems, including:

1) There are no nationally comprehensive data on who is currently showing ‘challenging behaviour’, and trying to construct such a dataset is likely to be highly expensive, difficult and time-consuming.

2) We also don’t know if the cohort of people with the types of ‘challenging behaviour’ used to derive the 24,000 number make up all/most of the cohort of people who end up in inpatient services. For example it’s likely to miss out relatively able people who end up in inpatient services via ‘offending’ routes, where even standard forensic risk measures don't seem to be brilliant at predicting what people do once they arrive in an inpatient service (O'Shea et al., 2015). From the sparse research that has been done it’s also likely to miss out some people with learning disabilities who end up in inpatient units with a diagnosis of a mental health problem - it's unclear how many of these people would be picked up as showing 'challenging behaviour' (Chaplin et al., 2015; Devapriam et al., 2014) .

3) In its original form, the definition of ‘challenging behaviour’ is a social construction, dependent on what the person is doing only within the context within which they are doing it. Hand someone a pair of glasses and you can be put in a temporary cell - flatten someone running past you and you can be a hero (both of these things happened to Burnley FC mascot Bertie Bee - see this article for a brief explanation of context http://www.mirror.co.uk/sport/football/news/burnley-mascot-sent-jailed-after-2644050 ). Staff who don’t or choose not to really understand a person may very quickly reach for a ‘challenging behaviour’ label and punitive response that is completely unnecessary, establishing a punitive spiral with no ready exit. Identifying a risky cohort of relatively fixed quantity locates the ‘risk’ squarely within individuals, rather than paying careful attention to people’s histories, what matters to them, and the influence of environments (and other people).

4) We don’t know what impact changing patterns of/reductions in the group of people supported by/known to social services will have on who is visibly ‘at risk’. It’s entirely possible that the more able ‘offending’ cohort of people will stop being identified as people with mild learning disabilities at all (either in education or adult services). Although a lack of support might make this group more likely to get into trouble with the law, and might mean they are more likely to end up in prisons or even mental health inpatient services, they will become invisible to learning disability services and drop out of the ‘Transforming Care’ remit altogether. Which will buff up the Transforming Care target indicators no end, while doing a grave disservice to that group of people.

5) We don’t know what impact changes to inpatient services themselves will have (assuming that there ever are any!) on the quantity of people that could be admitted and the ‘problems’ that would make someone ‘eligible’ for an inpatient service, and therefore what a ‘risk cohort’ would look like. Over a ten year period, some of the 'reasons' for admission to a single inpatient unit, and what happened to people once admitted, changed quite substantially (Oxley et al., 2013).  And of course, if community support services do increase and improve, then this would also change who is ‘at risk’.

6) The boundaries between ‘inpatient’ services and other residential services (the infamous Daisy residential service) are becoming increasingly fuzzy, as local areas look to claim that their inpatient numbers are going down. The ‘risk cohort’ might be less likely to go somewhere called an ‘inpatient service’, but they might be more likely to end up somewhere with a different label but serving a similar function (residential special schools are part of this too, I think). As Mansell and colleagues said in 2010: "The large number of patients in low secure services raises the question whether this type of service is recreating the intellectual disability institutions which government policy intends to close" (Mansell et al., 2010).

So I think if you want to know anything meaningful about the group(s) of people who might be ‘at risk’, there are a number of questions you need to ask:

1) Does having an ‘at risk’ cohort, who are maybe getting extra support as a result of their risky status, create more de facto eligibility hurdles? Do people and families have to show a ‘problem’ to get this extra support, and what if the extra support reduces the ‘problem’ – does the support stop? How are the boundaries to be policed? Personally I think support needs to be offered universally as the only way to get round this gatekeeping, avoid unnecessary labelling, and develop coherent support that is rooted within meaningful communities.

2) ‘At risk’ of what? At risk of admission to an inpatient service is too restrictive (for the reasons I’ve outlined above) and will lead to ‘gaming’ the system from unscrupulous types. I think instead there needs to be a recognition that trying to get a definitive ‘at risk’ list of people will be likely to be highly expensive and slightly self-defeating as circumstances change. Instead, I would propose some more pragmatic steps to be done on an ongoing basis to monitor what’s happening, for example:

a.      We don’t know much at all about the histories of people who are being admitted to inpatient services. It should be relatively straightforward to find out some details of people’s histories and collate them either at the point of admission and also for people ‘averted’ from inpatient admission. This would need to be ongoing to look for potential changes in ‘risky’ histories as the pattern of inpatient services changes.

b.      We need to do something similar for people in residential special schools (and to examine their onwards trajectories too).

c.      We need to look at people who get/acquire some label of learning disabilities when they come into contact with the criminal justice system (police contact onwards) in terms of histories and what happens to them (diversion to forensic services, for example?).

d.      Within annual health checks we need better coverage of mental health problems and ‘risky’ behaviours.

e.      We need to find a way of understanding what is happening to the group of people formerly known as people with mild learning disabilities.

Within local areas, we need to build a comprehensive picture of what is happening to people that is monitored in real time. This shouldn’t need a complicated extra special database of ‘risky’ people. It needs to get a whole picture of where people are (including people who are sent out of area). Are apparent reductions in inpatient services accompanied by increases in emergency hospital admissions, or people getting into the criminal justice system, or into forensic services? As the number of people identified as eligible for learning disability services decreases, are there local increases in emergency hospital admissions or generic mental health inpatient admissions? I think in areas that have their act together, most of this information  will already be available – it is just very rarely put together in ways that make any kind of sense. I think this is much more achievable than identifying an ‘at risk’ cohort of people with learning disabilities.

References

Chaplin, R., Roach, S., Johnson, H. & Thompson, P. (2015). Inpatient Children and Adolescent Mental Health Services (CAMHS): outcomes of young people with and without intellectual disability. Journal of Intellectual Disability Research, 59, 995-998.

Devapriam, J., Alexander, R., Gumber, R., Pither, J. & Gangadharan, S. (2014). Impact of care pathway-based approach on outcomes in a specialist intellectual disability inpatient unit. Journal of Intellectual Disabilities, 18, 211-220.

Lowe, K., Allen, D., Jones, E., Brophy, S., Moore, K. & James, W. (2007). Challenging behaviours: prevalence and topographies. Journal of Intellectual Disability Research, 51, 625-636.

Mansell, J., Ritchie, F. & Dyer, R. (2010). Health service inpatient units for people with intellectual disabilities and challenging behaviour or mental health problems. Journal of Applied Research in Intellectual Disabilities, 232, 552-559.

O'Shea, L.E., Piccioni, M.M., McCarthy, J., Mason, F.L. & Dickens, G.L. (2015). Predictive validity of the HCR-20 for inpatient aggression: the effect of intellectual disability on accuracy. Journal of Intellectual Disability, 59, 1042-1054.

Oxley, C., Sathanandan, S., Gazizova, D., Fitzgerald, D. & Puri, B.K. (2013). A comparative review of admissions to an intellectual disability service over a 10-year period. British Journal of Medical Practitioners, 6, a611.

Not roaming in the gloaming

[the photo is of Lennox Castle, taken from this website http://www.lennoxcastlestories.co.uk/news which is well worth a browse]


Just a quick post, this one. I didn't realise until today (although I should have known) that Scotland has been conducting a census on the number of people in learning disability and mental health inpatient services in Scotland. The most recent one I can find was conducted at the end of October 2014 (I think another one is planned in the spring of 2016?). Most of the information in the reports I could find is not specifically provided for people with learning disabilities (see here for reports from the Census http://www.gov.scot/Publications/2015/06/7555 ), but some headline figures are...

1) There are 3,909 people in total NHS Scotland learning disability/mental health inpatient services.

Of these, 230 are people with learning disabilities, of which 226 are under a learning disability psychiatrist and 181 are in learning disability units. The median length of stay for people with learning disabilities in NHS Scotland inpatient services was 33 months.

Out of this 230, it looks like at least 67 people with learning disabilities are in NHS Scotland forensic inpatient units (they are all under a learning disability psychiatrist).

2) There are 128 people in total in these types of inpatient services outwith (I do love the word 'outwith') NHS Scotland - these are places commissioned by the NHS in Scotland but are either private facilities in Scotland (96 people in total) or facilities in England (47 people in total).

Of these, 31 are people with learning disabilities in inpatient services outwith NHS Scotland. The median length of time since people had been admitted to their inpatient unit was 56 months.

So in total, there are 261 people with learning disabilities in inpatient units commissioned by the NHS in Scotland.

Not sure there's a huge amount to say about this, except:

1) On an English parochial note, not much of the discrepancy between the English Learning Disability Census and the English Assuring Transformation Dataset (which records around 500 people fewer than the Census) is going to be due to Scottish people with learning disabilities being placed in English inpatient services.

2) On a broad population basis, the rates of people with learning disabilities in inpatient services in England and Scotland are broadly similar.

I'd be very interested to know if there is similar information that I've missed for Wales and Northern Ireland.

A house where nobody lives

A quick, genuine question. Can someone please explain to me why ‘social investment’ is such a boon to cash-strapped social care commissioners?

Take this ‘case study’, highlighted in the NHS England-led October 2015 reboot of ‘Transforming Care’, ‘Building The Right Support’ (see https://www.england.nhs.uk/wp-content/uploads/2015/10/ld-nat-imp-plan-oct15.pdf ).

Presumably this means that this is considered to be a ‘good thing’ by NHS England and a model for others to follow. To my naïve mind, this amounts to the following:

1) Bonds in my simplistic view are in effect requests for loans guaranteeing a particular rate of return over a fixed period of time – if you lend us £X, then we guarantee you’ll get £X + £Y% over Z years. If investors, whether social or not, think the risk isn’t too high for the rate of return they’ll get (compared to what is on offer elsewhere) then they’ll go for it.

2)  The money is used to buy or build property – bricks and mortar, that has to be adapted in some way to be ‘specialised’.

3) People then move into these ‘specialised’ properties, presumably mostly funded by local authorities (and maybe CCGs if they’re ‘specialised’ enough).

4)  This funding pays for the property (and more than likely, the support), and also pays back the bond ‘investment’.

5) Once the bond has been paid off (by the public purse), the investors have ended up with their slice of interest and the organisation who leveraged the money end up with the properties and the business.

This model seems to be like the Glazers’ leveraged buyout of Manchester United – borrow the money to buy the club, use the income the club generates (and maybe starve it of investment/sell stuff from time to time) to pay off the debt (while taking out handy slices for yourself), end up owning the club.

At the moment, there seem to be a lot of variants of this. Like Triodos bank underwriting the building of an apparently speculative dystopian holiday camp-style ‘specialist supported living village’ in North Shields (see http://www.disabilitynewsservice.com/alarm-over-huge-new-care-village-for-autistic-adults/ ), when local authority commissioners are saying they won’t use it (although the local councillor brags of 100 jobs being brought to the area). The accommodation will be so ‘specialist’ that the back-up plan from the developers is to turn it into bedsits for sale if the ‘care’ commissioning doesn’t work out.

Another common approach is the venture capital buyout – a small ‘care’ or ‘support’ provider, struggling to provide a decent service as public funding is squeezed, is bought out for a song by a venture capital company (or a ‘care’ chain ultimately owned by a venture capital company). Why would a venture capital company want to take on such struggling businesses? Well, there are a number of options: 1) Squeeze costs (the number and expertise of staff, primarily); 2) Sell off the bits that won’t turn a profit; 3) Recast your services as ‘specialist’, thereby requiring commissioners to pay through the nose for it.

As social services withdraw from directly providing support, and NHS Trusts are under pressure to reduce officially labelled ‘inpatient services’ from NHS England, what pattern of services/support will this amount to?

First, residential services (of whatever label) will be in the hands of big private providers (the distinction between big charities or for-profit companies is irrelevant as they behave in strikingly similar ways), with smaller support agencies (without the size and muscle to convince ‘social investors’ to invest in them when public agencies won’t or to tender via bureaucratic procurement processes) being progressively squeezed out.

Second, residential services will look increasingly ‘specialised’ in congregate ‘specialised’ buildings, which look spiffy in architects’ drawings. The option of people owning or renting regular flats or houses will become even more difficult (and current trends in social housing, housing association housing and the private rental market, let alone house prices, don’t help).

Third, these congregate residential services will require filling to keep the profits coming. Doesn’t matter where a person wants to live (and imagine someone saying they want to leave and move somewhere else?) – it’s Room 4b in the ‘Bosky Glade’ unit or nothing.

Fourth, the boundaries between what counts as an ‘inpatient’ service, a residential care establishment and ‘supported living’ will become increasingly fuzzy/irrelevant. Now, these distinctions are already increasingly irrelevant in terms of what people with learning disabilities actually experience. Will the ‘Daisy’ residential unit in the grounds of a psychiatric hospital (see http://www.gazetteandherald.co.uk/news/13803905.New_health_unit_for_Devizes/ ) feel very different to an inpatient unit for the people living there? Will the North Shields ‘supported living’ experience feel any different to a care home? These distinctions are increasingly only meaningful in terms of finances for the organisations running them and which compartment of the public purse pays for them. NHS England want to reduce the number of people in inpatient services? No problem – we’ll build some specialist residential care units instead. Social services want to reduce their residential care spending? Fine – we’ll stick in some internal doors, call it supported living, and rake in the cash from uncapped housing benefit (although maybe not for much longer…).

Fifth, the public purse will end up paying more for more institutionalised services. As public money for these services decreases, the only way this circle will be squared is for social and health services to raise the eligibility drawbridge and provide support to fewer and fewer people.

Sixth, if the money stops coming in at a suitable profit-turning rate, any residential service will close, with no regard for what people need now or in the future.

Seventh, all of the above will lead to an increasing cohort of people who don’t get any support and get themselves into real trouble, which will, of course, require more ‘specialised services’ of one sort or another. And also, an increasing cohort of people living with their parents well into their parents’ old age, again likely to lead to ‘crisis’ relocation into … a space in a specialised service.

Last, any vestige of strong commissioning will wither away and become largely a matter of selection from a limited range of glossy brochures.

One of the problems when I’m writing a blogpost is that I start pursuing the logic of my own position and usually completely gloom myself out. Note that the wishes of people with learning disabilities are pretty much nowhere in the post so far – people are simply exploitable commodities. So, is there anything that can be done to stop this juggernaut of corporate institutionalisation? I don’t know, but I think there are a few things that might help:

1) Scrap the financial distinction between supported living and residential care, because...

2)  Every person with learning disabilities should have as a basic starting point full rights as a tenant or home owner, no matter what support they are getting.

3) Through meaty personal budgets (which need to sufficient to include a housing element) and/or Individualised Personal Commissioning, every person gets a long-term (10 years at least), guaranteed budget to help them plan their life.

4) People living with their families have a similarly guaranteed budget.

5)  People can use these budgets to take out a mortgage, or invest for themselves in housing, if they want to.

6)   People can do this as individuals or with another person/people if the person wants.

7)   People don’t have to go through the ‘procurement’ processes of commissioners to get what they want.

8)  People have access to independent financial and legal advice (a role for the Citizens’ Advice Bureau?).

9)  These budgets move with the person if they move to a different part of the country.

10) And … people with learning disabilities and families should be in charge of commissioning strategy while we’re at it.

I know this is over-stating a case in a way that some service providers in particular will think is unfair. I want to put this starkly to illustrate the tide that decent service providers are swimming against. And finally, as Neil Crowther says in his excellent recent post (see https://theindependentlivingdebate.wordpress.com/2016/02/09/salvaging-opportunities-from-the-jaws-of-defeat/ ), trying to come up with positive ideas feels somewhat naïve at the moment. I stand by my naivety, however. What do you think?

NB: The title, by the way, is from a Tom Waits song - which in an oblique way sums up why home is so important https://www.youtube.com/watch?v=W0YxjH09TDU 

Out for the count

At the start of the Winterbourne View/Transforming Care programme to get (some) people with learning disabilities out of specialist inpatient services, it became very clear that information about the number of people in inpatient services, and what was happening to them, was pretty much absent. The National Audit Office (see https://www.nao.org.uk/wp-content/uploads/2015/02/Care-services-for-people-with-learning-disabilities-and-challenging-behaviour.pdf ) and the Public Accounts Committee gave NHS England a good going over about this in 2015.

Although the determined invisibility of people with learning disabilities in inpatient services had been an issue for some years, the Health and Social Care Act (2012) made a bad situation worse in terms of trying to collect comprehensive information. At the end of September 2015, according to data collected from (most) commissioners (HSCIC Assuring Transformation, see http://www.hscic.gov.uk/catalogue/PUB19833 ), people with learning disabilities and/or autism were being kept in inpatient services by 204 out of 209 local Clinical Commissioning Groups, and 10 regional NHS England specialist commissioning hubs. According to the Learning Disability Census (see HSCIC http://www.hscic.gov.uk/article/6874/Learning-Disability-Census-2015-almost-half-of-inpatients-with-learning-disabilities-common-to-each-census-since-2013 ), at the end of September 2015 people with learning disabilities and/or autism were in English inpatient services run by 58 different NHS Trusts and 31 different independent sector organisations.

NHS England and the Health and Social Care Information Centre at the moment have three sources of information about people with learning disabilities and/or autism in inpatient services.

Monthly Assuring Transformation data (see http://www.hscic.gov.uk/catalogue/PUB19833 - I last discussed information from this dataset on this blog here http://chrishatton.blogspot.co.uk/2015/11/impatient-inpatient.html ). This is information collected every month from health service commissioners in England (although not all of them send in returns every month) about how many people with learning disabilities and/or autism they are paying for in inpatient services. Although they are all English commissioners, the numbers should include people who they have sent to inpatient services out of England (Wales and Scotland, most likely) as well as people in inpatient services in England.

The Learning Disability Census (see http://www.hscic.gov.uk/article/6874/Learning-Disability-Census-2015-almost-half-of-inpatients-with-learning-disabilities-common-to-each-census-since-2013 ). This collects information from inpatient service providers in England about which people with learning disabilities and/or autism are in their inpatient services at the end of September each year. This could include people in English inpatient services who have been sent there from commissioners outside England (again, most likely to be Scotland and Wales).

Mental Health and Learning Disabilities Dataset Statistics (see http://www.hscic.gov.uk/catalogue/PUB19578 ). This information is also collected monthly, from a wide range of providers of mental health and learning disability specialist services in England, although so far there have been no reports breaking down in detail the number of people using different types of specialist learning disability service (this includes inpatient services, but also specialist community services).

The Learning Disability Census (which was done in 2013, 2014 and 2015) is not planned to be repeated in 2016. Instead, the other two sources of information (Assuring Transformation and the Mental Health and Learning Disabilities Dataset Statistics - MHLDDS) are supposed to be able to take up the slack and provide all the information needed about people with learning disabilities and/or autism in inpatient services. As things stand at the moment, I think this assumption is debatable.

From what we know, it’s possible that both the Assuring Transformation and MHLDDS datasets are going to miss significant numbers of people that, according to the Learning Disability Census, are in specialist inpatient services.

First, the Health and Social Care Information Centre has done a detailed analysis comparing people with learning disabilities and/or autism reported to be in inpatient services at the end of September 2015, according to Assuring Transformation versus the Learning Disability Census (this analysis is reported in the Learning Disability Census report). In total the Learning Disability Census reported 3,000 people in inpatient services, compared to 2,625 people reported in Assuring Transformation. In total 2,140 people were reported in both datasets to be in an inpatient service at the end of September, 855 people were inpatients according to the Learning Disability Census but not Assuring Transformation, and 480 people were inpatients according to Assuring Transformation but not the Learning Disability Census.

Some of these differences might be explainable. For example, in Assuring Transformation commissioners regularly ‘find’ more people that they report retrospectively, so the number of people in inpatient services at the end of September reported by commissioners will increase. There are also some people picked up by the Learning Disability Census in English places that are not commissioned by English commissioners (and so not included in Assuring Transformation). Conversely, Assuring Transformation should pick up people in places outside England (so not included in the Learning Disability Census) that have been commissioned by English commissioners. Taking all these together, it means that we’re still not clear how many people with learning disabilities and/or autism are in inpatient services at any one time, with the potential numbers of people being anything from around 2,600 people to 3,500 people.

Second, will the MHLDDS pick up information on everyone identified in the Learning Disability Census as being in a specialist inpatient service? To get a rough handle on this, I looked at both the Learning Disability Census and the MHLDDS for the lists of service providers from which data were collected at the end of September 2015 (these are available in the HSCIC online data tables). In total there were 26 provider organisations mentioned in the Learning Disability Census that were not in the MHLDDS list, with at least 445 people with learning disabilities and/or autism living in these places according to the Learning Disability Census.

These organisations included six NHS Trusts with a total of 60 people:

·        3 children’s trusts (Alder Hey 5 people; Sheffield Children’s 5 people; Birmingham Children’s 5 people)

·        2 community trusts (Derbyshire Community Health Services 5 people; Birmingham Community Healthcare 20 people)

·        Puzzlingly, 1 mental health trust (Norfolk & Suffolk 20 people)

They also included eight independent providers with fewer than 5 people each (Shrewsbury Court Independent Hospital; The Lane Project; Alternative Futures Group; Turning Point; Vision Mental Healthcare; Eden Supported Living; Making Space; The Retreat Hospital York).

Finally, they included 12 independent providers with 5 or more people (totalling 385 people between them):

·        Turning Point (Rotherham) 10 people

·        The Breightmet Centre for Autism 5 people

·        Baldock Manor (Nouvita Ltd) 5 people

·        Danshell Group 85 people

·        Equilibrium Healthcare 30 people

·        Curocare Ltd 30 people

·        Glen Care 5 people

·        Lighthouse Healthcare Ltd 85 people

·        St Mathews Healthcare 25 people

·        Jeesal Akman Care Corporation Ltd 40 people

·        Brookdale Healthcare Ltd 40 people

·        Cheswold Park Hospital 25 people

If the Learning Disability Census is not to be repeated, these providers need to be checked (it’s possible that there are some errors in the Learning Disability Census, particularly among providers identified with less than 5 people) and added to the list of providers in the MHLDDS dataset. Apart from this practical step, there are much bigger issues that confront anyone trying to collect meaningful information about people with learning disabilities and/or autism in inpatient services.

First, clarity is needed about whether to collect information about people in inpatient services in England (even if they’ve been sent there from a commissioner in Wales, Scotland or elsewhere) and/or information about people in inpatient services commissioned by English commissioners (even if they are sent to inpatient services in Wales, Scotland or elsewhere). My feeling is we need to know both, and co-operation with other areas of the UK is needed to get a better overall picture if Transforming Care targets for reductions are not to be gamed by commissioners and service providers.

Second, it’s going to be difficult to keep up with the proliferation of independent sector organisations providing inpatient services – the number of people with learning disabilities and/or autism in independent sector inpatient services seems to be increasing as the number of people in NHS inpatient services declines.

Third, if people with learning disabilities and/or autism do start to make increasing use of generic mental health inpatient services rather than specialist learning disabilities inpatient services, information systems will need to be able to track individuals with learning disabilities rather than people in learning disability services (and to look for people across a wider range of NHS Trusts) – a challenge to the MHLDDS and other information systems too.

Fourth, to achieve Transforming Care targets, there appear to be a number of new services being developed that to the people living in them may look a lot like an inpatient service but which are not going to be classified as such. The new-build ‘Daisy’ complex in Wiltshire (see http://www.wiltshireccg.nhs.uk/news/new-learning-disabilities-service-to-launch-in-wiltshire ), where people are to be transferred from inpatient services to a 9-bedded ‘residential home’ to be built in the grounds of a psychiatric hospital, is a prime example of this. This will not count as an inpatient unit but may well feel like one (except that people won’t be expected to ever leave).

Fifth, another crucial fuzzy boundary is between residential special schools and inpatient services. Around 160 people with learning disabilities and/or autism up to the age of 18 are reported to be in inpatient services, but it is unclear how this maps on to the number of people in residential special schools. Knowing about these schools is a really important part of any strategy that is serious about preventing young people going into inpatient services in the first place, as a recent excellent research review by Nick Gore and colleagues on residential schools makes abundantly clear http://sscr.nihr.ac.uk/PDF/ScopingReviews/SR10.pdf ).

The last point I want to make is my personal biggest reason for wanting to keep the Learning Disability Census, and it isn’t about tracking the number of people in inpatient services. My reason is that the Learning Disability Census is the only place that gives us any regular, large-scale information on what happens to people in inpatient services – restraint, seclusion, assaults, and antipsychotic medication usage. Losing this information would give us no way of scrutinising what inpatient services are doing to people (Transforming Care aims to retain around half of the current number of inpatient places), which to me is an essential part of evaluating the impact of the Transforming Care programme.