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.
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.
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 19th and 20th 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, 3rd 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!