Council for Evidence-based Psychiatry: Will they tackle learning disability abuse?

This morning, I saw on the Facebook group for Invest in ME a link to an article on the Mad in America website announcing the launch of the Council for Evidence-based Psychiatry (CEP), which is to take place at the Houses of Parliament (they don’t say which house; perhaps that will be supplied to people who attend) on 30th April. Their website seems to concentrate largely on the use of drugs in psychiatry, and includes a number of stories of people’s recovery from dependency on benzodiazepines (benzos), antidepressants and other psychiatric medications. The CEP was founded by James Davies, PhD, a psychotherapist and lecturer in social anthropology and psychotherapy at Roehampton, and the author of Cracked: Why Psychiatry is Doing More Harm Than Good. The launch is to feature Dr Joanna Moncrieff, a UCL psychiatrist, and Prof Peter Gotzsche of the Cochrane Collaboration, which analyses the results of drug trials. (The organisation is on Facebook and Twitter.)

That the link was on the Invest in ME page is natural, because people with ME have suffered years of interference in their treatment, and in public perception of their condition, by the psychiatric profession, and this has resulted in horrific abuses over the years, including sufferers being held in noisy wards, being made to do exercises at a time when their condition dictates rest, and being treated only for symptoms that are misunderstood (e.g. not eating because of nausea interpreted as anorexia) rather than the condition itself. However, there is a less obvious aspect of psychiatry that they may wish to take an interest in, which is its involvement in the treatment of people with learning disabilities, particularly when in crisis. The law gives them considerable power to intefere in the affected people’s lives, including to transfer them away from home (or from near home), and to prescribe the same medications that are used on people who are mentally ill, which often have dreadful side effects. The units, known as assessment and treatment units (ATUs), are meant to provide short-term treatment in a crisis, but they often end up holding people for months or even years, and the results are sometimes lamentable, even tragic.

Last night I watched a video in which Mark Neary, whose son Steven is autistic and currently lives at home with him in west London, explained what happened when he put his son into a local respite home in 2009, for what was meant to be a few days while he was ill with flu. After just a couple of days, Steven was transferred to a so-called positive behaviour unit after the respite centre staff claimed that they could not cope with Steven’s behaviour (as his routine had been disrupted by being placed in the unit without notice, his distress showed in challenging behaviour). The social worker and management immediately formed the impression that if his behaviour was “this bad” in the unit, it could not possibly be safe to return him home. They appeared to implement a “transition home” plan while secretly looking for residential care, eventually settling on a hospital in Wales that Steven would have to be sectioned to be sent to. However, just in time, Mark found a solicitor who challenged the orders the council had been using to keep Steven in the home, and he was released home just before they could transfer him.

In short, they would have had to find a pretext to impose a section on him (a section is the relevant part of the Mental Health Act that allows the detention of a mentally ill person who requires treatment). This is not the only time this trick has been used. Last September an ATU in south Wales imposed a section on a young autistic woman, Claire Dyer, who had attempted to run away a number of times and was sometimes violent, although was calmer when her parents and family were around, and was allowed out with them regularly. A month or so later, the team at the ATU conveniently decided she needed to be transferred to a secure hospital unit in Northampton, some 185 miles away, which would separate her from her family and friends whose contact obviously made a positive difference to her state of mind and behaviour. The family have fought the decision, but a tribunal is not due to meet again until May, and the team has refused to rule out the transfer to Northampton (where there are currently no beds and an interview was thwarted by her and her family’s lack of co-operation), something which has caused the young woman a lot of stress for which they at one point prescribed diazepam rather than simply abandoning the idea.

There are laws in this country which allow residential units to manage challenging behaviour and prevent escape attempts by people with learning disabilities or dementia when they would, for example, get themselves lost or run into the road or do something else dangerous, in particular the Mental Capacity Act. The Mental Health Act is meant for ensuring that mentally ill people get treatment when their illnesses mean they would resist, or cause them to behave dangerously.

NHS England has given a commitment to get long-stay residents out of ATUs by June this year, but only a small number have currently got an exit date of before June. The units are commonly used when there is a crisis in a learning disabled person’s life rather than the onset of mental illness as such; it is often precipitated by the end of school life and a transition to an uncertain adult life and the departure of most of their friends. An example was Connor Sparrowhawk, an 18-year-old who was autistic and had epilepsy, who was admitted to such a unit in Oxford in March 2013 after a crisis that was exacerbated by lack of support from local health and social services. It was intended that he remain there only as long as it would take to get home support in place, and the senior staff at the unit believed that he was not mentally ill and should be discharged. However, he drowned in the unit’s bath in July; he had been left alone, observed only at 15-minute intervals despite the staff knowing he had epilepsy. This, of course, is not because it was a psychiatric unit but because it was negligently run, as demonstrated by a subsequent Care Quality Commission inspection report and by the independent investigation into Connor’s death, but that an NHS trust can let that unit and its neighbouring unit get into that state does show that there is a lack of aspiration for people with learning disabilities in this country, and a low expectation of what kind of care can or should be provided for them.

It is to be welcomed that someone is publicly challenging the science behind psychiatry and exposing the harms caused by some common psychiatric drugs. All this is happening to people with learning disabilities as well, and for some there is no accommodation available other than one of these psychiatric units. I hope that his organisation will join in the fight to free both people with diseases like ME, as well as people with autism and other learning disabilities, from the tyranny of psychiatry, from sedatives which cause debilitating side effects, from laws which enable to clinicians to rearrange lives for dubious benefit at the stroke of a pen. They should, at most, be on tap rather than on top in the care of people with learning disabilities. Will Dr Davies join us in fighting this abuse against some of society’s most vulnerable?

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