Close the units down?

Picture of Josh and Phill Wills (a white teenage boy and man) sitting on a park bench, with deep blue sky and trees behind themLast Wednesday the BBC’s Call You and Yours programme on Radio 4 held a feature on the ‘progress’ in getting long-term residents out of assessment and treatment units (ATUs), the type of short-term mental health units for people with learning disabilities that includes Winterbourne View, where abuse was exposed in Panorama in 2011, and the Slade House STATT unit in Oxford in which Connor Sparrowhawk died because of neglect in 2013. The programme featured an interview with Phill Wills, whose son Josh has been in a residential unit in Birmingham since 2012, 260 miles from his family who live in Cornwall, and with Sir Stephen Bubb, who this week published a report which showed that thousands of people were still languishing in ATUs despite ministers’ pledging four years ago to get them out.

The calls didn’t just focus on that immediate issue; they included parents who had had to struggle to get statements of Special Educational Needs for their children in the face of opposition from local authorities. It would have been more useful to hear more calls from relatives of people who have been wrongly deprived of their liberty for extended periods, subject to abusive sectionings or referrals, been transferred a long distance or have died as a result of poor care or abuse. The opening call was from a relative of a young autistic girl who was placed in a hospital unit at age 15 because her school was concerned about deteriorations in her behaviour, but on arrival she was immediately restrained and given medicine by injection, and she remained in her room for most of the next two years, and it was only when the family got help from Mencap and the Challenging Behaviour Foundation that they were able to get her out of the unit, and she has not needed to be restrained or injected since. But she was the only caller from a family in this position; while Phill and Josh’s story is important, they have no qualms with the quality of care their son has received. Some autistic people’s experiences have been very different. (Josh was expected to go to a new home in Cornwall this month, but the latest in a long line of bureaucratic and legal delays has meant there is no longer a date for his return although the home is ready for him.)

There has, in my opinion, been too heavy a focus on the matter of ATUs and not enough on other types of units which are taking in people with learning disabilities in which they do not have expertise. The reaction to the abuse scandal in one institution, which happened to be an ATU, has been “close the ATUs down”, when there are many other types of institutions in which bad care flourishes behind closed doors because carers are hired who are of poor calibre and they are not vetted, trained or monitored — old people’s homes, boarding schools, psychiatric wards, young offenders’ institutions. There is a song doing the rounds called “Close the Units Down”, which names four people as autistics who died in ATUs (Stephanie Bincliffe, Thomas Rawnsley, Nico Reed and Connor Sparrowhawk), when in fact Nico and Thomas were in what were meant to be specialist care homes and Nico was not autistic. Every hospital assesses and treats; that’s what they are for. If we just close ATUs down, people with autism or other learning disabilities who suffer a crisis or actually become mentally ill will end up in other types of equally inappropriate units. Autistic people with challenging behaviour are already being sent to secure psychiatric units and other institiutions which house offenders, in some cases with violent consequences.

Listening to some of the victims’ and their families’ stories and talking to some of the parents, I hear the theme of mental health staff not understanding autism coming up time and again, even in learning disability mental health environments and homes and this affects people with autism at every level of functioning (for example, young people with Asperger’s hospitalised because of a mental health crisis are affected by it too). I would suggest that a better solution to autistic people being the victims of inappropriate treatment is to make sure that all mental health professionals, particularly those dealing with in-patients (and deprivation of liberty is a fact in almost all psychiatric wards, since the vast majority house sectioned and informal patients in the same wards, requiring them to be locked), have training in autism, and this must include mandatory retraining for those already practising. It should be part of every psychiatrist’s and mental health nurse’s university education, and training in dealing with autism and challenging behaviour should be available to other medical staff (so that, for example, the events that led to the death of Kane Gorny in south London need not be repeated). This should ensure that institutions do not trigger the very types of behaviour that may have resulted in the person being sent there, and then punish them for it with denial of ‘privileges’ such as being allowed in the grounds or trips out with family, overmedicate them for extended periods (with the health risks that come with that, e.g. liver damage), escalate confrontations such that a patient is injured or killed in restraint, or assume that they would behave the same everywhere (rather than just in the unfamiliar institutional environment) and therefore keep them there longer than they need to be.

(However, autism is not the only thing some mental health staff seem not to understand. Connor Sparrowhawk died not because of a lack of understanding of autism (although that was an issue), but because staff forgot, or were not trained in, basic necessities in caring for someone with epilepsy, i.e. don’t leave them alone in the bath. I also know a woman who was hospitalised in Burnley during the Orchard Beds affair last year who had an asthma attack, and it took about an hour for that to be seen to. You can die of that as well. She also had difficulty attending to other serious physical health problems while in hospital. Studies in many countries have shown that people with mental health diagnoses suffer discrimination in other areas of healthcare, their symptoms often assumed to be related to their mental health diagnosis. The poor state and underfunding of mental health services does not only affect people with learning disabilities; children and adolescents, as in the ongoing Hull scandal, are another badly affected group.)

I agree wholeheartedly that people with learning disabilities should not be spending years living in hospital units that were meant to care for short periods for people in crisis when they ought to be receiving care at home or in the community, and certainly that people should not be deprived of their liberty when there is no need. And some units are beyond saving and should be closed (the unit where Stephanie Bincliffe died has been). But not all ATUs are bad and sometimes they deal with problems thrown up by badly-run supported living. Simply closing ATUs down will simply mean there is nowhere to go when someone has a crisis which is too difficult for their family to manage at home, much as closing mainstream adult or paediatric psychiatric beds and units means the same thing, and the upshot will be that more people are transferred to unsuitable units miles from home. We need to see money spent on making sure these people can live in their communities, with their families if possible and if they want, so that they can get out of ATUs and other inpatient units, and a major programme of training for medical and nursing staff, particularly in mental health (although it should be available to others, as they may have to treat autistic people as well), in autism and how to treat people with autism appropriately and effectively, so as to avoid further suffering and needless tragedies.

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  • Kara Chrome

    Thanks for putting a bit more nuance on my rant, Matthew.

    I wrote the song the day after the ‘post-Winterbourne question’ had been raised and discussed in some detail at the Parliamentary Accounts Committee, with the appalling lack of progress in nearly four years sharply castigated by the Chair, Margaret Hodge. But the whole matter was then remitted for 12-18 months, with no specific action mandated to ensure something actually happened in the meantime. Margaret Hodge did express the hope that the next time it came back it wouldn’t be such a dog’s breakfast (I paraphrase) but I was incensed that there should have been such glib, superficial consideration of appropriate provision for 3,000 people in ATUs (autistic or not). The often seriously inappropriate non-ATU long-stay facilities in far too many people with mental illnesses or learning disabilities find themselves dumped were not, as far as I can recall, even raised, even though they are obviously part of the problem.

    Of course the whole spread of provision needs looked at and reconfigured, which is why the song includes people who weren’t in ATUs and who weren’t autistic. And of course some people do need in-patient treatment, and there needs to be provision for that. I don’t think, though, that the current model of sparse, large institutions is appropriate; it may do wonders for the per-patient costs (although at £3,500+ per week, I beg leave to doubt it) but I would be very surprised if being whisked hundreds of miles from home is ever therapeutically positive. Treatment is needed locally, certainly no further away than the distance to one’s nearest general hospital. And it should be treatment, not containment.

    People who do not need treatment, but do need support or care should be provided for appropriately, not warehoused. And forensic facilities and methods should not be used for people who have not come through the criminal justice system.

    It would have been difficult to differentiate all the points without making the song opera-length. I only had a spare 45 minutes on a chilly February morning, so I’m very grateful to you for doing the precision and detail work now!

    All the best, Kara

  • Finola Moss

    Since when, did we have, an epidemic of learning disabled, and autistic, needing to be sectioned, or, deemed incapable, under the Mental Capacity Act, and deprived of their liberty, and often sanity for ever? Why is their behaviour, now suddenly in the last 10/15 years so bad ? Because, it pays to make it that way. And they are allowed to be treated very, very inhumanely, in fact, they are deemed insentient, by the MCA COP, to enable this. It is almost eugenics and the worst form of discrimination. LIFEWAYS, a Canadian Pension Fund, owns most of the supported living, euphemism, for asylum for life, in my area, usually in the poorer, cheaper parts. These peoples lives, and homes, as they are an audit assessment to be run as efficiently as possible , Bought and sold at will. They have loving families who have to live with the horror of their children’s lives, powerless. This is orchestrated big business, in the planning by governments, with money to researchers, charities, developers NHS to set up a system of residential homes, where all are removed to, by court order at 18 via COP. If their care, makes their behaviour worse, or, they do not like, the exact 24/7 surveillance routine, or, their itinerant worker regime, they are sent to, newly built Adult Treatment Units, where they are medicated even more, with medications, that permanently harm, and, cause psychiatric disorders, and physical problems they did not have. Meanwhile an army of lawyers, judges, experts, CQC, Social Care Managers, tick meaningless boxes, that serve only to protect themselves. Training/education/qualifications, to support this regime, is also big business. No one tries to find out, the cause of the ‘bad’ behaviour, or, even try to deal with it. And all are making a fortune ie £3,500- 4,500 and are unaccountable. So how can, or, would all this be changed ?