Start of 107 days for LB

Black and white picture of Connor Sparrowhawk, a young white man with dark, tousled hair with a T-shirt with four cartoon figures on it. He has a wide smile on his face.This is the anniversary of Connor Sparrowhawk going into the Slade House learning disability unit in Oxford, where he died 107 days later, in the bath, as a result of staff negligence. His supporters have organised a 107-day campaign of action for him, and Mark Neary has started a blog of 107 days of stories about his own son, Steven, when he was being held in a residential unit in 2010. I don’t have the time to blog every day for 107 days on this or any other subject, but I am going to offer a few thoughts here, in light of this and of recent media appearances by Sara Ryan (his mother) and the NHS trust involved, Southern Health. (I’ve written two entries about this subject recently. here and here.)

As long-time readers will know, I was in a special school as a teenager, because of behavioural problems (probably stemming from acute thyroid deficiency in infancy) since diagnosed as Asperger’s syndrome. Because the school dealt with boys with a variety of behavioural problems (basically, anyone deemed academically able but who normal schools declined to accept), and because the school hired completely unsuitable staff (because of a culture that really the boys did not need specialist care but simply a “bit of discipline”), the school was at times a hotbed of abuse (some of it from the staff) and was a particularly hostile and frightening environment for smaller boys. Kesgrave Hall, along with many other places like it, is now closed, in large part because such schools went out of fashion (the early 90s recession helped, though) along with the large-scale use of boarding for children with just about any disability. However, the lack of support means that many older children and young adults with more severe forms of autism and other learning disabilities end up in unsuitable residential care for years.

Schools like Kesgrave were expensive, despite the miserable care (and often mediocre education) they provided; the crisis care that seems to be the only show in town for some people with severe learning disabilities today is too. In the case of Steven Neary, according to his father, “the judge remarked about the lack of assessment when Steven was first taken there and there didn’t appear to be any treatment taking place. The unit appeared to me to be a holding container. And a very expensive holding container at that”. In the case of Claire Dyer, which I reported on in January, it is only recently that the staff have worked out that they need to engage her in suitable activities to make sure she remains calm, although she remains under section and her family still provide most of her activities. The family are hoping to find a suitable long-term residential care placement for her.

I have long believed that the reason our mental health and disability health care are so poor in this country is not only because of prejudice but because of our attitude to money. The drive from mass institutional care to home-based or community-based care was driven as much by a desire to save money as by a wave of progressive thinking. The fact that property values were creeping up also gave an impetus to close large institutions, because these grand buildings with spacious grounds were perfect for converting into luxury flats, especially in the south of England (the same impetus that drives the sale of buildings used for disability services, and even fire stations, today). Now, the government is cutting into the money that was set aside so that people who would formerly have been institutionalised can live in their homes, or with their families, with a degree of independence, but learning disability and mental health care have faced particular cuts because they are not seen as “critical” and have no glamour. The popular press gets agitated over mental health when it’s about the likes of Christopher Clunis stabbing someone; providing clean and safe care for people with chronic mental health problems when they have a flare-up is not such a priority. Day activities for people with learning disabilities are seen as a luxury that can be sacrificed in “hard times”, and again, those buildings will sell for six- or seven-figure sums.

We must get over this obsession with penny-pinching, this fixation with the price of things rather than their value. If we want a civilised country rather than one where it’s every man for himself (and every woman and child too, although they’ll tend to come off worse), we have to pay, much as is the case if we want our bins emptied, our streets cleaned and our roads repaired. It’s no use being outraged every time someone dies of neglect in an NHS unit or is killed by their stressed-out sole carer: the support has to be there, and we need to do research so as to make it more effective, and that will cost money too. This attitude did not start with the coalition’s austerity measures; it was already in place under New Labour, which repeatedly pandered to the corporate press and tried to impress people that it was not a “tax and spend” party. Austerity fed off attitudes that were already there. And it is depressing that Labour have pledged commitment to maintain austerity and not to reverse the Tories’ welfare cuts despite there never having been a popular mandate for them. If we want an end to neglected pockets of bad care in the NHS, we have to pay.

Also this past week, there has been a review of the Deprivation of Liberty safeguards used to protect people with learning disabilities from being deprived of their right to liberty, as well as an important Supreme Court ruling that three people (two in Surrey, one in Cheshire) held with different degrees of security were subject to deprivation of liberty and their conditions were subject to the 2005 Mental Capacity Act and “living arrangements subjected to regular independent checks”, according to the Daily Telegraph’s report. One of the major problems with the implementation of the current safeguards is that people are often held against their or their former carers’ will (or both) and prevented from leaving, but with no legal deprivation of liberty authorisation, and have no access to an advocate because they have to be appointed by the same council that is holding them (see Mark Neary’s blog for more on this issue).

Picture of Claire Dyer, a young white woman wearing a black and red striped jumper with headphones on (to cancel out noise). She has purple Pizza Hut balloons above her head and the strings are in front of her.The use of the Mental Health Act to control the challenging behaviour of those with learning disabilities should also be reviewed, as it gives clinicians too much power, including the power to transfer someone against their will, as was feared would happen to Claire Dyer. It also allows them to forcibly medicate, when the behaviour in question could also be managed or ameliorated by changing the disabled person’s situation, or removing threats to their living conditions (like possible involuntary transfers). These drugs have severe side effects, including weight gain, which besides its medical complications, may lead to someone’s challenging behaviour being seen as more challenging, and meriting a more brutal response, particularly in a male and/or black service user. An entirely new framework for managing such situations should be introduced.

Reading today’s media coverage (see the Guardian piece here and an associated blog here), it is heartening to see that the trust, Southern Health, have finally suspended three members of staff over Connor’s death. Katrina Percy, the CEO of Southern Health, has otherwise responded with her characteristic spin and PR clichés. In her interview with Saba Salman, she said that “what we need is a culture where people are able to be open when things don’t go as well as they possibly could”; the lack of openness became apparent after someone died, while as pointed out in the discussions of this on Twitter, this phrase is typically used to mean someone being late or not quite properly dressed for the job. Percy also invited the family to meet her “so they actually see what [she’s] like as an individual and as a chief executive”. Really … what she’s like as a person is irrelevant. You get child abusers and war criminals who appear quite personable when not abusing children or wielding a machete or machine gun. It is quite clear that she is more interested in justifying her position and protecting the organisation than in facing up to the catastrophic failings that have happened under her.

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