Big hospital or small unit, bad care is bad care

Matthew Garrett with his parents either side of him; his mother is holding a dogOn Wednesday night, Channel 4 aired a Dispatches special, Under Lock and Key, which exposed the abuse and neglect of patients at St Andrew’s hospital in Northampton, an enormous campus which started out as a Victorian asylum and now functions as a charity, though drawing most of its income from NHS contracts. The programme interviewed the families of three people who had spent time in St Andrew’s along with two young former patients, now happily in supported living; the third had died of untreated complications of an anti-psychotic drug he had been prescribed, one of four people to die of similar causes within seven months in that ward. The programme did not have access to the hospital itself, which has only issued a bland statement (Google cachéd version, as they have since made it private) denying but not addressing the accusations made, and relied on the word of the families, some recordings of family visits and video calls, an MP who had helped one of the families, and a few words from the former patients themselves, Matthew (right) and Fauzia. (You can see the programme, if you are in the UK, at the link above for the next month or so. More: Bureau of Investigative Journalism, Leo Andrade @ the Guardian)

St Andrew’s, whose grand façade, as Mark Neary observes, closely resembles that of a Victorian workhouse (and whose vast new extension, with its tiny, high-walled courtyard gardens, looks no less institutional), has had a bad reputation in the world of learning disability and autism care for a long time. This has much to do with its practice of accepting patients from hundreds of miles away, supposedly because no suitable inpatient care is available anywhere nearer; this includes the entire south of England, including London (a legacy of decades of closures and sell-offs of hospitals). When Claire Dyer was first sectioned in 2013, the first place the management of the unit she was living in at the time tried to move her to was this, which was 185 miles away from her home in Swansea (they eventually moved her to a smaller unit in Sussex, which was even further away, although that unit discharged her three months later). I know relatives of other former patients and they tell me the same as Matthew’s and Fauzia’s did: that their relatives’ needs were not addressed, but rather they were sedated, and on occasions when they saw them, they were often filthy and smelly, could not talk coherently when they previously could, and were half asleep. The hospital (or at least the wards they were on) were not attuned to the needs of autistic people, despite the claims; they relied on punishment, segregation and sedation to force compliance. Patients’ views as expressed online include tales of short staffing and personal property that had got damaged. For all their pleading that Channel 4’s material was biased or taken out of context, it is consistent with what I have learned from former patients’ families.

The family of Bill Johnson said that when their son, who suffered from schizophrenia and who had a brain injury from birth, was admitted, the care was excellent, but the attitude of the staff had changed; families were treated as a burden and told to be grateful for the ‘privilege’ of being able to visit their relative, and ceased to be allowed onto wards to visit. This has been reported by families of many other people who have been held on mental health wards, including adolescents and those with learning disabilities. As many such institutions refuse to allow any recording equipment, this policy makes abuse much more difficult to detect. In Bill’s case, the side effects of his medication were making him so ill he felt he would die, bidding farewell to his father as if he would never see him again, which proved to be correct. The hospital broke the news on the phone without any display of sympathy, the woman saying simply “Bill is dead”.

The programme followed the family of Matthew Garnett, a teenager with learning disabilities and autism, who had been admitted to another secure hospital in Woking, Surrey, after his behaviour became more violent as he entered his teens. They had then fought to get him admitted to St Andrew’s, believing it to be a hospital that could offer specialist care. When he was admitted, however, the family quickly became very concerned that he was regressing, and in contrast to his becoming obese in the previous hospital, he became underweight at St Andrew’s. When trying to talk to him using Skype, they heard screaming in the background and Matthew could not talk coherently. His mother, Isabelle, complained that staff would not even talk of planning discharge, let alone setting a date, but when a care provider was found, the responsible clinician’s tone changed, saying something like “well, have him then”. Matthew had signed the minutes, despite not having been there and probably not being able to understand them anyway.

Fauzia Hussain, a young south Asian woman wearing sunglasses. Her arms (mostly out of shot) are raised into the air.Matthew and Fauzia are currently in homes run by the same organisation, Alderwood, which is based in Northamptonshire and specialises in autism care. Fauzia had spent 22 months in St Andrew’s and spent much of that time secluded, having contact with other patients only when they were also secluded. She was almost never allowed out in the grounds, let alone off them, yet within 24 hours of release, was in the park with her new carers, and began to take oral medication without difficulty; she had been receiving injections during her time in St Andrew’s. Talking about her time in St Andrew’s obviously upset her; she said that since being released, her “steps had got bigger”. Both demonstrated that they were capable of living in the community with the right support and had not needed to be restrained or isolated since leaving.

It has been observed that all the stereotypes of autistic behaviour (lack of empathy, rigidity of thinking, fixation on rules and routines, etc) are displayed by the school system. The same is even more true of these hospitals, which are also noisy and busy places unsuitable for someone who needs calm and quiet. It was observed that St Andrew’s had undergone a huge expansion at a time when hospitals should be contracting to allow for people with learning disabilities who cannot live with their families to be supported to live in the community. St Andrew’s uses this as an excuse in their public statement, accusing the programme of distorting material or taking it out of context, but it is a wealthy charity (it paid its chief executive nearly £500K last year, including a £99K bonus) yet does not use its wealth to pay for bespoke or small-group homes for the people they institutionalise hundreds of miles from their homes.

It’s been more than five and a half years since the abuse at Winterbourne View was exposed in a BBC Panorama programme, which went undercover and filmed the violent abuse of two young people with learning disabilities. One of them, Simone Blake, had to be moved to a unit in Norfolk after Winterbourne closed and was only returned to her home area this year. Winterbourne was not a big, impersonal hospital but a small unit (albeit one run by a large private company that had units and ‘homes’ all over the country). Besides the fact that, as Sally Gimson notes in the latest New Statesman (not online yet), hospitals just are not the place to care for anyone in the long term, whether they be people with learning disabilities, dementia, chronic physical illness or anything else, the size of an institution is not what makes it good or bad; good care can be provided a long way from home, although good care nearby is infinitely better.

The problem — much as with the abuse of children in care which went unacknowledged for so many years, until the victims were old and the abusers dead — is lack of care; the fact that some people’s lives are deemed to be worth less than others’, and the fact that learning disability care lacks the glamour and media-friendliness of, say, cancer treatment, making it a lesser priority for funding. We need inpatient mental health care available in every area, so that nobody has to go to the other end of the country if they fall ill or enter a crisis, and as mental health staff are the ones who look after autistic people in crisis, they must all have understanding of the condition, and of what works and what does not, and what is harmful. Some of these things were promised after the Winterbourne exposé, but thousands of men and women remain stuck in hospital units. The money is there; we need to stop it being diverted into rotten institutions like St Andrew’s.

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