Back in 2012, I published on this site a manifesto of sorts, calling for healthcare in the UK to be free of fear. Back then I was heavily involved in ME activism and three people with severe ME had died, notably the author and charity volunteer Emily Collingridge. These days my activism is mostly in the area of learning disability, but the same problems which provoked that article exist in this area too: where people need to go into hospital, neither they nor their family can be confident that they will not encounter prejudice against their condition, hard-set beliefs, abuse, neglect or isolation from their friends and family.
The readmission of Maisie Shaw, the young girl from Hull who was the focus of a campaign to re-open an adolescent unit in Hull earlier this year, who was suddenly released in June, to a hospital in Manchester last week (there are press reports, but I’m not linking them as they give details of precisely what led up to this, which I don’t think should be in the public domain) reminded me of those ideas, as I was immediately apprehensive: would she be bullied? Would she end up there much longer than expected, as has happened to other young people? Two of my friends have been suffering mental health crises in the past couple of weeks and I have had the same fears for them (one of them more than the other).
Today is also the third anniversary of the death of Nico Reed, a young man with severe physical disabilities who died in a supported living ‘home’ run by the NHS trust, Southern Health, which also ran the hospital unit where Connor Sparrowhawk died in 2013. Nico was prone to vomiting at night, and choked to death in bed; he died because he was not checked on in good time (although the physiotherapy which had kept this in check while he was at boarding school had also been discontinued; the inquest did not cast its net as widely as this). When Nico’s mother first told her story last year, she said that when Nico’s therapies stopped and his swallowing and choking problems returned, he became “thin, depressed and frightened”. Professionals were warning that Nico’s life was in danger; one physiotherapist even visited Nico in her own time to perform the therapies he needed, because she was so concerned about his welfare.
Nico’s mother has posted a week of blog entries leading up to the anniversary; today’s features a video in which she talks about how she was treated by the NHS trust after Nico’s death.
When I was involved in ME activism, the Syrian civil war was just starting, and hospitals in Syria were known stamping grounds for the country’s secret police; if you were a dissident, you might not survive an admission to hospital. In this country, along with many an advanced democracy, it is not your political views but a poorly-understood condition or behaviour the staff find challenging (whether it really comes under the category of “challenging behaviour” or not) are what could turn a hospital from a safe place to a frightening and dangerous one. This is because of attitudes among some professionals, and their power and lack of accountability. All these things must change if hospitals are to become genuinely safe places for people with chronic and mental health conditions, places where one need not fear that those who are meant to help you might become your enemy or your tormentor.
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