Updated 5th February
Yesterday I learned that a young man with both autism and Down’s syndrome whose family were fighting to get him out of a ‘specialist’ hospital back to his family in Bradford had died in hospital following a heart attack on Monday in the unit in Sheffield which caused massive swelling of the brain, lungs and liver. It was initially thought that he was ‘clinically gone’ as a friend put it on Monday morning, but another doctor gave a second opinion and took him to ITU, but on Tuesday it was reported that he would not make it; his life support was turned off yesterday. The young man’s name was Thomas Rawnsley, and was the subject of various news reports in 2013 and 2014 as his mother tried to stop the authorities moving him from his home area in Bradford to a hospital in Peterborough. As it is, he was given a deprivation of liberty authorisation and transferred to Sheffield last year, after having initially being promised a bespoke living placement in his local area. (More: Zoe Thompson, Same Difference, Mark Neary.)
Thomas Rawnsley had been living in a bungalow in a supported living facility, until October 2013 when he was transferred to an ATU under section because staff claimed that his “mistrust of staff” was a threat to them. He had been abused by staff at the bungalow, one of whom received a suspended sentence in February 2014 for the abuse. In the ATU he was given high doses of anti-psychotics, and when his mother Paula visited she said:
He can’t eat, he can’t talk – he just dribbles. He’s been turned into a junkie; he’s addicted to his anti-psychotic drugs because he’s kept on the maximum dose to make it easier for them to cope. It breaks my heart. He sits naked in a corridor just wrapped in a quilt. He has no modesty or dignity in there. He is my beautiful, beautiful little boy. When I ask the unit why he’s left naked like that they tell me it’s what he wants. I ask them lots of questions, I don’t get real answers. I think they see me as a trouble-maker but I’m not, I’m Thomas’s mum.
The plan to send him to Peterborough was blocked and an independent panel recommended that he be provided with his own flat with support staff, but this fell through last June because Bradford’s District Care Trust could not provide the care package Thomas needed, and as a result he was sent to a new hospital in Sheffield where for a while he was the only patient (it was even threatened that the hospital would have to close if Thomas was not sent there — as if that is any reason to send a vulnerable person anywhere). His mother was never happy with the care he received there, and last Christmas they initially agreed for him to go home for Christmas then withrdrew permission on the grounds that he would not want to return and his subsequent behaviour would be difficult; however, they did eventually agree to his going home, perhaps after realising that Thomas already knew about his trip home and that someone would have to tell Thomas that he would not be able to go home.
Last weekend when his family visited, they noticed ‘unexplained injuries’ including carpet burns, and he was “struggling with a chest infection that they knew was serious” as their friend and advocate Liz Wilson wrote on her blog yesterday; he was known to be prone to these infections. He collapsed on Sunday night and was given CPR; on Monday morning it was though that he would not make it, but was taken to ITU after another doctor gave a second opinion, although his chances are still slim. His mother spend last night in a hotel room as she was not allowed to stay with him in ITU.
I am not sure if his heart attack was caused by abuse at the unit, his medication or just his underlying condition, but even if the latter is true, if the last nine months would always have been his last, he could and should have been allowed to spend them in a place where he was free of neglect and abuse, with his family or with easy access to them. In the current political climate, this is apparently a ‘luxury’ denied to many disabled people who are in frail health and have limited time left. Last week a disability activist I followed on Twitter, Lucy Glennon (left), died; she had written a number of articles about her condition (epidermolysis bullosa or EB) and her struggle to get support and accommodation (see this article) while her health was deteriorating, in the Guardian and on their website. As Kaliya Franklin put it in her tribute yesterday, “that fear and anxiety [caused by having to find a new home quickly and other disruption to her benefits] ruined a whole year for her, a year just as she was becoming ever more frail, a year she didn’t have spare to be spoiled”.
Three of Paula’s friends have set up a fund to be used for costs that are likely to come out of this, such as legal and travel costs, which can be found here. They have set a target of £5,000 (of which £545 has been raised so far), although if an inquest is required the costs are likely to be much higher.
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