The report into the death of LB at Oxford’s STAT unit was harrowing reading. Even before the dreadful events of 4th July, there were horrid stories of restraint that have absolutely no place in care in 2014 (if ever!).
I’ve got some questions:
1) Something happens to our young autistic dudes around the age that LB was. Why do the professionals always give it a mental health label? For me, it is a developmental crisis and makes perfect sense in the context of autistic condition. For most autistic dudes, routine and predictability are the foundations of their life and then all of a sudden, you start to get wind of the fact that this all going to change. Everything you’ve known for the past 10/12 years is going to change overnight. I remember Steven getting horribly confused and anxious in his mid teens about what happens to all his friends who left school in the summer. We had one really upsetting night when he was convinced that they had all died. BUt when adult social care get involved for “transition”, a strange mental health filter starts to appear and a certainty that places like STAT will sort things out. Bollocks.
2) What is the purpose of assessment and treatment units? Is there any evidence that they do what they claim to do? Is there any evidence that they are a success? Most people I know who have been in one of these places, either stay there for ages or get moved on to another residential establishment, usually hundreds of miles from their families and friends. I’ve said it before but I think these places are just warehouses. They’re “we dont want to pay for a home support package” pen. And because these places exist, they have to be filled. I’m sure that was one of the reasons why Steven was moved to the Unit back in 2010. Its is a 4 bed warehouse and one of the guys was due to move out – they desperately needed another person to move in to keep the place going.
3) It probably follows on from question one but what is it with the prescribing of anti psychotic medication for our dudes? I’ll blog about it another day but Steven is now experiencing major health problems that I’m sure is down to the tablets he’s been on for the past seven years. In seven years of anti psychotics, his weight has doubled. His food intake had reduced considerably and he still does the same amount of exercise. Where is the evidence that this medication is really useful? And even if it is, does it outweight the side effects that will seriously affect the person’s health or quality of life.
4) Why are care plans so crap and inhuman? They tell us very little about the person they’re meant to be about.
5) Why are families considered the enemy as soon as our dudes move into adult social care? A lifetime of knowledge is instantly dismissed and the professionals invariably adopt a “we know best” position. The way in which Sara Ryan was sidelined and criticised by Southern Health is deplorable. I’ve told the story before but when Steven was the Unit, I didn’t even warrant being his next of kin on his “patient passport” – that went to his keyworker at the unit. Don’t they consider that by freezing families out, the person is actually being put at risk.
6) Why are there not criminal prosecutions in LB’s case and others we have heard about? Some of the people involved in Steven’s unlawful deprivation of liberty have received several promotions since the event. Where is the responsibility and accountability?
7) One thing that has struck me today has been the lack of comment by the big disability organisations. In 2010, I couldn’t get any help from any of them but following the court judgement, the rent a quotes went into overdrive. Are they frightened of upsetting their funders? Aren’t they meant to be on our side? Their silence today is inexcusable.
A great young man died. And a great young man’s family has been ripped apart. We owe it to LB and his family to do everything we can to turn the piss awful state of adult social care around.