Yesterday the inquest was held into the death of Stephanie Bincliffe. Stephanie was a 25 year old autistic woman who for seven years had been detained under the Mental health Act in an assessment and treatment unit run by the Huntercombe Group. For years, Stephanie had been held in a padded room with no fresh air or access to any form of exercise. Her weight had increased by 10 stone to 26 stone during her time in the Unit and she died of heart failure & sleep apnoea, both, the coroner decided as a result of her obesity.
The coroner was quite critical of the Unit for its lack of a treatment plan (!!) but at the same time ruled out neglect on the part of the care providers but also said that because of Stephanie’s challenging behaviour, any treatment plan to tackle the obesity would have been very difficult to implement.
Stephanie wasn’t neglected?
Read the press release and the heart-breaking statements from Stephanie’s family and then think again about your definition of “neglect” – http://www.challengingbehaviour.org.uk/cbf-articles/latest-news/death-of-a-young-woman-with-a.html
As usual, in these sort of inquiries there is no mention of the commissioners who sent Stephanie to her doom. They shelled out £12k a week for the “assessment & treatment” and have now got off scott free as nobody seems to be asking questions about their commissioning decisions.
At the same time, nobody seems to be asking questions about how Stephanie’s weight managed to increase so dangerously. The Unit management talked about having to balance any weight control programme versus Stephanie’s tendency to self harm around unmet food demands. What they fail to mention, and I realise I’m guessing here, is the impact a major drug programme has on someone’s weight. Once again, I’m guessing, but I bet that in order to deal with Stephanie’s “challenging behaviour”, she would have been on some serious medication. But that doesn’t warrant a mention.
And as so happens all the time, nobody is asking the question – “what the bloody hell was Stephanie doing there in the first place?” Even if someone truly believed that she needed medical intervention at some stage, seven years later, why wasn’t somebody reviewing whether the intervention she was getting was working. The trouble when someone enters an ATU is that these questions aren’t asked. The person is lost. They are forgotten. They become a cost figure in the commissioning body’s monthly outgoings.
Yesterday, I had my first overnight stay in my new flat. Shortly after arriving, I took a phone call from the producer of a radio programme. The inquest verdict hadn’t been announced at this point but he was planning to devote a large chunk of his 6 o’clock programme to Stephanie’s case. He admitted that the production team were working on the assumption that the verdict would be pretty damming and he had lined up Mencap to contribute to a discussion of the case. he wanted me in on the discussion because of Steven’s experience of an ATU. I was uneasy because Steven’s experience was nothing like Stephanie’s but I thought it might be useful to get a parent’s perspective to the wider question of Assessment & Treatment units. I agreed to be interviewed live during the programme.
At 5.55, he called me back and told me that, following the verdict, they had decided not to run the story. The verdict wasn’t particularly critical of the Unit or the “treatment”, so there wasn’t really a story. I was fucking furious – “That is your bloody story then” I despaired.
But no. Despite the thousands of questions to be asked about this case, the fact that Stephanie’s death was seen as inevitable, there became no story to tell.
And that is why Stephanie was taken to an ATU seven years ago. That is why she was allowed to be kept in a locked padded room for seven years. That is why she died.
Because there was no story. Nobody was interested. Nobody making the decisions cared.
This afternoon, I read a rather alarming article in Community Care magazine. The link to the full article is here: http://www.communitycare.co.uk/2014/11/19/personal-assistants-risk-abuse-poor-support/
The headline is: “Personal assistants at risk of abuse because of poor support” and goes on to discuss the “vulnerability” of a PA on the basis of their isolation at working in their client’s home. Here is a typical quote from the article to give you a flavour of the author’s position – “Their close working relationship with their employer also meant professional boundaries could get blurred, leaving both sides more vulnerable to abuse. PAs face unique risks and challenges associated with their isolation and vulnerability, working often in people’s own homes.”
It made me wonder what the author would have made of the week I’ve just had.
All the furniture for my new flat was meant to be delivered on Wednesday. The shop gave me a very wide delivery space of between 7am and 6pm. I would have been very hard pushed to get Steven sorted and at the flat by 7am. One of the support workers finishes his Tuesday shift at 6pm and starts a Wednesday shift at 6am. On Tuesday lunchtime, he nabbed me in the kitchen and asked me whether I wanted him to stay overnight on Tuesday – “you can slip away before Steven gets up tomorrow. I’ll take charge of bath, breakfast and Mr Bean”. What an offer, which I accepted.
Before he was leaving last weekend, the Saturday worker asked me whether I needed his help with the move. He volunteered to come in on Wednesday and help with whatever needed to be done. I remembered from our move to Steven’s house last year what a dab hand he is with an electric screwdriver and took him up on his offer. I got to the flat by 6.30am and he arrived about 8am. It was 11am before the first delivery came and we spent a lovely couple of hours chatting about stuff and nonsense. Looking out of the window across the river, he told me several stories about the men back home in Nigeria who worked on water. I found it enlightening and moving. Perhaps, someone with different eyes may have seen a blurring of professional boundaries. I saw it as two human beings sharing precious stories.
This great support carried on throughout the week. Since we moved into Steven’s house, my books and DVDs have been stored away in the fitted wardrobe in my bedroom. Now I have my own space, I thought it was about time they saw the light of day. One of the other PAs asked me weeks ago what I planned to do with my collections and he offered to come in at a time Steven was out and help me move them to the flat. That scores points for me on several levels, especially that he knew Steven might be a bit spooked by me carrying some of my belongings out of the house. Although, I don’t think Steven even knew they were in the wardrobe, he would have noticed us carrying four large packing boxes down the stairs! And if that wasn’t enough, he stayed on afterwards and helped me assemble the bookshelves.
Whenever any of the PAs offer to do something that I might consider above and beyond the call of duty, they always say the same thing – “If you’re okay, then Steven is okay”. They make a big deal about me having a “rest” and are forever shovelling me up to my bedroom for a lie down. They know that Steven’s time with me is very intense -his conversation is on the go from morning to night. All of them, at one time or another has talked to me about their values and the importance they put on family. This attitude couldn’t be more different from the staff at the Unit in 2010. I couldn’t speak to any of them. They weren’t interested in anything I had to say. I always felt like a massive interference to the rigid running of their home. And, of course, they consistently held the “we know best” view. I believe that what makes the relationship with the current PAs work as well as it does is the mutual respect. Working in someone’s home is very different to working in a home. I’m not saying that you become part of the family but it engenders a very unique, close relationship. I guess the author of the report and the social care world in general is very threatened by that concept.
Boundaries have been on my mind a lot this week because I will be using the second bedroom in the flat as my counselling room. For the first time in my 16 year career, my clients will be coming into my home. I’ve had so many people issue warnings about this and announce that for them it would be a complete no-no. I don’t really share that foreboding. My relationship with my clients changed a lot in 2011. For years, I had been this fairly anonymous figure that they met once a week and then all of a sudden, after our court case, I was appearing on the front page on the national newspapers and the BBC. Since then, I sometimes get asked about Steven and occasionally get a bit of a ribbing along the lines of “Are you appearing in Hello magazine this week?” At the time, and since, I have checked out with my clients how they feel about this and the response has always been positive. It’s leavened out the power dynamic for the advantage of the clients. I was trained as a person centred counsellor and I like the idea of person centred care. But I think the people who hold the power in both professions are threatened by the model. It means letting go of the expert role and accepting that the person you are dealing with knows themselves better than anyone. A massive challenge. The people using the service become more important than the people providing the service.
Anyway, back to the PAs. Of course, I paid them for the extra work they did this week. And out of my pocket, as they were helping me, not from the personal budget. I don’t believe for one moment that money was the driver for their offers. They did it because they recognise and respect the unit that is a family. I don’t think that is making them vulnerable or crossing boundaries. I call that being human.