No Neglect

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” –

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.

23 thoughts on “No Neglect”

  1. Like you, I am left with the feeling that nobody(in the wider world) cares, nobody gets it. Pre-inquest, there was a story in the Daily Mail, and some of the comments were appalling – because so much of the detail is missing. ” Where was her family?” Shut out and ignored. “She was sectioned..dangerous, must have been!” How has it happened that autism, LD, can be represented as a “mental health” issue, without anybody understanding what meltdowns are caused by extreme distress, and extreme distress is the consequence of treatment not the reason for it?

    How can this not be “a story”? I don;t really understand what a “narrative verdict” is, but I do know that narratives are shaped by what is included and what is left out. This looks like another instance where the “official” account of what happened was simply accepted unchallenged.

    Too awful, and so wrong.

  2. But today with Norman Lsmb and NHS England Lyyne with me at her side will be telling the story if her son whose incarcerated at the same cost. On Monday I’m going to a funeral of a young man age 27, butchered in A and E because he was considered a lesser person. No fucking point and stories! Oh for Christs sake what has to happen!?

  3. There is a point and somehow we have to go on making it. This country is a tough and nasty place right now with a skewed set of values, but there are still good people in it, who are able to understand that these are young people deserving of their interest and compassion. We know that it is possible for these young people to have lives of value, love and dignity, and that they should not be shut away and written off like this. Somehow, we just have to keep on saying it, and fighting for it. That can never be pointless.

  4. You have put your finger on the central issue here-where were the reviews? I can accept that someonebody’s behavior can be terribly difficult to manage and that if poor Stephanie self harmed when not given various sorts of food it would be difficult to keep her safe and look after her longer term health. I can accept that such a difficult set of problems may well need expert input and assessment, BUT, seven years?? It went on for seven years? You would expect reviews weekly, monthly, and at each and every review her treatment/management would need to be justified. This was really all that could be done? This was really the only way to keep her safe? There was really nothing else to try? OK then, lets see the clinical reasoning behind this.

  5. No one asks once these questions once care is commissioned; once the fat care cost is agreed and contract signed. No one monitors? Witness Winterbourne etc etc? And staff and families who raise issues are silenced and/or not heard, witness Winterbourne?.
    Who should do the monitoring? Contracts are monitored by commissioners annually, for cost and contract only. Many care managers are on short term contracts and are worked off their feet doing re- assessments to cut costs.

    Social workers? What social workers? Where was the CQC?

    1. PS
      I heard a broadcast this morning while still half awake, it was an appeal for support and help for disabled people who are abandoned/without health care and or support and who have lives of acute unhappiness. I listened to it all, and thought this was about the UK, for all the descriptions seemed to fit UK. At the end I learned it was an appeal for help for Malawi .

  6. My LAs commissioning was querying the costs (£2400 a wek) of Martin’s care 2 years ago, and it was all recorded in Reviews. Since then nothing. Martin’s brother’s and my continual protests are ignored.

  7. Lizzie has stated it beautifully: “meltdowns are caused by extreme distress, and extreme distress is the consequence of treatment not the reason for.” This needs to be said over and over again until it becomes the first thing anyone anyone in a professional capacity thinks of when they are faced with behaviour that they find difficult to understand or empathise with.

  8. My own dealings with mental health services has made me loose fath in the entire profession. I’m actually in the process of writing to the ombudsmen as a process before actually looking at taking the trust to court over breach of duty law with the help of MIND where. Have a legal caseworker partly funded by legal aid. How the ombudsman responds will determine how far I take this. Given the general Victorian practice and views regarding mental health I fully expect to need to take my case to court.

  9. I’m horrified and so terribly sad 😦 R.I.P. Stephanie xxx – no-one, but no-one deserves to die like you did, and someone needs to be hauled up for manslaughter for this.

  10. There was a letter in the Guardian from a group of ABA practitioners suggesting that Stephanie’s problems might have been all sorted out if only a practitioner using their approach had been engaged. I found this simplistic and offensive, not to mention potentially hurtful for her parents. (“If only we’d been hired”). Whatever you think of the approach,it was so opportunistic for them to put in a bit of advertising.I don’t think any practitioners of any clinical discipline of approach can say anything about what would have helped without Stephanie’s case being carefully reviewed.

    If she was in such a terrible state, whatever they were trying was not even containing the situation. Somebody who self harms and has ASD can be very difficult to help, nobody expected them to produce a magic cure, just well considered and reviewed treatment with Stephanie’s parents involved in how things were going, what the plan was and what would happen next.

  11. No one is responsible. That is the reason.

    Psychiatrist can be a god and no one dare ask questions, and those that do leave or just go on doing, and see less and less and become less and less in the process.

    Every link in the care and humanity chain has been loosened and chipped out. Same people who in the past were paid lots leading the jobs called ‘social care’ are now paid lots more and have MBA’s and big offices, and have accountants where once they had social workers and long tenure care assistants. Flawed like all of us are, but then many were good people who really did care and who fought with passion for their vulnerable charges..

    Cost of everything value of nothing. Now.

    In the bad old days when we social workers were often seen as ‘soft cops’ we could also be ferrets where our vulnerable clients were concerned. I visited the approved schools where terrified vulnerable early teenagers with learning disabilities, were put on the ‘bed wetting’ corridor, and had a hideously awful time. I got agreement (not easy) to take the notices down wherever I went. When they went back up I had them taken down again …and again. Very small thing.

    Today that corridor would still have it’s sign up….but with a private brand on it.

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