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People As Packages

August 4, 2014

A lot has been written over the past couple of days about the court’s decision to agree to Swansea Health Board’s plan to move Claire Dyer to a unit in Brighton. It is desperately sad reading. The family’s posts on Facebook are heartbreaking – a family truly torn apart.

I wanted to write this post for two reasons. Firstly, to support the Dyer family. And secondly, to challenge some of the many things that are wrong about this case. So much of what I’ve read is scarily deja-vu. Its almost like Swansea used Neary vs Hillingdon as their template to get its own way. Except for one big difference:

Claire was being held in Swansea and continues to be since the move under the Mental Health Act. Little, if any, reference is made by the professionals to her autism. The treating psychiatrist prefers the diagnosis of a personality disorder (She should be struck off for that alone). If Claire came under the Mental Capacity Act, she would most certainly have come under a DOL. That would have given the family access to challenge the events, to which they have been denied. I remember asking on Twitter a while back if the MHA trumps the MCA. It seems like it does. And what a get out for all those LAs & Health Boards who don’t want their actions scrutinized by the Court of Protection.

The head of the health board made a wittering statement about the “lack of suitable services locally”. Firstly, he should be ashamed to his core if that is really the case. It should be noted that the unit in Brighton where Claire has ended up is not a specialist service for autism or learning disabilities. Most of its residents? have arrived there through the criminal justice system. The Head needs challenging as to why there is nothing locally – it’s his sodding job to provide them. I don’t believe that Claire needs a specialist unit – she needs a decent home, with decent support, so she can live her own life in her own community. She has made that perfectly clear herself. And if that can’t be achieved, we are looking at a national scandal here.

To win their case, the health board used disgraceful tactics. They used that vile old chestnut that Hillingdon also threw at me – the family ” under report” incidents of challenging behavior (were they asked to report them?). In our case Justice Jackson gave that very short shrift but it seems, in Claire’s case, that the health board’s “belief” weighed against her. Have I gone mad? What about evidence? What about supporting facts? A vulnerable person is moved 250 miles away because someone holds “belief”. It beggars belief.

Claire was moved on Friday whilst her family were still making their way back from the court hearing in London. There was no time for goodbyes. Claire’s grandparents are elderly and not in the best health, so may not be able to visit Brighton. The family weren’t allowed to visit at the weekend because the psychiatrist who decides visiting rights had gone home early for the weekend. Upon arrival at the unit, Claire’s IPad was confiscated, restricting further, any possibility of contact with the outside world. Within minutes, the institutionalism had started. And in this alien, frightening environment, a process of indeterminate assessment and treatment will take place. Where undoubtedly, the fear and anxiety that Claire will be experiencing will be used as justification for the placement.

Claire doesn’t need assessment. She needs a home with support. She doesn’t need treatment. She needs to go and watch her beloved Swansea kick off their football season next week.

Unfortunately as we have learned over and over again, learning disabled people aren’t human. They are unemotional, unconnected packages to be transported around the country. They are cash cows for a whole squadron of interested parties. Except, they are not the slightest bit interested in Claire, the human being.

Update (5.8.14)

Since writing this piece, I have been contacted by four people, each questioning the family’s “version” of events. I wont comment on that, suffice to say that when Steven was kept away, I had many people telling me that I was only telling a one sided story. As I used to say back then, my story is my reality, even though I’m sure it differed greatly from Hillingdon’s reality. Regardless of the comments, I still stick by my post as it feels totally unacceptable to me that someone can be taken from their family and moved so far away. And I don’t believe it is acceptable for a head of services to dismiss the move on the grounds that no appropriate services are available locally.

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From → Social Care

29 Comments
  1. If her ipad was taken away from her that sounds like theft to me – perhaps the police should be called?

  2. Shirley Buckley permalink

    You should see the judgments (which I can now publish) inMartin,s case. Pages of arguments MCA, MHA, and anyway we can always come back to the old inherent jurisdiction! The doctors ruled that Martin was not sectionable 3 times, and the Judge over ruled them. I,ll bring the original judgments out in the next week or two.

  3. Reblogged this on Solving this Puzzle Together and commented:
    My heart goes out to Clare and her family. Shame on the British justice system.

  4. Jayne knight permalink

    They were offered an alternative
    The health board had presentations
    They wrote to say thank you they were finding a local provider
    They lied therefore and also said the housing provider didn’t respond
    That just makes it really suck to me

  5. I’m not with you Jayne. Who were offered an alternative? Who lied?

  6. LiT permalink

    Do anyone have a link to the court transcript? Or is this based on the family’s interpretation of events?

    • From what I understand the judgement wont be published. One man’s interpretation is another man’s reality.

      • Shirley Buckley permalink

        Mark I have transcripts of all Martin,s judgments see above.

      • I was replying to LiT’s comment Shirley

      • LiT permalink

        Its all rather unaccountable then.

        I would suggest adding something to your proposed #LBBill – cases and judgements should be in the public domain with only the family protected if they request it. Without scrutiny of decision-making and the arguments of ‘professionals’ being made available, a lot of behaviour will continue to slip under the radar.

        Without being able to see that transcript, the context of how “Personality Disorder” and “Autism” were used here is very difficult to ascertain as both terms have a wide spectrum. They shouldn’t just be treated as binary opposites as there can be interplay.

        However this: “Claire was moved on Friday whilst her family were still making their way back from the court hearing in London” – the term ‘extraordinary rendition’ springs to mind. I have sympathy for complexity but none for inhumane behaviour.

      • LiT – One of the big disagreements in this case from the beginning, which Claire’s mother has regularly written about, has been the diagnosis. As Ive just written in my update, regardless of diagnosis, I still feel it is unacceptable to move someone so far away from their family. And then assess their behaviour in this new environment. That seems to me to put the person being assessed as firmly on the back foot.

  7. carly permalink

    I would be questioning the treating psychiatrist and their knowledge because their is different diagnostic criteria for personality disorder as compared to autism or learning disabilities so I would question her capacity to be treating her with the lack of knowledge and would request a second opinion as if their saying personality disorder now what about the original diagnosis of autism then, seems like this psychiatrist wants to rule out all existing diagnosis to slap a personality disorder one on just to get the section, totally wrong I would question her validity as all psychiatrists should know the difference in diagnostic criteria and if not then she shouldn’t have given the diagnosis.

  8. LiT permalink

    A link to those writings by Claire’s mother would be helpful.

    On a general level, I have concerns about how this is being discussed because its not simple. Autism is NOT a mental health disorder but those that have autism are more likely to suffer mental health issues as well as having mental health diagnosis subscribed to behaviours that are not MH related. Certainly being on the autistic spectrum doesn’t exclude the possibility of also having a personality disorder.

    In Claire’s case, it may well be that it is the hospital environment that is generating challenging behaviours and that moving to the unit in Brighton will exacerbate those problems. Its more than possible that the very act of intervening has made the situation worse and that the mental health professionals have got the cart before the horse. It wouldn’t be the first time.

    So what I would like further understanding on is regarding this tension between the autistic person that is Claire and her current mental health diagnosis and ongoing assessment which should be generating a proposed treatment and management plan.

  9. anonymous permalink

    Recovery away from Medicating Autism and any form of Disability. “Treatment plans” you mean recovery plans. “Management plans” you mean going back home……..

    • LiT permalink

      I have been very clear on the distinction and issues between Mental Health and Autism. These are not simple matters whatever way you wish to dress this up as.

      Nor does a treatment & management plan have to include medication. The point is that there needs to be recognition of what can be seen as the autistic person and what can be seen as a mental health disorder. The recent NICE guidance is helpful here with regards to treating those on the autistic spectrum and what is potentially possible and what is harmful practice.

      Returning Claire back home to Swansea asap has to be part of the management plan. But, and this is the point, there needs to be a suitable package for Claire and her family for that to happen and it needs to be signed off by all the participants. As long as there is a void, it won’t happen.

  10. ‘Being on the spectrum doesn’t exclude personality disorder’. True. But treatments for BPD that work well for otherwise neurotypical patients are highly unlikely to be helpful for a person on the autism spectrum.

    The *******, where I understand Claire to have been sent, does not make provision for autism or for learning disability. It treats BPD using dialectical behaviour therapy – a form of cognitive behaviour therapy that requires a high level of patient commitment to the treatment, and fairly high-order patient cognitive skills, if it is to succeed.

    Claire’s mother says – and I cannot imagine what reason there could be to doubt her on this – that her daughter does not understand complex language or long words. It is therefore hard to see what the ******* can usefully offer Claire; certainly nothing leaps out as obviously justifying cutting her off from all that is familiar and safe.

    A more rational and kinder approach would surely be to look at what works well for Claire on the days that she spends at home, and construct a tailored service that replicates those optimum conditions, in Swansea. The Health Board have had 27 months’-worth of opportunities to do this while Claire has been in residential care. They do not seem to have even begun to try.

    • Pauline Thomas permalink

      Claire’s parents views should surely trump the views of the professionals in this matter. They surely know her better than anyone? Or is this naivety on my part. What about Clair’s right to a family life? What monsters these so called professionals are.

    • LiT permalink

      I agree Kara that the 27 months period is a damning statistic. The fact that the ‘assessment’ is continuing in the **** makes you wonder whether the local Health Board has any self-awareness as to what constitutes professionalism.

      As I said above, its worth reading what NICE have directed (NICE quality standards [QS51] Published date: January 2014) about treating those on the autistic spectrum.

      Fully agree on the rational/kindness points.

      http://www.nice.org.uk/guidance/qs51/resources/care-and-support-for-people-with-autism-must-be-improved-says-nice-

    • Kara – hope you dont mind but I’ve edited your post to remove the name of the unit Claire is being held in. The family have chosen not to name specific places.

      • Don’t mind at all, Mark, in fact I’m grateful to you for this.

        I found the unit name, specifically linked to Claire, elsewhere in the public domain, and I’m sorry if it has arrived there contrary to the wishes of Claire’s family. Thank you for preventing me from being a party to propagating it further, as I would want to defer to the family’s preferences.

  11. I’ve been following Claire’s story from about last January when Mark referred to it on this blog. Although we do only have Cath’s and the rest of the family’s word to go on, there is an awful lot of evidence, including photographs of places Claire has been, again and again. This would not happen if Claire had caused major incidents at any of these places. That Claire is safe to be out in the community can be verified by contacting the people who run these places and the events she has been to. The old unit would surely not have let her out again and again if there was any risk, let alone after they had decided that a secure unit was necessary. It’s very plain that her behaviour was a product of the stresses of institutional life or the result of how she was being treated, not her condition alone.

  12. Jayne knight permalink

    Sorry my pits wasn’t clear. The health board were offered an alternative locally. They chose to ignore that and say they were going to do something locally. They told Cath that they could not get hold of the person that had presented it. That was not true. They just tell stories that suit them and families trust they are telling the truth. If people are saying anything about this family it’s so unfair,. They do that about Lynne and Chris too. I’ve seen too much of this power situation to feel any sympathy for the Goliath bleating it is one sided. Sorry my post was dreadful and not clear at all. I was not feeling great over the weekend. My sympathies are completely with all of these families and the young people

  13. Mark as my previous post is so unclear that it is the health board not the family who I’m criticising could you remove that post please and just leave this last one? I would hate the health board to even imagine they had a supporter let alone me being it

  14. Perhaps the difficulty with the diagnosis for Claire is that she didn’t begin to show symptoms as I understand it until she had a trampoline accident aged 12. Autism shows itself at a very young age.

    • Hi Karen, having read Cath’s account of Claire’s condition before that accident, she had always had some autistic characteristics, although she hadn’t been diagnosed. It may not be classical autism, but it is a learning disability with autistic features.

  15. Karen – Are you questioning whether Claire is autistic

  16. I couldn’t possibly make that judgement but others closely involved seem to be questioning it and when talking with Cath she said there were no signs of it until after this accident…..that Claire had no really significant problems beforehand which would seem incompatible with ASD.

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