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“Why Was Connor In Hospital?”

October 17, 2015

Yesterday was a remarkable day. After two and a half years of Sara Ryan and her family being on the receiving end of the most abhorrent behaviour from Southern Health NHS Foundation Trust, the jury at the inquest of Connor Sparrowhawk delivered its verdict. I was at a conference in Croydon but I wasn’t really there. Whilst the other speakers delivered their presentations, I was glued to Twitter, waiting for the verdict to come in. Death by drowning with a contributory factor being neglect. And a list of “serious failings” as long as an 8ft man’s very long arm. I cried all the way home on the train. I got back to Uxbridge and found a secluded spot in the Slug & Lettuce and cried some more. The relief that the jury saw through the appalling tactics of Sloven merging with the unspeakable sadness that a young man’s life had been so needlessly lost. I got back home and couldn’t tear myself away from the news bulletins and Twitter for the rest of the evening. More tears came when I read a tweet from a mother who had just broken the news to her two kids. One of them asked: “But why was Connor in hospital?”

That is the big question. I appreciate that at the pre-inquest hearings it was agreed that the question was outside the scope of the inquest but I hope that one day it is answered. I find it incredible that more time was devoted at the inquest to Sara’s “Dr Crapshite” blogpost than it was to the role Oxford Commissioners played in the preventable death. In fact, they didn’t appear at all. I’d like to try and answer that little boy’s question.

The discredited, unlicensed (in the UK) psychiatrist said in her evidence that people are admitted to STATT because they are “very unwell”. In one respect, you can’t blame a psychiatrist to see the person through a medical lens. That is her training and it certainly serves her purpose to see young men like Connor as “very unwell”. But from the starting point of seeing Connor as “very unwell” a whole train of events were set in motion that ultimately led to his death. Needless to say, the psychiatrist’s first action was to change his medication, riding roughshod over the family’s concern that Connor never reacted well to medication changes. The evidence from court suggests it is highly likely that the change in medication led to an increase in Connor’s seizure activity. Even that might have been manageable if the arrogant doctor hadn’t dismissed the family’s concern and decided that what was clearly an increase in seizure activity was nothing of the sort. The fatal, dreadful consequence of that decision was that Connor had a seizure in the bath and drowned. To compound this horror up to the very last minute, the psychiatrist’s counsel proceeded to try and discredit not only Sara but the court appointed epilepsy expert.

I’ve written about this many times before but I have a real huge question mark over this idea of “very unwell”. I’d love someone in the autism field to take up the cudgels and do some serious research into what happens to our young dudes sometime during mid puberty. Like Steven at 17, Connor became very unsettled. We have heard many many similar stories online of young autistic men and women struggling and in distress. Is it a psychiatric crisis? Or is it an existential crisis? If, as I believe, it’s the latter, it doesn’t necessarily need medication intervention and it certainly doesn’t need the person to be taken away from everything they know and treasure. I use the word “treasure” as I’ve tried to understand how Steven made sense of his time in the ATU. From his autistic perspective, the things he treasures are his routine and his familiar surroundings and people. For all those things to disappear overnight must be the greatest terror in the world. I’d suggest that the word “routine” and its importance to someone with autism holds the clue to the crisis. I can only really speak for Steven but I know he is very alert to potential change, very sensitive to the possibility of his foundation stones being rocked. And here’s the thing. You go through school and around 16, you start to get wind that everything you have known for the past 12 years is about to change. You may not understand the word “transition” but a whole army of new professionals suddenly enter your life. I imagine, that no matter how sensitive those new professionals may be, the danger signals are flashing. People start discussing new ideas, either with you but more probably, around you. New words like “work”, “college”, “placements”, “day activities”, “support teams” hang dangerously in this new, frightening space. Connor, like Steven, clearly had a very well tuned bullshit radar, that is probably going to pick up the shams and the spin long before the parents have twigged. All the ingredients of a terrifying existential crisis. But not “very unwell”. Enter at this point the likes of Dr M who will blithely diagnose a chemical imbalance and prescribe some anti psychotics to correct the imbalance. Shamefully being too conceited to acknowledge that her prescription is creating the imbalance whilst surrounding herself with staff too shit scared to question the judgement of the senior. And all this has to take place on the psychiatrist’s own territory. For the “patient” this is a territory of terror. The original crisis increasing tenfold.

I think that is why Connor was in hospital. It was why Steven was in hospital. And is probably the reason why others like Chris, Tizane, Stephen and Eden are trapped there.

I wish I had both the brain and the money to research this more thoroughly. There must be someone, some organisation out there who could provide this crucial service.

I don’t want to end on that note. I want to end with my own thanks and expression of admiration to the following:

On Monday, in court, I found myself sitting in the row behind Connor’s brothers and sister. Every few minutes I had to swallow hard to hold back the emotion of witnessing these incredibly courageous, dignified young people.

George Julian is a phenomenon. I have never witnessed anything like her live tweeting and I think I have witnessed history being made. Things will never be the same again after George’s incredible achievement.

And Sara and Rich. Carrying such unspeakable pain but both with hearts as big as the world. You mean the world to me, and I’m sure all the @justiceforLB supporters.

I tried to break the news to Steven last night. The concept of “neglect” was a bit beyond him. I asked him if there was anything he wanted to do for Connor and his family. Steven has never really been into lorries or buses but one area where he and Connor resonate is….. cake.

Connor. This is for you mate: cake

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From → Social Care

23 Comments
  1. Deb. permalink

    Noticeable silence from OCC which is unusual in my experience. What was apparent though with the `professionals`- was how ego became greater than empathy, and the question still hasn’t been answered – where is the accountability from SH Trust, because ive yet to see evidence as they are all too busy blaming each other.

  2. Tracy permalink

    How come the psychiatrist was unlicensed? That is appalling. I can’t get my head round it at all. Your blog made me cry, especially the last sentencee and the photo of the cakes. I hope Connor has all the cake he could ever want now in Heaven.

    • At some point her license to practice in the UK ended. we don’t know why. She is still licensed to practice in Ireland though.

  3. Caroline Hunter permalink

    I wish someone would do the research you speak of Mark. You have it in one. Exactly what happened to our son too, at morelorles exactly the same age and so on. We met lots of other lads ( and a few lassies, but not so many – another piece of research maybe?) over the 19 months he was stuck in the ATU. We are the lucky ones, in that they came out. But the damage done will last forever. All because there wasn’t enough support when they were at home. And yes Social Care, that support should have come from you.

    I cried every time the news came on last night – such dignity shown by all of Connor’s family and friends, and as you say, brothers and sister who do him proud my God.

    Southern Health should be bowing their heads in shame – the contrast so stark.

  4. frannie permalink

    Consultant said she did not know Connor well,If I recall correctly she saw Connor less than a single handful of times in 107 days and she was based on site. She worked 3 days a week with a caseload of approx 15 patients and had a registrar to help,the one member of staff who shone out was a lowly paid support worker he has left the trust and the role was not involved in the inquest but it was obvious he made the effort to make a relationship with Connor, whom he respected, and liked

  5. Lizzie D permalink

    I wish people would do the research as well – though I think some have, and come to wrong conclusions – like, if we take these young people away from their families, everything familiar, they will get used to being miserable and be a lot less trouble and expense.

    My daughter isn;t autistic, she had a stroke, and it was very clumsy “Independence Training” that terrified her. Years later, the terror and uncertainty can still be triggered. Some parts of her brain may struggle, but she knows what is important to her – and also knows that what is offered by “them” is not what she wants or needs. Not easy for a parent to balance proper care with autonomy, especially while fighting off inappropriate “support”. Who wouldn;t jump at assessment and training – but that isn;t what is being offered, is it, as this harrowing reporting of the reality has shown.

    How Sara and her family could tolerate the arrogance and insensitivity on top of the harrowing grief I can;t begin to imagine. I just know we should all be grateful for her tenacity, and pray that change may come from it.

  6. Sally permalink

    What an amazing day that was. We were also glued to Twitter, hoping for a good verdict and always admiring and anguished for the suffering and the courage of Connor’s family.
    There is a appalling gap in services for young people with autism. Yes, someone with autism can be mentally ill just like anybody else. Yes, just like anybody else, mentally ill people who also have autism could sometimes be so ill that they need hospital .
    But…hang on…I didn’t read anywhere that there was a suspicion that Connor was mentally ill. Anxious and unhappy and uncharacteristically unsettled yes. And his concerned family, after a terrible weekend had hoped as Sara said “for the cavalry to arrive”
    They didn’t .
    There was no service to help work out what was upsetting Connor and to manage his behaviour at home. No help given to the family to assess and treat while Connor was at home. No good respite if a day was needed for everybody to catch their breath.
    The ATU did not assess and did not treat. Indeed that bloody psychiatrist didn’t seem to see that as her role. It was extraordinary that she had only seen him a handful of times. She struck me as one of those in learning disability services, not because they have a genuine interest and ability but because it’s an unpopular field and the mediocre can rise faster than in other areas. She seemed to have a distaste for the learning disabled.

    I admire LBs family so much.
    A young man is dead. Will anybody involved have any negative consequences? Job loss? Anything?

    • Pauline Thomas permalink

      There is strong evidence that being on anti-epileptic medication for many years can lead to people, especially people with a learning disability, developing a psychosis. Add to that the paring down of meanful day services and the opportunity for people to socialise being taken away and you have the perfect scenerio for mental illness to flourish.

      There is a Dr Rachel McNamara of Cardiff University who with others are researching the connection between epilepsy medication and mental illness among people with a learning disability. I believe the research will take two years.

      My son who is 43 years old and has always lived at home has become very ill and unmanageable with awful hallucinations and anxiety and we have in desperation sent him to stay at a respite centre while we try and sort out his future. . The desperation we feel when we cannot cope is only matched by the awful guilt at not being able to help our son.ourselves in his own home. He is constantly in our minds and we cry all the time.

      Sara and Rich must have felt much the same when Connor was in hospital. They were, and we are, desperate families hoping and praying for the doctors to make our sons well again. Sara, Rich and their family have had to bear the ultimate pain of losing Connor and the gut wrenching realization that the people who were responsible for his death were going to deny any wrong doing. All I can add is thank christ they were made of sterner stuff. Thank christ they had determination and the balls to do something about it. Praise be for the friends and professionals who backed them and got the verdict that brought out the truth. Connor and their legacy must be that people with an LD will be accepted as part of their community and the wider society and not seen as less than human.

    • weary mother permalink

      The CE Southern Health stated on TV after the inquest, that people at every level of the organisation had been ‘disciplined’. Anyone know who was and how they were ?

      When my son and others were manipulated, bullied and put in danger of sudden death repeatedly by a monstrous agency support worker, I was told outcome of their investigation was none of my business. And when approached by me, LA totally not interested. ‘Matter for agency’, although they commissioned this agency to support my ‘independent’ living son. . Worker was not sacked.

  7. Diana Stevenson permalink

    The whole thing makes me so sad. I am a social worker in a Local authority social work team, and have worked with people with learning disabilities and their families all my working life. I can’t begin to understand the pain that Connor’s family must be going through. I just think that in so many situations common sense has gone out the window. Does it really take more than common sense to realise that you do not leave a person with epilepsy in the bath alone at any point, despite what a care plan might say? I think we have lost our way so much that actually human caring and decency has lost its value. I haven’t read any details of the judgement, but feel so glad that all the failings and neglect have been recognised.

  8. I agree with you, Mark, that to be on a different developmental track is not to be ‘very unwell’. And I don’t understand why ‘condition’ is so often conflated with, or confused with, ‘illness’.

    The drug that was added into Connor’s medication regime when he was in STATT – risperidone – is described on MedicineNet as “an atypical antipsychotic drug that is used for treating schizophrenia, bipolar mania, and autism”. Autism as an illness, not a condition.

    Reading on, it gets no better: “The exact mechanism of action of risperidone is not known,” (how on earth did it get approved for use, then?) “but, like other anti-psychotics, it is believed that risperidone affects the way the brain works by interfering with communication among the brain’s nerves.” If that is indeed the case, no wonder it lowers seizure thresholds!

    “It is believed that many psychotic illnesses are caused by abnormal communication among nerves in the brain and that by altering communication through neurotransmitters, risperidone can alter the psychotic state.”

    So there you go. Autism is not just an illness, it is a ‘psychotic state’. Anybody who accepts that definition could justify more or less any ‘autism intervention’ on the back of it. And, it would seem, they do, and they do. With impunity (so far). 😦

    • Pauline Thomas permalink

      Kara that is why more research should go in these drugs, especially when given to people who cannot explain how they are feeling. It is like playing russian roulette with their lives.

      Try looking at CEPUK. The stories of people who are now withdrawing from these drugs are inspirational and frightening. My son has experienced some of these symtoms but unfortunately cannot tell me how he feels. That is the problem. It is a wise doctor that listens to the parents who are delivering the day to day care and not be so egoistical as to treat them like the enemy.

  9. Carole Cliffe permalink

    I am so glad the family gained a watered down form of justice and that neglect was acknowledged but like you Mark am concerned the question not being asked is what the hell was he doing there anyway.

    Because we do daily observations of our young people many of us are the best placed to make decisions as our understanding and underpinning knowledge comes from a place of depth and quality by comparison the self proclaimed experts whose experiences are limited to books and case studies done in a clinical environment which bears no relation to the real person and how they function in the real world is flawed at best. Indeed the clinical placement is a false environment, forced upon young dudes so no natural analysis can take place its a nonsense to claim it can so what exactly are they analysing rather like big brother some guinea pig exercise seeing how an unnatural environment triggers worse behaviour and how best to control that with a pharmaceutical cosh or sectioning!!! Bad odds for the young dudes…. ….

    every home environment is unique and as parents we tolerate and adapt to embrace their differences and adapt to the needs of that person through daily observations and experience. They are not “unwell” that is the very outdated medical model of disability raising its bloody ugly head once more its the medical profession putting up barriers to gaining positive outcomes when will htey ever adhere to the social model of disability? All our young dudes have is differences which need accommodating for is all and that is about knowing what everyday triggers heighten anxiety and stimulate challenging behaviour its about modifying the environment to de-escalate issues for them not force them into a world they can’t function in. When it was suggested my son entered such a place I refused stating the above and pointing out I had CCTV throughout our home and the self proclaimed “expert” could view it remotely to see how he functioned daily it also supported reviewing what everyday practices had the potential to trigger behaviour issues indeed I have always argued against my son entering such settings based on the fact it would be unreal and not his reality. Forcing him to accept such a monumental change is cruel and would only serve to trigger all manner of anxiety, fear and setting him up to fail from the onset.

    Like you guys when our young dudes enter puberty and self awareness comes into play which it does regardless of medical condition a natural process takes place on individuals however our young dudes don’t have right intellectual tools to deal with it. in our cases it is not chronological development its about waiting till the dawning takes place and along the way instilling coping strategies. Being overwhelmed by emotions is not a crime however the zero tolerance is.

    I have met so many clinical psychiatrists with one openly admitting his profession was something of a black art which as you imagine promoted no confidence or trust from me when you are being bullied to accept their analysis of the person with zero knowledge of them……………..to my mind they create issues not resolve them and the arrogance is breath taking I have a certificate therefore your life is in my hands!!! Scary stuff really…………..

  10. Shirley Buckley permalink

    Mark Im still digesting what has happened, but two things from my point ofview – my eldest son was in total chaos during puberty,he knew he was, and so did we all. A child turning into a man ccertainly existential, all the rites of passage, one just hopes and prays. The other absolutely inescapable fact is that epilepsy knowledge and care has returned to the dark ages, There is perhaps one epilepsy centre in the UK Walton Centre Liverpool. All the AEDs are volatile, all the interactions are unforeseeable, it is impossible to get an EEG from a competent source.As infinitum. My emotions are ruling me at the moment…too many typing mistakes….

  11. Sally permalink

    I have a question. I only know what went on at the inquest because of the excellent live tweets but it seems to me that the professionals involved all need to be reported to their professional bodies. The BMA for example are pretty good at investigating complaints and the more information that can be sent in to back up a complaint the better. The Dr involved sounded. especially negligent in her duties.Lazy, disdainful incompetent.
    So if Connor’s family can stand it, it would be good to report the individuals involved to thier professional bodies.
    Another thing I want to know is what the internal “disciplining” was Southern Health rather dismissively said. A boy is dead. What was the disciplining-a stern talking to? How dare that be said as if no further information was necessary!

    Southern Health were trying to cover their arses and fob off responsibility. How can they too be pursued?

    • weary mother permalink

      When a doctor is accused or ‘poor’ practice by a NHS Trust they can be suspended on full salary, at times for years. Similarly professional bodies can take eons to consider poor or mal practice, and all the while families are left in stressful limbo.

      My understanding is: Families can go to law on a no win no fee where there is potential for sufficient compensation to cover legal costs. We were told by a solicitor, recommended by Down’s Society, that although we had a sound case of serious neglect, the organisation concerned would fight us for years as they have unlimited legal funds (so ruling out any hope of bringing a self funded challenge) and this could destroy all residual quality of life for us as a family; a family already coping with the damage done. Also compensation would be based on his future needs (on which most compensation is based) but because of our son’s genetic learning disability this could be so low that it would rule the out no win no fee legal support.

      But I could be wrong?

  12. Liz Barraclough permalink

    I am doing some research into post 16 opportunities for people labelled PMLD (I’m also a parent of Eleanor who is given that label). Like you I find it baffling and totally random where young people end up. I am doing a Masters in Education and have researched a person centred curriculum; mentored another parent of a young person with their own budget post 16 and done a essay looking at a comparative study of ‘open’ and ‘closed’ post 16 provisions. I think I want to look into residential colleges for my thesis but to be honest I’m not sure. Thanks for your thoughtful and heartfelt blogs…one thing for sure is that families and people need to stick together. Kind regards Liz Barraclough

  13. Judy permalink

    So heart breaking. Can’t imagine how awful it must be for Connor’s family, to know for certain that negligence caused his death.. Three thoughts, 1) 30 years ago a neighbours 19 year old son who suffered from epilepsy drowned in his bath at a residential home. I thought those days were long gone. 2) the transition from school is difficult for everyone to varying degrees. Surely it must be obvious to everyone how difficult it must be for people with additional problems….3) Admission to a mental health unit is incredibly stressful for families and young adults even when it is clearly needed for treatment of a diagnosed mental illness that can be treated. Inevitably you lose your old life for a time. For people with a treatable mental illness it can be a price worth paying, but how heat breaking to see people treated in the same way for ‘behavioural’ issues.

    • Lisa permalink

      Judy I agree. I have always thought that high anxiety in Autism and Learning Disability is very different from a mental Illness. A psychiatrist once told me ‘because it can present the same, we will treat it as such’.

  14. Sally permalink

    Sorry to chip I again, but I was just thinking that something that shines out in Marks writings is compassion for the learning disabled /autistic. Compassion and reaching out to them, striving to get to know then and value them. Parents of disabled people I find always have that approach. Who is this person? How can I get to know them? How can I put them at ease? Can I help? Can I start a friendship? Can we have fun, make a connection? Hello!
    It’s a golden quality we all look for and treasure in anybody involved with our disabled young people. Do they like my person? Are they trying to get to know them.? Jesus, do they seem pleased to see them? Or do they look pained, talk over their heads, act as if rapport is impossible or somebody else’s job. (I remember one hour of a frosty session about my son’s incontinence. He is embarrassed about this. The woman involved talked through him and at me. His attempts to say anything were met with a pained little smile. )
    Reading the heartbreaking inquest notes, so very few of the staff at the unit seemed to have any interest in Connor as a person. He had gone from a happy family circle and friendly teaching assistants etc who has kept in touch to a disorganised, disinterested lot. The apex was the psychiartist who knew nothing about him, hadn’t cared ,hadn’t tried. One earlier Dr mentioned by Sara had taken the trouble to talk with Connor and get him a map of Ireland. That really shone out.
    Other things killed Connor. But perhaps that sort of disdain and disengagement helps breed neglect.

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  1. “Why Was Connor In Hospital?” | SandraSSP
  2. “Why Was Connor In Hospital?” | Love, Belief and Balls | danutag57

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