“A Preventable Death” – Some Questions

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.

10 thoughts on ““A Preventable Death” – Some Questions”

  1. 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.

    Even in the care of people with actual psychosis, antipsychotics are powerful sedatives and are often used precisely for the sedative effect even when they are ineffective in treating the psychosis. And dramatic weight gain is a common side effect. One lady I sometimes speak with who has been sectioned three times because of schizophrenia said that the only noticeable effect they had on her was sedation.

    1. If the disability charities had listened to the carers of the people with LD and not put their weight behind the government, it would have saved a lot of heartache for families who are now struggling to maintain a half decent life for their loved ones.

      Our local Mencap was great, it always was a force to be reckoned with when fighting our LA for better services. The LA was scared of them. Not any more. They have become providers and have to toe the line in case they lose their funding, same goes for our local Carers Society. However I do not blame the people in our local Mencap for this change for they are decent hard working people. I do however blame Royal Mencap who were the instigators that demonised carers who wanted to keep the status quo. Did’nt we tell them that lots of people could not take change? Did they listen? Are they listening now that these people are becoming anxious and angry and are regularly given powerful medication that often makes them worse. Medication that thins their bones, weakens their immune system and can leave them unable to sleep.

      When my son’s day services started to be run down he started to be anxious and angry and uncooperative, we suggested to the psychiatrist that these were happening because of the changes to his lifestyle. He agreed but was powerless to persuade the LA to change its policies on day services. So there are many people with LD who are being given powerful antipyschotics who in reality only need the stability of decent day services to make their lives worth living again.

  2. […] Today the report into the death (PDF) of Connor Sparrowhawk, an 18-year-old who drowned in an NHS learning disability unit in Oxford last July (see earlier entry), was published. That it was published was thanks to a long campaign by his mother, which faced much opposition from the NHS trust involved, which made such excuses as protecting their staff, and faced a last-minute obstacle when police delayed publication so as to consider a criminal prosecution. His death was the result of epilepsy, and he had been left in the bath with observation at 15-minute intervals, which is nowhere close to adequate when supervising someone with epilepsy in the bath. The report also exposes some of the inadequacies of Connor’s care at the unit, which was obviously ill-prepared to care for him and two of whose senior staff believed he should not have been there in the first place. (See also the Southern Health NHS trust’s statement and the family’s solicitor’s report. More: George Julian, Funky Mango’s Musings, Rich West, The Small Places, Mark Neary.) […]

  3. there is a staggering amount of words spoken by ASC about Autism all crap…. we have to take control insisting our kids are shown the dignity and respect they deserve.
    In my sons case the injuries my son received in the care of the LA were horrific,the authority went into self preservation safeguarding itself rather than my son.
    Every single salaried person who hurt our kids should be subjected to a criminal investigation an investigation with answers.
    People should not be rewarded with promotion for poor quality of work that destroys lives – they should be held accountable and exposed…..
    I’m with you Mark – lets turn this corrupt world of Adult Social Care around….. for LB and all our kids….. Solidarity….x

  4. Totally agree with everything you’ve said Mark, but also…have one comment to add to the debate. There are some good support providers out there, up against budget cuts and local authorities pricing them out of the market. replacing them with cheaper alternatives who say they can provide “adequate support” for less money. they tread a fine line too, when it comes to maintaining their (good) services and maintaining a good relationship with Commissioners. My son’s provider (a small local charity) are brilliant but are up against it too and Dimensions who I work for as a Family Consultant face the same issues across the country. Nothing is black and white as they say.
    Oxfordshire Family Support Network (OxFSN) are working with some of the big charities to develop a support service for families. We are very early stages but your input into this project would be really great. please get in touch if you’d like to know more. BW Gail

  5. The Liverpool Care Pathway, now discredited but being reviewed with no better outcome, is being stitched up for the elderly, and ultimately for all of us. 30,000 people have disappeared on that pathway to death. Yes. Fight your cause. But, know that there is a bigger picture and if we don`t start joining the dots, we`re screwed ..With great sympathy …

  6. You are so right. I am not anti medication, but any medication trial or regime needs to be insititued with a clear plan. So: We suggest he take X because it has been shown to help with ABC. The side effects are…we think that if it helps with ABC it is worth trying. We will review this at this time by when whatever effect the medication has should have shown itself. If the effect hasn’t been a good as we hoped and/or the side effects are too hard to tolerate we will discontinue/change dose/change pills.
    That is what we all do with anything we are prescribed whether its for an acute or long standing conditions.
    With people with LD there is the tendency to keep them on medication regimes way too long without any sort of review-often with just new layers added-because:
    No one Doctor is responsible-LD people no longer have one clinician who is meant to coordinate all this.
    The behavior isn’t better and nobody else is suggesting anything. There are no other services which can help.
    The person is in a setting where they won’t be taken in and reviewed so things just go on and on.
    Same with assessment and treatment units. If they did assess and treat, great. You’d hope that at the end you’d have a much better idea of the problem and some good ways of managing it. But usually there’s no assessment and no treatment-and no obligation to provide any.

    If anybody, LD or not is coming up to any sort of transition its very common that problems will surface.The transitions in LD are often so poorly planned and inadequate and put together by people who don’t think the LD have feelings at all.
    Yes, there are people with LD who as adults have very difficult behavior come what may and its a real problem.We can’t pretend its all down to terrible resources but I’d say about 90 percent of it is!

    I spent last night in tears about the poor man with ASD who was hit and kiiled, reportedly, by a cyclist he was upbraiding for riding on the pavement. There are photos of the poor man with ASD trying to explain the rules to an aggressive, stronger man. Who got 4 years. Out in 2.
    That could so easliy be my son. He’d be very bothered by something like this and would approach anybody to hold forth . How can we keep our adult children safe, when we won’t live forever and there seems nowhere for them to be? No day centres, no shelltered employment, no good sheltered accomodation.
    I have also found the big LD charities to be very reluctant to be involved in what the NAS call “anything political”.Mencap were a bit better and at least will put out a press release, but at best they are a bit like Mr Barraclough in Porrige-faint,pained reprovals said to not many. We need outrage, press conferences, protests.

  7. Thank you for this honest and heart rending post Mark. I work as a Music Therapist for a Mental Health/Learning Disabilty Trust (though they often seem to forget about the latter). I am currently working with a young man who is on the autistic spectrum. He was at Winterbourne and then moved to another place which is currently going through the courts. Fortunately the place he now lives seems excellent, but he will be traumatised for life, in addition to the various difficulties and past life experiences he has to deal with. The tokenism of the Learning Disabilty nurse is shocking. Our trust has a decent sized psychiatric liaison team in the local hospital, but I’m not sure about the Learning Disability Liaison.
    So sorry to hear about Steven’s diagnosis, and the fact that you had to leave our “free at the point of need” NHS and go private. I really hope he gets better soon, and gets back to a psychiatrist that understands his needs and will take positive action, taking your opinions seriously.
    My trust has inadequate psychological therapy provision according to the CQC, and yet they are ploughing on with 30% cuts. Will it take suicides to change things, or are they deliberately running services into the ground so that privatisation seems a better option? Our local CAMHS is already run by VirginCare, as is our scholl nurse! What next?
    Really hope Steven’s help improves soon, and that he and many others like him get the respect and dignity they deserve. Keep on with the immediate and urgent action.

  8. Hillingdon has people in assessment unit’s and they have been there for years. They appeared to be forgotten until Winterborne highlighted the situation in these places. These places should be for treatment and if it is going to be long term or not working then they should be better supported closer to home but this will cost more. Local authorities want to return them to Hillingdon and think Supported Living is the answer. They do not have facilities in Hillingdon to provide day activities. With regards to medication it is trail and error all they is it is doing the job, if we take him off that we could put them on another medication with more side effects and weight loss, blood pressure problems homornes all screwed up. In the end when you start on the medication you are told don’t worry it is only till puberty before you know where you are you are stuck and the medication is addictive so when you try to reduce it the behaviour gets worse so you are caught. Sometimes you wish you had never started and consultants should do more before writing prescriptions.

  9. All so true and frightening……. For me the two comments which ring loud bells are:

    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.

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