‘Did you tell them LB had epilepsy?’

imageThe other week I had another interview to do with ‘LB’s case’. He ain’t a case but he’s become ‘a case’. Nearly three years on. Not to us but to officials around us. I don’t think he even qualified as ‘a case’ for Sloven initially. He was less than human. Less than a case. Like the other 330 odd people who died in their ‘learning disability care’ between 2011-15. Tossed aside without consideration. A two bit non human service user with a pain in the arse mother who blogged about her son’s experiences.

The interviewer at one point asked me

‘Did you tell them LB had epilepsy?’
Did you tell the staff in STATT LB had epilepsy?’

I eventually managed to breathe again, stop the tumbling tears and say, without swearing, that LB took daily medication for his epilepsy which we handed over to staff on his admission. Of course we fucking told them.

[I didn’t bother saying about the time we were phoned to ask if we had additional medication because they had run out, or that day in May when I told them, phoned them and emailed them to say he’d had a seizure they hadn’t recognised. Or that unknown to us, the psychiatrist went on to insist LB wasn’t having seizures…]

So. Yes. We told them… why the fuck are you asking me this?

I was embroiled in twitter exchange yesterday with Human Factor (HF) protagonists. An approach that focuses on learning not blame. I don’t know. I find the HF bunch a bit evangelical. And the whole idea that preventable deaths are ‘golden learning opportunities’ makes me feel ill. Unfortunately our ‘meeting Jezza Hunt’ experience was pretty depressing as he insisted a HF approach would lead to safety improvements across the board. Thereby improving the currently dire mortality rates for learning disabled people. No Jezza. Stop it. Just stop it. But he wouldn’t.

What is astonishing is the focus on protecting staff. Creating a safe space so staff feel they can tell the truth about what happened, about what went wrong. So that ‘golden learning’ can happen to prevent people dying in the future. Meanwhile, parents/families can be implicitly, or explicitly, blamed and crushed by the process.


Talking of which, 12 Angry Women premiered on Friday night at the Brighton Dome, packing a punch or ten. Edana Minghella, one of the writers, wrote a short piece about LB and composed a song; ‘The Mother’s Song’. Just astonishing. In a 10 minute piece, she wove together a combination of blog extracts capturing LB as a quirky, funny and much loved dude and ‘official’ commentary contrasting the brutality of what happened and what followed. It included the mermaids, Afghanistan, slavery, wanking, social media and toxic mothers.

There were three characters each of whom were performed brilliantly by Gem Bennington-Poulter (LB), Leann O’Kasi (me – bit odd saying that) and Richard Attlee (Generic Official Person). The latter was a mix of the coroner, Sloven, NHS England, the CQC, Monitor and Jezza rolled into one. You could hear a pin drop in the packed and boiling auditorium as the story unfolded. Tears. And more tears. And the song is simply beautiful.

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12 thoughts on “‘Did you tell them LB had epilepsy?’

  1. If all those deaths, had happened in the family home, they would not have been ‘goldern learning’ opportunities, without apportioning blame, the police would in , it would be headline news, and the parents would be serving a long jail sentence, labelled abusers, and all their children removed to care.

  2. I keep thinking about Peace & Reconciliation, where old terrorists become government ministers in the interests of long term civil stability. All sorts of evils have to go unpunished and the victims have to stomach it.
    This seems to be the Human Factors idea too, but the situation isn’t the same. An NHS hospital isn’t a war zone. People are employed to do a job of work in a properly professional fashion. Patients aren’t required to “reconcile” themselves to professional practice that fails them, for whatever reason. It is certainly not in the interests of the greater good, just so that “lessons can be learnt”.
    Some failures are due to poor organisation and overstretched employees, in which case this bad practice needs to be recognised and rectified at a systemic level.
    But some human factors are simply down to bad practitioners, people who do not, or cannot, do their job properly.
    It is wrong to be “reconciled” in any shape or form to such bad practice.
    If incidents are effectively investigated, there may be individual mitigating circumstances, which can allow those affected to understand and forgive, but this is a purely personal mattter. Nobody is, nor should be, obliged to forgive and be “reconciled” to an incompetent, dishonest, corrupt or unjust organisation or system.
    Here endeth the Ethics lesson!

    • I think, if you are not accountable, you do not do your job properly its as simple as that.

      And, sadly, those who want to, cannot, because the systems do not allow them to.

  3. I noticed, when I read the press reports, on all the poor wretches, who died coughing up salt in terrible agony for years, as their bodies slowly filled up with faeces, until eventually their vital organs shut down, in St Andrews hospital, for at least £4500 per week , tax free.

    The news papers, did not mention their terrible suffering, but did mention, that their deaths had been very upsetting for the staff ‘caring’ for them..

    Likewise, if you read the magistrate’s comment, on sentencing Thomas Rawnsley’s care worker, who had been abusing/bullying him for months, and bending his fingers back, saying,’ How many can I break this time’, but couldn’t as Thomas, was double jointed, the magistrate is quoted, as saying,’ it is very difficult dealing with these disadvantaged young people but proper restrain must be used’.

    No, the state and those that work for them, are very much protected, whilst parents are targeted.

  4. I am concerned.

    It appears that what is emerging is more heads on the Hydra of skills in how to deflect justice and accountability. There have been brilliant ruses in past, most now rumbled but all worked well to deflect and numb. They were called complaints processes; the shared outcome of all was small and lessons were not learned.

    Now we have the ‘anti blame’ deflection bought by the Public purse, consciously or unconsciously useful to helping deflect and ensure no one in charge is fired or ends up in court ?

    The next wheeze: to fund and facilitate worried and worse families in meeting up. This helps disseminate shared pain but it also deflects and usefully pricks and disseminates our outrage and anger. Closed talking shops however healing, change little.

    Keeping the LB flag up there and out there is essential to achieving new justice and safe and kind care.

    It will be a long up hill job for there are too many benefits in keeping the status quo and too few champions, but the more powerful the LB campaign and champion the less easy it will be to deflect us and distract us; keep us from bouncing off the ‘wears ’em all out eventually” wall.

    …….LB more grist to the mill…….xx

    • But Mathew, like all the other scandals revealed, is in public NHS care. As was Winterbourne View.

      Whilst, the scandals, in private NHS/LA/ local health trust provision, like Thomas Rawnsley, are not revealed.

      As many unknown deaths in St Andrews Hospital, are not exposed, because, it is privately run, although 90% of its income is NHS public money.

      This exposure, therefore of only public provision can only be to enable provision for LD/ASD services, to move from public NHS, to private local provision, using public funds, which solves nothing, for the autistic/LD service user..

      In fact, it is worse, as this provision will be for life, with no reviews,, as under the MHA, as it will be under the MCA, and such provision, will be deemed, in their ‘best interests’ by the Court of Protection.

  5. Let’s form a campaign group – a rights movement. We can go to the European Court of Human Rights or other for issues that aren’t being addressed.
    There was a successful Black Civil Rights movement, wider Disability Rights, Animal Rights – yes, the lives of animals in research changed significantly overnight.
    This not learning from repeated deaths and other, is ridiculous, as it’s obvious discrimination, and failure to provide basic or proper care and treatment.
    People without autism and learning disabilities would never put up with this, and Jeremy Hunt as a father himself surely wouldn’t see his own child’s tragedy as a golden opportunity for learning.
    Any one of us could be in a car accident, suffer brain injury, and elderly care is going to be for most of us our experience.
    Let’s look at good practice in the world if we can’t think clearly in the UK, for example, Denmark, where keyworkers for life were happening while we have just talked about keyworkers for over 20 years!
    I was at a conference at Birmingham City Council House 10 years ago where a professor from Canterbury described practices in Denmark.
    We should look at any A&T units in this country where there’s good practice, good Supported Living models, good support in the family home models.
    There are good professionals, and good careworkers, but families must be firm about care and treatment as soon as it starts, and see that good food, good exercise and sensory therapy, and cognitive input happen.
    Those with autism have very active brains; they don’t sit around gossipping or thinking about how to do as little work as possible for the most amount of money, or how to exploit.
    Society is a mess inspite of technology, and we could learn a lot from our people who we love, as they are an example to us of another way of living.

    Struggling alone with our ‘cases’ is costly, isolating and very lonely, but as a campaign group would be stronger and clearer and louder. We must keep talking and not let the subject quieten.
    There are solutions, and families are part of the biggest solutions, as all age old wisdom across cultures tells us our mothers, parents, others can care for us as others simply aren’t programmed to. It’s not even the careworkers, health staff’s fault; they aren’t programmed to really care, but can be a great help, support families or be there as additional support or be the significant other. They need us as much as we need them. We need to start stating the truth.

    We need more outreach, care in the home, homes near families, and proper treatment programmes with good food, good exercise, good sensory therapy, done as cheaply as possible – family input will always keeps costs down.

    • Can’t we mainly, try to leave the children at home, until the parents get too old, and, there are no other relatives who want them ?

      And, give parents, and the autistic/LD some rights.

      If, the state were not acting illegally, we would already have some, ie under Lasting Powers of Attorneys, Human Rights Act, UN convention, that does not allow removal of capacity and legal personality.

      And, the disabled and their families right to claim up to £200,000 per year, avaiable under the Chronically Sick and Disabled Act 1970, towards education, health and care, which is now being hijacked by the private sector commissioned by the state to institutionalise for life..

      • Yes, we should leave people at home for as long as possible, and actually many policies of Trusts are to return people home from ATUs as soon as possible. They do say that’s the right thing to do. So they do know.
        But without recovery, because treatment hasn’t happened, the person doesn’t come back.

        I read on a new change.org petition (‘Action for Eddie’), that
        ‘On christmas day 2012 we were asked to stop visiting daily as Eddie was not coping when we left. His behaviour and mental health deteriorated. At that point the doctors were called and the decision to section Eddie was made.’
        If Eddie needs his family, then his family must be there as part of the therapy. He is saying he needs them.
        The doctors need their families, I’m sure, almost as much as Eddie needs his, as we die without this basic need.
        Love is the biggest part of any therapy, although the word isn’t really used on care plans, and ’emotional needs’ sometimes sound like just anyone can meet them!
        I know I choose who meets my emotional needs..

        Even my child’s GP says that society isn’t cut out to care, so we’ve got to find solutions, rather than allow this culture to drag on, and have a slogan that’s stronger and not understated.

        • So, we have, so called ‘treatment’, and ‘assessment’ from the NHS, but no one knows, what this is.

          Except, it consists of powerful antipsychotic drugs and anti depressents, on those, who do not have a mental illnesses, but are autistic or learning disabled, let alone, a severe mental illness, which the drugs are licenced for. See-

          Obviously, the ‘patient’ wants to be with people he knows, loves, and is familiar with, so when they go, this upsets him, and, justifies their exclusion, which is not ‘treatment’, but torture, and cannot be ‘assessment’, as drugged, alone in hospital, is not this person’s normal environment.

          None of this makes the patient better, but worse, so £4,500 minimum, continues to be paid for his treatment/ assessment, no one knows what this is, except it is severely damaging the ‘patient’.

          Then, there is a big media campaign, to move all these, now often for years, damaged by their ‘treatment’/assessment, and now probably mentally ill autistic/LD, to their own ‘home’, in the community.

          Under now the MCA, for life, with no reviews.

          Their ‘home’ owners, are often private venture capital, and can, and do, exclude all familiar people including their parents, on same excuse, and, the medication continues, as does the claim of £4,000 per annum, and, the damage, and the misery.

          So where is the hope for the autistic/LD and their parents ?

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