Entering the labyrinth; a leder tale

The leder report was published on Friday 4 May. Three years of the Bristol University project reviewing the premature deaths of learning disabled people.

[Blog commentary by Mark Neary, Mark Brown, two posts from Chris Hatton here and here. Opinion piece by Ian Birrell here. All worth reading (in any order).]

Key issues

1. The findings of the report (shameful).
2. The underfunding of the work (shameful).
3. The attempts to bury the report (shameful).

Here I reflect on the opaque and confusing labyrinth seemingly designed to make the premature deaths of learning disabled people disappear.

A song with no title 

No one knows what leder stands for. Including ‘go to’ Google.

leder

A (non) communication strategy

The report was finished in November 2017 and has been sitting in the grimy halls of NHS England while a communication strategy was devised. This took the shape of ‘timing, timing, timing and no communication’:

  • Bank holiday weekend and local election results.
  • No advance copies for the media.
  • No comment from NHS England or the Bristol team.

There would be no comment.

Holed up in the Holiday Inn Salford opposite the BBC studios on Thursday night there was no advance copy of the report despite repeated requests and cajoling from journalists.

I was sent a sneaky few bullet point findings to digest.

I went to the bar.

The coverage

8am-ish after fear-interrupted sleep still no public sign of the review.

Waiting outside the BBC Breakfast studio on the second or third floor, a 4-6 minute dash to the booth in the foyer for patching into the Radio 4 Today show was explained to me. Sofa to booth. Live coverage. Of premature death.

No report still.

The order was reversed. I beetled downstairs with Jayne McCubbins (who was instrumental in the coverage that unfolded). We worked out how to turn off my new phone, donned massive headphones and waited. In the small, darkened space. To speak to the Today programme.

The presenter wasn’t versed in the implications of the report. Jayne provided the headlines then I was asked about LB.

Nope. Don’t coat this scandalous evidence with a gratuitous dose of pity porn.

No.

It was a fairly tense interview. At the end a response from NHS England was read out. [Their only response to date.]

We welcome, they say, this interim report, the first of its kind in the world. These early lessons will feed into hospital and community services work including early detection of symptoms of sepsis and pneumonia prevention, constipation and epilepsy where there is significant progress. They go on to say another £1.4m more will be spent this year so that those responsible locally as well as the University of Bristol and NHS HQ can ramp up the speed and number of reviews.

There’s not much to say about this statement other than the absence of the gravitas, sensitivity, concern and commitment to action you would expect. A report that should have generated immediate and unqualified responses by the government, NHS England and others.

Ramping up the speed.

Ten minutes later I was on the red sofa with Naga and Charlie. They asked relevant, important questions.

“Who is listening?”

No one.

The label of learning disability is now the equivalent of being diagnosed with a life limiting illness. This report adds further evidence to a bloated evidence base.

The coverage that morning is generating the saddest (powerful) tweets from various families. George Julian is pulling them together here in a twitter moment.

Including Danny and Joey.

An urgent question and a bolt for the door

Today Barbara Keeley MP raised an urgent question about the report. Jeremy Hunt legged it as soon as she stood up to talk. An extraordinary moment. All that talk on December 15 2015 when the Mazars review was leaked to the BBC. Pomp and promises. The world leading champion of patient safety…

He left. He walked out. He couldn’t spare 20-30 minutes of his time to engage. His myopic and dangerous lens never more visible in this action.

The hapless and hopeless Caroline Dinenage was left to fend questions. The Minister of (no) Care. Parroting ill-informed and vacuous responses. It was a hard watch. The full transcript is here.

Questions were asked about the content of the report and the publication timing.

The Bristol team finally burst into action. Tweeting to say no, this ain’t true.

Too little too late

I’ve puzzled over the role of the Bristol team here. As a researcher myself. We’ve long known about the challenges the team have faced with a paucity of funding and unrealistic expectations. They have, in some ways, done the best they could do with that level of challenge. The problem I have is with their lack of challenge to the challenge.

Only 8% of the 1300 deaths referred to the team have been reviewed so far.

1300 people. With families, lives, history and stories. People. With mums, dads, sisters, brothers, grandparents, cousins, aunties, uncles, friends, pets. People. Some with no family. Still people. People.

Erased.

Rubbed out.

By an underfunded project that couldn’t cope with the number of people.
By the Bristol team who stood by.
By the actions of NHS England who remain silent (and so much worse).
By the action of Dinenage who was prepared to stand up and defend the indefensible.
By the silence of Jeremy Hunt.

Violence, silence and erasure.

 

17 thoughts on “Entering the labyrinth; a leder tale

  1. No trees to hide behind this time Mr. Hunt, so the only thing left to do is to run!

    In the words of the song (nearly) by Billy Ocean ‘When the going gets tough, Hunt gets going’.

  2. “I’ve puzzled over the role of the Bristol team here. As a researcher myself. We’ve long known about the challenges the team have faced with a paucity of funding and unrealistic expectations. They have, in some ways, done the best they could do with that level of challenge. The problem I have is with their lack of challenge to the challenge”

    This hits a very big nail right on the head. Where is the public outcry over NHS negligence and NHS cover-up? The silence of the academics and media on this subject shows they are all looking the other way allowing the state to literally get away with murder.

    • I think academics often can’t be political or be seen to battle with the government, but only present the facts or figures from their research.
      It is a weakness, and weak voices about facts can be ignored, or just put on the shelf with previous research reports.
      Action through good media people is needed.

  3. All the families of those whom this affects should crowdfund to get the truth published into the wider arena.

  4. My son went into hospital in December. He was very ill with fractures from a fall, and a pulmonary embolism from same. While in hospital a hoist bar used by physios whacked his good leg, severing a ligament in his knee. When I saw the balloon swelling and bruising on his knee I was told he had arthritis. I know he has not. My son told me immediately what had happened. and that the pain had been 20 (out of ten). He had not understood what was happening to him while in this hoist. Had this hoist bar, travelling hard enough to sever a ligament, hit him on the head…he would have died. What would have been the recorded cause I wonder…Downs Syndrome?
    Only a belated MRI identified the damage and proved his word.

    Five months down the line in spite of excellent PALS support, and my numerous, requests for information on the ‘how’ and ‘why’ of this , plus a meeting of heads of nursing and physio.. I still have no information at all.

    His ankle and other fractures are healed, but the knee injury has not and he cannot walk without a frame – only with difficulty and for only for a short distance. His ligament may have suffered permenantly from the lengthy delay in hospital staff recognising and investigating the injury.

    There is a noisy silence from the hospital.

    My son is well into middle age and little is to be achieved that will help him now -. I know that a complaint would sink me the usual NHS process mire …for years.. Been there before.

    Another statistic….

    • Weary Mother why on earth were the nurses in that situation afraid to tell the truth? There was an accident with the hoist full stop. This is not an hanging offence. Your son was injured. Scarred now for life. Get behind you and him an apologise and try to make amends. It is this circling of the wagons and walls of silence that harm the NHS.

      It is human to err but it is morally wrong to lie and cover up. It is also cruel to add more straw on the backs of parents when they are already carrying the heavy load of caring for someone who is unable to speak up for themselves.

  5. Thank you for your kind comments, everyone.

    I do not believe the nurses knew of the accident to my son’s knee when they diagnosed arthritis.
    The physios’ may not have known the hoist hit him? The medical staff and nurses saved my son when the odds were not good re the embolism. The ward was full of very poorly mainly old people suffering from respiratory problems. Incidents and accidents happen.

    The issues here are:

    1. that this hospital does not have a learning disability liaison service or nurse(s). The accident may have been prevented – my son could have been helped to share what happened, had there been?
    2. I met with the excellent deputy head nurse who was very open about the hospital’s attitudinal/cultural/behavioural issues. But we just talked around, and not on, the incident.
    3. I asked to meet with a Non Exec, having served 5 years in this role. I was refused.
    4. I do not believe the accident was intentional – nor that the people on the ward wished to hide the facts. I have made it clear to the excellent PALS service, a complaint would not stop the same happening to another person.

    This is why I am doggedly pursuing an explanation – both of the cause of the accident and the proposed cure.

    The problem with this hospital, as with others – is established much higher up the food chain of the NHS – where responsibility for fostering the valuing all people and applying openness and honesty when mistakes happen – lies with the Leadership.

    Mr Hunt.

  6. .cont,…….The last 5 months have been gruelling.
    My son has spent the last 6 weeks in a residential home as he could not walk or climb stairs to his flat where he lived with his flat mate – his wife – for 19 years. They have been apart for 5 months and have missed each other grievously. My son was very miserable in this home

    They have had many very bad things happen to them both.
    Their LA is not kind or generous. .at all !

    My son and his wife – he has Downs and other more recent disabilities – his wife has autism and learning disabilities. She is without guile..and is very vulnerable. They adore each other. I believe that if she did not live with my patient and wise son, her life would have been very miserable.indeed.They are each others other half – completely..

    They moved into a downstairs flat a week ago. Helped by a total star SW. Been years since I could say that.

    An OT brought a disability toilet seat with arms to the flat.

    I have been alongside my son and wife throughout these years and these recent horrible months. and from the living room of the tiny flat this week I heard them chuckling – taking turns to sit on it and make farty noises.

    Joyous to be back together again.

    How can people treat them so badly …?

  7. All of these stories of heartbreaking neglect, cruelty and cover up are intolerable. The Leder report fails to provide comfort or hope for drastic change in the foreseeable future. God bless all of the families who help and support the learning disabled throughout their challenging lives. If only the authorities knew how much joy they can bring.

  8. Just a few days after publication of the LeDeR Report, Sloven presented its ‘Future plans to develop our Secure Forensic Mental Health and Learning Disabilities Services’ at a public meeting. There is report, architectural drawing etc. at https://999crash.wordpress.com/2018/05/14/leder-and-leaders/. You can leave comments on the blog or, if preferred,there are email links to the Chair and CEO. Did they consult Sara – will leave you to guess!

  9. Pingback: Dancing around death… | mydaftlife

  10. Pingback: Five years and four months | mydaftlife

  11. Its with great sadness that I read this. The timing of release of the report is of course deliberate I’ve watched serious news and reports about the failings of this government be covered up in similar ways before. Very few people remember the DWP Fit for Work death statistics but they do remember David Cameron and his pigs head which was also a news story that day.

    My heart goes out to all of you I was on Twitter feeling the anger and dispair with you around LB’s death and the deaths of so many precious other humans who this government deems as unworthy.

    Please remember that EVERY live matters and never give up. You are an inspiration, thank you.

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