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.