‘A terrible confusion…’

We were away last week and missed the Panorama programme about the death of Jack Adcock and the erasure and then reinstatement of Dr Bawa-Garba from the medical register. There’s a lengthy piece written by Deb Cohen, a medical journalist, here. I wasn’t surprised it’s biased because a previous article by Cohen demonstrates her support for Bawa-Garba. I am surprised it’s being touted as a balanced piece of journalism by (some) medics.

As usual, raising this on twitter generates some pretty low level insults/attack.

“…suggest Sara contacts or shuts up”.

Or this:

There’s also no dot joining with sense offered by other twitter peeps.

Ho hum. Here are some reasons why I think it’s not a balanced piece of journalism.

A poor start…

The article starts with a sweeping statement;

When a junior doctor was convicted of manslaughter and struck off the medical register for her role in the death of six-year-old Jack Adcock, shockwaves reverberated through the medical profession.

There were no shockwaves reverberating through the medical profession when Bawa-Garba was found guilty of gross criminal negligence nearly three years ago. The #IamHadiza hashtag probably emerged some time late last year as medics started to realise there may be implications for their own practice.

Differential treatment

Bawa-Garba is treated differently to other people referred to within the article. She’s presented as a devoted mother, daughter and doctor with elaborate descriptions like “writing till her pen ran out of ink…”

In contrast, mention of the Adcock family is perfunctory and largely brief other than a few paragraphs capturing some of the family trauma and Jack’s character.

This difference is clear from the first mention of Jack and Bawa-Garba in which additional context is offered about the latter.

Jack Adcock wasn’t himself when he returned home from school. He later started vomiting and had diarrhoea, which continued through the night.

Trainee doctor Hadiza Bawa-Garba arrived at work expecting to be on the general paediatric ward – the ward she’d been on all week. She had only recently returned to work after having her first baby.

When Jack or his mum are mentioned sentences are typically short and factual without much or any additional commentary or explanation.

The boy’s hands and feet were cold and had a blue-grey tinge. He also had a cough.

But they [parents] say they heard very little from the hospital. They were sent a copy of the Leicester Royal Infirmary investigation and invited to discuss it, but they didn’t want to.

Cohen repeatedly fudges and fills in the gaps for Bawa-Garba. She doesn’t do this for Jack or his family. They are left with a careless ‘didn’t want to’.

‘But…’

Liberal use of ‘but’ is sprinkled throughout the article in relation to Bawa-Garba. There are few ‘buts’ about the Adcocks.

Fewer ‘buts’ are arguably better in terms of journalistic (or broader writing practice) but the ‘but’ differential suggests Cohen falling off the balanced and informed journalistic perch. (The old ‘mistake’ creeps into the first example here with a dramatic, unevidenced statement.)

But she didn’t consider that Jack might have had a more serious condition. It was a mistake she regrets to this day.

Dr Bawa-Garba looked for Jack’s blood results from the lab. She had fast-tracked them an hour-and-a-half earlier. But when she went to view them on the computer system, it had gone down.

But Dr Bawa-Garba says she wishes she had given him antibiotics sooner.

Bawa-Garba is quoted in full throughout the piece. She isn’t paraphrased, a practice which introduces doubt over authenticity and validity. The Adcocks (and others) are paraphrased.

It was only then, the Adcocks say, they heard the “true facts” and “listened to the detail” about the errors that Dr Bawa-Garba had made.

The use of minutes taken by a family friend during a meeting with the Trust as evidence also suggests questions around the validity of the family evidence. Bawa-Garba however is given space within the article to explain, account for and/or have the accounting/explaining done for her by Cohen:

“I knew that I had to get a line in him quickly to get some bloods and also give him some fluids to rehydrate him,” says Dr Bawa-Garba. He didn’t flinch when she put his cannula in.

Dr Bawa-Garba tried a number of extensions before managing to speak to someone. They read out Jack’s results and she noted them down. She says she was looking out for one particular test result called CRP, which would confirm whether Jack’s illness had been caused by bacteria or a virus. She noted it was 97, far higher than it should have been, so she circled it. But she says she was concentrating so much on the CRP that she failed to register that his creatinine and urea were also high – signalling possible kidney failure.”

Inexcusable failings like missing the significance of blood results are buried in words. Unsubstantiated words that offer flimsy excuses or explanations. Bawa-Garba was concentrating so hard on something else... Cohen almost trips over herself with excuses, explanations, ‘buts’ and the downgrading of what is basically shite practice to ‘mistakes’.

Dr Bawa-Garba had been on call for more than 12 hours when an emergency call went out for a patient who had suffered a cardiac arrest on ward 28 and doctors and nurses rushed to help. In the morning, Dr Bawa-Garba had had to intervene to stop doctors from trying to resuscitate a terminally ill boy who had a “do not resuscitate” order. She assumed it was the same boy. What she didn’t know was that Jack had subsequently been moved to the same ward as the boy who had crashed in the morning – ward 28.

A terrible confusion was about to follow.

She is seemingly oblivious to a doctor basing her medical practice on assumption and guesswork and ignoring the evidence in front of her. Ironically, Cohen seems to be doing a similar job in this article.

A terrible ‘confusion’…

Only one of the numerous failings Jack experienced that day is prefaced with a fanfare ‘failure’ statement:

It was at this point that another failing in Jack’s care occurred.

Any guesses which failing? Yep. The administration of enalapril by Jack’s mum. Cohen includes the inquest evidence that Jack’s mum acted responsibly doing this and that the impact of this drug on Jack’s condition is inconclusive. Despite this evidence she still positions this failing differently.

The inclusion of micro detail at times speaks to a determination to funnel out any whiff that Bawa-Garba did a poor job.

She asked one of the doctors in her team to chase up the results for her patients, and took on some of that doctor’s tasks.

Within this reification of Bawa-Garba’s medical ability, the work of medics is kind of lost. Work is work. Bawa-Garba was doing her job like other staff present were doing their jobs. The guilty manslaughter charge was based on the layers of exceptionally poor care Jack received. Bawa-Garba remains guilty of this charge. A vague statement about taking on some tasks does not mitigate this.

And the unsaid…

There’s so much unsaid within the article I can almost hear tumbleweed blowing through it. While I understand constraints on what can be written in terms of length/word count what is left unsaid is deeply problematic.

Cohen mentions the crowdsourced legal fees by medics which raised over £300k. She doesn’t mention the Adcocks remortgaged their house to cover their legal fees.

She refers to the negative commentary Bawa-Garba has received from members of the public on and offline without mentioning the negative commentary Nicola Adcock has experienced (blaming her for the death of her son).

She speaks to various medics and includes tweets from medics in the article. She doesn’t include interviews with, or commentary from, the wider public. She doesn’t include tweets by non-medics. Presenting ‘us’ and ‘them’ is clear in intent and execution. This is about a ‘wronged’ medic and her rattled peers. A medical guild. There is no ‘public and patient involvement’.

Cohen ignores various inconsistencies; medics belatedly joining Bawa-Garba’s fight, denouncing scapegoating while scapegoating, talking about a ‘no blame’ culture while blaming, ignoring the proceedings of a lengthy trial and appeal process, ignoring the nursing staff.

She doesn’t comment on unchecked inappropriate commentary from some medics circulating on social media.

Or how public confidence must be dented by this demonstration of arrogance, refusal to engage with evidence and self-preservation.

She doesn’t make the link to evidence around the premature deaths of learning disabled people or ask why Jack was the recipient of such exceptionally poor care

In short, Cohen has decanted and deliberately funnelled a particular version of events. In doing so, she’s captured the (medical) sediment and lost the oxygen, the life, the flavour and basic humanity. Cohen had an opportunity to demonstrate skilled, balanced and informed journalism. To explore what happened to Jack with his family, Bawa-Garba, Theresa Taylor and Isabel Amaro and relevant others. She chose instead a route of overly-sensationalising what happened or didn’t happen and erasing other parts. Perhaps feeding on or being being fed by the agitation of a group of medics who appear to have lost sight of what constitutes evidence in their determination to protect themselves.

The NMC and the fact free determination

This is going to be a detailed post as it’s important to highlight just how shite the NMC panel ‘fact determination’ about the STATT nurses is. This is about the hearing process rather than what the nurses did and didn’t do.

As background context feast your eyes on this:

Maintaining public confidence and proper professional standards is a bit of a stretch given the almost fact free determination. Instead, the 66 page document contains unsubstantiated assertions, conjecture and an erasing of evidence from previous hearings. I’ll present a few examples here to give a mcwhiffy flavour of the whole thing. The six nurses are referred to as Colleagues A-F.

Batting for the nurses

The bias throughout the document is quite simply breathtaking. Here’s the description of one nurse. The same nurse who refused to answer a question at LB’s inquest on the basis of self-incrimination (evoking Rule 22).

The panel fall over themselves in a smorgasbord of judgement and conjecture which makes ‘the dog ate my homework’ seem a reasonable excuse. The extent of this bias is beautifully captured in the following extract.

The expert witness clearly states a risk assessment should have been done and patients with epilepsy should be within physical reach at all times. This reiterates the expert witness evidence from LB’s inquest and the GMC hearing. The panel attempt to bury this unassailable evidence in a set of absurd and discrediting sentences. Under some pressure… declined to express a view… She could not say…

How can she say what the outcome of an assessment might have been when it wasn’t done? Putting her ‘under some pressure’ is also a chilling comment.

A very partial engagement with ‘evidence’

The pesky facts that get in the way of the chosen panel narrative are ignored or buried as we saw above. They argue at length that the nurses could not have known LB was having seizures in the unit. That I told them LB had a seizure in May is erased. The fact [this is a fact] that I emailed the unit three days before LB died to say I was concerned he had been drowsy at the weekend is dismissed using evidence from the CTM notes.

This handily ignores the RIO notes where staff reported LB was subdued and red-eyed over that weekend [more facts]. A few paragraphs later the RIO notes are used as (quote) ‘positive evidence’ to show that a nurse made a verruca care plan for LB. The determination (see what I did there) of the panel to rule out any whiff that the nurses should have done anything differently because LB’s epilepsy was ‘well controlled’ is undermined by the fact [yep, another one] that they all knew he had had a seizure in January. Just a few months earlier. This document is more about annihilating actual facts than determining them.

The old language giveaway

There is a littering of language which demonstrates the lack of panel objectivity. I don’t know if this is typical of an NMC panel determination but sweet baby cheesus I hope not. Tom has been an employee at Yellow Submarine for 8 months now and his work involves writing reports. He knows you have to be objective with the language you use. A quick google shows the panel chair has been doing the job for way more than eight months (and I suspect is considerably older than 19) so I can only assume using words like ‘unsurprisingly’ must be commonplace among NMC panel determinations.

A further example can be seen in the following two paragraphs.

The first sentence is again absurd. How could there be evidence of something that didn’t happen? Then there is an emphatic ‘precisely’ underlining apparent good nursing practice. This is followed with a mealy mouthed ‘may have been incorrect’ in the second paragraph which makes me want to gouge my eyes out it’s so deeply offensive. It was incorrect. That’s why LB is fucking dead. [Howl]

Blame, blame and more blame

Blame rears its ugly head again. Particularly hideous given the judgement in the HSE criminal prosecution stated there.was.nothing.more.we.could.have.done. Blaming us again is astonishingly cruel.

Without any apparent reflection the panel say that “the undisputed evidence before the panel is that it could be very difficult to engage with Patient 1″. Undisputed evidence. Just a quick reminder that these nurses are specialist learning disability nurses. All they could get was ‘a grunt and a nod’

‘It would appear’ appears throughout the document in defence of the nurses. In the following extract ‘it would appear there was limited additional information that could otherwise have been sought from the family’. How can they possibly make this judgement? One bit of evidence (that destroyed part of my already savaged heart) underlined how little understanding the panel (and nursing staff) had of LB:

In his oral evidence, Colleague B confirmed Patient 1’s fear of gangs of youths and his reluctance to go out alone.

He didn’t go out alone. He never had. This is a pretty substantial piece of information the nurses were missing.

We though (‘they’ ‘they’ ‘they’) could have/should have done more.

We visited too much (‘virtually every day’) and there is a juicy third hand suggestion that I was so difficult the unit had to introduce a telephone triage system to cope with me.

Venturing further into the realms of the absurd

The final example takes absurdity to a new level. Yep. It is possible.

One charge was that the nurses didn’t make a planned referral to the epilepsy nurse. It turns out the person they all thought was the epilepsy nurse (Miss 12), wasn’t. [I know]. With a palpable flourish, the panel dismiss the charge. There was no epilepsy nurse to refer to. Do you hear me? And this is a fact. A fact I tell you. The over-use of the word ‘fact’ in this paragraph kind of suggests the panel know they are on flaky ground.

I can almost sense weariness from Mr Hoskins (who I assume is the NMC barrister). Such twisted, twisted logic.

I got as far as p18/66 with this analysis. It continues in the same vein. Grim, biased, childish nonsense. I’m sickened that this could be considered to be of ‘proper professional standards’ in any way shape or form. When you add in the fact [yep] this has taken five years and during the interminable process the NMC shared our personal details with all six nurses and their counsels twice, it’s very clear this body ain’t fit for purpose.

Sharks on the rooftops

I went for a wander round Headington late afternoon earlier. In part to practice taking photos with my new camera and because I remain so blooming upset/agitated by the description of LB in the NMC hearing ‘determination of (un)facts’. How dare a fucking ‘panel’ of a nurse and two lay people who never met LB and have done nothing to try to understand anything about him be so callously disrespectful of who he was.

No doubt they will argue their determination is based on evidence but evidence is not statements like so and so ‘seems to suggest that…’

Distressing, unnecessary and cruel.

In the late afternoon sun I wandered past the Co-op where LB smashed doing the shopping back in the day. Still makes me chuckle. On to Posh Fish, a go-to chippy for 20 years though our visits have dropped to rarely as the kids have grown older. My mum and dad took Rosie, Tom and LB there for some nosh on the day of my viva at Warwick in 2006. Rich and I pitched up later to have a celebratory beer with them. Such a joyful day. Posh Fish rocked. Reach for the stars stuff it seemed at the time.

Sharks on the rooftops.

Then round to the other Headington shark. The one we used to go and look at when the kids were tots. Rosie was convinced for years it had been a fish and chip shop. I think maybe as a way of trying to make sense of an enormous shark apparently falling head first from the sky through the roof of a terraced house.

At the end of the shark road is the funeral home LB was in before his funeral. Well in and out of because of the balls up over his post mortem. Behind the side window is the ‘viewing room’ or chapel of rest. It’s just a room really but a room completely and devastatingly not like any other room.

[For geography nerds, the John Radcliffe Hospital is up the road there on the left.]

As I waited to cross the road directly opposite a coach went passed blocking my view. Oh my…

Angel Executive Travel. No.fucking.way.

This coach passed me on the day of LB’s funeral. Walking in distress and agitation in the park across the road (the same road). A different type/flavour/density? of distress and agitation.

I didn’t know whether to laugh, cry or punch the air.

I’m taking air punching.

At the end of a week in which professional sharks (not our local fun and quirky ones) have once again been circling for blood and behaving like fucking spunktrumpetweeblewarblers we’re not going to let LB’s memory be sullied in a crass, ill-informed and deeply biased report.

On Friday we’re back to London to fight the fucking fight that never, ever seems to end; to try to establish the humanity of our fun, quirky and beautiful children.

‘A grunt and a nod…’

The Nursing and Midwifery Council produced its determination of facts yesterday. Six nurses referred by Southern Health who also decided the psychiatrist had done no wrong. (We referred her. She was eventually suspended for 12 months by the Medical Practitioner Tribunal Service panel last November, saved in part from being struck off because she worked in ‘the difficult field of learning disabilities’.)

The difficult field of learning disabilities

The NMC hearings have been going on for a few months now. We boycotted them. We didn’t think the nurses should have been referred (and the NMC sploshed our personal details to them and others). It turns out the NMC panel is as unenlightened as the MPTS panel.

The determination is 66 pages long and deeply repetitive as charges and evidence overlap. I seriously hope a dedicated and brilliant doctoral student will one day meticulously analyse the content of these disciplinary hearing documents which are laden with assumptions, snide judgements, some pontification and ignorance.

The most distressing part (these documents always rip your heart out, punch it repeatedly and intricately slice it with a Stanley knife seasoned with chilli and lime) is the callous dismissal of LB as someone ‘too difficult to make a care plan with’.

No one is too difficult to make a care plan with.

A sort of peripheral (that is, never engaged with him because he wasn’t ‘assigned to her’) learning disability nurse giving evidence said LB ‘didn’t verbally communicate a lot, he’d sit and listen and you’d get a grunt and a nod but you wouldn’t get much to go on’.

You fucking what? [Howl]

The panel accepted this statement without question and thought it important enough to regurgitate in the determination. It will be on public record, ironically demonstrating where serious nursing issues lie. With no comment or reflection.

How can an NMC panel be so complicit in denying LB’s humanity?

Why are these panels so fucking ignorant?

Why? As LB would ask, repeatedly.

The determination goes on to consider the charge that we were unjustifiably restricted from visiting LB by having to ring and ask permission to visit him in the unit. [There were advertised visiting times.]

I dunno.

Phoning to ask permission to visit a patient? Within visiting hours. Daily. For 106 days….

Ahhh. Difficult mum stuff again. They really can’t help themselves. Dismissed at LB’s inquest, publicly retracted by Southern Health in June 2016, and summarily dismissed at the Health and Safety Executive hearing in March 2018 (below), mother blame is back again. And again…

Tsk, said the panel, oblivious to this history. Oblivious to LB dying. [He died.] Oblivious to any understanding of what this experience must be like. Oblivious to anything. Including an almost complete lack of off site visits and therapeutic sessions that family visits could ‘clash with’.

The charge was unproved. (“difficult”) Relative A clearly misunderstood the point of having to phone and ask. This was no (quote) “unjustified” restriction. It was justified given the frequency of the family visits.

We visited too much.

A new coating of mother-blame assimilated into these disciplinary hearings without reflection. Do panel members ever venture out into daylight? Christ. Are these panels linked to the anonymous ‘panels’ that make decisions around budgets and other stuff when our kids turn 18? Who are these panel people? How do you become one? Are they middle class (typically white) people with exclusive life experiences?

Does anyone scrutinise panel membership?

There’s no logic, sensitivity or apparent thought underpinning this latest determination. And no dot joining between the evidence from other hearings (or around the deaths of Edward, Richard, Danny, Thomas, Oliver, etc etc etc). Each person is singled out as an atomised being, subjected to different, unfathomable, barbaric rules, actions and judgements. Without any apparent recognition or awareness by ‘panels’, coroners, ‘independent investigators’…

Why are these dots so hard to join?

Ordinary people (and juries) get it.

Don’t poke the beast…

The footies on. Somewhere. Everywhere, it’s so damn quiet. Home alone with Bess. Listening to music. Head spinning from so much happening and not happening. LB’s five year death anniversary speedily approaching. The day before NHS 70th birthday celebrations. I feel queasy already. Hunt and NHS England remain silent about the leder review. Bouncing back FOI requests as too expensive. Refusing to comment.

An extraordinary level of engineered wilful disinterest.

Non-disclosure

I put in a Subject Access Request a month ago asking to see Valerie Murphy’s statement for the MPTS hearing. She read my statement. Her barrister commented on it during his illness inducing cross-examination.

The answer came back today:

“I do not believe there is information that is disclosable under the DPA”. Oh. The GMC will however disclose extracts relating to LB if I sign a confidentiality agreement.

Murphy had no such restrictions. She can say whatever she wants about my statement. To whoever she chooses.

And so it continues..

A week ago a bizarre comment was posted on justiceforLB.org:

The answer to George’s question was this:

Spencer and Murphy studied at the same university at the same time.

Oh my.

[Howl].

We know snarky (or worse) and largely unchallenged discussions go on behind the password protected doctors.net (and I’m sure other forums). These started within weeks of LB’s death. Mother (and other) blame has had a remarkably unremitting purchase in health, social care, education circles for decades now. Noted and discussed at length by families. A steely silence (apart from the odd dissenter) from professionals who must recognise this shite for what it is.

These random, unexpected and typically incoherent attacks are pretty hard to endure. Our boy died. He died. You just don’t seem to understand this. He was 18. Can you imagine your child dying a preventable death in the ‘care’ of the NHS?

A beloved and beautiful child. Dying. A preventable death.

Can you begin to imagine?

Why don’t you fucking try to imagine?

 

 

 

 

 

 

 

Five years and four months

Time.

Approaching five years since LB died has been weighing heavily. Five years. Half a decade. Mostly taken up with a brutal fight for accountability. Leaving us barely standing at times. Irreparable, inexcusable damage and destruction.

Five years.

Five years since I last hung out with, touched, talked with, loved with my eyes as well as my heart, my beautiful, extraordinary boy.

Five years.

The Williams Review

Today the rapid policy review ‘Gross Negligence Manslaughter in Healthcare’ report by Norman Williams was published. Four months in the making. A ‘rapid policy’ route. Four months…

Four months.

Four months of hearing from ‘many individuals and organisations. Bereaved families, healthcare professionals and their representative bodies, regulators, lawyers, investigatory and prosecutorial authorities, as well as members of the public…’

A review conducted, written, signed, stamped and published within four months.

Four months.

Shorter than the length of time NHS England sat on the leder review before sneakily publishing it in May.

Four months.

And five years.

#bastards

Legacy, power and the in-between bits

On Friday a Craft Activism day was held as part of the Oxford Brookes Think Human festival. The #JusticeforLB quilt was on display for the first time in 18 months and Janet Read, one of the quilting team of four, was a presenter. Other presenters included Karen Nickell talking about textile art during the Troubles in Northern Ireland, and Roxanne Ellis, who founded the Women’s Quilt celebrating the lives of 598 women killed by men between 2009-15.

The event was held at the Avado Gallery in Oxford.

It was blooming moving and powerful listening to Janet tell the story behind the making of the quilt.

Concerns about whether it may turn out to be a #JusticeforLB tea towel if not enough patches were sent. The bundle of patches from the Messy Church group arriving with still wet glue. Letters sent with stories and concerns around whether patches might not be ‘good enough’. The stretching of the patch size template… The small detail that Janet, Margaret Taylor and Janis Firminger had never made a quilt before.

Janet said when they first laid the patches out on the floor, they realised they had been given a gift. And cried.

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Janet’s sister Jean Draper, a textile artist, was drafted in to help and the just under 300 patches from people aged 3-80 were transformed into a quilt of beauty, spontaneity and power.

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During Janet’s talk I began to think about the in-between bits of the quilt. The individual patches have kind of eclipsed the quilting work. The joining together of different shaped patches into a spectacular whole and the artistic endeavour this involved.

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Karen Nickell earlier talked about how invisible much textile art is, stored away in suitcases or attics. Undervalued within the art world (or dismissed as ‘soft furnishings’). The enormity of this quilt, like other objects of protest stitching, was breathtaking. Joanne Begiato rounded the event off reflecting on the ‘time traveller’ dimension of these objects which have a power beyond those who make them.

Bang on.

A Doughty Street gig

A couple of weeks ago I was involved in a Doughty Street evening event about strategic litigation. I didn’t know what this was but Kids for Law have helpfully produced three short films explaining it; using the law as a tool for social justice. I was asked to speak about the legacy of #JusticeforLB.

‘Ooh er’, I thought. ‘Legacy?’

The (attempted non) publication of the Leder review weeks earlier came to mind. How committed journalists worked to make a ‘buried’ report newsworthy. How editors were willing to take a punt on the unseen report. The passion and dedication demonstrated on that dark day.

This is an example of the legacy of the extraordinary efforts of families and allies to make the premature deaths of their daughters, sons, sisters, brothers, aunties, uncles, parents known and cared about. These issues have become more prominent, connections have been made, networks developed and countless people have stepped up to collaborate and be counted.

Another example is the truly wondrous pop up #CaminoLB walks that took place across the UK when we were walking the #JusticeforLB bus to Santiago. I can’t describe how moving it was to facetime brilliantly cheerful groups of people, many of whom had never met before, from the Camino. London, Cheshire, Kent, Devon, Birmingham…

Legacy is an important strand of social action I learned during the evening. Or steps made can wither away. I suppose, like the quilt, it’s now about looking beyond the headline patches. We can’t bottle the magic of #JusticeforLB but we can certainly start to think a bit more about the in-between bits. How it worked and why.

Dancing around death…

Ben Morris, the STATT unit manager, was suspended for 12 months today at the beginning of the Nursing and Midwifery Council hearings. He admitted 17 charges and ‘accepted his fitness to practise as a nurse is impaired because of his past, serious misconduct’. I read the consensual panel determination (a 43 page document capturing the charges, admission of guilt and the now typically late to the table remorse) over the weekend.

More pieces added to the map of we’ll never ever know.

Morris offered no explanation as to why he didn’t do the things he should have done (other than ‘working’ beyond his skill set). He didn’t blame anyone.

The shadowy figures of clinical commissioners and Oxfordshire County Council dance around the edges of these documents. Again.

Quality reviews screaming ‘ACT NOW’.

Ignored.

Why the fuck didn’t you do something?

No engagement. No interest. No care.

Hollow, brutal and public erasure of humanity.

#Leder review

 

 

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.