Category Archives: General Medical Council

The full panoply

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A rare post. I’m on leave for a week. At home. Writing what I’m calling ‘book 2’ about families with disabled children (a contracted gig). This has involved sifting back through time, space, context, hisory, stuff. I kind of got stuck revisiting the documentary The Silent Minority made by Nigel Evans in 1981. About St Lawrence’s Hospital, Caterham and Borocourt Hospital near Reading. Long stay institutions for learning disabled children and adults.

We moved near to Borocourt Hospital in 1982.

Sun drenched summers, fun and laughter. Lager and black booze filled evenings and country pub lock-ins. A different terrain to our Southend childhood. Borocourt standing to attention faintly in the background. Carelessly, thoughtlessly ignored. A magnificently austere red brick gothic building. A place that almost bothered me. Borocourt people muttered.

Nigel Evans is someone I wish I’d met. The humanity and humour he captures in this documentary alongside footage that almost demands a trigger warning before viewing is extraordinary. ‘Inmates’ offer warm, heartbreaking and thoughtful commentary:

Perhaps (I dunno, I found it all beyond moving, harrowing and devastating) the breathtaking stomach punch was when staff noticed that Terry Green was trying to move the wheels of the chair he was sitting in but couldn’t quite reach them. They sorted a different sized chair (temporarily) for him.

Evans describes how

After 40 years in bed, 10 years on a bean bag, Terry Green takes his first inching steps towards independence. For decades the full panoply of the medical profession has tripped through this ward and nobody had the wit, the initiative or imagination to give Terry this opportunity. This kind of neglect invites a whole new definition of the phrase ‘mental handicap’.

No wit, initiative or imagination… The full panoply of the medical profession.

I had to google ‘panoply’. It means ‘an impressive collection’. My respect for Evans speaking these words grew exponentially. And, with a bit more digging, I found out he did some fudging in terms of gaining consent for the film (according to the enraged health boards of Surrey and Reading). It was in the public interest he said unapologetically.

It was. And it is. We have a public and unassailable record of the treatment of learning disabled people in the 1980s.

Today further details of the latest (now already dated while still not published) Leder annual review were leaked by the Health Service Journal (@rebeccasmt). The Times did a piece on Sunday (@RosamundUrwin) highlighting the lowlights. The HSJ offered the 12 recommendations with commentary.

The report documents the usual shite. 38% of deaths haven’t been allocated a reviewer, consistently dire premature mortality rates and more. The recommendations are truly grim. And include a call for guidance that ‘learning disabilities’ should never be an acceptable rationale for ‘do not resuscitate’ or used as the underlying or only cause of death on a death certificate. Forty years after Nigel Evans called out the medical profession for its inability to be human.

With unexpectedly fab weather and ‘holiday’ time on my hands I’ve reclaimed a patio area Rich built in the corner of our garden 15 odd years ago. A bit of ivy and other weed/rubbish clearance and I’ve ended up with a small, perfectly formed, shaded outdoor office space to sit and work in. The main tree, a Canadian maple we were gifted as a sapling from a garden across town, has in the intervening years grown to form a canopy of brilliantly bright leaves merging with an overflowing grapevine from next door.

This has distracted me this afternoon. My brain scrambling, jumbling and stumbling over the full panoply, the ‘impressive collection’ of people who still, 40 long years on, think learning disability is a cause of death or a reason not to resuscitate.

And our beautiful, beautiful boy, who spent hours in this garden each summer as the Maple tree slowly grew, one of the many dead. Dead. Not by ‘learning disability’ (you ignorant bastards). Death by the full panoply of the medical and other professions.

“A one off” and a week that was…

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This has been a right old week. A week of something. Stuff. A maelstrom of emotions and some fucking shite. Tuesday involved a serious schlep to London. First stop a British Association of Social Work conference at their newly opened building in Kentish Town. A talk and run jobby. I was first on. Safeguarding and human rights: what do families need from social work? What do we need? Easy peas:

Thoughtfulness, understanding, knowledge, integrity,

action, transparency and honesty.

The questions were a joy and included “What music did LB like?” I legged it to Westminster to meet with Caroline Dinenage (Minister for State for Health and Social Care). We had a chewy discussion around learning disability/autism related issues together with the lead bod from the Department of Health. I left feeling (surprisingly) heartened that Caroline D has heart, grit and determination.

Sticking around for my next gig, I went up to the public gallery to watch some of May’s brexit debate. The last time I was up in that cosy gallery was watching Evan Harris, then Oxford Lib Dem MP, deliver something about learning disability right back in the day. I remember painting a slogan on a tired old sheet on the kitchen floor one evening and waiting with the large banner at the wrong bus stop outside the Thornhill Park and Ride. Relieved when a mini bus hesitantly pulled over and welcomed me in. The first time I hooked up with My Life My Choice members.

Funny old world.

It was grotesquely mesmerising to watch the non-debate ‘live’ in the Commons. I then headed to Committee Room 10 for the INQUEST launch of Legal Aid for Inquests: Now or Never! campaign. Despite political distractions the room was packed with over 40 bereaved families, members of both Houses, journalists and third sector representatives. Bishop James did a sensitive and exemplary job of chairing a passionate and angry meeting. Three of us – Tanya El-Keria whose daughter Amy died in the Priory and Tellicia whose brother Kevin Clarke died after being restrained by police in London – spoke before the Minister of Justice, Lucy Frazer, responded. She didn’t shine. Trying to defend the government’s baffling refusal to introduce automatic legal aid for families at inquests despite weighty evidence was never going to work.

A summary of the launch by Hardeep Matharu is here. Despite the lacklustre performance by Frazer, captured on each face below, the sincerity, determination and rage in the room was palpable. Labour shadow minister Richard Burgon pledged to reform funding for state related deaths and there was a strong feeling that this is a battle that will (so fucking rightly) be won.

Then to Thursday and the re-opening of the disciplinary hearing into Valerie Murphy’s (LB’s psychiatrist) disciplinary hearing. She had been suspended for 12 months after a marathon hearing that stretched over seven months. She wasn’t struck off partly because of the ‘mitigating circumstances’ of working in the field of learning disability [I know]. Her catastrophic failings covered pretty much every bit of clinical practice. Including the very basics of epilepsy care.

This particular ‘medical’ note haunts me. Not just because it captures her clinical ineptitude. The wording reminds me of commentary about rare or endangered animals.

Evidence of how deeply LB was failed is written into and stamped across pretty much every communication captured during the 107 days he spent in that place and in every review since. The saddest piece of ‘new’ info that emerged from the original hearing for me, was that Murphy didn’t go on holiday until the Saturday after LB was admitted on the Tuesday night (March 19 2013).

We naively assumed she was on leave when he was admitted which is why she didn’t meet him until almost mid-April. She simply didn’t bother to wander over and see a young man admitted in a state of intense crisis before her two week holiday.

This is a tormented sadness (not the right words but no appropriate words exist). She was clearly so fucking crap that it didn’t ‘matter’ when she met him. [I struggle to type these words]. It really didn’t matter.

I can’t (I refuse to) shake off the puzzlement and heartache of how a specialist learning disability (responsible) clinician could ignore a newly admitted patient knowing she was about to go on leave for two weeks. My work doesn’t affect people’s lives/health but I prepare for holiday absence and colleagues do the same. I can’t understand why or how she could do this. [And before the thankfully small portion of medic defenders start with ‘she was so busy’ shite she wasn’t. There were four other patients.]

Murphy pitched up in Manchester yesterday with her potpourri of dry and smelly bits to woo the panel. They swallowed it and decided her fitness to practice was no longer impaired. Her abysmal non care of LB was a “one off”. No questions asked about how this could possibly be or (as chillingly) if it was, why?

The panel in a fuck you statement announced that ‘a reasonable and well informed member of the public’ would agree with their decision to find Murphy not impaired.

They are wrong.

It’s impossible to articulate the intense distress and harm these hearings generate for bereaved families. I understand they are stressful and distressing for health or social care professionals. I get that. As bad as professionals may feel, they typically go home to their families though. They don’t live with an intense pain that defies articulation, loss and an absence that regularly winds, wounds, generates panic, anxiety or worse. They don’t desperately try to hold onto the smells temporarily woven into clothing, visit the earthy spaces where their children are buried or scattered, and regularly howl at the sky.

They simply don’t.

Finally, two brighter developments. As the week unfolded, I missed a call out on twitter about the naming of Eddie Stobart lorries and the brilliant and collective responses to this captured by @Karachrome in this post. I can only imagine what an Eddie Stobart lorry named after LB would mean.

And this morning Julia Unwin mentioned LB in her keynote talk at the Nuffield Trust annual Health Policy Summit. The magic, the joy, the fucking kick ass ‘we can do this’ collective action continues.

Let’s do it.

Crocodile tears and the ‘do nothing’ advice

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Early morning, a column by Clare Gerada appeared in my twitter timeline. Gerada is an ex-chair of the Royal College of GPs so no fly by night. She campaigns (as part of a heavily, heavily NHS England funded gig ‘Practitioner Health’) about doctors’ mental health. This week there has been coverage of doctor suicides with some loose reporting of figures (there were 81 suicides not 430*). Gerada is trying to extend the Practitioner Health service beyond London.

I dunno. You can sit on either side of the fence, or on it. As is too often the case with the NHS following the dosh is an instructive exercise.

‘Sensible advice’ say some replies to Gerada’s column. ‘Best advice I’ve ever seen…’

The heading kind of made my eyes water. Those blooming tears. Still.

‘Do nothing… immediately.’ I can only now imagine this ‘luxury’ over the past five years. There is no space to ‘Do nothing… immediately‘ for families. We face years of unrelenting, unremitting fighting, policing, and uncovering. Pretty much every NHS related scandal is the outcome of persistent, committed and astonishing actions by families and their allies. Activity that allows no downtime in a grief drenched space.

‘Do nothing… immediately’

‘When a complaint lands on your desk…’ says Gerada. Deliberately disembodying the ‘complaint’ from the person making it. And the space in which it materialises.

The person (human) who probably never dreamed of making a ‘complaint’ to the NHS. I mean why would you? Why would any of us**? It’s a national institution. A treasure. Free healthcare at the point of delivery and all that…

How often do we actually make a complaint about stuff? About trains, airlines, education, retail outlets, telecoms, restaurants? Why would any of us want to make an official complaint against the NHS? What would make us feel driven do this? Complaints in any setting are important for improving service. Complaints in the NHS are crucial because they involve lives.

For Gerada the complaint isn’t delivered or received. It ‘lands’ on the workspace. Disconnected from action and intent. Allowing her to (brutally) focus solely on the practitioner.

‘Do nothing’, she advises. ‘If you can, take the rest of the day off.’ Take the rest of the day off…

‘Do not rant and rave…’ I still can’t understand why the assumed position of a medic would be to rant and ‘rave’ about a complaint. Getting a 3/5 mark on student evaluations is enough to cause some right old soul searching/scrutiny of our learning and teaching practice at work (even after 10 years). The idea we would leap straight to defence of our practice – to ranting and raving – is baffling.

‘Wait for the first waves of shock to pass…’ Still no consideration of the person or family who made the complaint. Of what they may be experiencing; their pain, distress, grief. The piece descends into a google translate type extract. Clunky. Missing meaning. Swerving on substance. With the odd hand grenade planted between platitudes: ‘At the earliest opportunity contact your medical defence organisation (even if the complaint is trivial)’.

In short, Gerada’s advice seems to be ignore the substance of the complaint, buggar off for the rest of day and get your legal defence ducks in line. She ends with ‘don’t suffer in silence and don’t take it personally’.

Wow. Just extraordinary ‘advice’.

She has previous on complaining.

And clearly remains obdurate on the subject. A road traffic accident… From last night.

What I don’t understand is why there remains little critical (in a good way) and open questioning of what is clearly shite and offensive advice by medics. It’s as if once harm has happened or been done, the drawbridge is raised and the profession becomes a pack.

Where is the thought, the reflection. Humility. Or challenge?

*This is in no way to dismiss, belittle or otherwise every health professional who has died.

** For the sake of transparency, I made a complaint to Southern Health NHS Trust when LB was in the unit. I said they didn’t listen to my concerns about his care. About 5 days before he drowned in the bath I was told it was not upheld.

‘A terrible confusion…’

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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

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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

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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…’

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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…

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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?

 

 

 

 

 

 

 

Housecoats, aprons and mucky labour

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Captivated by the women of Galicia along the last section of #CaminoLB.

“Can I take your photo?” I asked pointing at my camera. A few said no. Others stood tall. Looking me in the eye with quiet confidence. There was no artifice or prevarication.

Incredible, beautiful faces.

Lines. Life carvings. Contours of determination, humour, dignity. Resilience. Well earned, authentic resilience.

Glimpses of triumph and more. So many stories.

Housecoats, aprons and mucky labour.

Back to work tomorrow.  It’s been a long five years.


Smashing it

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We did it. A historic judgement by Mr Justice Stuart-Smith on Monday morning which involved a £2m fine for Sloven Health. LB and TJ Colvin were treated with the respect they deserve. Justice was served. We had been prepared that the sum of money was not as important as the Judge’s comments would carry more weight. As it was Mr Justice smashed both. He carefully read out a judgement so drenched in sense and fairness it was extraordinary to listen to. In a court again packed with JusticeforLB campaigners including several members of My Life My Choice.

The sensitivity and commitment of the Judge, Bernard, the HSE team and the media who attended (many of whom have followed the campaign over the years) were also extraordinary. Kindnesses that will stay with us.

Our statement about the prosecution can be read here.

Michael Buchanan’s news film with beautiful video clips of LB is here.

A few thoughts and outstanding questions

We were surprised (and pleased) to hear Jeremy Corbyn raise LB, TJ and the campaign in Prime Minister’s Questions yesterday. May also praised the efforts of the families. This is good but serious questions remain about the failure of the various regulators/bodies to act on what the Judge described as ‘the dark years‘ of Sloven. Jeremy Hunt is captured in the Commons looking slightly uncomfortable. So he should. It’s not the job of bereaved families to ‘uncover the serious systemic problems‘ in health and social care.

Mr Justice describes ‘very grave concern‘ that endemic failures were allowed to arise at all and to persist for so long. I mean why was this? Do senior people leave sense on a middle rung of the ladder to success? Are critical scrutiny and self reflection dirty words in senior circles? Is the culture so dire that no one can offer challenge to unspeakable actions?

Many of the mountains of email exchanges we have through Freedom of Information requests include abysmal statements and the complete absence of challenge to these statements by numerous people. Norman Lamb stands out as someone who stood firm, recognised how wrong it was and acted. And made sure action happened.

We have in the Justice shed a long standing plan to hold an exhibition plastering this documentation around a cavernous space to allow people to wander around and read the levels of shite and what families are forced to endure. What is said and not said. Replicated in too many other cases.

Looking back across the five years there was a wilful refusal by NHS Improvement, NHS England, the CQC and Jeremy Hunt to act. One example. Two referrals (yes two) of Katrina Percy to the CQC’s Fitness to Practice panel in 2015 and 2016.

1. Mike Richards sent  a ‘fuck off she’s fine’ letter months later (the referral had got lost). 2. After chasing we were told the fitness panel would wait for NHS Improvement’s trouble-shooting Chair Tim Smart’s exec board capability review. Smart bafflingly concluded the board were all fine. Percy again exonerated.

NHS Improvement and the rest continued to slumber.

Point 4 of the judgment states: ‘When the systemic problems were finally recognised, a welcome realism entered the Trust’s appreciation of what happened‘. This interpretation glosses over the crucial point that it was the replacement of ‘pay off Percy’ which enabled the (slow) recognition of failings. She and her turgid, complacent and arrogant board have got off scot free.

Unlike the MPTS panel which decided to include the ‘difficult field of learning disability’ as two mitigating factors in deciding to suspend Valerie Murphy, Mr Justice states ‘the fact that the Trust’s breaches were most likely to affect vulnerable patients is an aggravating factor‘. Of course it is. That he simply saw LB and TJ as human is at the heart of his narrative and judgement. And what has been largely lacking from the broader NHS related responses.

The sentence is here. The biggest Health and Safety related prosecution fine in the history of the NHS.

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There has been some unsurprising meithering on social media about this fine. Yesterday we found out that Sloven quietly sold the Ridgeway Centre in High Wycombe last November. This was one of the spoils they took with them having lost the Oxford contract because they were so shite. A sale that netted them a tawdry sum of £2.3m. Dosh taken from Oxfordshire provision.

It’s a shame the £2m can’t be channelled  into providing groundbreaking provision for LB’s peers some of whom continue to flounder without appropriate support in county.  ‘A TJ and Connor centre of life, love, fun and brilliance’. But that’s out of our hands.

Mr Justice was spot on with his ‘just and proportionate outcome‘.

Finally

We’re pretty much done now. We did what we set out to do and whilst none of it will bring back our beautiful boy we collectively did a bloody good job. As Mark Neary reflected yesterday we may have changed the way campaigns are run.

One of the central features of the campaign has been the extraordinary live tweeting of the various hearings by George Julian. She is now looking into a more sustainable way of doing this for other families. Making dirty practices by public sector funded and instructed counsels visible in real time is priceless. If you can spare £1 a month (or more) please fill in the form on the post and let George know.

I hope a light will be shone on the persistent cover up of the ‘dark years’, the culpability of Percy and the board and that those more widely implicated will absorb some of Mr J’s sense, fairness and integrity and now speak out. Critical scrutiny, transparency and honesty is essential for safe, effective and inclusive health and social care.

I’m off to Spain tomorrow with various #JusticeforLB campaigners to walk the LB bus the last 170 miles to Santiago de Compostela*.

After that it’s back to work. And life.

Thanks, thanks and many more thanks – so many thanks – to everyone who did and kept doing what they could and so much more. We seriously smashed it.

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*UK walks are also taking place. Rumour has it, in another magical twist, Mr Fortune, Winnie Betsva’s barrister from the inquest is doing the Devon walk.