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?

 

 

 

 

 

 

 

Housecoats, aprons and mucky labour

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.

 

 

 

Light and the fatberg ingredients

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Crumbs. I’m feeling brighter. I’d anticipated a plummet to rock bottom land in the lead up to the Health and Safety Executive (HSE) sentencing hearing next Monday and Tuesday. A month after the MPTS sanction decision for Valerie Murphy. Two years after LB’s two week inquest. Five years to the day we took him to the STATT unit that cold, dark Tuesday evening on March 19 2013 [howl].

Other than the odd trip to London or Oxford I’ve been hanging out in the Justice shed for weeks. Crocheting.

A recognisable blanket of brightly coloured granny squares has emerged (will add a picture in the morning when it’s daylight). Griefcast has become my (late to the party) go to soundtrack. The (sometimes) humorous reflections of death and grief by comedians has been a gentle and soothing backdrop to the wool action.

I feel brighter.

Tom and I did a news interview this morning in advance of next weeks hearing. In our kitchen. The setting for numerous recordings over the last five years.

Doors have since fallen off cupboards and and half arsed drawer fronts carefully propped up. In preparation for the visit I did a bit of cleaning this morning.

“Mum! It smells really funny down here!” shouted Tom while I was upstairs getting out of my crochet uniform of grey tracky bottoms and a worn out old woolly red jumper.

“Ah I chucked a load of bleach down the sink. It might be that!” I replied. Visions of some right old ripe and until now undisturbed fatberg ingredients fighting back in the u-bend.

We ended up talking about five years of campaigning. Five years. Five of Tom’s seven teenage years. Pretty much the first five of Rosie, Will and Owen’s adult years. Half a decade. Half a decade of repeatedly poring over the hideous and distressing details surrounding LB’s death. Over and over and over again.

Of being blamed and vilified. Of persistent fat berg ingredients.

The interview was unexpectedly positive. There are no more nasties to come. No more bundle pages to turn over and ‘go to’.  No more oaths to swear. No more vicious counsels to face. We’re part of the audience for the hearing next week. And Sloven have pleaded guilty.

Tom made a comment at the end of the interview about the style of the campaign; the humour, creativity and fun. He was spot on.We’ve collectively written, blogged, spoken, tweeted, live-tweeted, presented, met, challenged, shouted, scrutinised, counted, drawn, produced, filmed, sung, shared, kayaked, run, walked, danced, travelled, stitched, photographed, baked, drunk, laughed, cried, wept, hugged, raged and laughed more.

Whatever happens next week we’ve done LB and all the other dudes proud.

Light.

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Battery by bundle and the MPTS transcript

L1032400-3We received copies of the MPTS tribunal hearing transcripts yesterday. I strangely felt some relief reading the finer detail of what unfolded that day last summer. While my brain and heart wept in inept tandem alongside a rage I’m kind of scared of, I could at least better understand why I ended up unwell.  We all knew it was traumatic at the time – Rich and Rosie, Charlotte Haworth Hird, George Julian live tweeting – but my memory was hazy. Now I know.

I’m adding detail here to the post I wrote about the experience; Writing Trauma. Long post warning but this is to give families some idea of what they may face in similar circumstances. And to document how barbaric the (unchecked) processes are.

A few general thoughts:

  1. You don’t typically see medical notes before someone dies. So if for example a psychiatrist jots in medical notes ‘unwitnessed seizure’ the fact you didn’t make it clear the type of seizure you’re ‘pretty sure’ it was is because you’re going through a lot of information and, at that point, it isn’t the most important detail. Once someone dies or experiences serious harm these notes become ‘hard evidence’ despite always being a partial account.
  2. It’s hard to accept Murphy’s new found remorse as genuine given she sat next to Partridge throughout this cross-examination without comment.
  3. I can imagine medics reading this thinking ‘Yep. Well there clearly needs to be robust challenge to the evidence produced. This is a medic with her whole career at stake…’ That’s fine. There’s a process in place here. A process that should not involve trying to destroy someone in an attempt to get a doctor off the hook.
  4. I’m left wondering if the panel allowed the brutality because there’s an assumption of underlying ‘vexatious patient/family’ narratives at these hearings. They seemed oblivious to the trauma being generated in front of them.

 

The transcript

I began by counting the number of questions Partridge asked me. At the time they blurred into a dizziness that I still think about when I wake in the early hours of the morning.

157.

He asked me 157 questions.

157 questions…

Page turning and more

I mentioned page turning in Writing Trauma. It wasn’t only the physical turning of pages in the deep lever arch file but the harrowing glimpses of words, notes and comments about LB across his 107 days in the unit that this generated.

Partridge page turning in action:

‘Can you just turn back to the first statement at page 1?’
‘It is at page 644 it begins.’
‘If you just look at page 645…’
‘If you just go over the page to 646…’
‘If you then go on to page 647 for me…’
‘Can you just have a look in the notes for me at something on page 631?’
‘If you look at 623…’
‘Just look at paragraph 57 of your witness statement.  If it helps, there are some notes at 236.  I hope I have got the right reference.  No. I beg your pardon.  Just pause a moment, Dr Ryan, I do not want to send you on a wild goose chase.  There are some notes at 698 that say CTM meeting, clinical team meeting.’
‘Can we look at the second meeting on page 698?’
‘Just have a look at the document for us, will you?  It is attached to Dr Murphy’s statement.  You have got Dr Murphy’s statement still there just on the side, I think.  There are a number of exhibits to this document.  It is Exhibit VEM/5.’
‘…if you go back to that file at page 692 – sorry, just before you leave that page, Dr Ryan, page 699, can I just ask you about the reference to the seizure monitor?’
‘If we go to page 692…’
‘If you go to 689…’
‘Just go to 685…’
‘If you look at page 673…’
‘If we have a look at 10 June, page 676…’
‘At the end of this at page 679…’
‘At the top of 677…’
‘Can I ask you about the dynamic that was created because if you just look at page 693 for a moment in your bundle there…’
[Break requested by me]
‘… can I ask you to look at page 693…’
‘Just going back to look at your statement, let us go back to paragraph 21′ I think it is at page 70…’
‘Could I ask you just to look at something we looked at slightly earlier at page 647 in the bundle?’
‘I want then to ask you about the incident that you talk about under your heading, “Seizure at the unit”.  It begins at page 32 of your statement.’
‘I think you describe at page 83 that you went to see Patient A on the ward.’
At 84, that you did not discuss with Patient A about how he had bitten his tongue.’
‘Let us just look at that note for a moment.  This is page 541…’
‘On 3 June, this is at page 680…’
‘If we just look at your paragraph 94 – sorry to move you around – back to page 35,
Again we have to go back to the care plan documents at page 676…’
‘It is page 670, 10 June…’

‘Sorry to move you around…’ after nearly two hours of battery by bundle.

Page turning was combined with other tactics:

Just look at paragraph 57 of your witness statement.  Dr Ryan, this is not a memory test any of this.  It is your witness statement at paragraph 57 and it is page 26.  I just want to be clear about this.
Q Therefore you did not hear that conversation.
A No.
Q How long was he gone for, can you recall?  If you cannot remember just say so.
A No idea, it was not long.

Q Again you have no recollection.  I do not want to go through these ad nauseam but you have no independent recollection of these conversations.
Q If we go to page 692, this is 22 April and it is another CTM, at the top there, you will see the people who were present.  Dr Murphy was not present on this occasion.  Do you know if you would have been present?
A No.  If I am not on the list, I would not have been.
Q Can you remember if there was any reason for that; was it work?

Contemporaneous impact evidence and the death blow

My discomfort at the interrogation was apparent in the transcript.

Q At the end of this at page 679, there is note here whereby attendees of the meeting were invited by mum to brainstorm plans for Patient A’s future.
A Yes.
Q You had a fairly active role.
A Yes, in that meeting.
Q You did not feel in any way cowed, shall we say, to put across your point?
A No, I felt as I feel right now.  I felt deeply uncomfortable and distressed and at a loss really but we went through the process of the meeting.

And I was able to identify the death blow among the raining punches. The point that pushed me beyond endurance. I’d thought it was when Partridge described how upset Murphy was by my description of her. That when I asked the panel for a break. It wasn’t. It was later.

When Partridge too dismissed LB’s seizure.

Q That is 20 May, is it not?
A Yes.
Q That is after the – again let us try and be neutral about this – event with the tongue biting.
A It was a seizure.
Q Yes, I know that you feel it was a seizure.  I understand that.
A It was a seizure.

It was a seizure.

Postscript:

GMC transcript

Giving evidence and the weight of the state

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Rich and I went to London on Wednesday. This was a big trip in the context of disrupted sleep, nightmares, crochet, Candy Crush and more crocheting. I hauled myself  into the hairdressers for the first time in months on Tuesday. Jack set to on my mop head. He doesn’t talk much which is cool. Lauren a right old talker who used to cut my hair appeared wearing her new carer’s uniform. She’s starting social work training in October.

“I told ’em about what happened to Connor in safety training last week,” she said.

It pissed down when we were on the Oxford Tube but the sun appeared at Marble Arch. First stop was a meeting at Monckton Chambers  with Steve Broach and Charlotte Haworth Hird about the MPTS tribunal sanction decision. We kicked around the content of the planned legal submission to the Professional Standards Authority (PSA). Grim incredulity again at the sanction wording and decision. Charlotte said she’d write to the PSA to let them know a submission was coming.

Rich and I walked to parliament to give evidence to the Joint Committee on Human Rights chaired by Harriet Harman.

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We were with Louise and Simon Rowland in one of two sessions that afternoon. Louise’s brother Joseph died a terrible death and it became apparent during the session that their experience of gaining accountability was almost as harrowing.  This was to be followed by a panel consisting of Deb Coles INQUEST CEO, Merry Varney lawyer at Leigh Day and Katie Gollop QC at Serjeants Inn. The chambers that spawned both Alan Jenkins and Richard Partridge.

The room was seriously, seriously hot. The committee sat in a horseshoe arrangement  with the four of us on a table facing them. Members of the public sat behind us. It was a similar set up to the MPTS tribunal with less space, more opulence and four family members not one.

Harriet Harman demonstrated an excellent and sensitive grasp of the key issues. Other committee members too were clearly interested and concerned. Some were not up to speed (the recording is here) and appeared not to have read the written submission INQUEST had produced. It became apparent that ‘committee sitting’ is a pastime for some. A quick google revealed one member had spent their adult life trying to stamp on the human rights of certain people. All very odd.

The evidence produced during the first session was harrowing. Other than praise for  coroners (the second coroner in Joseph’s inquest) we presented a situation summed up by Harman as

Where you have lost a loved one and the state is implicated because the loved one was in the care of the state and thereafter the state then weights the system against you because those acting on behalf of the state have full-on legal representation from the word go in order to defend their position and you have nothing unless you happen to find people who are prepared to do it for free.

The state weights the system. Yep. And sets out in the relentlessly protracted process to destroy bereaved family members who dare to try to get answers.

The yellow card

The second session introduced a new layer of bafflement. Gollop had a yellow rather than white name card.  A symbol of the hierarchy that permeated the room I assume. Further reminder of  Valerie Murphy’s yellow card scheme and the Serjeants Inn connection.

The committee began with the same format of question and answer but within minutes Gollop interjected to present the five ‘brief’ (not brief at all) points crowdsourced on twitter she wanted to get across. She painstakingly worked her way through each one without interruption. Her apparent knowledge was privileged in a privileged setting.

The pastime crew were a receptive audience. I suspect they always are to the yellow card holder.

Watching the second session (from 15.57 on the recording) is grimly fascinating offering the viewer a smorgasbord of facial expressions and grimaces. Two women championing the human rights of people and their families catastrophically let down by the state. Oozing knowledge, expertise, experience and humanity. And a third, whose evidence aside from the occasional reflective comment was couched in an alternative (offensive) narrative of compensation, litigation and detachment.

The take home message of both sessions if you strip away the Serjeants Inn white noise is there should be equality of arms between families and the state. As simple as.

Doreen Lawrence came over to speak to us at the end clearly upset by what she’d heard.  We shouldn’t have to fight, she said. This was all wrong. Gollop took the opportunity to slip away. I don’t blame her.

On the coach journey home we received an email from Charlotte. The Professional Standards Authority are going to conduct a detailed case review of the MPTS decision.

 

Power, irony and the ‘sorry’ ship…

‘Sorry’ or an absence of sorry has been a consistent feature of the last few years. We’ve collected a right old rag bag of non-apologies including ‘I’m sorry for any distress you may have felt…’ ‘Please accept my condolences for your loss‘ and ‘I’m sorry if [fill in whatever here]. Last week Valerie Murphy finally ‘found remorse’ and produced an apology for the MPTS panel.

The Murpy effect

At LB’s inquest, one of the barristers, Mr Fortune, offered Murphy the opportunity to say sorry to us when she was giving evidence. An eminently sensible and kind man, he’d obviously helped his client Winnie Betsva come to the decision to do so when she earlier gave evidence. Winnie said sorry. Clearly and unambiguously. Murphy’s non-response lead Fortune to dramatically say “I specifically did not ask we, I addressed the question to you. Dr Murphy please answer.” After further procrastination she stated “It was the right decision. I don’t believe there were failings”. On the inquest recording you can hear the courtroom door slam as I walked out. [I didn’t slam it, it closes loudly.]

Fast forward to yesterday and an email from the GMC. Murphy’s solicitor said she wants to write to us and are we willing to allow the GMC to pass on our home address.

When the ‘sorry’ ship has sailed…

There comes a time when the space to say sorry expires. How long that window remains open will vary but given we went into the MPTS tribunal last August fully expecting and prepared to accept an apology from Murphy four years after LB died it lasts some time.

That ship has sailed now. It sailed for me when instead of saying sorry she allowed her barrister to unnecessarily cross-examine me for nearly two hours.

I had to leave that room too when he told me she was upset. For a brief break before returning to more of the same. While Murphy sat next to him. Feet away.

I’d hazard a guess that Murphy wants to apologise to us now because this absence is repeatedly referred to in the sanction decision. The focus of the MPTS process is on finding demonstrations of insight and remorse by the doctor and the panel helpfully suggest what she might produce before the hearing next year. Including

A reflective account addressing what you have learned and done in respect of the Tribunal’s findings of facts, impairment and sanction demonstrating your level of insight;

[As a bit of an aside, in my thoughts about this I had a sad chuckle earlier remembering LB’s approach to unwanted stuff like hex bugs, broken watches, the egg of trust. He just binned em. Without hesitation.]

The panel should have drawn a dotted line under a potential apology at this stage. It really doesn’t take much insight or reflection to realise that it is probably too late. There’s heavy irony here that the panel are prepared to drag an apology out of Murphy in pursuit of evidence of insight without themselves showing any insight or reflection of the continuing brutality of the process for us. Murphy, likewise, is demonstrating no insight into her actions if she’s prepared to suddenly fashion an apology after everything she’s done and hasn’t done.

Final thoughts

Power is, as always, at the heart of this sorry business. The power to withhold a genuine sorry or to give a half baked non-apology. The power to choose to send ‘the sorry’ a circuitous route to the recipient or simply to others. The power to give a medic – who catastrophically failed a patient by not providing the most basic of basic medical care – chance after chance to buck her ideas up. The erasure of any consideration of the impact of the whole process – including actions taken and decisions made – on the family and wider.

This is an extract from one of the responses sent to the Professional Standards Association expressing concerns about the panel sanction decision.

The Equality Act requires public sector agencies to make reasonable adjustments such that the service offers a similar standard to groups such as disabled people to that experienced by other people. Using learning difficulties as a mitigating factor points in a direction contrary to the Equality Act, seeming to accept that standards are lower for medical professionals working with people with learning disabilities.

I can’t help thinking the MPTS process has descended into some kind of farce. Underpinned by an inability to see LB as a person, demonstrated by using ‘learning difficulties as a mitigating factor’.  It’s the only way I can make any (non)sense of it.

[As a postscript, as I’m struggling to make sense of this, if anyone has any different thoughts please chip in below.]

Constructing remorse…

I’m not sure where I’m at right now. An odd mix of physical and emotional pain, despair, rage, intensity, incredulity, powerlessness. A heady mix of summat there’s no name for. Four years on from referring Valerie Murphy to the GMC. Seven months since her tribunal started in August 2017. My cross-examination during that first hearing. The drawing out of this process across two weekends in November and three days this week. Being battered with further evidence, excuses and shite.

A slow and inexorable torture.

Enter ‘remorse’

Remorse arrived in Manchester this week. Late in the day but Murphy’s barrister explained ‘the blessing’ of insight can take time for some doctors. [Yes really.]

George Julian carefully traced the crystallisation of this remorse over 4.5 years.

Short version here:

A remorse drenched reflective statement signed days before the hearing was shared with the panel.

Murphy even pitched up with a new version of the yellow card story. An exemplar in how ‘facts’ can be retrospectively squeezed into newly discovered remorse spaces. Bit of a fakery giveaway here with her aim ‘from’ rather than ‘of’ this project:

Someone has to drive this through she told the panel between sniffles, ‘a bad headache’ and having been apparently “emotionally broken” by these events.

The yellow card narrative. A redemption song.

Sense and sensibility

Stepping back, it’s obviously not possible to raise awareness of your own failings until you recognise you’ve failed. Given this recognition only happened in the last week or so it’s unlikely Murphy has been openly talking about her failings while spreading the news about the yellow card. [While off work sick].

Anyone calmly sitting next to their barrister tearing strips off a mother whose son died under their care is not ‘open about their personal failings’.

The panel must know this. They were there. They’ve read the mountain of documentation which includes shifting the blame to anyone or anything that moves.

Followers of the live twitter feed collectively groaned on Monday morning when after light questioning it transpired that the pioneering yellow card team of four had never met. A slow collapsing into vague reference to a chance meeting with one of the team at a conference back in 2014/5 and, the ultimate farce, regular meetings with the second who happens to be Murphy’s husband.

George live tweeting the proceeding was pulled up for ‘audible expression’.

The absurdity of the evidence presented on Monday and the subsequent acceptance of the panel to swallow this was more than apparent to those following.

The decision

The decision was published mid afternoon on Wednesday. 12 months suspension and another review. The sanction document (I’ve only managed to read up to page 8 so far) captures so much horror it’s difficult to understand the decision. Or this process really.IMG_3513

And then. Under mitigating circumstances on p7. This.

‘The difficult field of adult learning difficulties.’

It was the ‘difficult field of learning difficulties’ what did it for LB [for Danny Tozer, Edward Hartley, Thomas Rawnsley, Stephanie Binchcliffe, Anthony Dawson, Sarah Burnley… and so many others].

‘Difficult’ which, in this context, means less than. Less than human. Entitled to less than care in shoddy, substandard surroundings. Murphy was never going to be struck off for a less than death. She might have done nothing remotely resembling being a doctor but she only had to whip out a bit of made up remorse and a shabby incoherent story at the 11th hour to avoid erasure.

This damning statement by the panel effectively endorses the idea that certain people can expect to be treated appallingly. Utterly, utterly shameful.

Taking Mildred, Murphy and North Parade

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Rich and I walked down to North Parade yesterday so I could stock up on wool to help me get through the final section of the GMC tribunal. A process started in May 2014 when we referred LB’s responsible clinician to the GMC. The tribunal has spread out across two weeks in August, two weekends in November and a further three days from this Monday. 

The consultant, Valerie Murphy, relinquished her licence in 2014 and returned to work in Ireland. When we referred her we knew nothing about the patient who died seven years before LB in the same bath. A death she raised with the Trust in March 2014 and then 18 months later at LB’s inquest. A death dismissed in life.  Another layer of grim wrongness discarded as easily as a dirty wrapper in a street bin.

I already feel queasy that the sanction will be decided this week. The impairment decision makes for a devastating read and the process has been brutal. George Julian is back in Manchester tonight ready for the 9.30am start. She will be live-tweeting the proceedings at @JusticeforLBGMC shedding light on these processes (and allowing us to follow from home).

We walked down Cuckoo Lane. Passed the John Radcliffe hospital where LB didn’t die. The Oxford Brookes University nursery where he went as a tot (before being ‘released’ with a ‘too difficult for us’ stamp). Across the Marston Ferry Road and along the river to University Parks. Roaming around various North Oxford roads until we emerged opposite North Parade.

The small wool shop (Oxford Yarn Store) for a novice but seriously hooked crocheter was dazzling. Like a cave of brilliant jewels arranged and heaped on every surface, from floor to ceiling.The woman was reassuringly helpful showing me what wool I should use and a photo of the end result if I used the wool I liked. I suspect I’ll be a long term spiky novice on the stitching front (I have history here) but she was quietly encouraging.

After some careful questions about my recent turn to crocheting she said she was following what happened to LB and her nephew was autistic. She wished me luck and looked sad.

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Over on twitter (which constitutes about 15% of my current non-working life if I include the early hours of the morning) reverberations about Hadiza Bawa-Garba continue.  This is the doctor recently struck off by the GMC. I relentlessly stand on my timeline with a faulty light sabre (alongside a number of other family members, lay people and the rare medic) hitting back at what seem to be outlandish, extreme and inappropriate claims by hopefully a vocal minority of medics (though given the shedload of cash raised overnight to challenge the GMC decision I’m not sure). 

I don’t have any personal feelings about Bawa-Garba being struck off. I’ve consistently said that a legal process has been followed to the max and until further details of the original manslaughter trial are known there’s little point in speculating about ‘scapegoating’ or miscarriages of justice. I worry that Jack’s Down’s syndrome was a feature simply because of the dire mortality figures around learning disabled people. Certain people receive differing care across health and social care settings.

The tone of the challenge by the medical profession is grim; little or no consideration of Jack and his family (or worse), exclamation marks, unsavoury and sometimes inconsistent comments.  There has also been condemnation of dissenters to the ‘We are all Hadiza” calls. Among other things this week I was called Mildred from Three Billboards.  ‘A woman past caring’ said the medic dismissively erasing the intense love, complexity, humour and strength of McDormand’s character. I’ll take that, I thought. I’ll bloody take Mildred.

And hope the right decision is made this week.

Long lines…

I’ve been off work since November with ‘mixed depression and anxiety complicated by grief and trauma’. The thoughtful and consistent support I’ve received has involved focusing on doing very little in order to regroup and recover before the General Medical Council (GMC) decision on the fitness to practice of LB’s responsible clinician (Feb) and the judgement in the Health and Safety Executive (HSE) prosecution of Southern Health NHS Foundation Trust (March). 

Doing very little has been a revelation. After early days of intense agitation and wondering ‘What the actual fuck…?’ I’m getting good at it. I can wash a pan or sort out a small pile of crap (untouched since 2013) with unprecedented attention and a (non) speed that would beat the slowest of slow lorises. Disrupted/nightmare-filled sleep is more manageable when you can decant from bed to settee with a blanket during the daytime. Reducing panic attacks to moments of breathlessness/fear is something else.

I’m shocked now that Rich and I returned to work so soon after LB’s death in 2013 (with no pressure from either of our employers). But of course back in the day we had no idea of what lay ahead. 

“Who supported you after LB’s death?” asked the mental health team a few weeks ago.

Supported us? In the wake of LB’s sudden, brutal, unexpected and utterly preventable death? Like a police liaison officer? Ah. No. LB died in the NHS. There’s none of that stuff. Respond offered us telephone counselling via social media. 

We didn’t know…

I think we probably thought at the time that work would be a distraction from intense pain while the wheels of justice and accountability turned in the background. With the odd nudge from our newly appointed legal representatives.

We returned to work in the early days of the dirty tricks game the Trust and local authority were playing. All we knew at the time was that the Trust pegged LB’s death a ‘natural cause’ death in online board papers in late August. We didn’t know about the behind scenes activity; the briefings and secret reviews; the twists and turns, lies and obstruction. We didn’t know these processes would drag on for years or how much of an enormous collective effort would be necessary to gain accountability.  

This was and is our ordinary. In the extraordinary space of public sector related preventable death.

As it is for so many other families. Many of whom have endured more than the 4.5 years we have, while others regularly join this liminal space. There’s little change. There’s little support for young people who struggle and teeter on the brink of admission to inappropriate settings while their loved ones do everything they humanly can to pick their way through the paucity of appropriate care. It simply ain’t good enough.

A new National Director…

Ray James, the newly appointed NHS England National Director for Learning Disability tweeted earlier today.

James is, of course, one in a long line of people charged with the task of reducing the scandalous number of people incarcerated in assessment and treatment units. We’ve witnessed a series of awkward and sometimes embarrassing failures in trying to do this, not least the Winterbourne View Joint Improvement Programme/Concordat and Stephen Bubb’s big breakfast. I don’t doubt James’ determination and commitment to the task he faces. What is concerning is the disappearing of everything that came before. A snapping of lines.

Another day, another face, another resolution. While people continue to live heartrendingly miserable existences.

No #Learningfromdeaths

Rich was appointed as one of two family representatives on NHS England’s Programme Board last summer for the Learning from Deaths programme (work commissioned as an outcome of the Mazars review). He received an email from a family advocate who said that families would be reassured by his involvement in the work. The first event he attended was a two day gig at the Oval in November. He walked out after two hours. The meeting opened with two apologies from NHS England – not for the fact that 75 bereaved families had to be in the room in the first place – but that no work had been done for last ten months and for the shoddy organisation of the original meeting. As the meeting unfolded, Rich felt he could not validate the process.

In December a further event was held in London with Jeremy Hunt and the great and the good. The unofficial erasure of any focus on the premature mortality of learning disabled people was completed during this meeting. Two years pretty much to the day from publication of the Mazars review. Hunt ploughing ahead with his misplaced belief that improving the process of investigation for patients more generally would improve the investigation of the deaths of marginalised patients. 

What about the work relating to learning disability related deaths? I and one other family member tweeted during this event.

“Ask NHS Improvement or NHS England” replied the Care Quality Commission. “They’re tasked with taking forward the recommendation relating to learning disabled people.”

We did. Neither responded. 

Certain people don’t count. Or worse.

They never have.

A full circle…

We woke this new year morning to the news that Toby Young has been appointed to ‘help lead’ the Office for Students (OfS). 

There is so much so wrong with his appointment… a quick search on twitter will reveal his appalling views, ill-informed commentary and actions while he tries to (ironically and pointlessly) disinfect his own timeline through a heavy handed programme of deletion. Relevant here is his apparent distaste for disabled children and associated flag waving for ‘progressive eugenics’.  (Improving the ‘genetic stock of the least well off’ in an attempt to improve the overall national stock…) 

Eugenics is, of course, eugenics as @Education720 points out: 

Woolf’s diary entry was written in 1915:

… we met & had to pass a long line of imbeciles. The first was a very tall young man, just queer enough to look at twice, but no more; the second shuffled, & looked aside; and then one realised that everyone in that long line was a miserable ineffective shuffling idiotic creature, with no forehead, or no chin, & an imbecile grin, or a wild suspicious stare.  It was perfectly horrible.  They should certainly be killed.

There are long, long lines that can be traced here. Plentiful dot joining between the desire for the ‘improvement of the British breed’ (Churchill, 1899) and the eugenics movement. The continuously poor treatment, neglect, bullying or abuse of learning disabled people in whatever setting – long stay institutions, the community, inpatient hospitals, home – by a range of individuals and professionals over the last century. And Young’s support for ‘progressive eugenics’.

Complex and complicated strands are interwoven into and between these lines; ignorance, maliciousness, systemic and structural processes, cronyism, fear, power, gender, economics, culture, power, politics, stupidity, greed, elitism, narcissism… the list goes on and on.

‘Progressive eugenics’ is a deeply flawed and harmful ideology that denies any recognition of the humanity, creativity, compassion, love, diversity, joy and brilliance people bring to society. I miss LB with an ache that hasn’t diminished in over four years. My heart contracts and eyes well up in a split second whenever I think about his gentleness, humour, generosity, curiosity and straightforwardness. Contrasting his obvious qualities with the bile that Young (and others like him) spew, with nonsensical reward and little censure, is unspeakably grotesque.

How is it possible that not one person, in a long, long line of influential people who can and should speak up and call this for what it is, ever does?