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?

 

 

 

 

 

 

 

Danny Tozer

Danny’s inquest began this week. Three weeks ago we set off on the  #CaminoLB. His parents Rosie (second left) and Tim (second right) joined us for the first few days. (Rosie’s account of what happened before and after Danny’s death can be read here.) Much talk and reflection about the inquest as we carried the red teapot in Danny’s memory.

We hoped, we seriously (naively) hoped and kind of convinced ourselves that Mencap would do the right thing. Given the transparency generated by George Julian’s live tweeting and Mencap’s self proclaimed status as ‘the voice of learning disability’ we thought they’d pitch up and park the dirty tricks bag that too commonly appears at inquests.

They didn’t.

A few initial thoughts here (in no particular order).

A clusterfuck of fuckwad proportions.

Natural cause of death

Danny died of natural causes. Apparently. According to the Coroner’s office. There would be no post-mortem, inquest, scrutiny.

People assume unexpected deaths always involve inquests. Not always. Learning disability is a kind of ‘get out of jail’ natural cause of death card.

This is Rosie and Tim’s fight to gain accountability and answers about the death of their beyond loved son.

Erasure of house mates

Staff trauma was raised by the Mencap barrister ‘without wanting to detract from the family’s trauma’. The distress of the four other housemates present that morning was erased. One witness talked of going to put ‘bags on wheelchairs’ while the ambulance was called. A grotesque and graphic illustration of the non-personhood of people who should be the focus.

Blaming the parents

Mencap couldn’t help themselves. There has been no acknowledgement of Danny’s death this week. No kindness, empathy or apparent reflection. The Mencap barrister brutally cross-examined Tim and Rosie on the first day. Did they complain? Did they complain enough? Why didn’t they make their concerns more apparent? Why and why not? 

Hints of ‘difficult parents’ dripped into evidence. 

They answered each question carefully and with dignity.  At one point Rosie said she’d brought a scrapbook of Danny’s life that she hoped the coroner and others would look at. The contrast of this simple act of love and humanity with the barrister’s questioning was almost unbearable. 

‘Private time’

Much discussion and questions related to ‘private time’. Mencap contributions by staff witnesses and/or their barrister focused obsessively on Danny’s morning wank. This relentless and dehumanising focus seemed to be aimed at absolving Mencap of responsibility for Danny’s death. He was not to be disturbed or interrupted during ‘private time‘. 

The sensor mat

The sensor mat. The epilepsy bed sensor mat translated into ‘no need for observation’. Niggles about the sensor mat tumbled out almost by accident during confused and often incoherent evidence.

The mat worked.

The alarm went off during ‘private time’. It disturbed the whole house. It was definitely working.  It was tweaked and replaced a few months before Danny died. A reference to mat ‘settings’ hastily retracted. The mat had a coloured light – blue, red or green – depending on who was giving evidence. It definitely worked. It was checked every night. 

Except it didn’t work. Whispers emerged suggesting it was turned off during ‘private time’.

Staff members tried to simulate seizures in Danny’s bed. Grotesque, unfathomable action. Unrecorded. Anecdotal.

The mat worked. It didn’t. Nobody really cared at the time of Danny’s death. It was natural causes. No one from the front line staff to local, middle or senior management gave a flying fuck. Danny died of natural causes.

Epilepsy awareness

There was a strong sense (similar to LB’s inquest) that Danny didn’t have ‘proper’ epilepsy. Just a fake, learning disabled type version. A bizarre and incomprehensible position sustained after both Danny, LB (and others) died. I don’t have words for this. Just tears.

Family barrister, Ben McCormack, consistently and carefully raised epilepsy awareness among staff witnesses. He returned to the point that staff knew they should time Danny’s seizures and call an ambulance after five minutes. The observation levels described fell far short of this. His efforts fell on stony and unmoving ground both among front line and more senior staff. An almost pride in epilepsy unawareness played out in court

The hours

Descriptions of the number of staff, ‘residents’ and the sums underpinning ‘sleeping’, ‘waking ‘hours and 1:1 hours was like looking at my crochet chair of tangled wool, half crocheted squares, knots, mistakes and more. Without the colour.

Reported allocations (one house mate had 24 hours 1:1 cover while the rest seemed to have a range of 1:1 and general hours) seeped and steeped into an amorphous mass of incoherence. A nasty mix of double counting and ‘sharing hours’.

The Tozers took Danny home when they felt there weren’t enough staff on duty. A shortage treated with short thrift by one staff member. Danny’s activities highlighted as problematic. The ‘voice of learning disability’ seriously rocked the impoverished life model of supported non-living this week. 

Staff attitudes

Staff provided a pretty much consistent and desolate picture of disinterest, dismissal and casualness. “I can’t remember” a much repeated response. More senior staff members used an almost more baffling “I believe…” for questions they should have known the answers to.

There was no apparent preparation, no reading reports, checking notes, minutes, care or reflection. It was as if Mencap staff were beaten and stripped of any humanity. A bleak, cold and callous picture of disregard. 

I hope Rosie, Tim and family are ok tonight. Their determination to get justice for Danny has already thrown up a shedload of questions, concerns and horrors that should be grasped and shaken by those who should until we no longer accept the shite that permeates ‘learning disability’ care.

I’m just not sure who ‘those who should’ are any more.

 

A day in court and some justice sunshine

L1032452-3The sentencing hearing for the Health and Safety Executive (HSE) prosecution took place this week. The #JusticeforLB bus made a surprise appearance at Oxford Crown Court thanks to Alicia Wood who brought it back from Spain where it’s rested since CaminoLB 2016. Rosie, Will, Owen and Tom joined other family members, friends and more for the final day of sentencing yesterday.

Within minutes we heard the judgement would be delayed until 10am next Monday. Disappointing but five days doesn’t register on my delay scale any more given we’ve waited 1825 days to get this far.

A backdrop to the two day hearing was that Sloven had pleaded guilty to the charges before any charges were brought by the HSE. The new CEO Nick Broughton held his hands up to say ‘fair cop’ and accepted systemic failings between 2011-2016.

[Now known as The Percy Years with an ‘HSJ CEO of the Year’ award as a logo.]

Broughton’s statement included open acknowledgement of the way in which we’d had to fight for justice and how wrong this was.

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#JusticeforLB sunshine at last penetrated the black establishment clouds. A position we didn’t anticipate back in the day.

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This welcome development took a bit of a drubbing by the end of the second day but more of that later.

Bernard Thorogood was acting counsel for the HSE. He spent Monday and yesterday morning laying out the case for prosecution.

Roger and TJ

On Monday this involved the death of TJ Colvin in 2012 at a Sloven unit in Hampshire. In 2013 the coroner found no systemic failures in TJ’s care and it was case closed. That is, until the pesky #JusticeforLB kids persuaded David Nicholson to commission a review into the unexpected deaths in Sloven’s mental health/learning disability provision between 2011-2015. This was to become the Mazars report. An extraordinary review which enabled further scrutiny of TJ’s death.

The details were harrowing. Failing after failing after failing in TJ’s care. The HSE case underpinned by one of the quiet heroes on the long road to justice; Mike Holder. Mike, a health and safety expert, had in early 2012 carefully and meticulously provided details of the ligature and other safety risks in the Trust. He resigned when the Exec Board batted these concerns away like a sleepy bluebottle caught up in a boring meeting room on a hot summer’s day.

He identified 21 long telephone wires across Sloven in-patient provision. The replacement cost for each was £55.

“£1100…” spluttered Lord Justice Stuart-Smith. Yes. £1100 to reduce the risk of serious harm to patients and prevent TJ’s death.

As Bernard* spoke Broughton sitting on the Sloven bench looked devastated. This was in contrast to LB’s inquest when the Sloven team gleefully treated the process like a game of  Top Trumps.

Roger Colvin chose to read his victim statement to the court. This isn’t always allowed apparently but Lord J said yes and we heard him describe his family’s devastation at her death and the carelessness that surrounded it.

The packed public gallery was silent.

Connor

Connor’s case began on Monday afternoon and carried over to Tuesday. The same detail we know inside out but with a health and safety focus. It was heartbreaking to again hear how appallingly Connor was failed and how easily preventable his death was. The overlap between his and TJ’s deaths were grotesque.

In an unexpected move Bernard T detailed my interactions with the Trust ending with this:

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I can’t describe how – I don’t have the words here… powerful? Moving? – it was to hear this said in court. Bernard effectively produced a balm for the raw guilt I continue to drag around.  I hadn’t realised what having ‘your day in court’ could mean.

The defence and dirty dealings

The Trust accepted pretty much the whole of the HSE case. The defence won’t take long I naively thought. We’d been prepared that this section would be pretty unsavoury and it was. It was basically about dosh and reducing how much the trust would be fined.

“Every pound fined is a pound less available for future patient care…”

Of course.

There’s a one third ‘discount’ (I know) in place because it’s a public sector body. Fair enough. But given the thousands racked up by Sloven on legal fees to destroy families, paying mates £3m for shonky viral training and rewarding Percy with a £200k + pay off, the arguments presented were foul to sit through.

The defence barrister proceeded to do a ‘I’m sorry but…’ type number as he undermined Broughton’s ‘fair cop’ position with some dirty little dealings. These included the argument that the coroner had found no systemic failings at TJ’s inquest.

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We saw in the earlier link to TJ’s inquest coverage that her family were deeply disappointed with the coroner’s lacklustre engagement with what happened. The same coroner presided over numerous inquests relating to Sloven without, ironically, finding any systemic failings. A cracking example of how coroners may be ‘best placed’ but may still do a crap job.

The barrister also seemed to suggest that the observation levels for TJ were adequate and the Judge should differentiate between her case and Connor’s in his decision on fine amount. The HSE case was a careful compilation of layers of failings with pivotal chronological points at which the Trust should have acted and didn’t. Trying to pick away at what happened to TJ was unnecessary and cruel for her family to listen to. The point had earlier been made that criminal prosecutions are a very last step for the HSE.

The barrister moved onto the individual responsibility of staff members again trying to  introduce some wriggle room into the hitherto accepted systemic failings pot. Then in an unexpected move mother blame was back on the table.

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Setting aside the fact Murphy’s performance was found to be woeful rather than ‘wanting’ there was no reflection that Sloven’s failure to refer Murphy was further evidence of how shite they were. Instead he tried to weave a further vexatious mother thread taking the shine off the apparently heartfelt declarations in Broughton’s statement.

That’s where we’re at really. Evidence is now done. No more nasties for us to hear (I hope). Sentencing judgement on Monday.

Finally a few thanks…

We’re in awe of Bernard and the HSE team who were meticulous and thorough in their investigation and case building. They were also kind, humane and sensitive throughout.

Thanks to everyone who pitched up from all over (and those who followed the hearing on twitter). The judge could not have failed to be moved by such a strong collective showing on both days demonstrating that TJ, Connor and all the other people who have died preventable deaths in careless, inhumane settings count.

Finally thanks to the Witness service at Oxford Crown Court. I was a bit bowled over having a bespoke person take good care of us during the hearing.

*Apologies if first name is not appropriate here.

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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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.

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?

 

Crown Court

When we were kids, off school with a bug, flu or other illness, we’d snooze in front of the big old (tiny) TV. ‘School programmes’ (shudder) in the morning followed by a less dull but still dull drama (was it a drama? I dunno… maybe it was based on actual cases) called Crown Court at lunchtime.

Crown Court. A kind of ritual endurance, marking the mid point to the crawl to the end of school time and delights like Little House on the Prairie. Time for lunch if not already scoffed. A soft, non medical drug to easily bring on slumber if you felt like shite.

I dug out the theme tune on Youtube earlier. Rich, in another room, unexpectedly shouted “Is that Coronation Street?”

Off sick to the same tune/drama. Capturing the ennui, traffic free streets, all male advocates, a dose of beige and a baby Zoe Wanamaker.

 

On 18 September Sloven pleaded guilty to the Health and Safety Executive (HSE) prosecution of LB’s death at Banbury Magistrates court. The magistrate referred the ‘case’ to the Crown Court. The next hearing was held in Oxford Crown court on October 13*. The judge then set a date – 27 November – to decide a sentencing date. [I know.]

A second HSE prosecution for the death of Teresa Colvin was raised during this hearing. Teresa died a year before LB. Months after Mike Holder, a health and safety expert, meticulously documented patient safety risks which Katrina Percy and the Sloven board ignored.

[Edward Hartley, in turn, died months after LB’s death flagged up issues around epilepsy training and understanding, risk assessment and observation levels. Edward’s death, like so many others, has yet to edge or inch towards proper scrutiny and answers.]

On 20 November the HSE prosecution relating to Teresa Colvin’s death was held at the Oxford Magistrates court. [Sorry. It’s complicated].

Tomorrow (Monday) a hearing at Oxford Crown Court will pin down the timetable for the sentencing date.

The judge will be asked to sentence both HSE prosecutions together. Or formally agree to do so.

This is for various reasons, not least the importance of joining the dots between what happened to Teresa and LB and for the judge to understand the extent of (repeated) failings. Other considerations are the importance of consistent sentencing and costs.

Breathe.

Crown Court. Childhood memories. The never ever. The never colliding.

LB. Teresa Colvin. Shades of Edward Hartley. And so many others.

The sentencing hearing

The sentencing hearing is, we’ve been warned, likely to last for up to two days and will probably happen between next February and June. Time has lost any meaning as next year becomes dusted with various dates or anticipated dates. I can’t imagine what life without the stench and stain of NHS related processes looks or feels like.

The HSE barrister will present the two ‘cases’ in turn and the Sloven barrister will present a set of mitigating circumstances to try to reduce or contain the punishment (fine). They have a statutory duty apparently, as a public sector body to do this.

There is no such statutory duty to prevent a failing Chief Executive disappearing with a year off and around a £200k pay off. There is no statutory duty to stop a public sector body from recording a preventable death as one of natural causes. From openly and publicly withholding information that is in the public interest. From wasting public money on dubious training programmes. And the rest.

One grotesque rule for the bloatedly powerful and another for the rest of us herbs.

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*I had at the time, and have had since, visions of Richard Partridge telling me to turn to page 908 in a massive legal bundle to confirm that, yes I was not present at this hearing. And then scuttle back to page 26, para 4…

I was in the US. I wasn’t supposed to be there.

 

 

The sick note with no ‘post’ in sight

I spoke to my GP on the phone on Monday (practice process). A GP really. Not my GP. Or maybe she is my GP but she left the surgery today. I’ve not met her before. My GP dropped our family from his too-busy list a good two years or so ago.

“Would you mind giving me some context as to why you may be experiencing these symptoms…?”
“Er, well our son died four years ago…”
“Oh, I’m sorry. Can I ask how he died?”
“He drowned in a hospital bath.”
“Ah. I’m afraid I can’t hear you properly. The line is terrible.”
“He.drowned.in.an.inpatient.unit.”
“He drowned?”
“Yes. On the Slade House site.”
“Oh. I am so sorry to hear that…”

And so the tale unfolded. Today at a face to face appointment I was diagnosed with post-traumatic stress disorder (PTSD) and signed off work. ‘Treatment’ options are anti-depressants, a mental health intervention of some vague shape (the referral will take up to 6 weeks) or bereavement counselling.

I’m left both unsure and un-reassured how PTSD can be treated when there is no ‘post’ in sight. Is there an ongoing version? The various disciplinary processes are set to stretch well into next year.

Our legal team strongly suggested Rich and I went to see our GPs a good year or so ago, saying how damaging the process is in the long term. No, we both said. This thing ain’t gonna lick us. That was without reckoning on Richard Partridge’s brutal, cruel and unnecessary take down at the GMC tribunal in the summer. Or the Nursing and Midwifery Council being so incompetent they shared our personal details (including my bank details…) with the six nurses and their advocates under investigation around the same time.

I’m writing this in part to underline to other families how the processes involved in gaining accountability in the NHS are lengthy, destructive and deeply harmful. With little in the way of protection of or care about your health and well being. The best you can expect is a support number to ring and start again from scratch. Telling your version of the ‘four years ago our son…’ story to another person. With all that entails, demands and saps. Somewhat ironically, you cease being a patient when you enter the terrain of NHS investigations and become something else. I’m not sure what.

The mental health referral is underway (I think). In early January I have to contact the surgery and speak to a GP (who may or may not be my new GP from today) on the phone. And repeat the above exchange.

There is so much that could be done so differently here it leaps off the page. But it ain’t our job to spell it out. Again. Why don’t some of you – occupying very well paid senior roles to do so – crack on and do it?

Update: Someone from the Mental Health team rang me yesterday evening and asked for symptoms rather than story. [Thank you.] I’m going to have an assessment next week. (Thank you for the messages of support, advice and information which are much appreciated).