Category Archives: Jeremy Hunt

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?

 

 

 

 

 

 

 

Entering the labyrinth; a leder tale

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The leder report was published on Friday 4 May. Three years of the Bristol University project reviewing the premature deaths of learning disabled people.

[Blog commentary by Mark Neary, Mark Brown, two posts from Chris Hatton here and here. Opinion piece by Ian Birrell here. All worth reading (in any order).]

Key issues

1. The findings of the report (shameful).
2. The underfunding of the work (shameful).
3. The attempts to bury the report (shameful).

Here I reflect on the opaque and confusing labyrinth seemingly designed to make the premature deaths of learning disabled people disappear.

A song with no title 

No one knows what leder stands for. Including ‘go to’ Google.

leder

A (non) communication strategy

The report was finished in November 2017 and has been sitting in the grimy halls of NHS England while a communication strategy was devised. This took the shape of ‘timing, timing, timing and no communication’:

  • Bank holiday weekend and local election results.
  • No advance copies for the media.
  • No comment from NHS England or the Bristol team.

There would be no comment.

Holed up in the Holiday Inn Salford opposite the BBC studios on Thursday night there was no advance copy of the report despite repeated requests and cajoling from journalists.

I was sent a sneaky few bullet point findings to digest.

I went to the bar.

The coverage

8am-ish after fear-interrupted sleep still no public sign of the review.

Waiting outside the BBC Breakfast studio on the second or third floor, a 4-6 minute dash to the booth in the foyer for patching into the Radio 4 Today show was explained to me. Sofa to booth. Live coverage. Of premature death.

No report still.

The order was reversed. I beetled downstairs with Jayne McCubbins (who was instrumental in the coverage that unfolded). We worked out how to turn off my new phone, donned massive headphones and waited. In the small, darkened space. To speak to the Today programme.

The presenter wasn’t versed in the implications of the report. Jayne provided the headlines then I was asked about LB.

Nope. Don’t coat this scandalous evidence with a gratuitous dose of pity porn.

No.

It was a fairly tense interview. At the end a response from NHS England was read out. [Their only response to date.]

We welcome, they say, this interim report, the first of its kind in the world. These early lessons will feed into hospital and community services work including early detection of symptoms of sepsis and pneumonia prevention, constipation and epilepsy where there is significant progress. They go on to say another £1.4m more will be spent this year so that those responsible locally as well as the University of Bristol and NHS HQ can ramp up the speed and number of reviews.

There’s not much to say about this statement other than the absence of the gravitas, sensitivity, concern and commitment to action you would expect. A report that should have generated immediate and unqualified responses by the government, NHS England and others.

Ramping up the speed.

Ten minutes later I was on the red sofa with Naga and Charlie. They asked relevant, important questions.

“Who is listening?”

No one.

The label of learning disability is now the equivalent of being diagnosed with a life limiting illness. This report adds further evidence to a bloated evidence base.

The coverage that morning is generating the saddest (powerful) tweets from various families. George Julian is pulling them together here in a twitter moment.

Including Danny and Joey.

An urgent question and a bolt for the door

Today Barbara Keeley MP raised an urgent question about the report. Jeremy Hunt legged it as soon as she stood up to talk. An extraordinary moment. All that talk on December 15 2015 when the Mazars review was leaked to the BBC. Pomp and promises. The world leading champion of patient safety…

He left. He walked out. He couldn’t spare 20-30 minutes of his time to engage. His myopic and dangerous lens never more visible in this action.

The hapless and hopeless Caroline Dinenage was left to fend questions. The Minister of (no) Care. Parroting ill-informed and vacuous responses. It was a hard watch. The full transcript is here.

Questions were asked about the content of the report and the publication timing.

The Bristol team finally burst into action. Tweeting to say no, this ain’t true.

Too little too late

I’ve puzzled over the role of the Bristol team here. As a researcher myself. We’ve long known about the challenges the team have faced with a paucity of funding and unrealistic expectations. They have, in some ways, done the best they could do with that level of challenge. The problem I have is with their lack of challenge to the challenge.

Only 8% of the 1300 deaths referred to the team have been reviewed so far.

1300 people. With families, lives, history and stories. People. With mums, dads, sisters, brothers, grandparents, cousins, aunties, uncles, friends, pets. People. Some with no family. Still people. People.

Erased.

Rubbed out.

By an underfunded project that couldn’t cope with the number of people.
By the Bristol team who stood by.
By the actions of NHS England who remain silent (and so much worse).
By the action of Dinenage who was prepared to stand up and defend the indefensible.
By the silence of Jeremy Hunt.

Violence, silence and erasure.

 

Danny Tozer

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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.

 

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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Long lines…

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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

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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

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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).

Reflecting on the GMC hearing

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Spent the day, exhausted, dozing on the settee and trying to make sense of the GMC tribunal*. The full determination can be read here. Having waited since August 7 when the tribunal began (and the dread leading up to that date) and limping over the past two weekends of part hearing, hearing that the panel found that Valerie Murphy’s fitness to practice was impaired was both a relief and beyond distressing. I’ve no coherent thoughts, just a set of (overlapping) questions and reflections. Hopefully the process of writing will help.

1. Is Murphy’s ‘medical practice’ common?
The damning determination (worth reading in full to get some idea of the medical ‘care’ learning disabled people can expect to receive) misses some points that made my stomach curdle during the August hearing. Is specialist learning disability health provision so impoverished that it’s OK to prescribe medication before meeting patients? What does this mean and suggest about the treatment of certain patients?

Can it ever be acceptable, knowing you’re going on a two week holiday at the weekend, to not see an 18 year old young man you’ve agreed to be admitted on the previous Tuesday evening? A young man brutally restrained and sectioned that first night [Howl].

Is it common for medical consultants to tout a travelling suitcase with patient records for a colleague to rummage through?

Have these points dropped off the determination because there are bigger issues to pursue or because they aren’t seen as unusual?

2. Was Partridge’s ‘defence’ appropriate? 
A pre-meeting with the GMC earlier this year to go through my evidence left me reeling. It wasn’t a patch on the cross-examination I was subjected to in August by Murphy’s barrister, Richard Partridge. The pre-meeting preparation suggests that the cross-examination I endured wasn’t unusual.

Partridge repeated similar lines to his colleague, Alan Jenkins, who represented Murphy at LB’s inquest. Both focused on my ‘failings’ and the ‘Dr Crapshite’ post. On what they both seemed to view as unacceptable, unreasonable and discrediting action by a feckless mother. Ignoring what that post (and so many others) revealed about the lack of available support. This focus says so much more about them. And/or their client.

3. Ted why? 
Twitter discussion has focused on Murphy still practicing in Cork. Earlier, a minor bombshell from Stuart who lives in/near Cork. Murphy’s appointment (which is still unclear) was heralded as a ‘turning point’ in CAMHS service provision. An expert from Britain, leaving her investigation cloud behind her.

Prof Ted Dinan, the Gut Man, was prepared to offer a character witness to a colleague he seemingly barely knew. What were you thinking Ted? Boldly pegging Murphy in the top 10% of Irish psychiatrists [shudder]. He told the travelling suitcase story without faltering. While twitter groaned and buckled with disbelief, a few sharp questions reduced his story to a handful of contact hours – “in an academic year she gave two lectures and approximately 14 hours of tutorials” – and help with 5 patients across two years.

He stated that he regarded Dr Murphy as “extremely competent” and marked her apart from other consultants he had worked with, particularly in respect of her willingness to come in and give her assistance.

In contrast to her apparent unwillingness to see LB for 19 days.

4. What price power and insight?
Power. On April 24 2014 Murphy received a letter from the Sloven Chief Medical Officer stating ‘it was not considered that any further action is required in this matter‘. A clean bill of medical health from the Sloven exec. The various CQC inspections, Verita report, inquest and Mazars review processes led to no further scrutiny of her medical practice. We made the GMC referral (with Charlotte Haworth Hird) in May 2014.

Without this referral Murphy would, I assume, be continuing her practice of ‘implicit risk assessments’ (in her head) and remote prescribing in Oxfordshire, Cork or somewhere else. How can this possibly be?

Insight. Reflexivity or reflectivity is a central task for sociologists. Constantly reflecting on stuff; who we are in terms of our identity and experiences, our assumptions, what we bring to our research, how we interact with research participants and the data generated, and our analysis. I’ve always thought of it as a sound task for life. Like I’ve long thought that ‘easy read’ texts should be the stuff of everyday life, not an added extra when funds or thought permit. Adjustments that make life better for everyone.

Murphy failed on insight. She failed over and over again. Her barrister arguably added to this with his own apparent lack of insight. 

We’ve been brutalised by this process. At the mercy of timescales decided by others, cross-examination, forced to revisit what happened, rehashing blame lines… our lives on hold. John Lish captured the experience of the tribunal perfectly in a tweet.

There must be a better way.

*Am now off ‘sick’ for the week. Wary of the extreme spaces we now inhabit and what these mean. It’s only two weeks until the @HSE hearing to set the date for the HSE hearing…

Prof Ted the Gut Man and the travelling suitcase

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Exhausted. A terrible, terrible day following George Julian’s live tweeting of the General Medical Council (GMC) tribunal examining the conduct of LB’s ‘responsible’ clinician, Valerie Murphy. A tribunal that began back in August and is now spread across the next weekend or so.

Todays offering included a tangential figure – Prof Ted (a gut expert) on the phone to provide a character reference for Murphy – and an account of a travelling suitcase full of patient records. Murphy apparently asked Prof Ted to pluck records out of her suitcase, like drawing raffle numbers, to comment on her record writing skills. These are apparently top notch now. She’s learned not to keep them in her head.

Twitter commentators went into free fall. Eh? Audit? What records? With patient consent? Were they redacted? What price ethics?  Murphy was unable to attend for undisclosed health reasons. She seemed to be following the @JusticeforLBgmc twitter feed as, late afternoon when her barrister phoned to ask how this ‘audit’ was conducted, she tried to re-shape the suitcase story into something slightly more robust. Apparently she selected the first fourteen patient records (whose?) alphabetically and stuffed them in her travelling suitcase. Prof Ted randomly selected eight records from these 14.

He unwittingly generated criteria for what to look for when choosing a character witness who doesn’t really know you. Not a big demand for such a role possibly but useful to a few maybe:

  • Choose someone who barely knows you but is prepared to stick their hand into a dodgy travelling suitcase of patient records and describe this process under oath.
  • Make sure they are so tangential in your life that you spend around 14 hours a year in situations in which your paths could cross.
  • Make sure they are prepared to make outlandish statements about how good you are. For example, that you’re in the top 10% of consultants they’ve ever come across.
  • And when pushed on this claim, they’re willing to state rubbish like having a PhD and ‘being helpful and willing to offer an opinion’ is evidence of being brilliant at your job.

Around late morning the GMC presented their submission. We were suddenly thrown into a space of rare sense. Suitcases and gut stuff ditched. The GMC arguments can be read on the @JusticeforLBgmc twitter feed. The statements that made me weep were around how it was not unreasonable for us to expect LB would be looked after in the unit. Chloe Fairley, the GMC barrister, made the point that Partridge’s cross-examination of me in August was an example of Murphy’s more general blame-casting which included nurses and support workers.

Rich and I broke off to eat our weight in takeaway nosh. Returning to twitter an hour later Partridge was presenting his submission. Right back to Gut Man and the suitcase. And Murphy’s ‘brainchild’ the ‘yellow card’.  A shameless rip off of a well known government scheme on a pilot scale. The ‘yellow card’ was presented as Murphy’s contribution ‘to the profession’ to make sure no one ever died again.

Her entry back…

The fakery, sham and offensiveness of this redemption narrative, generated once the  tribunal process was put in motion and not as an outcome of LB’s death, was difficult to sit through. The dripping of ‘madam’, ‘in my respectful submission’ and ‘very painful for her’ statements by Partridge were grotesque.

Tears and more tears.

The day ended around 5pm. It starts again tomorrow at 9.30am with a private hearing.

Writing about an ongoing tribunal (or inquest) process is something we’ve thought about. We concluded today the process is so flawed and stacked in favour of the ‘professionals’ it can’t matter.

The deep sadness I feel. For LB. For the callous and continued disregard of his life (and so many other lives) – presented today as a ‘single patient episode in 2013’ – is matched by the obscene acceptance of the clearly wrong by tribunal panels. By senior NHS officials, by Jeremy Hunt and so many others.

We’ll keep writing justice. As simple as. And not be bullied by the processes seem to be designed to silence. That’s all we can do.

[Thanks to @RoseAnnieFlo for the title of this post.]

A missing ‘apology’ in five parts

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Part I.

Michael Buchanan (who I suspect bereaved families across the country are developing serious love for) continues to fight the good fight of uncovering and shedding light on brutal NHS practices. He did a piece about the decision of the Health and Safety Executive (HSE) to prosecute Sloven for BBC News on Tuesday.

At one point, Huw Edwards, introducing the story, said:

“The Trust earlier apologised to the family…”

I nearly dropped my glass of cheeky and chilled vino.

“Eh? Did you hear from Sloven today, Rich?”
“No.”
“Neither did I. What apology?“

The next morning, a local journalist rang and mentioned the apology.

“We ain’t received an apology, mate.”

I looked on the Sloven website. Maybe they’d issued a statement. [Putting an apology in a statement is not the way to apologise to a family, mind. I was curious about where this ‘apology’ was].

Nothing.

I continued to hear about ‘the apology’ as the day wore on. With no sign of it. Then bingo. This, on twitter:

carding

Ah. The apology was part of a statement the Trust were sending to journalists. A fake apology extraordinaire.

Part II.

In the same way that the Trust response to LB’s death was to write and circulate a briefing document about my blog to protect their reputation, their response (and this needs to be read within the context that three board chairs, a CEO and a complete set of non-executive directors have now been replaced)  to the HSE decision was to tell the British public, via the press, that they have, once again, offered their ‘unreserved apologies’ to us.

Now Julie Dawes, and your merry band of (shit and/or remaining) executives, here’s the rub:  this is no apology. It is nothing resembling an apology. It is so much worse.

What you have done is:

  • compound the barbaric treatment you have relentlessly dished out to us (and many other families).
  • Make visible the insincere, formulaic and performative ingredients of an NHS ‘apology’.
  • demonstrate you have learned nothing despite saying you have.
  • treat us with further contempt and disrespect I didn’t think possible.
  • show us you remain incapable, either wilfully or otherwise, of understanding basic humanity and decency.

Part III.

The statement is pure spin. A closer look at the wording:

carding2

The HSE has “informed the Trust of its intention to prosecute in relation…” [Prosecute who?] “Connor’s death whilst in our care…” [It could have happened to anyone, we just happened to be holding the parcel when the music stopped.] “Could have been prevented…” [Introducing uncertainty into the findings of the independent investigation and the inquest.] “We would like to…” [But we ain’t going to.] “Once again…” [We have apologised to this vexatious mother relentlessly.] “Offer our unreserved apologies…” [A prize for us to take with grateful hands.]  “To his family.” [Family for PR purposes, ‘the Mother’ for every strategic opportunity to stick the boot in.] “Continues to do everything it can…” [Apart from actually say sorry].

Part IV.

You didn’t get in touch with us to say sorry. You got in touch with the press.

Minutes after finding the ‘apology’ on twitter, I received an email from your administrator. On behalf of you and the Board Chair, Alan Yates, about meeting up with the group of families you have treated like utter crap.

dawes

You can email me about a meeting (to benefit you) but you can’t say sorry.

You didn’t get in touch with us to say sorry. You got in touch with the press.

I find this unforgivable.

Part V.

Rich and I have felt pretty low since the HSE news. People have been saying it’s remarkable that the campaign has achieved so much. It is. Bryan, from My Life My Choice, earlier reminded me of the time I sat in his office a year or so ago, dejectedly saying we didn’t have a craphole chance of achieving our aims… particularly around making sure Sloven didn’t profit from the sale of the Slade House site and a prosecution against the Trust.

The trouble is, of course, LB remains dead; our beautiful son, brother, grandson, nephew, cousin and friend, is forever absent and, within a shifting family landscape, newer family members will never meet their quirky uncle LB, brother in law, second cousin or potential godfather. We know this. Any bereaved family knows this.

What your latest ‘unreserved’ non-apology beyond shiteness this week has shown, is that you have zip all understanding of this, and that you couldn’t give a flying fuck. You have been beaten into a corner by a remarkable, and unprecedented, collective brilliance, and you’ve learned nothing.

Still.

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