Sharks on the rooftops

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

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

Distressing, unnecessary and cruel.

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

Sharks on the rooftops.

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

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

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

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

Angel Executive Travel. No.fucking.way.

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

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

I’m taking air punching.

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

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

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?

 

 

 

 

 

 

 

Dancing around death…

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

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

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

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

Quality reviews screaming ‘ACT NOW’.

Ignored.

Why the fuck didn’t you do something?

No engagement. No interest. No care.

Hollow, brutal and public erasure of humanity.

#Leder review

 

 

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.


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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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.]

Under giant trees…

I don’t blog much any more. I’m off work. I don’t have the concentration to do much more than play candycrush, sort through stuff and graze social media. I’ve become a half arsed, flakey version of a Stepford Wife. Rich gritting his teeth when I brightly suggest that if we wipe the top of the cooker daily it will remain clean.

My days are strangely unfilled with little and so much. 

I listen to this, over and over again.

Haunting and magical particularly from 3.16.

Richard Handley’s inquest has been live tweeted this week (@Handleyinquest). A cheeky chappy surrounded by love and a family effectively excluded from the work sadly needed to keep him alive. A tale of barbaric and inhumane failings.

The overlap with Connor’s inquest is harrowing. Blame shifting, lies and an absence of remorse. Richard’s mother brutally and unnecessarily questioned at length.

I bought a bag of wool and crochet hooks. I need to learn to hold, hook, turn and gently pull through wool though woollen hoops and loops. I’m watching a ‘crochet for beginners (left handed)’ youtube film. It takes practice apparently but the basics are clear:

“Move your crochet hook under and over the yarn, and then pull it through.”

I do this. Listening to Under giant trees.

‘Always make sure patients with epilepsy are within sight or sound when bathing.’

‘Make sure Richard has a healthy diet (plenty of fibre) and monitor bowel movements…’

Under, over and through.

Clear and simple instructions.

Giant trees. 3.16 is the best bit.

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).