Category Archives: nursing and midwifery counsel

Quest Craven and the end of a decade

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I’ve drafted posts on paper, on this blog and in my head on and off for weeks and months now. And kind of enjoyed not posting them. It feels right. I may revisit some of these ghost posts. Or not. Some (many) are about (malingering) grief. About the intense pain and sadness I feel. And always will. With patches of pretty much happiness. That’s cool. I don’t want to always be Captain Bringdown. I remain in awe of feelings of contentment.

I’ve got a sort of manageable grief gig thing going on that kicks in along my walk to work in St Aldates. A space of enormously wide open sky. Taking in an ever present smorgasbord of coaches outside the Ashmolean. Mentally ticking off the die cast models LB collected while acknowledging post-death models he could only dream of. The road ahead leads to the cemetery.

Tonight I want to write about one atrocity story. Before we leave this decade.

Back in the day I would likely have laid out the pre-story to this. In considerable detail with links, drawings and other illustrations. [This blog with JusticeforLB.org and 107daysofaction produced by George Julian will no doubt provide a weighty and comprehensive account of the utter shite that passes for health and social care for certain people in the 21st century. Ripe pickings for students to unpack in years to come.]

I’ve lost my appetite for up to the minute documenting. For calling out, calling on, demanding, raging and howling at the moon and the stars. Six years on the resounding response in terms of demonstrable action is ‘we really couldn’t give a flying fuck’.

The swears no longer work.

Quest Craven

This is a story about a private provider called Quest Haven who run two ‘care homes’ for learning disabled people in Surrey (amongst other ‘care’ related practices). I strongly urge you to:

  1. Have a graze of the CQC inspection report highlighting the harrowing failings in anything approaching what could be described as ‘care’ in one of the two properties.
  2. Reflect on the longevity of this company (set up in 1997) and the fact that until November 2019 the Directors (three members of the Tagoe family) claimed to be Registered Nurses.
  3. Have a look at the Quest Haven website.
  4. Note that the claimed Registered Nurse status of all three Directors has now been revised to, er, not Registered Nurses. The Directors of this private provider were all faking their credentials.

Apparently the Nursing and Midwifery Council and Care Quality Commission couldn’t give a flying fuck about this fakery. Classy bunches as ever. We have no idea how widespread this practice is and the limp response suggests there is little or no appetite to root it out. Particularly, I suggest, when those receiving the non care are of so little value. Tinned mac n’ cheese on a budget of (an estimated) £3k+ a week is apparently rock and roll.

So, as we enter the third decade of the 21st century the appetite, guts, knowledge and integrity necessary to shift entrenched failings in practice and support remain elusive. Talk is talked. Big salaries are drawn among public and third sector organisation bods. Family members continue to be co-opted and effectively silenced.

Meanwhile in a bungalow in Surrey people continue to be treated like shite by fake nurses who don’t know their care arse from their elbow. Quest Haven rakes in the readies as commissioners across the country remain apparently glad to wash their hands of ‘troublesome people’. A regulatory and commissioning system continuing to choose to look the other way.

Way to go. Way to fucking go. We need a new plan for the next decade. One that does not bolster and help sustain this rot.

Garden state

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On holiday for two, possibly three, weeks now. Almost on cue after a weekend of NMC agitation, the panel delivered their decision around the impairment of the four nurses still in the ‘game’ at 10am this morning. Day one of annual leave. Week 13 of NMC hearings. Year 6 for the whole shebang.

None of the nurses should have faced serious disciplinary action. More a good old disinfect and reinvigorate with kick ass refresher training to blast away the sour notes of being embroiled in a languishing ‘service’ kicked into the long grass by a greedy and hopelessly inadequate new mistress/trust.

What this process has achieved is to make howlingly visible how unfit for purpose the NMC is. And generate dread, horror and anxiety.

LB’s key nurse (the one the panel inappropriately gushed over) was found ‘not impaired’ and released while the final three were found impaired in some ways. They will be told of their sanctions on Thursday at 10am. Funny how these panels can pinpoint how long something will take in advance. At least they finally discovered the Health and Safety Executive ruling over the weekend [cough cough].

Tom went to work. Rich and I wandered up to Headington Homewares to get something to oil the kitchen table. It’s been battered with over five years of non attention now. We came back and left the new ointment in the tin on the table. I read in the garden. Distracted by the recently shifting (small) terrain. There’s a raised slope in the grass with a 10 inch or so ‘dry stoneish’ type wall thing down the left hand side joining the slope to ground level.

A dip in the grass appeared a few days ago.

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‘Come and have a look, Rich,’ I called when I first noticed it.

He appeared, peered from the back door and said ‘Yep, it’s sunk a bit’.

Today I studied this dip every so often over the top of my book. It’s as if someone has pressed a space hopper down firmly on the slope and caused the low bank to spill out.

I ditched my book and started poking about the spillage with a trowel. Pieces of easily broken, thin, deeply rusted metal appeared just below grass level. I took some in to show Rich and Tom. Nope. No interest. They didn’t even touch them.

After another half arsed attempt at reading, I downloaded a metal detector app. Genius idea. I slowly waved my phone across the parched grass like I’ve seen people do on beaches. Red. Green, red, red.

Tom appeared in the kitchen. I told him about the app.

‘Mum, that’s never going to work’.

It does. Well it does if you get really close to metal. We used a fork to test it. Doubting Tom removed the fork hanging off the back of my phone and I went back to dig a bit more. It was hot work.

Rosie rang. ‘What’s this about you digging up the garden, mum?’

I told her about the app. We laughed and chewed the fat.

I went back to dig.

It’s hard work digging when no one digs with you.

I don’t mind. The mysteries of the past are soothing. And earthy.

The NMC and the fact free determination

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This is going to be a detailed post as it’s important to highlight just how shite the NMC panel ‘fact determination’ about the STATT nurses is. This is about the hearing process rather than what the nurses did and didn’t do.

As background context feast your eyes on this:

Maintaining public confidence and proper professional standards is a bit of a stretch given the almost fact free determination. Instead, the 66 page document contains unsubstantiated assertions, conjecture and an erasing of evidence from previous hearings. I’ll present a few examples here to give a mcwhiffy flavour of the whole thing. The six nurses are referred to as Colleagues A-F.

Batting for the nurses

The bias throughout the document is quite simply breathtaking. Here’s the description of one nurse. The same nurse who refused to answer a question at LB’s inquest on the basis of self-incrimination (evoking Rule 22).

The panel fall over themselves in a smorgasbord of judgement and conjecture which makes ‘the dog ate my homework’ seem a reasonable excuse. The extent of this bias is beautifully captured in the following extract.

The expert witness clearly states a risk assessment should have been done and patients with epilepsy should be within physical reach at all times. This reiterates the expert witness evidence from LB’s inquest and the GMC hearing. The panel attempt to bury this unassailable evidence in a set of absurd and discrediting sentences. Under some pressure… declined to express a view… She could not say…

How can she say what the outcome of an assessment might have been when it wasn’t done? Putting her ‘under some pressure’ is also a chilling comment.

A very partial engagement with ‘evidence’

The pesky facts that get in the way of the chosen panel narrative are ignored or buried as we saw above. They argue at length that the nurses could not have known LB was having seizures in the unit. That I told them LB had a seizure in May is erased. The fact [this is a fact] that I emailed the unit three days before LB died to say I was concerned he had been drowsy at the weekend is dismissed using evidence from the CTM notes.

This handily ignores the RIO notes where staff reported LB was subdued and red-eyed over that weekend [more facts]. A few paragraphs later the RIO notes are used as (quote) ‘positive evidence’ to show that a nurse made a verruca care plan for LB. The determination (see what I did there) of the panel to rule out any whiff that the nurses should have done anything differently because LB’s epilepsy was ‘well controlled’ is undermined by the fact [yep, another one] that they all knew he had had a seizure in January. Just a few months earlier. This document is more about annihilating actual facts than determining them.

The old language giveaway

There is a littering of language which demonstrates the lack of panel objectivity. I don’t know if this is typical of an NMC panel determination but sweet baby cheesus I hope not. Tom has been an employee at Yellow Submarine for 8 months now and his work involves writing reports. He knows you have to be objective with the language you use. A quick google shows the panel chair has been doing the job for way more than eight months (and I suspect is considerably older than 19) so I can only assume using words like ‘unsurprisingly’ must be commonplace among NMC panel determinations.

A further example can be seen in the following two paragraphs.

The first sentence is again absurd. How could there be evidence of something that didn’t happen? Then there is an emphatic ‘precisely’ underlining apparent good nursing practice. This is followed with a mealy mouthed ‘may have been incorrect’ in the second paragraph which makes me want to gouge my eyes out it’s so deeply offensive. It was incorrect. That’s why LB is fucking dead. [Howl]

Blame, blame and more blame

Blame rears its ugly head again. Particularly hideous given the judgement in the HSE criminal prosecution stated there.was.nothing.more.we.could.have.done. Blaming us again is astonishingly cruel.

Without any apparent reflection the panel say that “the undisputed evidence before the panel is that it could be very difficult to engage with Patient 1″. Undisputed evidence. Just a quick reminder that these nurses are specialist learning disability nurses. All they could get was ‘a grunt and a nod’…

‘It would appear’ appears throughout the document in defence of the nurses. In the following extract ‘it would appear there was limited additional information that could otherwise have been sought from the family’. How can they possibly make this judgement? One bit of evidence (that destroyed part of my already savaged heart) underlined how little understanding the panel (and nursing staff) had of LB:

In his oral evidence, Colleague B confirmed Patient 1’s fear of gangs of youths and his reluctance to go out alone.

He didn’t go out alone. He never had. This is a pretty substantial piece of information the nurses were missing.

We though (‘they’ ‘they’ ‘they’) could have/should have done more.

We visited too much (‘virtually every day’) and there is a juicy third hand suggestion that I was so difficult the unit had to introduce a telephone triage system to cope with me.

Venturing further into the realms of the absurd

The final example takes absurdity to a new level. Yep. It is possible.

One charge was that the nurses didn’t make a planned referral to the epilepsy nurse. It turns out the person they all thought was the epilepsy nurse (Miss 12), wasn’t. [I know]. With a palpable flourish, the panel dismiss the charge. There was no epilepsy nurse to refer to. Do you hear me? And this is a fact. A fact I tell you. The over-use of the word ‘fact’ in this paragraph kind of suggests the panel know they are on flaky ground.

I can almost sense weariness from Mr Hoskins (who I assume is the NMC barrister). Such twisted, twisted logic.

I got as far as p18/66 with this analysis. It continues in the same vein. Grim, biased, childish nonsense. I’m sickened that this could be considered to be of ‘proper professional standards’ in any way shape or form. When you add in the fact [yep] this has taken five years and during the interminable process the NMC shared our personal details with all six nurses and their counsels twice, it’s very clear this body ain’t fit for purpose.

Sharks on the rooftops

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

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

Distressing, unnecessary and cruel.

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

Sharks on the rooftops.

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

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

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

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

Angel Executive Travel. No.fucking.way.

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

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

I’m taking air punching.

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

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

‘A grunt and a nod…’

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The Nursing and Midwifery Council produced its determination of facts yesterday. Six nurses referred by Southern Health who also decided the psychiatrist had done no wrong. (We referred her. She was eventually suspended for 12 months by the Medical Practitioner Tribunal Service panel last November, saved in part from being struck off because she worked in ‘the difficult field of learning disabilities’.)

The difficult field of learning disabilities

The NMC hearings have been going on for a few months now. We boycotted them. We didn’t think the nurses should have been referred (and the NMC sploshed our personal details to them and others). It turns out the NMC panel is as unenlightened as the MPTS panel.

The determination is 66 pages long and deeply repetitive as charges and evidence overlap. I seriously hope a dedicated and brilliant doctoral student will one day meticulously analyse the content of these disciplinary hearing documents which are laden with assumptions, snide judgements, some pontification and ignorance.

The most distressing part (these documents always rip your heart out, punch it repeatedly and intricately slice it with a Stanley knife seasoned with chilli and lime) is the callous dismissal of LB as someone ‘too difficult to make a care plan with’.

No one is too difficult to make a care plan with.

A sort of peripheral (that is, never engaged with him because he wasn’t ‘assigned to her’) learning disability nurse giving evidence said LB ‘didn’t verbally communicate a lot, he’d sit and listen and you’d get a grunt and a nod but you wouldn’t get much to go on’.

You fucking what? [Howl]

The panel accepted this statement without question and thought it important enough to regurgitate in the determination. It will be on public record, ironically demonstrating where serious nursing issues lie. With no comment or reflection.

How can an NMC panel be so complicit in denying LB’s humanity?

Why are these panels so fucking ignorant?

Why? As LB would ask, repeatedly.

The determination goes on to consider the charge that we were unjustifiably restricted from visiting LB by having to ring and ask permission to visit him in the unit. [There were advertised visiting times.]

I dunno.

Phoning to ask permission to visit a patient? Within visiting hours. Daily. For 106 days….

Ahhh. Difficult mum stuff again. They really can’t help themselves. Dismissed at LB’s inquest, publicly retracted by Southern Health in June 2016, and summarily dismissed at the Health and Safety Executive hearing in March 2018 (below), mother blame is back again. And again…

Tsk, said the panel, oblivious to this history. Oblivious to LB dying. [He died.] Oblivious to any understanding of what this experience must be like. Oblivious to anything. Including an almost complete lack of off site visits and therapeutic sessions that family visits could ‘clash with’.

The charge was unproved. (“difficult”) Relative A clearly misunderstood the point of having to phone and ask. This was no (quote) “unjustified” restriction. It was justified given the frequency of the family visits.

We visited too much.

A new coating of mother-blame assimilated into these disciplinary hearings without reflection. Do panel members ever venture out into daylight? Christ. Are these panels linked to the anonymous ‘panels’ that make decisions around budgets and other stuff when our kids turn 18? Who are these panel people? How do you become one? Are they middle class (typically white) people with exclusive life experiences?

Does anyone scrutinise panel membership?

There’s no logic, sensitivity or apparent thought underpinning this latest determination. And no dot joining between the evidence from other hearings (or around the deaths of Edward, Richard, Danny, Thomas, Oliver, etc etc etc). Each person is singled out as an atomised being, subjected to different, unfathomable, barbaric rules, actions and judgements. Without any apparent recognition or awareness by ‘panels’, coroners, ‘independent investigators’…

Why are these dots so hard to join?

Ordinary people (and juries) get it.

Dancing around death…

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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

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

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

Incredible, beautiful faces.

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

Glimpses of triumph and more. So many stories.

Housecoats, aprons and mucky labour.

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


A day in court and some justice sunshine

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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.

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?

 

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).