Category Archives: NHS Improvement

Stolen time, mother blame and writing back

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Gawd. Not written a blog post for what seems like yonks. I think this is a good thing. I’ve also been on strike for what feels about a decade which is generating unusual space to think and reflect about stuff.

This morning crafting vintage crochet squares my eyes/thoughts drifted to beautiful, beautiful photos of our kids. And reflections about stolen time. Time spent enduring accountability processes, on fighting, meeting, demanding, researching, reading, raging, reading, raising, howling, meeting, missing, fighting, raging, howling and missing. Missing so bloody much.

I totted up one strand of this stolen time.

It is unnecessary. These processes shouldn’t take years. Or force families to become almost vigilantes in pursuit of justice.

I also thought about the tenacity and strength of the tentacles of mother blame that continue to try to drag me/us down. Me/us flagging here how the ‘mother blame’ stain works to circulate a narrative of ‘unbalanced woman’ disconnected and distinct from a loving family and friends.

Undertones, hints and hammers 

The still busy blame work continues across diverse settings and spaces. Examples from the last few weeks:

A comment in a Hampshire newspaper. Mazars a tool to discredit one trust or just to appease a certain someone?

A Facebook discussion. What worries me is her being in this position of power over very vulnerable people and seemingly completely unaware of what’s she’s saying.

Disproportionate indignation and the personalising of a wider, independent work outcome.

An extract from a draft manuscript in which a senior exec is portrayed as victim in contrast to an obstructive mother who really should have been offered grief counselling early on.

Writing back

A form of writing back, to borrow from post-colonial literature, is part of my/our personal, academic and activist life. Rich and I talk about it. Katherine Runswick-Cole and I have published about it. #JusticeforLB ran with it and, with George Julian’s clear vision, generated new ways of being, doing and acting.

Writing back is about trying to redress oppressive and enduring imbalances. Of reappropriating and resisting harmful discourses. Shades of refrigerator mothers, accusations of hysteria, irrationality and, ironically, imbalance.

The techniques available to public sector bodies wanting to silence people include discrediting, crushing and co-opting. In this order. I was never big on titles or throwing about my business so early attempts to discredit were short lived. Hints of a generic single mother on benefits are hard to sustain when you are married with a senior academic post. From being invisible, the Dr (‘Dr’) title assumed almost comedic proportions as events unfolded.

Attempts to crush are woven into the fabric of accountability processes as well as the everyday actions of senior health and social care figures. No funding for legal representation at inquests without punitive and intrusive scrutiny. Interview transcripts with NHS staff with sub-sections titled ‘My Relationship with Dr Ryan’. The secret review by Oxfordshire County Council in which the author spoke to everyone but us spinning a teeth achingly biased yarn. The commissioner’s letter about the terrible harm ‘my’ campaign was causing. Countless crushing examples.

Co-opting can be an effective tool in terms of maintaining the status quo. Selfie slide shows of families with ministers, politicians, big charities… People sign up to working with different strands of health and social care to generate change, working with and influencing from the inside. Rich and I dipped our toes into the co-opting pool. Both were short lived experiences as futility shone through. Outrage and incredulity this week from long term National Autistic Society supporters as the penny finally dropped. This is a corporate, self-serving beast.

And what if the silencing techniques don’t work?

Mmm. This has been a ponder and a half. The following point all overlap…

If the techniques don’t work you are not playing the game. You are at fault.

If you remain uncrushed you are clearly not assuming the appropriate, culturally ascribed role of grieving mother. You are stripped of feelings, your bereavement stolen.

People you’ve never met develop a strong and irrational (again heavy on the irony) dislike of you. A disproportionate monstering. A danger to others…

If you resist co-opting there is no resolution. And there is no resolution if you don’t. Superficiality of ‘improvement’ efforts continue with an ever ready queue of co-optees while necessary structural and cultural changes remain untouched. From the outside we don’t have the distraction of insider tinkering and remain a nuisance.

Finally, and what gets lost in all of this, is bereaved families are the only interested parties, to use coronial language, who are typically not directly connected to or part of what happened. This makes the attempted silencing and subsequent monstering all the more monstrous.

The end. For now.

[Please chip in with comment, reflections or criticism; these are very much half formed thoughts.]

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.

The Whorlton Hall disclosures

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My blog is developing a bus theme which would delight a certain cheeky chappy we miss off the planet and to the moon and back. I wrote a CQC related post about the shoddiness of Mencrap provision yesterday evening after a longish gap and then, 24 hours later, comes another CQC related post.

After Panorama exposed brutal and cruel treatment at Whorlton Hall recently, the CQC today published the series of edited reports that begin when Barry Stanley-Wilkinson, a CQC inspector, wrote a report about the provision after an inspection in 2015. He found Whorlton Hall required improvement on all domains inspected. The report was not published until today.

We welcome the disclosure today in the rarely seen spirit of transparency. It offers an insight into an inspection process that should probably be chucked into the nearest skip. Coincidentally there was “a large skip within the hospital car park, which contained debris as well as long planks of wood which had large nails attached” when Barry and team visited.

So today we can trace how a CQC inspector writes a report which goes through layers of review. At each stage meaning is stripped back to bordering on the meaningless, words substituted for more vacuous ones (selected by a ‘word coach’ using a quasi scientific tool). The report then, apparently stripped of the layers of editing (audit trail) bounces to a final review stage which, in the case of this particular report, led to it being punted into the, er, nearest skip.

More evidence was needed apparently though it is not clear where that decision came from in the documents released today. Six months [six months] later, nearly 12 months [12 months…] after Barry’s inspection, Whorlton Hall mysteriously received a good inspection rating. And that was history until the Panorama team went in this year.

So what did Barry’s original report highlight?

  • Environmental risks including the skip and parts of the building in which people couldn’t be observed.
  • Incomplete record keeping (including observations) and lack of risk assessment review.
  • Poor quality reporting of multi disciplinary team meetings.
  • Recordings not legible and no treatment or discharge plans formulated.
  • Out of date medication policies and no rapid tranquillisation policy
  • Lack of plans around sexuality and sexual behaviour and poor take up of annual health checks.
  • Inappropriate staffing levels and poorly trained staff who lacked understanding of the Mental Capacity Act and ways of communicating with people.
  • A low stimulus room used without protocols or procedures.

Basically a cornucopia of potential and chilling human rights abuses which were allowed to flourish for another 4 years. Between the CQC, NHS England, Hancock, ineffectual and careless commissioners, limp processes like Leder and self serving and greedy charities like Mencrap, it really ain’t hard to work out what underpins the stark and devastating disparities in the life outcomes of learning disabled people.

I seriously hope the Human Rights Committee are all over this on Wednesday afternoon.

In case readers need reminding of what living lives we all have a right to live look like, here are Dawn, Gina and Jess enjoying a beer after walking 100kms of the Camino de Santiago last March.

 

 

Kark and Percy

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The Care Quality Commission (CQC) have a Fit and Proper Person Test (FPPR) process to review whether senior NHS bods are fit to practice. [Sorry about the acronyms and jargon here… Just typing ‘fit and proper person test’ makes my finger tips weep.]

I referred Katrina Percy, then Sloven CEO, to this process in 2015. Mike Richards, CQC Head of Hospital Inspections, ‘missed’ my email. After some chasing he said there was no doubt about her fitness to practice. Case closed.

Jan 2016 and unfitness evidence was stacking up. I referred her again. No reply from Richards. At the end of Feb I tweeted about the lack of response. He emailed saying:

Dear Sara, I apologise profusely for the fact that I must have missed this email. I know that this is not the first time this has happened, but I have absolutely no recollection of having seen it.

No? Mmm. That’s interesting. Percy is a prolific ‘absolutely’ user in communications.

Then nothing. I chased up the referral in March, May and at the end of July. Tim Smart, interim Sloven board chair, decided Percy had done nothing wrong around that time and the referral disappeared. Absolutely nothing to see here.

Why am I raking over this old billy bullshite?

The Kark Review

Tom Kark QC was asked to review the FPPT earlier last year on the back of a review by Bill Kirkup [keep up]. The review which has allegedly had a bit of a tasty journey to publication was published yesterday. A refreshing read in terms of sense and straightforwardness. And so, so chilling. I shudder to think what, if anything, might have been stripped from it. He presented a picture of what can only be called corruption. Three short extracts:

Agreed ‘vanilla’ references? Eh? Really? Is this common practice in the NHS (or wider public sector)? Deceit and incompetence wedged into senior layers while candour and transparency are bandied about like a [fuck you] hope carrot for the rest of us herbs.

Breathtaking hypocrisy.

Two of the seven report recommendations were accepted by the government before the shutters shut. Kiosk Keith styley.

Meanwhile, Percy’s new role emerged on twitter.

And I learned that ‘vanilla’ biographies are also a thing.

Global CEO, Ryalto

Global CEO, Ryalto.

Grotesque spin and reinvention.

Delivering operational turnaround of services… leading organisations through transformational change. In March 2018 Judge Stuart-Smith, sentencing the Trust, referred to the ‘dark years’ of Sloven and issued the largest fine in the history of the NHS.

Designing a comprehensive leadership development and culture change programme. ‘Going Viral’ was an almost comedic (although of course it wasn’t) ‘thing’ which cost about £5million in public dosh. The proof of (this ‘leadership’ programme is) in the pudding as they say. Earlier today Sloven were in the news again for failing services.

The pudding was shite. It simply didn’t work.

She now heads up the global team at Ryalto. A quick google reveals a tiny UK based company with a website light on detail.

Global team my arse.

HSJ awards are not shining here. A money spinner for the Health Service Journal. Self nominated nominees and Trusts shelling out big bucks for the black tie drenched reveal gig. At the same time producing dirty little numbers for the vanilla biog and reference filing cabinet. Glittery tat for bolstering failure drenched narratives.

Not a good look @HSJEditor. For so many reasons.

Percy has taken monstrous to a new level here. Providing a contemporaneous example of the grimness laid out in the Kark review. A failing exec covering up her history without compunction or check.

She’s not alone of course. All those who protected her, bolstered her or looked the other way over the years have a right old stench on their hands too.

Maybe one day these people will have the guts to properly reflect on their actions and non actions. I blooming hope so.

“Ensure the toilet door in the section 136 suite at Antelope house is replaced quickly”

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Earlier this week, Rich was out and I was home alone. The growing condiment pile felt right and a deep late Autumn sunset beckoned. I grabbed my camera and headed to South Park. I bumped into a few people I knew walking down there. Brief, warm and casual catch ups. Heading off between each with an eye on the sun. Despite knowing from a newly discovered nerdy site sunset was at 6.52pm.

Across the park there were smatterings of students/freshers, young people and others. Being or pounding across the park in serious running strides, sitting, walking, talking, laughing and playing games. Loosely shared eye and phone action on the slowly setting sun.

I dipped down to dandelion level while waiting.

It was quiet and spectacularly beautiful.

Walking home [after the reported 6.52 sunset and 30 minute twilight window] I felt peaceful.

The next day my phone rang. The latest Care Quality Commission inspection of Southern Health (Sloven) was embargoed until Friday. Ah. Ok… Sloven. A Trust with an astonishingly grim back drawer full of failing CQC inspections. A Health Services Journal award winning CEO (2011 from memory) who doshed a mate millions before disappearing with a £250k pay off back in 2016.

Yep.

All that still trips off my ‘you effectively killed my beautiful, beyond loved son’ tongue. And it will continue to do so until I really understand why.

Back in March we naively thought the outcome of the Health and Safety Executive criminal prosecution and £2m fine was a seminal moment in NHS history. A shot across the bow of all Trusts. A judge pulling no punches in his ruling. Generating critical scrutiny across the health and social care provision of this crapshite trust and wider. Good care, ligature points, care plans, medication storage, staff supervision and so much more sorted. These are basics after all.

Reading this latest report generated yet more tears and distress. How low can you continue to go in providing ‘health’ and ‘social care’.

The inspection in June 18 generated a warning notice around the safety of young people in a Southampton based unit. A warning notice around safety.

Five years after our son drowned. [He drowned]

And so many others have died.

The Sloven exec board are still stretching out their entitled legs. Apparently kicking any whiff of a negative inspection report into the long grass. No determination, commitment or even interest in trying to own these continued failings.

Reminding me of those early, baking hot July days. Almost five years to the day swatting away the CQC inspection like they did with LB’s death. [He died]

There were 20 breaches of legal requirements that the trust must put right. We found 74 things that the trust should improve to comply with a minor breach that did not justify regulatory action, to prevent breaching a legal requirement, or to improve service quality

We issued seven requirement notices to the trust. Our action related to breaches of 21 regulations in seven core services.

I dunno. Reading it I jotted so many notes. Bashing on the keyboard. Scratching furious fucking pen to paper. So much so wrong. Still. Beyond wrong.

The trust had not completed the anti-ligature work at Leigh House (identified as needed in previous CQC inspections) which posed a significant risk to young people and was not being adequately mitigated against.

Governance systems did not always provide robust assurance to the trust board about issues within services. For example, we found the board were not cited on staffing issues in some services, low levels of staff supervision, poor compliance with care planning and an inability to provide accurate restraint data. 

And more:

Poorly written and stored care plans; no patient involvement in or knowledge of care plans; poor note keeping; not following the MHA; lack of staff supervision; inappropriate medication management and storage; risks to young people in MH services; lack of hygiene and broken equipment; issues around privacy and gender; safeguarding issues; ward temperature issues; lack of competence in syringe driver training.

The same old and more. Five years on.

Lives tossed out like rubbish. With no consideration. Reputation ruling the roost still..

This sentence strangely leapt out, from the 54 page report.

Ensure the toilet door in the section 136 suite at Antelope house is replaced quickly.

Sort the toilet door. It only takes a few fucking hours.

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.

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.