Category Archives: Disability

A beautiful boy, a book, a play and an ink pad

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Connor died. He should be alive.

The book

The book I wrote about what happened was launched at Doughty Street Chambers six years ago with a kick ass panel and audience. I wore a red scarfy thing knitted by the mum of one of Connor’s teaching assistants. My Life My Choice members including their President, Michael Edwards, sat in the front row and cheerfully chipped in.

Writing the book was an exercise in witnessing. I’d written this blog for years. Writing joy, love, laughter, critique, commentary (and devastation). The book was a way of trying to make sense of the responses to Connor’s death, documenting the brutality of the processes and bullshit (or worse) families face when someone dies in state ‘care’. It was written before some of these processes ended [they never end].

An ink pad

I was uncomfortable at the thought of being asked to sign copies (what do you write?) and made a stamp to avoid this. The tiny ink pad still works. I didn’t stamp or sign many copies in the end. Rich, Rosie, Will, Owen, Tom and George Julian had complimentary copies. I sent a copy to Michael’s sister down Dorset way. He persuaded the publisher to produce a talking book version at the launch.

The play

Steve Unwin began to talk about a play before lockdown. He loved the book and started work to bring it to the stage. We met in Oxford. There was further discussion, draft scripts, potential news, updates and undates. I approached this in the same way I dealt with the book. As a kind of interested bystander with a stamp and an ink pad. Vaguely surprised when the play was mentioned, passing on updates to family and friends with caveats. This may not happen.

A few months ago Steve shared the most recent version of the script (a corker) and news the play, Laughing Boy, is on next spring at Jermyn Street Theatre followed by a week at Bath. Wow. A meeting was held with Stella Powell-Jones and David Doyle (Artistic Director and Executive Producer) in a London pub to talk about the important stuff.

How to get this right. That was the discussion. With Thai curry.

Earlier this week, the copy and image was shared for comment. The reassurance I felt after the meeting was cemented. The image is inspired by a #JusticeforLB quilt patch and the text spot on.

The announcement was made on Thursday lunchtime. The Lonely Londoners in Feb/March followed by Laughing Boy in April/May. I was at a writing retreat at Gladstone’s Library distracted by the beauty of the mushrooms as details bounced around social media.

So many messages and posts. A buzz of action, excitement and anticipation despite everything else going on. Would it go up North? Highlight of next year! My Life My Choice are bussing to Bath. Brilliant said Norman Lamb. Becca got her clipboard back out to organise the life raft trip to London. Booked. Booked. Booked.

Someone prosaically tweeted, ‘Lots of time to do something remarkable’.

It’s already remarkable. A beautiful boy dismissed in life matters. His quirkiness, love of life and buses, humour, irreverence and courage to stick two fingers up at adversity count.

I’m setting aside my stamp and ink pad. There will be tears. So many tears, alongside laughter, bafflement and kick ass brilliance.

Thank you Steve Unwin.

Tickets are available here with relaxed and captioned performances.

The bathroom renovation

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Part 1

The bathroom renovation. An extension built fifteen or so years ago thinking about LB’s long term future. A downstairs bedroom and bathroom (always surprisingly) reached through a door under the stairs into what was a narrow garage.  A never quite [don’t ask] finished space steeped in emotion and history. ‘Valuing People’ an unformed kernel of an idea back then. ‘Still Valuing People’ to come. Still.

A failed attempt to complete it a few years after LB’s death. And silence.

Now. The clear out. Shelves of untouched stuff. Dust art installations to fascinate, intrigue, repulse. How does undisturbed dust work? Shake down, replenish and/or pile up?

Who is this little fella in a glass?

“The glass is from the Queen’s coronation” offered Rich.

A 68 year old glass. Seven years of dust. A mystery figure. [And 107 days…]

Sadness and excitement about reclaiming the space.

Part 2

This morning. Just after 7.30am. Shaken awake from strike slumber in a panic of door knocking and dog barking.

Christ. It’s the builder.

You go.

You go.

We grub around for bits of clothing in the dark.

He’s early.

Yeah. That’s a good sign.

Yeah.

I run downstairs and open the door.

Paul.

Sara.

Sorry, I’ve not been well. I may have to leave to get to the hospital quickly.

Crumbs, sorry to hear this. You shouldn’t be at work.

I’d rather be working to be honest. I’m fed up with doing nothing at home. I just can’t lift anything heavy. 

I offer him a cuppa. He’s not allowed fluids other than water before 10am. He’s brought water with him.

“What’s that face for?” asked Rich coming into the kitchen.

Nothing.

Part 3

We learn fragments of Paul’s life across the day. Family, health, (not) stockpiling bog roll and stories from decades of renovating bathrooms. A second builder pitches up to help. His wife texts to check on him. I learn about the technical background to the extension and plumbing failings. No damp stone is left unturned.

Love, quiet graft and commitment fills the space. And, with no whiff of cheesiness, hope.

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.

Crocodile tears and the ‘do nothing’ advice

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Early morning, a column by Clare Gerada appeared in my twitter timeline. Gerada is an ex-chair of the Royal College of GPs so no fly by night. She campaigns (as part of a heavily, heavily NHS England funded gig ‘Practitioner Health’) about doctors’ mental health. This week there has been coverage of doctor suicides with some loose reporting of figures (there were 81 suicides not 430*). Gerada is trying to extend the Practitioner Health service beyond London.

I dunno. You can sit on either side of the fence, or on it. As is too often the case with the NHS following the dosh is an instructive exercise.

‘Sensible advice’ say some replies to Gerada’s column. ‘Best advice I’ve ever seen…’

The heading kind of made my eyes water. Those blooming tears. Still.

‘Do nothing… immediately.’ I can only now imagine this ‘luxury’ over the past five years. There is no space to ‘Do nothing… immediately‘ for families. We face years of unrelenting, unremitting fighting, policing, and uncovering. Pretty much every NHS related scandal is the outcome of persistent, committed and astonishing actions by families and their allies. Activity that allows no downtime in a grief drenched space.

‘Do nothing… immediately’

‘When a complaint lands on your desk…’ says Gerada. Deliberately disembodying the ‘complaint’ from the person making it. And the space in which it materialises.

The person (human) who probably never dreamed of making a ‘complaint’ to the NHS. I mean why would you? Why would any of us**? It’s a national institution. A treasure. Free healthcare at the point of delivery and all that…

How often do we actually make a complaint about stuff? About trains, airlines, education, retail outlets, telecoms, restaurants? Why would any of us want to make an official complaint against the NHS? What would make us feel driven do this? Complaints in any setting are important for improving service. Complaints in the NHS are crucial because they involve lives.

For Gerada the complaint isn’t delivered or received. It ‘lands’ on the workspace. Disconnected from action and intent. Allowing her to (brutally) focus solely on the practitioner.

‘Do nothing’, she advises. ‘If you can, take the rest of the day off.’ Take the rest of the day off…

‘Do not rant and rave…’ I still can’t understand why the assumed position of a medic would be to rant and ‘rave’ about a complaint. Getting a 3/5 mark on student evaluations is enough to cause some right old soul searching/scrutiny of our learning and teaching practice at work (even after 10 years). The idea we would leap straight to defence of our practice – to ranting and raving – is baffling.

‘Wait for the first waves of shock to pass…’ Still no consideration of the person or family who made the complaint. Of what they may be experiencing; their pain, distress, grief. The piece descends into a google translate type extract. Clunky. Missing meaning. Swerving on substance. With the odd hand grenade planted between platitudes: ‘At the earliest opportunity contact your medical defence organisation (even if the complaint is trivial)’.

In short, Gerada’s advice seems to be ignore the substance of the complaint, buggar off for the rest of day and get your legal defence ducks in line. She ends with ‘don’t suffer in silence and don’t take it personally’.

Wow. Just extraordinary ‘advice’.

She has previous on complaining.

And clearly remains obdurate on the subject. A road traffic accident… From last night.

What I don’t understand is why there remains little critical (in a good way) and open questioning of what is clearly shite and offensive advice by medics. It’s as if once harm has happened or been done, the drawbridge is raised and the profession becomes a pack.

Where is the thought, the reflection. Humility. Or challenge?

*This is in no way to dismiss, belittle or otherwise every health professional who has died.

** For the sake of transparency, I made a complaint to Southern Health NHS Trust when LB was in the unit. I said they didn’t listen to my concerns about his care. About 5 days before he drowned in the bath I was told it was not upheld.

The fish tank, gotes and dressing up

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An old mate Jill called round unexpectedly this afternoon while I was crocheting in the back room. I’m getting not too bad at crocheting squares with wobbly sides.

We had a bit of a reminisce over a cuppa and hob nob or two. The time we first met. About 20 years ago when Rosie, and Jill’s son Tristan, started at primary school together. Jill and I randomly sat on a wooden bench by the fish tank in the foyer so absorbed in chatting we missed the talk the headteacher was giving to new parents in the school hall. We laughed (in part horror) when they filed out passed us.

Failing our first ever school-related parental task.

The headteacher explained in the talk we missed that the bench by the fish tank was where kids would wait when no one turned up to collect them at the end of the day. The cone of shame bench. Rosie was to sit there a few times over the next four or five years. After what now seem like capers in the overly complicated and convoluted world of family life when a child is labelled as disabled.

ConnorWe remembered how Tristan became a regular fixture at ours after school typically wearing his Thunderbirds outfit. Virgil. Captain Tracey… The outfits.

I’d forgotten about the outfits. LB was a sucker for dressing up. Captain Scarlett, Woody from Toy Story, a racing driver, the Early Learning Centre policeman tabard. Batman to Tom’s handed down Spiderman.

Washing up gloves, school shoes and wobbly masks. The full gear.

Jill’s younger son Will became one of Tom’s bezzy mates. He was with us on the visit to the rare breeds farm when LB let the goats out.  I still chuckle when I remember being in that tiny space with LB and those cheeky goats. I recently found his school holiday diary where he’d written:

‘I let the gotes out’.

You did matey. And I should have seen it happening.

We didn’t half laugh though. That memory is priceless.

 

 

 

 

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?

 

Johnny Rotten and the legitimacy of anger

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Rich met me at the bus stop after work yesterday. I was feeling a bit low. We wandered home across the London Road.

“You seem a bit despondent…”
“Yeah. I am. Fed up with raging. And the continued shite that just doesn’t change. Not sure I can bear another year of being so angry... I’m weary of being constantly angry.”
“That’s what happens.”
“What?”
“People get worn out. They stop being angry. But it’s right to be angry. Anger drives a refusal to accept the low bar, the unacceptable. It drives action and critical engagement. Without it, issues are reduced to vague problems too easily dismissed.”
“Hmm…”
“Like Johnny Rotten said, anger is an energy…”

Minutes after getting in, an old mate turned unexpectedly. Her son a year or so older than LB. We had a catch up over mugs of tea and a chunk of Christmas cake. She filled me in on the horror that has been her family’s recent experiences of adult services. Not a pretty story. But it so rarely is. We reflected on the way in which 18+ years of loving and bringing up our kids (along with their sisters/brothers) can be summarily dismissed or problematised by health and social care (with the eye watering irony they offer nothing in its place). The misuse of power and erasure of love and more (the right words don’t exist) too often, just extraordinary.

Before she left, she said;

“Do you remember when N and LB were young? And we were so optimistic about the future…”

Blimey. I’d forgotten. We were. There was a group of us parents. A right old bunch of budding agitators/activists [just mums really…] All with kids the same sort of age. So utterly convinced we could change what we thought was an already changing world to create rightful space for our kids. To live the lives other people lived. I was shocked to remember this, and that I’d forgotten.

Later, one of LB’s school mates posted two photos on Facebook from years ago. LB was sitting among the small group of kids. He looked so chilled in one and smiling, as he saw the camera, in the other. It was clearly before the fake, fixed cheesy Wallace grin period which lasted a good year or so. Until my relentless photo taking became commonplace again.

Rich is right. Anger is necessary. Or you get sucked into the malaise that is the myriad words/excuses/bullshit/reviews and recommendations that health and social care bods endlessly come up with. Non existent change… what’s about to happen. And never does. At best, a kind of hope soup. That never leaves the kitchen. And feeds no one but the cook.

So 2017. Another year. With anger. And focus on brilliance. The remarkable. And humour. That rightful space is still there, somewhere. We just have to collectively, and persistently, nudge the crap out of the way. And never stop saying this is simply unacceptable.

bindmans

Bindman’s published their first ever annual review today.

The silent minority

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Awkward beginning to Tuesday. At the crack of dawn Rich and I sat on the BBC Breakfast sofa. 6am-ish. Twenty minutes (literally) after tipping out of bed. The CQC deaths review was published with failings in death investigations found across trusts. Findings of crap. The focus on learning disability and mental health lost in the review. The obvious next step to the Mazars review was to explore whether the discrimination it revealed was replicated across other trusts. The broader focus on all deaths in the CQC review obscured this focus. 

I had little to say on the sofa about the broader findings of the review. It’s shite. Of course it’s shite. And needs urgent attention. But urgent attention to the broader picture ain’t going to get anywhere near to addressing the (soft) eugenic practices happening in full view. (Another study last week reinforced the shocking premature mortality figures for learning disabled people.)

This was not the story the BBC were running with.

Luckily Rich (a political scientist) shone. And the second sofa slot/day of various news gigs became manageable with the intervention, via twitter, of a dedicated and passionate BBC fairy. And sensitive, thoughtful engagement with various people across the day.

In stark contrast to the review findings.

This stuff really ain’t rocket science.

The silent minority

Two weeks ago, during the final meeting of the CQC deaths review expert reference group, discussion was around the inclusion of mandatory investigation of the deaths of learning disabled people as a recommendation. It was clear that these deaths were simply not scrutinised. They were expected and accepted. Howl.

The final report had one recommendation relating to learning disability/mental health. Recommendation 4.

4

As recommendations go (in the unrelenting carousel of NHS reports) this must feature in the top three of all time ‘what the fuckwhattery?’ recommendations. An extraordinary leap from mandatory investigations to nothing. When I asked for clarification, the CQC said it meant ‘different parts of the health services need to work together to reduce the increased risk of premature death’. A year on from the Mazars review, further evidence of deep inequalities and worse within the NHS, and a recommendation we could have drummed up, at no cost, in seconds.

The words ‘missed opportunity’ just don’t work here. 

In 1952, because of the prevalence of certain deaths, the government set up the Confidential Inquiry in Maternal Deaths focusing on the deaths of women during and up to six weeks after childbirth. Supported by a range of experts, with clear, careful and methodological scrutiny, this inquiry has reduced the annual maternal death rate from 90 deaths in 100,000 to 10. Jeremy Hunt insists that the LeDeR programme based at Bristol University is performing this function. It’s not. It’s not designed to. Nor has the funding to. There is no effective scrutiny of these deaths. (Can you imagine?)

We’re left with incontrovertible evidence that certain, marginalised people die prematurely. That they are dismissed in death as well as life. That their deaths simply don’t count as important enough for serious review/scrutiny. This, in turn, means they will continue to die early.

The CQC decided on the recommendations in the review. And carefully spread the responsibility for ensuring these actually happen around various organisations. With no single point of oversight. Not a sensible model. Whatever spills out of the half arsed, ‘learning disability’ badged non actions that will be talked about, a decision was made to bury the real scandal here. In Recommendation 4.

The curious incident of the earlier death in the bath

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In June 2006, HC, 57, died unexpectedly in the same bath that LB died in. Days after two ECT treatments he was unable to consent to. This emerged during LB’s inquest in October 2015. The coroner, who was clearly surprised to hear about the earlier death requested statements from the key three people involved in HC’s death.

  • The student nurse present in the bathroom

Once I had H supported I managed to pull my alarm, whilst at the same time shouting for assistance. At that point a member of nursing staff entered the bathroom, it was a female member of staff but I cannot recall who it was, simply due to how long ago this incident occurred. I can however recall that [nursing manager] followed that female in to the bathroom. It was approximately 10-15 seconds from H starting to have a seizure to other staff members joining me in the bathroom. By the time they arrived the water was drained and H was still in the bath and [nursing manager] told me to leave the room, which I promptly did. I understand that he did this purely because of my age and experience and he felt it was best to be away from what was happening to H. I did not see what happened next and never saw H again.

  • The nursing manager 

At the time of the incident I know I was not on the Unit.

Later in his statement he says:

I am not sure if I arrived there before Dr J or after but she went into the bathroom and assisted in trying to revive patient. I also cannot recall whether paramedics were already present when I arrived at the ward or whether they arrived after.

  • 3. Dr J (who phoned me the day LB died)

As the attending doctor, I pronounced HC dead.

Later in her statement she says:

On 29 June 2006, I received a phone call from the HM Coroner’s Office asking me if I was prepared to complete and signed the Part 1 of HC’s Death Certificate as I was the attending doctor at the time of his death. They called me again after 15 minutes and informed me that the HM Coroner was not going to ask for a postmortem examination and open an inquest. They informed me that HM Coroner would sign the Part II of the Death Certificate.

The 2014 Sloven ‘investigation’

Another Sloven psychiatrist was tasked with finding out more about HC’s death in 2014. He wrote to the Sloven Clinical Director on March 25 stating:

[Dr J] confirmed that there had been a death some years before Dr M’s appointment. [Dr J] relayed that the circumstances were different in some respects to the epilepsy related death last summer, but similar in that an inpatient on STATT had a seizure in the bath. An attempt at resus followed but it was complicated by the difficulty staff had extricating the man from the bath. He died soon after.

On May 13, the Sloven ‘inquiry’ concluded:

As this was an unexpected death of an NHS inpatient it was reported as a SIRI. There is no evidence of an RCA being undertaken. The Coroner had pronounced the death as natural causes.

This is how you erase a life and a death in full view. Particular lives and deaths. Those that don’t count.

We need to talk about Mencap

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The CQC published a chilling review of a Mencap run ‘service’, Precinct Road in Hillingdon, on Friday. Yep. Mencap. Documenting so much so wrong I can’t summarise it here. A series of human wrongs.

This went under the radar until Mark Neary came across it this morning and started to tweet about it.  A teeny tiny (anti) press release was eventually published later today stating very woodenly;

Mencap takes very seriously any requirements and recommendations on how to improve the quality of support we provide. After a recent CQC inspection of Precinct Road in Middlesex we have apologised fully to the people we support and their families.

We have taken immediate steps and great care to fully address the actions outlined by the CQC’s requirements and recommendations. Our procedures and environment at Precinct Road have improved as a result.

Mencap is committed to ensuring that we offer the highest quality care to enable people with a learning disability to live the lives they choose to live.

This was missing the hallmarks of a typical Mencap press release; speed and a grandiose statement by the Chief Exec – usually in cahoots with the CEO of the Challenging Behaviour Foundation – ‘calling upon the government’ to do diddly squat. (Ensuring their continued seats at any table, breakfast or otherwise, where endless, pointless but costly discussions about the provision of services can be chewed over a doughnut or ten). Oh, and no link to the CQC report. Breathtaking.

I’m left thinking… Mencap (or Menace as my autocorrect keeps calling them):

  • How could you possibly be required to improve the services you provide given you are the (self proclaimed) ‘leading voice of learning disability’? With the £b?/millions you have at hand?
  • Why did it take a CQC report to make you act at Precinct Road when it’s clear from the CQC report that the problems identified were apparent for several months?
  • Why have you only apologised to the four people who ‘live’ at Precinct Road and their families? Surely you should issue a wider apology. To all those you ‘support’ and those who fundraise and volunteer for you?
  • How you can possibly say you are committed to ensuring you offer the highest quality care to enable people with a learning disability to live the lives they choose to live… when you don’t?
  • And finally. Are you a provider or a campaigning charity? Because you clearly can’t be both.