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.

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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 unmaking of a scandal

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When we met Jeremy Hunt back in the day (I know), it was a deeply frustrating meeting because he didn’t listen. And insisted that improving NHS patient safety generally would improve the lives of learning disabled people.

He didn’t seem to understand that learning disabled people typically die prematurely. That there is, too often, a lack of value and worth ascribed to certain lives, and the denial of an imagined future. That these factors feed into the ways in which people are treated. In life and death.

He used the Mazars review, which found that less than 1% of the deaths of learning disabled people and older people with mental health issues were investigated, to ask the CQC to review NHS death investigation processes generally. With a ‘focus’ on the deaths of patients with mental health issues/learning disabilities.

Mike Richards, CQC Chief Inspector of Hospitals, made a statement about this review in April 2016. He didn’t mention learning disability or mental health.

A CQC scoping paper (undated) about the review refers to mental health and learning disability once:

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Less than 1% of deaths investigated translated into ‘important challenges around multi-agency working’. Simply extraordinary. The incontrovertible evidence that, in a so called advanced society, certain deaths are simply rubbed out, erased. Again. A double rubbing out.

I’ve not read the review which will be published on Tuesday. The CQC thoughtfully shared the section mentioning LB. This (now amended section) translated less than 1% into ‘less likely’:

The (Mazars) report also highlighted that certain groups of patients including people with a learning disability and older people receiving mental health care were less likely to have their deaths investigated by the trust.

My maths is appalling (just ask Rosie…) but I know less than 1% rings deeply concerning human rights bells. And, you’d expect, demands immediate scrutiny and action.

The writing is clearly on the wall for the unmaking of a scandal. Almost a year to the day of the BBC publishing the findings of the Mazars report. The broader findings of the CQC review will no doubt feed Jeremy Hunt’s seemingly insatiable appetite for all things human factors at the expense of a focus on the erasure of certain lives (and deaths). I hope both the report, and his response to it, prove me wrong.

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Hoovering stuff and traces…

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Having a long, very overdue, clear out. It’s an odd one. Bits of LB stuff under, or in, so many piles, boxes, drawers. Tugs, wrenches and memories from the past interrupt the work of sorting. Pulling out one bookshelf reveals 10-15 years or so of a thick fluff. [Sorry]. A strangely soft, dark grey, uneven terrain. Somehow and randomly coating the top half of the skirting board. Sort of gross. But bits of LB. Of Chunky Stan. Of all of us…

It was gone in seconds with the hoover. Traces disappeared.

Odd photos and pictures have turned up. I don’t know who’s with LB in this prom photo (now on the fridge). It’s a school pic. And I’ve not deciphered his film announcement below. The cast includes Dan, his beloved dentist, and Tom, who may be Tom Chaplin from Keane or bro Tom. Depending on when it was produced. He’s rubbed out some of the drawing which was unusual. Or maybe I’m trying to wring too much out of these drops of magic. A way of being with him again. Fleetingly.

LB stars and directs, of course. His casual confidence on display in both pictures.

I smile, cry, chuckle, rage and feel enormous and unchanging love. I bloody love that boy.fullsizerender-15

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Humanity, value, love and sunshine…

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Today, as part of the International Day of Persons with Disabilities, Learning Disability England and Spanish friends held an event in Aviles, Northern Spain, celebrating #JusticeforLB and all those who have died through neglect and indifference. Stitching, artwork, music, dancing, fun and so much more.

Just brilliance…

I felt a right old pang seeing the #JusticeforLB bus/quilt in twitter pics. And reading the shock, outrage, sense and warmth expressed by local kids, self advocacy groups and others…

Valued members of society. Blimey. ‘Reach for the stars’ type aspirations that seem to firmly remain the stuff of dreams here. Despite the continued and brilliant efforts of some/many.

Still. We gotta recognise steps made and there have been some. First, the General Medical Council (GMC). Having proceeded at a snails pace (over 2.5 years so far) in the investigation of Dr M, we were told we’d hear the case examiner decision this week. Sitting at my desk earlier [grey sky, gloominess and an all to0 familiar feeling of delay dread] I steeled myself for another weekend without news.

Then an early afternoon email. Dr M is being referred to a tribunal hearing.

A few hours later, a comprehensive (and spontaneous) update from the Health and Safety Executive (HSE) beautifully headed ‘Connor’.

If you’re embroiled in a serious investigation involving a preventable death [howl], your priorities may well be on the meticulous steps involved in evidence collation/examination. Keeping families informed may seem a less relevant, smaller, almost inconsequential part of the process.

It ain’t.

Keeping families informed demonstrates:

that beyond loved children/sisters/brothers/grandchildren/nephews/nieces/friends are valued.

serious consideration and scrutiny of what’s happened, allowing/enabling slightly easier rest in a harrowing (possibly lifelong) space.

a basic, deeply warming, and too often missed, humanity.

Thank you. To the GMC, HSE and ongoing Spanish based magic. For shining light and sunshine on the way forward.

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You can join, contribute to and keep up with Learning Disability England for £12 a year.  

 

 

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.

The CQC, Ford escorts and failings

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Oh dear. Andrea Sutcliffe, Chief Inspector of Adult Social Care at the Care Quality Commission, has written a blog that makes my eyes repeatedly blink. And my brain slowly and repeatedly turn and churn. Chucking me back to days of car sickness and towel caught vomit on the back seat of a Ford escort. Here’s a walk through…

Writing about the Panorama programme shown this week documenting abuse at a residential home run by the Morleigh Group. [I’ve not watched the programme. I need to develop guts of steel to do so.] Sutcliffe is both defensive and distancing in her ramblings. 

She kicks off in the first paragraph with the statement “We warned [in a report] that adult social care is approaching a tipping point…” Mmm. A better start, given the content of the Panorama programme, might have been something along the lines of “I’m horrified that such abuse continues to happen in care provision in the UK, despite our continued efforts… We clearly need to do better.”

And continues: “The Panorama footage was not shared with the CQC in advance so I watched like everyone else.”

Blimey. Not sure what the point of this statement is but it doesn’t half ring some serious ‘queen of the land’ bells. A moment or two of self reflection (or a good mate to pull you up on these developing tendencies) might be in order… 

Sutcliffe found that “two moments in particular made me despair”.

Phew. It wasn’t that bad. Only two moments. Allowing reference to the mum test.

“That could have been your mum or mine…”

This was followed by a remarkably weak defence of CQC actions around the Morleigh Group:

“these are services we have been worried about for some time; we had kept them under close scrutiny, inspected regularly and set out what they needed to do to improve through our reports and enforcement action”.

‘Worrying about’ services you know to be failing really ain’t a robust defence. And, clearly, close scrutiny and regular inspections aren’t working. These are people’s lives. A fact that an entire gamut of senior NHS bods apparently still do not get. I ‘worry’ about getting to a meeting on time. About meeting funding deadlines. Not about people (residents) being brutalised.

There’s a muddled and confusing tale of inspections before and after receiving info from Panorama and the (necessary) identifying of “a serious decline in quality”. The CQC never at fault. Failing services brought to public attention by the actions of public and/or journalists have typically ‘just declined’ between news breaking and the previous inspection. Removing any need for scrutiny of the inspection process and what might be missing in terms of identifying failing practice the first time round. Before people are brutalised. Or worse. 

The CQC role section is a cracker. Beginning with unqualified condemnation of the Morleigh Group. Of course. The responsibility lies with them. 

cqc-roleThen the bizarre statement ‘But it is not unnatural when dreadful things happen in the sector’. ‘Unnatural’?  Eh? How far have senior CQC staff become detached from reality?

The following paragraph is also deeply concerning.

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Setting clear expectations? They were kept under close scrutiny? Sigh. The Morleigh Group failed. The CQC failed. There is no wriggle room. Bleating about working hard while failings continue is deeply offensive (and makes utter mockery of the mum test).

Sutcliffe continues to dig a deeper hole. Including an extract from a ‘fairy tale’ letter from a punter which rings even louder alarm bells about CQC processes.

cqc3‘I think I should give you a resident’s viewpoint…’ ‘Recovering from the shock’? ‘Right the wrongs here… ‘ Eh? Really? I’m trying and failing to imagine the concerned ‘resident’, sitting in her bedroom, pen poised, reflecting on how much better life is now staff no longer do ‘wrongs’ to her and other ‘residents’. Nah. I can’t.

The overall message of this ill judged post: it wasn’t the Chief Inspector of Adult Social Care or her CQC kingdom what done it. The failings lie firmly with the provider. [And we all know, sadly, they ain’t an outlier.]

Writing what’s happened…

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I’m writing a book. I know. A book. Lofty aspirations. I can barely read one these days. I’m determined to write a book. I’ve never written a book. I write all the time. I vomit out blog posts. I now struggle to write academic papers.

The process of writing this book is generating rage beyond rage. So much so fucking wrong. I’m beginning to reflect more clearly, three and a half years later, on the broader acceptance of the circulating shite. My initial rage at reading the brutal content of briefings, email exchanges and reports is shifting to those who read rather than those who write this content. And say nothing.

Those who received the Background Briefing of Mother’s Blog in their inbox on July 5 2013. A day after LB drowned. Can you imagine? And sucked it up. Those who received the ‘internal’ review‘ by Oxfordshire County Council two weeks before we’d seen sight or smell of the stench of this secret and tawdry investigation. A report chucked into my inbox without warning one Monday morning by an Oxfordshire County Council Social Care Director, strangely off sick for the rest of that day.

Could you try to step outside the smug, judgemental, self serving space you typically enjoy. And challenge this shit? Keep your eye on the human.

It may make you feel better about yourselves. And what you do.

Or maybe not.

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LB’s Fighting Fund. The postscript.

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Been a bit tardy with this, sorry. A few days before leaving for the #CaminoLB, we received a chunk of our legal fees back from Sloven. This means we are able to donate £20,023 of the funds raised to charity. We originally said any recovered dosh would be split between Oxfordshire Family Support Network and INQUEST but feel that the My Life My Choice champs have flown (and walked) the #JusticeforLB flag brilliantly so there will be a three way split. £6,674 to each charity.

Thank you to everyone who donated dosh, sold cakes, chocolates, jewellery, plants, ate cakes, did sponsored runs, head shaves, bus rides, cycle rides and more, bought cards, made pencil cases, bought pencil cases, made notebooks, bought notebooks, held work parties, discos, party nights, donated christening presents, the takings from comedy shows, recorded an EP, made Jack’s cats, bought Jack’s cats, photos and all the other magical efforts people made to ensure that LB was beyond brilliantly and effectively represented at his inquest.

We should never have had to do this [and shame on the Ministry of Justice for relentlessly misguided faith in the coronial system] but given we did, we couldn’t have done it better. Dipping into the remarkable #107days of action collection is a much needed tonic and continues to astonish me. A colourful, random, joyful, diverse, spontaneous and collective effort to get on and do stuff.

LB would have expected nothing less, love him.

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A hard hat, the Playmobile years and stuff…

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I found a Playmobile hard hat yesterday clearing out the rubbish under my desk. Reminding me of the Playmobile years (a good 16 of ’em) and LB’s fascination with emergency services.

Earlier I got this reminder on my ipad.

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I did the slide thing. There was no more.

LB’s birthday. 22 tomorrow.

The pain remains unimaginable. It becomes a bit easier to kind of cover it with layers upon layers of stuff across years. But the stuff remains wobbly and unstable. Sort of useless covering. At the same time, necessary.

You can’t extinguish the pain of a child dying. You have to get on with stuff…

We’ve marked LB’s birthday in random, kind of ‘brilliant’ ways… The first year, an organised and collective celebration at the Long Hanborough bus museum. Year two, Rosie, Owen and I went to the Tower of London. Marking a previous birthday celebration. We caught the final days of the poppy exhibition and grazed the Tower shop. Stocking up on London bus related Crimmy decorations. Tentative steps towards recognising Christmas could happen again.

Last year, viewing the #JusticeforLB quilt at Mansfield College and nosh in Oxford.

Tomorrow we’re getting on with stuff. Rosie is in Vietnam with mates. William and Owen at university. Tom at school. Rich teaching.

I’m working at home. The Sooty tears need space. Though not the space I might have imagined. Back in the darkest of days.

The wooden chest of LB treasures in our bedroom will remain closed. I opened it up for a few moments while packing for the #CaminoLB a few weeks ago. Looking for LB’s pouch of mermaid shells. The briefest glimpse and smell of the preciousness of LB’s life stuff, so carefully packed in those long, hot summer weeks after his death, was like having my heart freshly ripped out [and tossed to a pack of vicious, snarling, loosely chained, NHS guard dogs].

LB was beyond loved. He had an incredibly inquisitive and searching mind. Effortlessly unusual, determined, hilarious and loving. A razor sharp capacity for knowing right from wrong. For calling out injustice. He had a heart the size of a fucking super moon. And smile and laughter that could light up the darkest of dark times. I miss him.

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Conflict negotiation and Trump stickers

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I’m in a space of Trump denial. In a 4.5 star hotel booked for €120 for four nights in Santa Cruz for a work gig. An outside lift reminiscent of The Towering Inferno. Loo roll with a dark blue sticker (figure with upraised arms) on the end sheet. This figure appears variously on a cocktail stirring stick (I think) and other stuff in the room.

fullsizerender-3A Trump like figure. Directing me to the start of a loo roll/tug ritual I’ve mastered since I was a tot. There are no cocktails.

On the plane I had an aisle seat. The woman by the window was a conflict negotiator. With no one between us we bonded over her well worn walking boots and my dusty trail shoes. She trumped the #CaminoLB with 15 or so years of walking different trails/adventures.

We totally owned that middle seat as she quietly reassured me about the robustness, independence and power of the Health and Safety Executive. Apparently, being formally interviewed by the HSE is a deeply, serious step. I was reminded of the clear and sensible info given by the police back in the day.

“This isn’t your conflict any longer…” she said.

Just imagine.