Monthly Archives: December 2016

Raising a large glass of something…

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Received a lovely Crimbo email yesterday which made me – blinking back those pesky tears – think, yep. We’ve rocked this gig. All of us. Here’s an extract from the email and some ‘highlights’ of the year:

I hope you all get a chance to reflect on your achievements this year:

  • real justice for Connor – forcing the NHS to acknowledge their failings and removing the CEO who set the culture that created so many problems for your family;
  • the prospect of real, meaningful change for so many other people within the NHS, in particular the families who’ll now expect so much more from the health service;
  • a new (albeit extremely belated) conversation about the lives of people with learning disabilities, with at least a path being set for how they can get closer to being treated with equality and respect.

There are undoubtedly many battles you’ll still want to fight, and plenty of people who need you to fight for them.  But I hope that over a large glass of something, you appreciate that you really, really are achieving Justice for Laughing Boy.

Jan: Campaigners and the gingers attend the Sloven Board meeting.
Feb: Jeremy Hunt meeting with Rich, Deb Coles and Andrew Smith, MP.
Mar: 12 Angry Women, Brighton, featuring ‘A Mother’s Song’ by Edana Minghella.
Apr: Mike Petter, Sloven board chair resigns; Simon Hattenstone wrote about LB in the Guardian mag; the CQC issue another warning notice to Sloven; revelations of Sloven financial irregularities.
May: Rebel governors meeting
Jun: Performance of A Child of Our Time, Warwick University; debate about Sloven governance in the House of Commons led by Suella Fernandes.
Jul: Talentworks  ‘Going Viral’ and exec salaries scandals hit the news.
Aug: Katrina Percy steps down from CEO into a made up post on the same salary.
Sept: BBC air Broken Trust, about Sloven failings; Tim Smart, interim Board Chair, resigns; Chris Martin removes the Talentworks website and pulls out of the Sloven contract.
Oct: Katrina Percy  resigns with a £250k pay off. The made up post remains unfilled; #JusticeforLB, Deb Coles and Charlotte HaworthHird win a Liberty Human Rights award.
Oct-Nov: #CaminoLB wondrousness.
Dec: Publication of the CQC Deaths Review; #JusticeforLB exhibition and day of celebration, Aviles, Spain; the GMC refer LB’s consultant to tribunal; the Health and Safety Executive appoint counsel to get specialist legal advice on complex points of evidence.

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Here’s to LB and all the other dudes who were (and continue to be) let down so badly.

Oh dear Mike

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Oh dear. Mike Durkins, National Director for Patient Safety at NHS Improvement (my arse), made this statement about the CQC deaths review;

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There is so much so wrong with this statement, not least Durkin’s apparent indifference or obliviousness, to what are, often, preventable deaths. What really makes my jaw ache though is his bizarre reference to families of learning disabled and mental health patients. Mike, all families should be properly treated and supported when a loved on has died unexpectedly. Just like all unexpected deaths should be properly investigated. Singling out these families suggests a complete misunderstanding of this latest scandalous unfolding.

As Patient Safety Director you really need to be focusing on why certain patients are dying (consistently) in the first place. [And, if you need herbs off the street to point this out to you, you should probably have a long, hard think about whether you are in the right job.]

Also, before you make a leap to global standards of excellence, you might want to see what’s going on in Spain and their response to the way in which the NHS treat certain members of society. Strikes me, you could learn a thing or two.

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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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