Category Archives: The Connor Manifesto

Meeting the Mazars

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Tomorrow we have a meeting with the Mazars who have been commissioned by NHS England to undertake the review into all deaths in Sloven mental health and learning disability provision since 2011.

It’s probably worth flagging up some of the CIPOLD findings because they are so off the scale shocking. On average learning disabled women die 20 years sooner, and men 13 years sooner, than the general population. 22% of the sample were under 50 when they died.

Astonishing statistics. And then this:

death review

Despite 43% of the deaths being unexpected, they were nearly 10% less likely to be reported to the coroner. Wow. Howl.

A bit of historical context

I suppose it ain’t rocket science to work out why learning disabled people die earlier or why their deaths seem to be of less consequence than the deaths of others. In 1952, A.F.Tredgold wrote this in his cheerily named Handbook of Mental Deficiency  only a few years after the end of WW2;

image-2

(Taken from David Race’s Learning Disability – A Social Approach.)

Forty years earlier, University College London set up a Laboratory of National Eugenics part funded by Francis Galton. Galton, who coined the term eugenics, wasn’t alone in his concern about the ‘feebleminded’ breeding like rabbits and decimating national fitness. A genuine fear of gene pool dilution (Wellcome have a fab digi-archive of The Eugenics Society documents which are kind of breathtaking). It was an influential movement for some time (and arguably still is, albeit less explicitly with that pesky term carefully hidden behind layers of more ‘acceptable’ language) involving a range of public figures including Beatrice and Sidney Webb, HG Wells, William Beveridge, George Bernard Shaw and John Maynard Keynes.

We’ve never really moved beyond this perception of learning disabled people as deficient, worthless, burdensome and a problem. Despite a steady stream of policy making and legislative change. It doesn’t matter that there are small pockets of brilliance dotted about the country if most learning disabled people lead constrained, contained and impoverished lives. Waiting for an inevitably premature death. With little accountability. And no imagined future.

So. A meeting tomorrow with the Mazars. Maybe another step forwards in making visible (unconscious?) practices that demonstrate the dismissal of some lives as relevant or human.

Leading to meaningful change? Nah. Why would it?

State of play

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Nearly 16 months now since LB died. 16 long months. Nothing’s happened really in terms of change or accountability. The preventable death of a fit and healthy young man in the ‘care’ of the state. In an NHS unit. In the UK. In the 21st century. A young man who was victim of a system that simply doesn’t recognise learning disabled people as human. Can you imagine?

LB’s death has crushed our lives. The damage caused by 16 months of fighting, campaigning and raging is unknown yet. But given I feel pretty shit on a daily basis, probably substantial. Standing up to an NHS trust that bullies, deceives and demonstrates complete disrespect/disregard for us, is pretty relentless. The Sloves throw money at reputation repair and focus on protecting staff (a selective protection given a staff comment here). The experience, for us (an irrelevant, irkesome family), is the equivalent of a daily battering. An experience documented by other parents like James Titcombe, Anne Dixon, Rosi Reed and siblings like @waketheworld. How can this be?

So where are we at? In no particular order, as always:

    • One staff member so far is being investigated by their professional body after a referral we made. Sloven staff disciplinary proceedings are like a stuck record; continually finishing in the ‘next few weeks’ or ‘ongoing’.  Shameful, shameful delay and prevarication. The Verita report makes clear individual staff failings. It should not have been our responsibility to do this.
LB 1 million

CEO, Sloven Health, 24.2.14

  • The Death Review is out to tender and will take 4 months.
  • The police investigation is ongoing.
  • The second review into LB’s death, covering transition, mental capacity, restraint, why he went into the unit and broader governance issues, is underway by Verita. Due to be completed early next year.
  • The pre-inquest review meeting is on November 25th.
  • The Slade House site is shut to patients. A problematic silence about what will happen to this prime chunk of land continues. And what is happening to people who would have been admitted to the units there. Nothing like allegedly sweeping in to take over known problematic provision in a different county, allowing it to worsen (till something serious happens), closing it and flogging the land. Nope. Nothing like it.
  • On a brighter note… the #LBBill is going at a pace that Sloven should take lessons from (no vimeo in sight). The easy read version of the draft bill is being produced and will be blasted out for discussion in a week or so. Complete energy, commitment and passion.
  • The LB Fighting Fund total so far, after remarkable efforts is £24, 267.77. Wow. Wow. Just wow. So many people, many of whom we’ve never met and who never met LB, have contributed to this amount. Just brilliant.

We’re heartened by the remarkable solidarity #justiceforLB demonstrates. We ain’t got a vimeo budget but there are countless people willing to step up and do all sorts at the drop of a hat.

We’re also fucking delighted that our quirky dude, who loved buses and laughter, seems to have touched, and even impacted on, people’s lives. What a legend. LB bus museum

Beyond sanction

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I read the latest Sloven minutes properly today. As always, large chunks of incomprehensible guff and spin. For example: Simon Waugh asked for further clarification as to the reference to the use of “appreciative enquiry”, as stated in the Director of Quality’s report; Chris Gordon explained that this was a tool used by the CQC which looked to triangulate sources of information and used a framework of support and challenge to develop learning organisations. Eh?

Further on was a screeching brake moment. Page 16. A  glitzy pink table refers to the investigation that cheeky David Nicholson committed to, back in the day. One of the objectives of the Connor Manifesto.  As the Real DN outlined in his letter to us in March;

We are also asking that Southern Health NHS Foundation Trust provides the NHS England Area Team with details of all the patients who have died whilst receiving mental health and learning disability services since the trust was formed in April 2011. An independent panel, commissioned by NHS England, will then be formed to review all of the information, including the cause of death, and make a
recommendation as to whether further investigation is required.

All good. An independent panel and all that. Given both LB and Nico Reed were whizzled to the ‘natural cause’ pile before you could say Slovenshite (and the broader shocking statistics around mortality among learning disabled people) it’s crucial to have a good look at the premature deaths of learning disabled people (sob) and make sure failings/issues aren’t being overlooked or ignored.

The Slovens clearly have a different take on this review. Bit like their response to the recent Monitor enforcement action against them which was presented almost in a comedic way (er, just making a few plans with current bezzy, Monitor, over tea and cake…) The pink table states the ‘current position’ as:

Chief Operating Officer & Deputy  Chief Executive informed the Board that Thames Valley LAT was coordinating this review, which was comprised of two phases. The first related to looking at benchmarking and comparative data to determine whether the Trust was an outlier; she noted that if there were any areas of concern, a second phase would be commissioned, which would be a deep dive review.

The final column in the table states that the review is ‘proposed for closure’. Proposed for closure. Before it’s even started.

Wowser. What happened to the independent panel? And review of all information?

What a breathtaking example of what? I don’t know. Spin? Gobsmacking arrogance? Stupidity? Denial? Of ‘too big to fail’? Certainly how Sloven don’t get people. Well not learning disabled people. Benchmarking and comparative data? We’re talking about patients who have died unexpectedly.

And how can they dilute a serious review into a bit of number crunching? When it ain’t even their fucking review?

I’m out of ideas. A year on and there has been no sanction against any individual/s or the Slovens/Local Authority or Clinical Commissioning Group. And now it seems we have to police the small steps (we think) we’ve achieved.

The system stinks like a Stinky Pete leather tannery in Morocco. And the Slovens seem to have a unlimited supply of mint leaves to stuff under their noses and pass through. Unaffected. And seemingly unconcerned.