Four deaths, heads and a medical director

Between Oct 2010 and May 2011, four men died unexpectedly in St Andrews, Northampton. All patients in the Grafton Ward; a 20 bed, low secure ward. Bill, one of the four, featured in Under Lock and Key a few weeks ago. You’d imagine that four patients dying unexpectedly within a six month period in the same ward would send shockwaves around St Andrews and wider.

A copy of the investigation into these deaths landed in the Justice Shed yesterday evening. The terms of reference suggest that there was some switched on thinking around these patients’ human rights:

No. The Charity clearly didn’t understand the word ‘independent’ or their obligations arising under Article 2 of the European Convention of Human Rights. The investigation was led by the St Andrew’s Medical Director supported by the Head of Research and Development, Head of Physical Healthcare, Head of Health and Safety Investigations and Head of Pharmacy. About as far from independent as you can get.

Unsurprisingly, there was zero consideration of the four lives that ended, prematurely. The remaining terms of reference were:

The executive summary states:

It was the patients themselves what done it. With their long standing medical problems (clearly untouched by the long term leading specialist care provided by St Andrews at enormous cost to the NHS and other commissioners). One patient had lived there for 18 years. The day before he died, he refused to have his vital signs checked on two occasions.

Whatever way you cut it, this strikes me as a catastrophic fail on the part of St Andrews. “The UK’s leading charity providing specialist NHS care.”

They couldn’t even be bothered to proof read the final report.

Bedshaped…

Today was not a good day (Brexit aside), with a snippet of sunshine. A good mate and her family are enduring a family life that sits outside of the outer ring of anything remotely resembling acceptable. Their biggest fear right now is that their son will be admitted to St Andrews, in Northampton.

Yesterday, Channel 4 held a round table event to discuss the recent harrowing Dispatches documentary, Under Lock and Key, featuring St Andrews. Despite their glitzy website and talking the talk, St Andrews clearly falls short of providing the world class leading mental health services they claim to do. In fact, it’s hard to imagine what the £11,600 a week buys for some patients (other than the enamel removing senior executive salaries). This doesn’t stop NHS England and other commissioners flashing the cash regularly and consistently keeping people within their increasingly prison like walls.

Just this this week, the St Andrews adolescent provision received another ‘requires improvement’ CQC inspection report. Scrolling through the ‘view all reports’ link shows that their adolescent provision has required improvement since back in the day. Wow. Requiring improvement and charging more than it costs to live at Disney World*. This is, simply extraordinary.

The latest inspection report shows that, for your buck, you get a hefty wedge of seclusion and restraint. Of the four wards of 10 patients (adolescents) in each, the prone (prone) restraint figures per shite named ward (of an overall 905 recorded restraints in the past year) are; Acorn (52%), Bracken (33%), Fern (26%) and Brook (11%). This is, simply, scandalous.

Acorn, Bracken, Fern and Brook. Elsa, Mickey, Snow White and Mowgli …

The Channel 4 gig demonstrated the passion of the filmmakers and families featured in the film, and their commitment to ending the inhumane practices so many people are subjected. I’ve a lot of love for Alison Millar and team, who clearly forged relationships with families and did a shedload of research, and Channel 4 for hosting the event with gravitas, exemplary time keeping and breakfast. The lack of public outrage after the film was shown demonstrates the mountain they, along with so many of us, including the indefatigable Norman Lamb, are facing in trying to stop the careless brutality inflicted on so many people and families.

Sadly, this brutality doesn’t seem to penetrate the web of collective myopia too many senior people implicated cosy into. [There were no representatives from NSE England or the CQC.]

I was sitting next to Laura and Burt whose son, Bill, died from constipation in St Andrews. Laura, at one point, asked the Northants MP if he had ever stepped foot inside one of the new, enclosed quads that the swanky new build incorporates. A constrained daylight with no view. He didn’t answer.

I had a three hour meeting this morning, in a local hotel meeting room, providing supplementary evidence for the GMC. This is in advance of the tribunal of LB’s psychiatrist, scheduled for two weeks in August. Over four years after LB died. It was a deeply upsetting experience, despite the sensitivity of the solicitors collecting the evidence. How could it not be?

I’m listening to Keane tonight. The tears are back. Rich said earlier; “I feel we’ve gone back three years”. I dunno. I’m kind of out of ideas.

Where are we at?

  1. Certain people are dying premature and preventable deaths without scrutiny. Trying to gain any accountability involves unspeakable efforts by families.
  2. Commissioners/NHS England don’t know what good looks like and chuck dosh at crap. This generates ‘credibility’ and licence to provide further shite, leading to the growth of large scale institutions like St Andrews.
  3. There is little, or no, good local support to either prevent admittance or enable people to come out of units.
  4. Families endure unspeakable situations to avoid inpatient admittance.

It is a pile of shite. Just as it was four years ago when LB was admitted to the unit.

*Thanks to Tim Keilty for the number crunching here.

Johnny Rotten and the legitimacy of anger

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.

Humanity, value, love and sunshine…

Today, as part of the International Day of Persons with DisabilitiesLearning 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.  

 

 

Jeremy ‘witch Hunt’ and the mother blame

Was reminded all week about the terrible mother blame that went on across LB’s inquest which was held a year ago. Just a few tasters:

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1

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Unspeakably awful. Again my brain weeps This is the NHS…

Sadly, blaming us has been a consistent theme since LB died. Sloven have sent extraordinary briefing reports to all and sundry blaming us for hacking into staff twitter accounts and trolling. Oxfordshire County did a corporate number with their sordid secret review of me, while one of their commissioners wrote a terrible letter tearing me to shreds (I’ve never met the woman who is apparently deeply christian).

Jeremy Hunt seems to have joined the blame brigade now. He was interviewed by David Fenton in a bizarre piece on BBC South last night. Between them, pushing a ‘witch hunt’ version of events. Fenton even described how Sloven staff are too scared to go out with their Sloven lanyards on for fear of reprisal.

Wow. A witch hunt. An unfounded persecution?

For the record.

  1. There was no ‘witch hunt’ after Percy. 
  2. She didn’t form part of our Connor Manifesto.
  3. We have consistently called for the resignation of several exec/non exec members (Gordon, Spires, Grant, Berryman, Stevens…)
  4. Percy, and the above, should have gone a long time ago.
  5. Our campaign has always focused on the executive board (and LB’s responsible clinician) and not the 9000 or so staff members, many of whom I’m sure do a brilliant job.

I wonder why we are blamed. It’s fucking outrageous. We’ve (collectively) done more to generate awareness of learning disability issues than major charities with enormous budgets. For free. #JusticeforLB has been like a second, full time job over the past 2.5 years. We’ve worked our socks off. We’ve been told we’ve encouraged other families to campaign, and fight for accountability for catastrophic events harming their loved ones. What happened to LB is taught on various undergraduate and post-graduate courses across the UK. School kids have written about him for homework. We’ve generated a shedload of brilliant resources (a justice quilt and other art, blogs, lectures, songs, short films, animations, the LBBill, the first ever inquest tweet archive and loads more… see below). We’ve been consistently reasonable in the circumstances (with liberal swears).

The families and ex-Sloven governors have shown remarkable restraint given everything they’ve endured. Peter Bell is under investigation by the trust (I know) and has declined to sign a gagging order in order to see the draft report of evidence against him (I know). (There was no investigation of Malcolm Berryman’s actions in sharing the Mazars review with his son before publication). John Green has been a model of reasoned, informed, restraint in trying to highlight failures in both Sloven and the wider organisation of the NHS [click here for the abridged version of his report]. Repeated appearances on national and local news by Richard West, Maureen Hickman, the Hartleys, Angie Mote and others have been remarkable for the consistently careful, considered and, again, restrained commentary in the face of such (continued) horror. The behind the scenes email exchanges are reflective and respectful.

It’s a very dangerous precedent if any member of the public who asks questions or seeks lines of accountability from those in power is dismissed as a witch hunter.  Cheap and lazy journalism by the likes of David Fenton, who has failed to have even analysed that which has been put in the public domain by campaigners, is simply wrong. The serial failings that we, and other campaigners and journalists have largely unearthed sit well and truly on the doorsteps of the Sloven board (and some governors), Jim Mackey and the NHS Improvement gang, and, er, Jeremy Hunt.

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An antidote to the above; some #JusticeforLB magic. The middle pouch is an Arabic justice pouch, the bus ipad holder is made from material used to decorate a lorry driver’s cab and the third pouch holds the complete music for Tippett’s ‘A Child of our Time’ to celebrate the performance in memory of LB at Warwick University in June. Brilliance.

The JT Show

For some time now, we’ve had a bit of a beef with Mencrap in the Justice Shed. Not least because they continue to make the extraordinary claim to be ‘the voice of learning disability’. A claim so inappropriate I don’t really know where to start. I’ll just leave it at their failing service provision (details of which are buried deep on their website…)

drummond

Well, and the ludicrously extravagant Strategic Executive Assistant to the CEO post currently being advertised to do the work that the CEO should probably be doing herself.

George has written about her experiences of working for Mencrap and, more recently, of daring to challenge the organisation on live television. Post Victoria Derbyshire, there was further approbation from a couple of parents on twitter. Including a baffling post about ‘Two mums’ that seems to accuse #JusticeforLB of being the equivalent of a Young Ones tribute band. Ho hum.

Anyway. Back to today. The Telegraph (I know) ran a spread about Mencrap CEO, Jan Tregelles (JT). This coincided with Mencrap’s Learning Disability Week and was published in their Lifestyle/Women section.

What did we learn from this article?

JT dined at the Sloane Club that day (a reference for typical Telegraph readers) and “Mencrap’s about giving people with learning disabilities the opportunity to experience life to the full”. She doesn’t mention it but I hope the learning disabled people she took with her enjoyed the “posh lunch with the great and good”.

The new Mencrap campaign faithfully reflects JT’s vision for learning disabled people. Such power and omnipotence. Blimey. I hope she’s using it well….

How are you using it JT?

jt

Oh boy. This generated some sandwich related mischievousness on twitter. Not surprisingly. From the Sloane Club to cheese sarnies down a well in the space of a few sentences*.

ferg

JT could not peg her true colours to the learning disability gravy train she is riding more openly. Empathy? What about empowerment, autonomy, civil and human rights… ?

Sadly, the article doesn’t end there. It rattles through clothes, grooming, family, number of marriages and volunteering at Citizen’s Advice where something (not revealed) ‘clicked’ and bounced JT to Mencrap where she became PA to the ‘director’. From there it was PA to CEO.

And a series of statements so blinking depressing/enraging:

I just wanted to do something that I wanted to do. 

I would have done it for nothing. 

I could do support work now though.

Why, when you get on a bus and there is someone a bit odd are you instantly fearful.

We need to equip people to see someone with a learning disability as a person

Now Jan. I know you’ve blocked me and you ain’t interested in anything #JusticeforLB has to say but seriously, if you really want to make a difference, you are going totally arse over ‘immaculately polished’ tit about it.

  • Public attitudes really ain’t the main problem. The establishment, including Mencrap, is.
  • In Learning Disability Week the focus really ought to be on learning disabled people.
  • You should have a look at Learning Disability England. This fledging organisation has a more legitimate claim to the voice of learning disability already.
  • I really wouldn’t do support work if I was you. I’m not sure you’d be very good at it.
  • There are some serious issues around what Mencrap as an organisation do. Not least the services you provide. If you need the support of a Strategic Executive Assistant perhaps the focus of this role should be less about public relations, media and project management objectives and more about actually improving people’s lives.

But what do we know?

Postscript: To those who think it’s heresy to critically challenge ‘the voice of learning disability’, I say do one. After you’ve done the sums.

*Turns out sarnygate was freeloaded from this Brene Brown Tedtalk… (thanks to  FionaQuigs for the sharp spot).

Oh Mencrap… really?

Hearing rumours that Mencrap have lined up a ‘Five years since the Winterbourne View Panorama film was screened’ media thing. Tomorrow.

Sigh.

Really?

What do they actually do…? (Serious question.)

Brilliant journalism uncovered scandalous, horrific, abusive practices in a (privately run) assessment and treatment unit in Bristol back in 2011. This generated a moment that led to a mass signing up of pretty much everyone/organisation connected to learning disability in the UK. To what turned out to be a combo of earnestness, pomp, ridiculous bureaucracy, ultimate pointlessness and ill thought out promises. At enormous cost.

The Winterbourne View Joint Improvement Programme (WVJIP). [Shudder].

A programme that gradually petered out into a Bubb’s breakfast. The 50 odd signees remaining largely silent on their  collective failures.

We’re left with a  handful of dedicated and deeply committed staff at NHS England sticking their fingers in various life dykes with the support of pockets of dedicated and deeply committed groups/individuals across the country.

Pretty much the same number of people continue to (not) live impoverished (and brutalised) lives in assessment and treatment units across the country as there were in 2011. Many, many more are leading impoverished (and brutalised) lives in independent supported ‘homes’. Some of which are run by Mencap.

Winterbourne View has remained the cultural touchstone for repeated and deeply serious failings in learning disability provision. Why? I suspect partly because it suits Mencap. A quick win for (vacuous) media coverage. And partly because it was run by a private (not NHS) provider.

What was exposed at Winterbourne View was barbaric. The publication of the Mazars review in December 2015 flagged up so, so much worse. The systematic ignoring (or worse) of the preventable deaths of learning disabled people by an NHS trust. Less than 1% of unexpected deaths were investigated.

Less than 1% of unexpected deaths were investigated…

The response of Mencap to the Mazars publication?  Puffery about Mencap greatness. Shockingly and deeply inappropriate.

*Mencap’s repeated and self serving focus on ‘Winterbourne View’ further demonstrates the gap between Mencap and the people/families they claim to be the voice of. Learning Disability England is being launched on June 14. Reclaiming ‘voices’. Thank fuck.