Slade House, dude selfies and the stars

An incredibly difficult week for some Oxfordshire families who are living the lack of appropriate support at a knife edge, or so much worse. I’m going to briefly highlight some good stuff that is happening in between the shite.

Oxford Health are taking over from Sloven (in July officially). They have picked up a right old mess but the new learning disability lead seems to be a rare senior NHS professional who has human written all over her. At an extraordinarily tense and distressing meeting this week she got it, she acted and she demonstrated she was a force for good. Fran reminded me this week it was 16 years ago we did a survey of the experiences of families in Oxfordshire. This flagged up the terrible stress families were under. She messaged me; “Looking back we were so naive in our basic hopes and expectations.” [Howl].

Families are working with people like Noelle Blackman, from Respond, and Oxford Health to do their best to create something that actually works for Oxfordshire dudes. What that will be isn’t clear though the expertise families are offering, together with a Trust who listens and seems willing to run with thinking outside of the typical, constraining and soul destroying, is deeply reassuring.

Finally, the Slade House site is not being trousered by Sloven. Our relief that this particular fight has been extinguished is beyond words. Nearly four years now, of campaigning at an intensity that cannot be indefinitely sustained, the prospect of chaining ourselves to the railings filled me with despair. This is a fucking ‘victory’ [not the right word but there are no right words] against injustice.

The deal (not quite signed yet) apparently is if Oxford Health sell the site within 5 years, Sloven get 50% of the dosh. This seems fair. Here’s to some creative planning around how this site can be used. I mean, just imagine if Oxfordshire became a pioneer in actually getting it right? From rock bottom to actually reaching for the stars…?

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.

A tale of two releases

A Bermudian journalist, the only independent journalist on the island, popped up on twitter this week, tracking down details of the recent announcement that St Andrews Care (who were the subject of the documentary, Under Lock and Key) are going to ship patients from Bermuda to their ‘care’. He published this story.

Here is the original news release published by St Andrew’s. Tiny type, sorry.

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And the revised one after the press started to get interested.

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To save you squinting too hard at them both, the main differences are:

St Andrew’s has achieved a ‘new first’, not by winning ‘an [sic] contract to provide care to forensic patients’, as originally stated, but by ‘by being selected as a preferred provider to support the Bermuda Health Hospitals board in providing care…

Bit of a difference, raising questions about what is actually going on between St Andrews and the Bermuda Health Hospitals Board. And whether there is there any scrutiny of these negotiations.

The sentence about Bermuda being a small island with limited resources and people with mental illness being held in the island prison system has been removed.

Mmm. Probably best not bite the hand that feeds you. The original statement suggests that, possibly, there may not have been much consideration of the tender process, context and history on the part of St Andrew’s.

Instead of the the ‘contract being awarded at the end of February’, the story has changed to ‘contract negotiations are now being started’.  Puzzling. How these dance steps are being played out between the Bermudian system and St Andrew’s, outside of any apparent transparency,  engagement or public consultation is chilling.

The second press release drops any mention of three patients ‘set to travel to Northampton as part of St Andrew’s Men’s mental health pathway, with up to nine patients due to join St Andrew’s in the coming months’. I’m relieved this is currently disappeared. The way it was written sounded like the first three patients and the subsequent 9, were coming to join some sort of corporate team building exercise. Not wrenched thousands of miles from homes and families they will, more than likely, never see again. I’m sure it won’t stop this happening but any reflection on and consideration of what is being plotted can only be a good thing.

Finally, the statement from the Executive Director of Nursing and Quality has been revised. The opening sentence about ‘bringing the charity income from new sources’ is deleted. 

Income from new sources… Before the health and well being of these patients. Extraordinary. Since when did a massive charity need new income? Given the gargantuan salaries of the exec board and this latest money spinner, the Charity Commission should be having a bit of a snifty around this bunch. I can smell em from here.

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.

A cull and a shedload of ‘shoulds’

So, the Sloven non-executive directors are no more. The interim Board Chair, Alan Yates, published the news earlier. He had the decency to let us know in advance which we appreciate. He’s also clearly got some sense getting shot of them. Though really you couldn’t get much more of a “fuck me, this bunch of muppets are utterly clueless” situ. Just look at the very potted timeline, the BBC pulled together:

The failings drag back to 2011 when the Trust gained Foundation Trust status, and have been well documented since then. A shedload of public dosh has also been spent on repeatedly reviewing the Trust governance. Simply shameful. Here’s hoping some of the remaining execs follow suit sharpish.

In other news, the National Quality Board guidance, an outcome of the CQC Deaths Review, was published yesterday. More guidance. Drenched in typical ‘guidance’ statements like; To ensure objectivity, case record reviews should wherever possible be conducted by clinicians other than those directly involved in the care of the deceased. 

I should start walking more again and give up booze and chocolate. We should keep the house cleaner. Of course case record reviews shouldn’t include the involved clinician. Seriously. Is this how far we’ve come?

New principles for engaging with bereaved families are included in the review, handily provided in a box on p15. Eight bullet points and 7 ‘shoulds‘. I remain so blinking relieved and delighted that #JusticeforLB has been an explosion of colour, fun, joy, beauty and brilliance. A tonic to offset the utter banality and mediocrity of official responses to scandalous practices… 

As part of the CQC Deaths Review spillage, there’s a swanky ‘Learning from Deaths Day’ arranged next week. In a move that both exemplifies a) the complete lack of understanding (still) of what needs to change by those who should know so much better, and b) the disconnect that exists between the different silos of NHS England, CQC, NHS Improvement and the like, this day was originally closed to families. I know. (Almost) cue the old, eye leaking emoji…

Eh? What was that Jezza? Sorry, stumbling on bullet point One right now. Here’s a reminder in case you’ve forgotten (or not been told): ‘Bereaved families and carers should be treated as equal partners following a bereavement..’ Oh and bullet 8: ‘Bereaved families and carers who have experienced the investigation process should be supported to work in partnership with Trusts‘…” 

You couldn’t make it up really. Just words. Put together in a report like shape. Same old words, same old order. Like browning blossom falling onto the damp ground below. Soon to disappear and be forgotten about until the following spring when new versions of the same appear.

With some agitation by various people, including George Julian and Neil Churchill of NHS England, families were eventually allowed to attend this day which is organised as a typical NHS exercise in heartsink pomp and ceremony. Swerving the opportunity for a humane, passionate, critical, efficient, collective and effective response to a scandal that obviously demands alternative and innovative responses, the same old turgid suspects are lined up to talk the same old, same old talk. Durkin, Richards, Mackey, Hunt and more Durkin. The 7.5 hour gig includes 10 minutes of a family member, an hour of scheduled discussion and 20 mins of Q&A.

 

We could probably write the script of the day now and save £££s. Not only in the laying on of the event but the time taken out of attendees’ everyday lives. I feel so sad that the brilliant and groundbreaking work of the Mazars team is being dragged down into this well trodden, hierarchical, tedious and mediocre NHS furrow. There was a moment, back at the end of 2015, early 2016, when actual change seemed possible.

Instead, it’s business as usual and a shedload more shoulds.

Postscript: Had a timely reminder via Twitter as I pressed publish that we have held the Sloven board to account (a CEO, 3 Board Chairs and 5 NEDs so far.) Yep. We bloody well did. Cracking work #JusticeforLB and continued drops of brilliance.

A jumble of almost deliciousness…

This is going to be a jumble of a post, because it is a jumble. In no particular order…

An email earlier from Rory Toher, a documentary filmmaker/journalist. He attended Connor’s inquest and came for the post-determination (verdict) booze and nosh up round the corner from the coroner’s court. He emailed about the documentary Under Lock and Key which is on Channel 4 at 10pm on Weds this week.

Ali (Millar) and Liz (Byrne) [filmmakers] were in touch with me every day that I was in Oxford, and hung on every update from George’s live tweets; so it’s been a huge help to have the Justice for LB campaign making such a huge noise around the issue of vulnerable people locked away, apart from their families, in uncaring institutions. It was certainly the movement that got this film going, so we’re hugely grateful to you all. 

Wow. And how much do I love the courtesy, thoughtfulness and commitment that has characterised pretty much every interaction we’ve had with journalists over the past few years? They get the importance of what is happening to certain people (still).

David Harling has finished his fourth animation. The first three are embedded here because each one deserves to be watched and then watched again:

The fourth takes things to a whole new level of extraordinary. It’s being launched at the NWTDT conference in Blackpool on Thursday (suspect a shedload of tissues will be needed). And if it doesn’t kick ass some sort of tangible change, I don’t know what will.

On Wednesday, Mark Neary and I are talking on a panel at the ‘Autistic Wellbeing‘ seminar, part of the ESRC Research Seminar Series: Shaping Autism Research organised by Damian Milton and Liz Pellicano. Saturday is an International Women’s Day event at Doughty Street Chambers; What more can the Law do for Women? Again, a packed agenda of brilliance.

Finally, my book (title still being thrashed out) has a provisional publication date of September 17… LB is seriously rocking the the agenda, along with Thomas, Nico, Danny and others. As they blooming well should be.

image-17

 

My son is not a teaching tool…

Been a bit quiet on here as I concentrate on bashing out my book evenings and weekends. I’m trying not to get too angry as I’m determined to produce a good read (the intense rage is in temporary abeyance).  Sadly, the 5.30ish-9pm space I plotted tonight, as I lit the fire and made sure there were some cans of Heineken in the fridge, was blown out of the water by the latest in the (almost farcical but sadly not funny) shit stream blown out of the backside of a Jeremy Hunt, NHS Improvement and CQC combo.

Yesterday, the Expert Reference Group (ERG) for the CQC Deaths Review (published in December) met to look at how the recommendations of the report are being implemented. Rich and I had concerns about this review (reinforced by the final report) but there’s always space for action. Except for when there ain’t, as it transpired.  For some reason, a new set of Department of Health bods (clearly in Jeremy Hunt’s human factor crusader back pocket) are now taking the lead and acting on recommendations. Family involvement? You might as well whistle down the wind.

Today, we were sent a cheeky copy of a letter sent to trusts from the CQC and NHS Improvement, detailing changes to be implemented as an outcome of the death review. A letter not shared  with the ERG yesterday or any of the families who wasted valuable time and emotion contributing to the review.

The full letter can be read here: 17022204-learning-from-deaths.

There is so much wrong with it, I can’t be arsed to identify the Eddie Stobart lorry size holes throughout. There are patches of ‘if only…’ or ‘almost hitting the mark’ but the unnecessarily tentative, non-mandatory, half arsed and convoluted statements obliterate them. The letter is almost unreadable in ‘sense’ terms because of the contortions the authors have gone through to remove any hint of wrong doing, failure, negligence, from it.

Just one early paragraph:

jezErasing the humanity of patients and presenting their deaths as teaching tools is about as offensive as you can get in my book, particularly when it’s dressed up in such benign terms as ‘the care provided’.  Sloven, ironically, excelled at the teaching tool shite three years ago with a training powerpoint that, as far as we know, is still available on their intranet. Our request for confirmation that it has been removed, ignored.

When I think about Sloven’s attempts to not disclose records or publish reports which they dressed up as protecting LB’s ‘confidentiality’ after his death, and look at this powerpoint, another part of me dies. That no one, who should, has done anything about this, makes that rage bounce right back from the abeyance pen… Could you please do something about this?

Someone must be responsible???

powerpoint

Meanwhile, the national Learning from Deaths conference mentioned a couple of times in the letter is arranged for March 21. Leaving ‘open, transparent and collaborative’ at the invite only door:

learning-from-deaths

Nearly four years on, we’re left with:

  • Dead patients treated as teaching fodder in a human/Hunt factor health world.
  • Families ignored, other than in particular, staged and performative (that is, fake) spaces.
  • No change in the lives (or premature deaths) of learning disabled people.

 

It was my dad’s 80th birthday this week and we had a big old lunch on Sunday with family and my parents’ friends of 60 or so years. The swearing and the anger I often express on this blog cropped up chatting with one of his mates. I’m sorry Sid, it wasn’t clear whether (or how much) you disapprove of the swearing (and I completely appreciate and love this ambiguity) but this bunch of fuckingcuntstainwankdrops are clearly incapable of implementing effective change. It couldn’t be clearer.

 

 

 

A whistle stop catch up…

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Been writing like a batshit from hell since Christmas. Weekends and evenings, just thundering away on the keyboard in the back room. Bess often keeping me company on a cushion by my feet. Sometimes not. The book contract is being thrashed out. I’ve pretty much reached the proposed word count; it’s a question of trying to make a tale that doesn’t typically float many boats, into a page turner that grabs attention and makes the likes of LB (Danny Tozer, Nico Reed, Thomas Rawnsley, and many more) human.

I’m on it, with remarkable support.

Other stuff that has been happening (in random/(reverse) order…)

  • The NMC only communicate gibberish so fuck knows.
  • The GMC tribunal date for Dr M has been set for two weeks in August.
  • The HSE are hoping to share further information in the next few weeks.
  • We’re getting an update from the police on Friday evening.
  • David Harling is in the final stages of his fourth animation… this one will include voices… [howl].
  • Caiolfhionn Gallagher was sworn in as a QC this week. Something so unusually right, something so deserved, and so blooming reassuring in terms of the ways in which she will, undoubtedly, continue to use her ferocious intellect, human rights expertise and extraordinary empathy to fight/right as many wrongs as she can in her waking hours.

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Loved by mum and mermaids…

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Aww… found some school stuff of LB’s I’d not gone through. Such treasure. Including a funky LB Warhol pic (eerily prophetic of Maurizio’s artwork), and a ‘Winter holiday diary’ in which he’d written

Went to the rare breeds farm and let the goats out.

That was so, so blooming hilarious

There was ‘Health and Safety in the Workplace’ work where, in answer to the question ‘Why are these rules important?’, LB replied ‘You need rules to keep safe’.

[Howl].

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The heirloom

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Alicia Wood drove from Devon late afternoon yesterday. And pitched up at ours, en route to London, with her longtime friend, Maurizio Anzeri, and the artwork he created from a photo of LB. We’d seen, and loved, photos of this picture, which was recently exhibited in Aviles with the #JusticeforLB quilt and other brilliance, but it’s impossible to capture the delicate, intricate, extraordinary (and precision) golden thread, stitching/embroidery on camera. (Sort of ironically.)

It is completely mesmerising.

I can’t put into words what Maurizio creates with his work. He typically works with ‘anonymous’ vintage photos, creating patterns over faces with embroidery thread. He didn’t do this with LB. He sort of wove the magic with him, through him. For him.

One of the saddest things that haunts me (apart from constantly missing LB) is the gradual loosening/distancing of him from the continued unfolding of our lives. I know it’s kind of inevitable. Christ. We can’t keep banging a ‘remember LB’ drum every other minute, despite how much I want to.  I now understand how much each of us who knew (knew of) and loved LB in our various ways, always will. How could we not? And I’m beginning to develop an encouraging, while patchy, engagement with the ‘he’s always with me, in my heart’ type thinking.

Maurizio has produced something that will always prompt/demand questions, interest and fascination among family and friends. He has created an heirloom. And that is truly magical.

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