
Another day, another delivery
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I went to the Isle of Wight Adult Safeguarding Board conference this week. Going to speak, meet, or be part of an event, as ‘LB’s mum’ or part of #JusticeforLB tends to be fascinating, depressing or a waste of bloody time. We’ve sort of learned, in the Justice Shed, that these things are typically about pomp and performance (and box ticking). Not substance. The Isle of Wight invite seemed different, the ‘invitee’ clearly seemed to get it and I went.
Graham Enderby kicked off the day. Talking about Harry and ‘the Bournewood Case‘. A remarkable story of (family generated) tenacity, guts and integrity. And wrongness. Leading to ground breaking changes. His story featured an early appearance by one of our favourite barristers. Human rights in action. Simple as. Graham socked it to the audience of 200 or so, health, social care and police bods, housed for the day in an enormous boathouse on the Cowes waterfront. Without artifice, excuse or fudging. The following speakers similarly demonstrated integrity by the bucketful. It was uncomfortable at times. Informative. And reassuring that professionals got it and were prepared to step up and say what needed to be said.
My bit was towards the end. Before showing The Tale of Laughing Boy I carelessly asked how many people had heard about LB or #JusticeforLB. I felt almost apologetic playing the film to such an audience a spit from the home of Sloven. They must have had a constant diet of LB, #JusticeforLB and the Mazars review for months now…
Less than half (easily) of the room put their hands up. One of those cartoon screechy brake moments. Really?
Re-watching the film, made this time last year, was a further bash in the chops. The naivety around the ‘reaching for the stars’ stuff. Back in the day. Pre inquest. Pre Mazars publication. Pre every other atrocity that has happened or continues to happen. In full view.
The lack of response to the Mazars review is scandalous. Jezza Hunt and his merry band of human factor/HSIB peeps are, at best, naive to believe, not care, (or just argue) that creating ‘safe spaces’ and a no blame culture within the NHS will lead to a reduction in the premature deaths of learning disabled people. This is simply absurd. And closes down any scrutiny of the systematic erasure of the lives of people who are clearly perceived to be expendable and burdensome within the NHS (and social care).
I was surprised by how people responded to the film/talk… Genuine distress, discomfort and talking about what action to take. I shouldn’t have been surprised. That low bar kicking in again. This is exactly how people should respond to hearing what happened to LB and the unfolding of events since. Something Jezza, NHS England, Monitor and the CQC have systematically tried to stifle.
I caught the ferry back with Graham. We shared stories, horror, outrage, atrocities and chuckles.
I wish there was similar openness, recognition and engagement from Jezza, CQC, Monitor and NHS England to what is now a clearly documented, evidenced and consistent happening. But what’s a few (hundred/thousand) learning disabled lives between mates?
I wrote an ‘opinion’ piece for the Guardian about the latest Bubb stuff this week. Loftier heights than this blog without the swears really. I’m flagging it up here because I’m chuffed they asked and beyond delighted it’s had so many shares and brilliant comments. Learning disability hitting a mainstream groove. About bloody time.
Today we’ve an extended family trip to Brighton. To watch 12 Angry Women at the Brighton Dome. Edana Minghella, one of the 12 commissioned writers/artists, has written a short play and composed a song about LB. Her script and song are simply spine chillingly brilliant. And devastating.
Yesterday, Edana was on BBC Radio Oxford talking about the play. [From 10.48 mins here]. Having walked past an Eddie Stobart lorry on the way to the studio…
Turns out Mark Attlee who plays Kenton in the Archers is the Generic Official Person (GOP). I don’t listen to the Archers. But Edana nails the contrast between the chilling interjections by the GOP (a lukewarm brew of Sloven, NHS England, CQC, Monitor, Oxfordshire County Council, Department of Health, coroner) and the love and humour that is part of many families’ everyday lives.
A photo from rehearsals yesterday.
So LB will be on the stage tonight. Nearly three years to the day he was admitted into the unit. A big old hanky moment. But how blinking cool?
Back in the day (2011), a staff member wrote a letter to the Sloven CEO raising concerns about various things including safety. She concluded:
The CEO bounced the letter to the Associate Director of Governance who wrote back saying that there were concerns and unfilled vacancies in the governance team including a lack of suitably qualified health and safety leadership. An interim Head of Health, Safety and Security was to be appointed for 4-6 months.
This interim head was Mike Holder. A couple of months later, Holder resigned over concerns about Sloven safety culture. He wrote a report in Feb 2012 detailing these concerns:
At present it is my professional opinion that Health and Safety is considered an adjunct to the Trust’s core business rather and integral element of it. This assumption is based on my experience with the Trust to date, the lack of resourcing applied to the management of health and safety and information governance with regards to the maintenance of statutory records.
Blimey. Warning lights a go go.
But no. By this time the Sloven headlights were on an NHS organisation, the Ridgeway Partnership, 100 miles away in Oxfordshire which included the STATT unit in which LB died. Ridgeway had some chunky land icing to tempt outside Trusts (including Calderstones) to take it over.
The story can be taken up at this point by the shuddery Verita 2 report* which found that after Sloven ‘won’ the Ridgeway in November 2012, the roadshow bolted back to Sloven towers, more senior Sloven staff resigned and the Oxfordshire services were left to fester in a slow cooker of discontent, fear, malaise and isolation from the mothership. Extracts from the Verita report state:
6.42 Difficulties arose soon after the acquisition in ensuring the availability of sufficient senior and experienced divisional managers to take forward vital post-acquisition actions. In particular to progress actions arising from the various quality assessments that had taken place before the acquisition.
6.50 A ‘business as usual’ methodology for a newly acquired service may appear appropriate if the service being acquired is mature and relatively problem-free. This was not the case in the Ridgeway services. Contact Consulting had warned of issues in local leadership; governance of serious incidents, along with particular difficulties about care issues in non-Oxfordshire services. There was also a need to begin dealing with the cultural change required of an established learning disability service joining a large mental health and community trust with a small learning disability service.
The writing on the wall. A baguette crumb trail through the NHS forest of cover up, fakery, denial and self interest. From 2011 to the present day. Evidence, evidence, evidence. Death. And evidence and death.
So where are we at? Two months after publication of the Mazars death review. Almost three years since LB was admitted to what we thought was sharp, specialist unit with a tiny number of patients and a shed load of staff… Five years after the original whistleblowing letter? Hold on to your hats, folks. We’re waiting for Monitor (NHS snooze hounds) to appoint a temporary, er, Head of Health, Safety and Security Improvement Director.
Yes. Really.
*This report really makes your skin crawl in its tortuous weaving through damning evidence to a conclusion that the Sloven board were not connected to LB’s death. The author left Verita straight after it was published.
I had a phone interview earlier with an investigator investigating Sloven nursing staff on behalf of the Nursing and Midwifery Council (NMC). This has taken so long to happen because Sloven spent an age and a day doing their internal disciplinary investigations [of course] and consistently refusing to say who they were investigating [of course]. We referred a consultant to the General Medical Council (GMC) back in May 2014 after being told by ‘a source’ she’d done a bunk. The nurses weren’t so clear cut.
So today I found out the names of the six referred nurses. Six. And no medics. The Sloven sloven industry as always delivering pure shite. Take over (land lucrative) provision from afar, leave it to sink into a hellhole of discontent, malaise and fear and, when the inevitable shitola happens, make sure no one within a fifty mile radius of the mothership catches any of the fall out. Particularly anyone approaching board or CEO level.
In her opening spiel, the investigator offered me the services of a liaison officer to ‘provide support during this process’. Bit late in the day for that really. It reminded me of the Health and Safety Executive leaving us a booklet about what to do after the unexpected death of a family member. About 18 months after LB died. Learning point 1,345,987 If you come into contact with families some while down the grief and bereavement road to nowhere, perhaps think about the standard bells you typically offer and frame them appropriately…
Next stop was the blog.
‘You, er, write a blog. Could you not write about this, it may disrupt the process…’
Mmm. There wouldn’t be a process if I didn’t write a blog. And despite the ludicrous shrieks of the Dr Crapshite brigade, I’ve not been a name shamer on these pages. (Well not below leadership level… the likes of KP, Petter, Jacko and Hudspeth who I reckon get paid to swallow the pill of possible publicity). I agreed to not mention the content of the interview.
Then we were off.
It was so blinking distressing to go over everything again. Even more distressing, if that’s possible, after experiencing LB’s inquest and hearing the (still not quite) full story of what happened. Layers and layers and layers of wrong that simply scream out. While crap all happens.
‘Can’t you use the context I provided to the GMC?’ I asked after the first question.
‘No, we need to have what happened in your words.’
‘They were my words‘, my brain screamed… like they were for the police. For the coroner… for Verita. Learning point 1,345,988 There is no justification for repeated telling when the telling has already been done in an official capacity unless people want to. Otherwise, agreement with the person/family that they are happy for a cut and paste version to be used from another official telling should do. There is always the option to add or delete bits at the next stage.. [Howl].
Such disconnect among the various arms of the (non) accountability dance. A fresh beating with a blunt instrument on each iteration (I now suspect with even more nails as the futility of the telling becomes more and more apparent). Perhaps 1,345,989 should be a brief note, early on, stating:
Now you’ve experienced the worst thing you could ever (not dare to) imagine, we’re going to spent the next few years or more (well as long as it takes) torturing you in a combination of bureaucratic, thoughtless, deliberate, ignorant and incompetent ways…
Yours,
The State
‘Do you want a break?’ asked the investigator several times during the interview.
My brain seemed to be hosting a particularly absurd but unavoidable horror show that made it difficult to speak. Sitting at work, I drilled the phone into my ear and sort of strangely gargled, cried, caterwauled and clawed my way through the following hour. I didn’t want a break. I just wanted it over.
[Final reflection: I had the odd moment while writing this post that I haven’t had before. Would I somehow jeopardise the NMC investigation. Not by disrupting the process but by simply pissing them off? I don’t know. But we’ll never know anything if things remain secret.]
Mid Feb. And no action about the Mazars review. Extraordinary. I watched a documentary last night from 1981. Silent Minority. By a filmmaker called Nigel Evans. (He died recently but there are several of his documentaries on youtube and I recommend dipping in. A remarkable archive.)
Earlier today someone asked me if I thought anything will happen with the Mazars review. A question I think we never thought would be asked, back in the summer of 2015, when early findings were shared with the review panel. The findings evidenced a barbaric disregard for the human rights of certain people that could only be a matter of national importance. The leaking of the Mazars review, and subsequent debate in the House of Commons on December 10, supported this.
And then tumbleweed. A cynically timed ‘offical’ publication date just before crimbo and crap all meaningful action by NHS England, Sloven, Monitor, CQC and Jeremy Hunt since has generated serious despair in the Justice shed.
This negativity was reinforced last week after listening to an update about the Learning Disability Mortality Review programme (LeDeR) based at Bristol University last week. A watered down version of a national mortality review board because the government (previous and current) thought premature deaths of learning disabled people weren’t worth proper funding. A piecemeal programme with little independent scrutiny and rigour (and unfunded public involvement).
Strangely, I started feel more positive today. Helped, in part, by various tweets, emails, facebook posts highlighting the obvious lack of fit between ‘official’ talk and people’s lives. And regular emails/messages relaying sometimes small changes and shifts. Unlike in 1981, social media allows a diverse range of different people to collectively come together, contribute, support and do stuff. #JusticeforLB is increasingly known about in a way we never imagined. In March a short play by Edana Minghella about LB will feature in Twelve Angry Women in Brighton. The Justice quilt will be on display at the Kings Fund next week. Plans are underway for a late evening choral event alongside the quilt in the Warwick University Arts Centre in the summer.
The Mazars review clearly highlighted eugenic practices embedded within the structure and processes of at least part of the NHS and social care. This ain’t going away. And the non action by those who should be acting is starkly visible. The atrocities highlighted by Nigel Evans (among others) which continue today in different versions remain beyond wrong. We have options he could only have dreamed of back in the day when the content of his documentary was challenged. That his work is freely available on YouTube underlines the potential for social media to render these happenings visible and ensure they remain so.

[Photos are from the recent extraordinary Sloven Board meeting. Thanks to Saskia Baron for the Nigel Evans link]
Postscript: Bizarrely, just a few hours after posting this, Rob Greig published this article in Community Care, saying similar.
Bit of a convoluted ramble tonight. Sorry, but hopefully it makes some sense.
James Titcombe found out this week that Morecambe Bay hospital paid £42,123 in legal representation and attendance of communication staff at his son, Joshua’s, inquest. Early this year, My Life My Choice (and Michael Buchanan) found out that Sloven spent £318,121.20 on legal representation at LB’s inquest. It’s not clear if this figure includes preparation for the four pre-inquest review hearings. It doesn’t include the costs of Sloven staff attending the inquest. [It became a daily activity to spot Sloven (and Oxfordshire County Council, NHS England and Oxford Clinical Commissioning Group) bods loitering around the public gallery. Lacking the lanyards typically worn, they were identified by furtive awkwardness.]
This cost could only have been spent in an attempt to limit damage to Sloven’s reputation. What happened to LB is undisputed. Sloven said back in February 2014 they accepted the findings of the first Verita report which found that his death was preventable. Why would they need (external) legal representation at an inquest which is supposed to establish what happened rather than attribute blame?
How did we move from this (clearly fake) position in Feb 2014 to a space in which eight barristers (and accompanying solicitors) jostled for table space at the front of the courtroom? Sloven were culling staff (or ex-staff) from their legal umbrella pretty much up to the start of the inquest. But bizarrely included in the dosh spent is £90,000 on legal fees for staff they didn’t represent. Eh?
Total absurdity.
Sloven’s response was clearly to chuck unlimited dosh at trying to grab a genie that had well and truly left the bottle. A social media related genie. Mike Petter, board chair and member of the Sloven leadership trinity, told My Life My Choice:
Jaw dropping duplicity. Like most (all?) Foundation Trusts Sloven have an in house legal team. Unlike families who are catapulted into a space of abject horror and distress, usually with little or no legal knowledge or support. Petter doesn’t explain why Sloven brought in an external solicitor and barrister. Or why they contributed to the costs of staff members they didn’t represent. (Or why they didn’t make this clear at the beginning of the inquest when we were led to believe that there were six other independently represented Interested Persons…)
I bumped into a lovely neighbour earlier. She’s been a teaching assistant for over 30 years at the junior school Rosie and Tom went to and follows the campaign.
“All those hundreds of people”, she said. “And they didn’t know…”
I think ‘they’ did know. How could they not know? They knew but didn’t think it was important that (certain) people were dying prematurely. I’m reading Neurotribes at the mo. The go to book about autism by Steve Silberman. Earlier today I read this;
Life unworthy of life... Nearly a 100 years ago Hoche and Binding produced a simple and effective framework for understanding contemporary provision of health and social care for learning disabled people in the UK.
Wow.
Just got to make sense of how a public body could squander over £300,000 on LB’s inquest now…
Rich sent me a link to this story this afternoon. The Star Wars production company, Foodles, is being prosecuted on four criminal charges by the HSE for an incident in which Harrison Ford broke his leg. A year after LB died. He died.
[Howl].
Struggled a bit with the thought/context/rational for meeting Jeremy Hunt today, especially after reading Imogen Tyler’s powerful JusticeforLB post this week. The administrative grotesque. Highlighting how rituals like meetings and emails may expose the ridicule of people in power but perversely strengthen the legitimacy of the power holder. Shudder.
Disquiet in the Justice shed.
To meet or not to meet? How many meetings have we attended? What has actually happened? Other than ticking the ‘met the bereaved family/campaigners’ box. Reinforcing the the power of the meeting host while sucking the life out of #JusticeforLB?
Why have none of these NHS/social care meetings happened in spaces convenient to us? Or other families in similar situations? The administrative grotesque could be subverted by the powerful travelling to meet those who experience state atrocities. The brief meeting with the Leader of Oxfordshire County Council. And the impossibly briefer meeting with Monitor would have been a different experience without the six hour journey/cost involved. But nah. Meetings are firmly on the terms of those who wield the power. You make the time and stump up the emotional and financial cost to attend these or you don’t/can’t.
Expectations today were set firmly at low to ground level with that blooming hope light, the light that (remarkably and probably stupidly) hasn’t been fully extinguished, still flickering. He won’t… but he could.. but he won’t… but he could… flutterings of naivety.
Deb Coles, Rich and I met for a pre-pre meeting at the National Gallery café and thrashed out what we hoped to get from the meeting. We met Andrew Smith, our MP, in Portcullis House for a pre-meeting. Formulating more of a plan. And then set off, through the backside of Portcullis House to the Department of Health (or Death if you’re learning disabled).
At this point, spirits were reasonably high. We had a bit of banter from a Dept of Health employee who cheerfully snapped us outside the building. A before pic.
I’ll unorder the story at this point and leap ahead to the debrief after the meeting. Deb and Andrew (who were both superbly supportive and good company throughout the afternoon) offered the following reflections and cheeriness.
The meeting started 15 minutes late with the announcement it would need to finish in 30 minutes because of a voting commitment. Two pre-meetings worth of stuff to cover immediately compromised. Eek. Just how administratively grotesque would this be?
We started. Vaguely focusing on the five points Andrew outlined at the beginning. Pretty soon I felt despair at the futility of the discussion. Sitting in a comfy cream armchair in an office that is the stuff of dreams, with a couple of people doing something silently behind us, Jeremy Hunt listening carefully. When Rich summarised our experience of Sloven shite across 2.5 years I wondered how these words could possibly be spoken without some immediate action; criminal, regulatory, resignatory or otherwise. The brutality of the experience remains extraordinary in the lived experience of it but also the non response to it.
A few hours later, sitting on a train to Cardiff with a lukewarm plastic glass of wine, I’m beginning to make better sense of it. Here’s my half formed thoughts:
JH was firmly in a space of making some innovative and committed changes/approaches to improving patient safety and changing NHS culture around safety. A bit too heavily focused (uncritically) on learning from the aviation industry for my liking but clearly passionate about improvement. The trouble was he subsumed the issues thrown up by the Mazars review into these more generic changes to NHS culture.
We were arguing that the lives and deaths of learning disabled people (and people within mental health settings) in the NHS demanded increased scrutiny particularly given the Mazars findings. If a group of people are consistently dying prematurely some sort of national mortality review board/ independent investigation mechanism is essential (unless we all agree that shit just happens… to, erm, particular people).
The meeting was brief and pretty forthright. The action points JH decided on involved some revisiting to check originally actioned points arising from the Mazars review were as robust as they could be, looking closer at the actions of the Sloven senior team and making sure the CQC inspection regime takes a more holistic view of people’s lives and aspirations.
Was it a good meeting? No comment.
During a departmental meeting today, a colleague gave a talk about a project he is involved with; Human Resources for Healthcare in Africa. Part of this work is focusing on how to reduce the shocking mortality rates of children under 5 in Mali and Uganda.
He talked about the drop in mortality rates that emerged as an outcome of the setting up of the Confidential Enquiry into Maternal Deaths in the UK in 1952. Setting up an enquiry into deaths in Mali and Uganda seems to have, similarly, led to a drop in mortality rates. One reason being that once healthcare professionals knew that these deaths would be investigated, they started paying more attention to the care they provided.
Leaping to this talk from mundane discussion around office moves and desk space left my head spinning.
…once healthcare professionals knew that these deaths would be investigated, they started paying more attention to the care they provided.
As simple as.
Meanwhile, in the UK, talk of setting up national board to look at the premature deaths of learning disabled people after the shocking mortality rates identified by CIPOLD was watered down into a mortality review programme. Seemingly serving a ‘pointing to’ function. ‘Look… Bristol University are doing this.’
…once healthcare professionals knew that these deaths would be investigated, they started paying more attention to the care they provided….
And once health and social care professionals/organisations witnessed the abject lack of any substantive action by the government response to the Mazars findings they all got a symbolic ‘get out of jail free’ card.
No reason to pay any more attention to the care provided.
Business/death as usual.