Goggle box and the Mazzwot review

imageA student, Andrew, came round on Saturday. From Yorkshire. He’s doing a pre-university diploma in media and is making a short film about what happened to LB for his coursework and to raise awareness among the students at his college. He was sensitive, quiet, thoughtful and careful in setting up his equipment. In conducting the interview. It couldn’t have been an easy task.

Yesterday Liz (who brilliantly maintains a spreadsheet logging all mention of LB and #JusticeforLB, together with easy read/more accessible versions) noticed that the (approved) CQC November board minutes reported that LB died through misadventure. The CQC Trustee she raised this with immediately apologised and said he would make sure the minutes were corrected. (The full jury findings can be read here… [Howl]).

Sloven, as regular blog followers will know, recorded LB’s death as natural causes in their board minutes a few weeks after his death. Minutes that have never been corrected.

Maybe some people reading this will be thinking

Bloody hells bells. Give it a rest, you lot. Banging on about tiny details. Christ. We’ve enough on our plates, trying to do our jobs with less and less dosh. More and more figures to produce, boxes to tick, vanguard type activity to bufferoo. Jeez…

But this stuff is important. It’s deeply important to us how LB’s death is reported/recorded officially. To state he died naturally, or through risks he took voluntarily, is wrong. But it’s of importance, or should be, to all of us. The minuting and approval of inaccuracies by public bodies raises various overlapping questions/concerns.

Most obviously, how? How can such inaccuracies be noted, written, approved and published? Is the detail so inconsequential? Is the process of interminable meetings and equally interminable minutes a hollow, meaningless process? How many people – in the official chain of leading, acting, communicating and doing – are simply slumbering on the job?

Why are the minutes inaccurate? Are they typically riddled with inaccuracies or are these inaccuracies related to particular assumptions/prejudices? The old learning disability goggles filtering out anything to do with certain people as irrelevant. Un-noteworthy. The Mazars review found hundreds of deaths similarly discounted, ignored, brushed aside.

The response to the Mazars review – eh? The what? M? Mazzwot? – further illustrates and underlines this inertia, this disinterest. The lack of care, concern and disregard. Why bother to keep accurate minutes when an independent review of your practices revealing deep rooted failures at board level is brushed aside? There are no consequences.

And what does all this say about the regulatory processes/bods that flit, fancy and dance around NHS Trusts? Clearly knowing they’ve sort of got power that they ain’t ever going to use? A grotesque kind of playground hopscotch where everyone is simultaneously covering their eyes, pocketing the best stones, rubbing the chalk lines away and guffawing over what a great playtime it was in the kids toilets and staff room. Going home to reconstruct the, at best, deep slumber or unsavoury practices they generate, indulge or witness to their loved ones and friends.

Slumbering continues possibly because most people aren’t rendered invisible. And couldn’t imagine being imprisoned in a room, fed through a perspex hatch for nine years, at a cost of £12,600 a week, without the weight of the state sweeping in with the justice batten. They couldn’t imagine having one of their kids drown in a hospital bath. Or locked up for 10 years for no crime other than a lack of appropriate support in the community. But the continued silence around these atrocities is… what? I’m almost out of words.

 

 

The mothership, blunt instruments and telling again

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 screamedlike 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.

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[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.]

Questions from the public

A short post. I read this extract from the latest Sloven board minute papers last night and had one of those moments when I couldn’t see the screen for tears. James should not have died. Mike Holder wrote to Katrina Percy in 2012 detailing the safety concerns he had. These concerns were ignored. The CEO and board didn’t care.

Mrs Younghusband should not have to go to a NHS Trust board meeting to say the unspeakable.

There is a clear and incontrovertible link here between corporate decision making and James’ death. And the slimy Sloven bastards tried to stop Mrs Y from taking civil action by limiting the time she has to act.

The lack of action by those who should be acting (Monitor, Department of Health, NHS England, CQC, yawn-di ya-di da) makes me wonder when most of the principles guiding the NHS were ditched? Southern Health NHS Foundation Trust is no part of a National Health Service I recognise or believe(d) in.

Board meeting

This ain’t going away

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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).

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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.

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[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.

Useless eaters, human ballast and empty husks…

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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:

petter shite

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;

image (21)

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…

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What the foodles?

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].

Meeting Jeremy Hunt

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.

hunt

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.

  • It’s brilliant to get a meeting with the Secretary of State.
  • He clearly listened carefully and was affected by what was said.
  • He took away from the meeting three action points which are steps in the right direction.
  • Change takes time.
  • He was genuinely sorry about what had happened and the treatment we’ve experienced since LB’s death

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.

Non action and a ‘Licence to kill’

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.

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Hey, how about we just stop with the pretence?

We’re a reasonable bunch in the Justice shed. [Yes, really]. And we pride ourselves on remaining reflective about and engaged with the constant shite we’ve experienced over the past 2.5 years. We’ve absorbed the slurs, the smears, the deceit, the obstructions, the bullying and the wilful refusal by anyone involved to take responsibility for (or even care about) LB’s death and the hundreds of other deaths that happened under Sloven’s watch.

The extent of Sloven failings get worse on a weekly basis. We’ve now seen first hand the utter incompetence of the CEO and Board. A spectacle that continues to make me feel queasy when I think about it. We know that NHS England, the CQC, Monitor, the Department of Health, Oxfordshire County Council and Clinical Commissioning Group lack the guts (individually and as organisations) or interest to do anything substantive. There is no Monitor Improvement Director. We know Mencrap is about as far removed being the ‘voice of learning disability’ as is humanly possible.

We can remember the numerous organisations that rushed to sign up to the… er… [scratches head] Winterbourne Con… Winterbourne Con? Con something. And can only guess at the money the Dept of Health flushed away on this ill thought out and useless endeavour. Followed by other incarnations. And croissants. A resounding fail. Leaving countless people suffering. And dying.

The ‘official’ response to publication of the Mazars review revealed everything we need to know. Certain people simply don’t count. Deaths schmeaths. Transforming care plans in tatters and more news emerging this week of re-institutionalisation by the back door.

So. To stop all this tedious and repetitive talk, wasted resources, increasing breakfast waistlines and empty dialogue with grassroot movements, here’s the first draft of an agreement for Trusts, CCGs, local authorities and the various regulatory organisations, Dept of Health to sign. [Lifted from a cleaning contract template..]

 

This agreement is made between _________________, [NHS Trust, CCG, local authority, Monitor, CQC, NHS England, Department of health… (hereafter known collectively as the Public Sector) and __________ (hereafter known as the public).

The Public Sector agrees to the following:

1. An acceptance that learning disabled people will die early and their deaths do not warrant investigation unless the circumstances are extraordinary. [There are currently no examples of extraordinary. Please contact the Public Sector for updates on Never Ever Ever Events.]

2. An acceptance that learning disabled people shall continue to be ‘placed’ in ‘living arrangements’ typically at the whim of local authorities/commissioning groups.

3.  An acceptance and agreement that these living arrangements should be dictated by budget and efficiency. [The bigger the better the guiding principle here.]

4.The Public Sector shall herewith stop pretending to support and ‘care’ about learning disabled adults.

5. Services to be performed by the Public Sector are to be lowest quality at lowest cost possible. These will typically not include any of the following: going out, encouraging community participation, fun, ambition, delight, encouraging and supporting employment, relationships or a proper home, engagement with families, effective healthcare or investigation in the instance of premature death.

The Public agrees to the following:

6. Sucking up their unrealistic expectations and stop banging on about inadequate, unsafe and poorly funded non care.

7. Either party may terminate this agreement with written notice to the other party.

In witness to their agreement to these terms, the Public Sector and Public affix their signatures below:

_____________________________________

Public Sector signature, date

_________________________________

Public Signature, date

 

Any additions or amendments to the above welcome. Would be good to get this sorted in time for our meeting with Jeremy Hunt on 3 Feb. He could be the first signatory.

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Right now

I weep.

I don’t understand how LB is dead. [Dead??]

I fucking despair at the non(sensical) action by Department of Health, Monitor, NHS England, CQC, OCC and the various CCGs.

Before and after LB died.

Before and after publication of the Mazars review.

I despise Sloven’s consistently shite practices, fakery and arrogance.

The pointlessness of Mencap.

I don’t understand how LB is dead. He drowned. In specialist NHS provision. No accountability. Nothing.

I just don’t get it.