Nothing really to report.
Well other than candour, transparency, decency and humanity are well and truly missing from NHS England.
[Thanks to George Julian for the speech bubble text.]
A review of the review of the review…
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Category Archives: Death
Report finalisation and the National Death Service
While writing about Devon days, life, loss and inhumanity yesterday evening, I received this email from NHS England:
Report finalisation:
Following a series of comments regarding the accuracy of methods of reporting to national NHS incident reporting systems, as set out in the Mazars report, Mazars have made some further amendments to their report.Publication:We have been working towards a date of publication w/c 7th December. However, this is now not possible. There is a meeting being scheduled for the 11th December, with Mazars and NHS England national team to agree publication date and process.This will include the planning for support for families, who may seek information post publication.ERG will be sent final report ahead of publication, together with the communication handling plan.Kind regards
ERG stands for Expert Reference Group.
WTAF stands for What the Actual Fuck?
Er, why has the publication date, process and planning support for families not been organised before now? How can further delay possibly be necessary? The report content was known in the summer. The full version circulated at the beginning of September. Why is a meeting with Mazars necessary to arrange publication date? They were commissioned to write a report. They’ve written it. It’s up to NHS England to decide on a publication date.
NHS England who fell over themselves to publish the (crap) Verita 2 report they also commissioned six weeks ago now. With no scrutiny. They have pored over the Mazars review with microscopic intensity. Prevaricating, posturing, ignoring the significance of what this report represents and the right of the public to know. To know that our national health service has acted as a national death service for a group of people. In full view.
Scandalous, harrowing. Unforgivable. Sloven may have rushed to buff up their dire practice with a shedful of new processes but the delay in publication allows similar practice in other Trusts to go unchecked. For the deaths to continue. Extraordinary.
The problem is, I think, that these lives (and deaths) are not considered worthy enough for the magnitude of the scandal the Mazars review reveals. Does that make sense? Learning disabled people can’t be allowed to disrupt the complacency of NHS England, Sloven or the CQC. It’s almost an embarrassment. Particularly after the Winterbourne View faux activity. And talk of transforming care. All that handwringing, those national programmes, endless meetings, croissants, and fuck knows how much time, money and the like. While an NHS Trust quietly went about its business burying all the bodies.
I wrote yesterday about not knowing how I would ever get out of bed on Sunday after remembering what life used to be like. Today I’m supposed to go to a meeting in London. But I can’t get out of bed.
I feel ill.
The deaths that don’t really count…
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(*long lost) Lawrence and looking for Dappy
I wrote about LB’s 18th birthday here. A day trip to London and a wish that Tulisa was his sister. Other birthday outings are dotted around this blog. Most involve London. Giving evidence (howl) during the inquest I talked about how we drove round Camden in June 2013 looking for Dappy. We didn’t find him.
Out of the hundreds of pages of damning/harrowing reports, records and staff interviews I read in the two years before the inquest, the odd thing made me smile. One was this family tree produced when LB was in the unit. I think a psychologist did it with him. LB, love him, disrupted the framework by telling her his family included Lawrence, Anne, Dappy and Tulisa. Anne was a mystery until a quick google tonight revealed Tulisa’s mum is called Ann. (Long lost) Lawrence remains a mystery.
It’s LB’s 21st birthday on November 17th. [Howl]. I don’t know what we’ll do. I sort of hope the Mazars death review is published that day. A review, generated by LB’s death, that will (surely) change the landscape of learning disability provision in the UK. A review that will mark a point in which chat about change is no longer acceptable.
The review examines deaths in Sloven’s learning disability and mental health ‘care’ between 2011-2015. The post Winterbourne View period. A period in which there has been so much talk about learning disability provision and no action. Huge amounts of dosh given to endeavours like the Winterbourne Joint Improvement Programme (since disappeared), Bubb’s breakfasts and the like. All the while actual people were being disappeared. In full view down Hampshire and Oxfordshire way*.
The publication date for the Mazars review seems to be ‘at some as yet undisclosed time in the future when a set of currently missing hoops have been found and gone through with a set of as yet unidentified really important people who may have run out of the necessary ink in their fountain pens to sign off publication. Ink which can only be produced from a rare vegetable that only grows once a year on a remote island off the island of Java.’
Not surprising really. The review implicates all the key players. Sloven, commissioners, NHS England, Monitor, the CQC and the Department of Health. The commissioning of a review into the methodology used in this (independent) review raises so many questions about what ‘independence’ in this context means my brain just freezes. The story seems to be that Sloven challenges to the methodology must be sorted pre-publication so as not to muddy the water. Eh? The findings are so controversial we need to dot the i’s and cross the t’s big time? Producing a level of robust engagement not necessarily present in other independent reviews? Mmm.. that’s pretty awkward.
I’m kind of lost here for so many reasons. Not least the Verita 2 report that has findings and then a brief conclusion so off beam I was left wondering what magic dust had been sprinkled over these proceedings to allow such speedy publication (after a lamentably long and delayed production process). If the current examination of the Mazars methodology finds nothing untoward, will some other review into their processes be commissioned? Like did the investigatory team have the recommended five a day during the process? Or were any of the half arsed records they examined not treated with the necessary respect a piece of paper deserves?
We seem to be in a space of absurdity. Generated by a review that found the unthinkable.
*And elsewhere quite possibly…
The skip, old rubbish and other stuff
On leave this week and we hired a skip to get rid of old rubbish, broken stuff and other stuff. A major, well overdue, sort out. LB’s camera turned up this afternoon. The battery still working. I downloaded the photos. Buses, heavy haulage and the odd photo of him.
Not sure what else to say really.
Dead times and fuzzy felt versions
LB’s inquest is scheduled to take place from October 5th for up to two weeks. This date will be confirmed at the next (4th) pre-inquest meeting (Sept 9th) and seems to depend partly on whether the police decide to pass evidence to the Crown Prosecution Service for a possible prosecution or close ‘the case’. And whether additional ‘interested parties’ need more time to consider ‘evidence’. [Some staff members are now ‘interested parties’ and may have their own legal representation.]
Attending an inquest isn’t a common experience for a lot of people. The thought of what lies ahead reminds me a bit of the days leading up to LB’s funeral. His do. An inevitable, unavoidable ‘thing’ drenched in horror. Unimaginable horror.
But funerals are typically organised within days or a few weeks. The unspeakable is, necessarily, whipped through really. Mates stepped up and worked magic, generating celebration. A red double decker bus, Charlie’s Angels were pall bearers, “Here Comes the Sun” strumming out from a baking hot woodland corner, hundreds of used bus tickets scattered over LB’s Routemaster coffin. A party. (Almost) fun, food and footy.
When the NHS (or other public bodies) are involved in unexpected deaths, delay is introduced. For no apparent reason. Weeks, months, years added to routine processes. Dead times. Torturing devastated families while generating distance from memory. Effectively producing fuzzy felt versions of ‘what happened’. Pieces moved about, dropped, lost and ultimately discounted. The delay also allows an ‘it was ages ago now..‘ tired feel to the process [howl] and facilitates a ‘things have moved on now.. We’ve learned so many lessons and implemented more changes you can shake a worn out old stick at…’ type outcome. Effective wrapping up and diffusing atrocity/obscenity in faux (shiny) processes and made up ‘learning’.
This strategy is losing its punch a bit now because of social media. Patients/family members and others can record stuff as it happens, return to emails and publicly available accounts, producing ‘evidence’ to challenge or refute. People can hook up with other people who have similar experiences or are simply outraged by what they see or read. Mobilising support, strength and resources. Relevant historical and contemporary context is accessible online or via FOI requests. It’s now easier to convincingly say ‘Eh? Whaddaya mean? This happened before. And continues to happen...’
This is good (though we still ain’t got anywhere in our fight for justice). Why patients, families and others should be doing this work though remains utterly baffling.
Of moths, pride and Paloma Faith
We’ve got a moth infestation. To the extent that I now wander round obsessively fixated on looking for tiny thin dark/black marks on walls, especially near door frames or down the sides of furniture. And then crush em. We’re going to have to repaint pretty much everywhere. Or extend moth cull to a level in which it resembles some new decorating technique; “papery flakery. In dull grey to blackish.”
Rosie was my fellow moth destroyer. We had some hilarious days a few weeks ago. Systematically searching them out with a spongy baseball bat. But Rosie’s left home now. Gone to moth free pastures [I hope]. I wonder if LB might have taken up the cause. I don’t know. He was a dedicated and committed litter hound and did a cracking number (with constant encouragement/involvement) on weeds in the front garden. I’m not sure if fleeting, flitsy/flaky insects would have rocked his boat.
Rich and I went to London today. Leaving the moths free to do what they do in a day. [Bastards]. We watched a good chunk of London Pride. Loving the brilliance, joy and creativity. A bit bored/frustrated by the (often lengthy) patches of corporate overkill. London buses featured consistently which was ace, though we were staggered by the ‘wheel stewards’. Every bus/vehicle in the parade/procession had dedicated wheel stewards. For each wheel. On a route fenced off from the public and organised to the hilt. 
Wheel stewards? LB was in a specialist NHS unit with a ratio of four staff to five patients (plus the wider learning disability specialist team) 24 hours a day. At a cost of £3,500 per week. And he died?
With no accountability, still.
Wow.
How the fuck does that work?
In more positive news, the #JusticeforLB flag has been flying at Glastonbury. Paloma Faith’s set tonight. Action not bullshit. As always.
Death, decision aids and tears by the Spree
I’ve been in Berlin at a workshop about evidence based medicine, narratives and decision aids for the last couple of days. This involved discussions around what ‘scientific’ (cough cough) evidence tells us, the stories people tell about their experiences and resources (decision aids) produced to help guide people through various treatment options. (Decision aids are largely for when options are evenly balanced in terms of pros and cons and are designed to help people make decisions based on what’s important to them). There’s a bit of an issue around using stories in decision aids because people’s experiences are more persuasive than numbers and we don’t know why or how they ‘work’. Interestingly 84% of decision aids include stories which makes some in the decision aid world a bit uneasy.
A newish (well nearly two years now) work hazard involves how to deal with questions about children from newly acquainted colleagues. This is tricky for all sorts of reasons. Do I tell or don’t I? Do I discount LB for the sake of an even interaction [NOOOOO] or tell which is, in any circumstances, a bit of an interactional bomb.
I’d already learned that if you avoid mention of death straight away in the kid conversations you can open yourself up to further questions that almost inevitably lead to having to say, retrospectively, ‘Er, well actually LB died’, and that’s just off the scale of awkward.
The context of LB’s death makes this all the more complex. A set of ingredients, no chef and no recipe. And different utensils, weighing scales and oven. Each time. A consistent and continual recipe for (interactional) disaster.
I came a bit of a cropper with this question on a trip to the States last year when, after 18 hours of (delayed) travelling and a substantial time difference, it cropped up unexpectedly in a wonderfully atmospheric Madison beer house. I couldn’t think what to say, became (literally) tongue tied and crumbled.
This week, it was a beautiful spring evening. The small group of us were walking along the bank of the river Spree in twos and threes. The person I was walking with had been a doula so it was almost inevitable that the question would crop up. It was cool. We chatted about LB and other stuff. When I was asked again later by a someone else, I said ‘Four now, used to be five’. There was a moments pause and then we carried on with other talk.
I was pretty chuffed about this and chittered away on twitter with various people later. The following evening the workshop had finished and three of us were left in the restaurant. Both women had young children and conversation turned to kids and safety. Letting them walk home alone and general protective ‘mum’ stuff. I don’t know how to describe the physical sensations I experienced, sitting in a public place, with images of shadowing LB every moment he was outside pinging around my head. Careful and carefree memories. Baby steps on slides and hilarious escalator moments. No hint of the darkness to come. It was like every piece of my body wanted to run in a different direction as my brain slowly disintegrated.
We left the restaurant and headed back to the hotel. One woman put her arm through mine, gave me a squeeze and said that seemed to have been a bit close to home. Tears by the Spree. We went to the hotel bar, drank beer, talked about LB, cried a bit more and had a bloody good laugh.
There is no answer to what to do. Maybe there should be an interactional decision aid for bereaved families (joking). But I was struck by Nick’s comment on whether it gets easier over time.
I think he might be right.
[And because I think stories are essential in helping people to make sense of things, I’ll shamelessly plug Healthtalk.org which has collections about families experiences of traumatic death and suicide.]
Another week that was
What a week. Starting with a speedy East Coast train trip to Scotland and back for work. Interviewing learning disabled mothers about their birth experiences. Spectacular scenery, cheeky photos and enforced work space on the journey.
Got a Stinky Pete response from Sloven Board Chair on Thursday and pre-recorded an interview with Radio 4s You and Yours about Norman Lamb’s No voice unheard, no right ignored Green Paper that afternoon. A bit of an odd situ, sitting alone in a room at BBC Oxford with a set of headphones, bootleg copy of the Green Paper and microphone, waiting to speak to Shari Vahl about LB and the campaign.
Made me feel pretty sad really but it wasn’t as awful as the first time I did it. Back in the day.
The Green Paper was published yesterday with a good set of responses, commentary and media coverage [eg. Community Care, Oxford Mail, BBC and Rights in Reality]. We produced a campaign response in typical Justice Shed type fashion: part tongue in cheek, part cutting (we hope), passion drenched and last minute/skin of the teeth type jobby. Norm, love him, was heartwarming in his recognition of the trouble and toil we’ve* been undertaking. And a complete sob (in a good way) moment for Connor.
[Update: good summary piece in the Guardian too].
I was working at home. My mum had volunteered to transform the out of control mass of stuff/paperwork in the Justice Shed into order.
This effort was partly to find a missing (seemingly crucial) record in getting #justiceforLB. One of those documents you can’t help thinking really? This is necessary? What is being denied rather than asked here? I worked my way through my usual cone of shame work tasks while my mum cussed about the lack of dates on various letters/documents, efficiently magicking a mountain into three, well ordered, neat boxes. Three? Wow.
The missing record was nowhere to be found. I called the GP surgery to ask if they could provide a replacement copy. Sigh. Not a good call to make. Er, record, yes. Relating to our dead son…
“Yes. His name is/was/[howl]. It may be under my name… Thank you.”
I walked to the surgery and picked up the record. Another line in Sloven’s bizarre ‘We completely accept LB’s death was preventable but, at the same time, our legal team will continue to do everything in their power to overturn some stone to get us out of the shit’ approach closed.
Then today. The first day of filming for the LB movie produced by My Life My Choice with Oxford Digital Media, funded by Oxford City Council. Filmed in the Jam Factory. As it probably should be.
*For any new readers to this blog, I just want to clarify that #justiceforLB and the #LBBill are collective endeavours. Crowdsourced contributions from all sorts of people (an explosion of diversity, colour, brilliance, cheekiness, humour, passion, commitment, rule breaking, sense, and love).
The footy guy nights
Most evenings, sitting in the front room, I end up looking at the floor. And think about LB. And spaces. Wow. He did a number on spaces. Occupying different spaces within our space. Like sleeping on the Billy bookcase as a tot. Or hanging out in the swing bin. Now that sort of space isn’t occupied it’s odd/hard to remember it ever was. Who lies on their side on the living room floor? Across years…
Back in the day, the footy guy nights were a pretty unremarked upon part of family life. Like so much other stuff. Absorbed into our ‘normal’.
I look at the floor and wonder how he fitted. With Chunky Stan, and the Playmobile audience. It’s a tiny space really.
There was no guessing when the box of ‘footy guys’, goal and makeshift ball would appear. In a seamless and low key celebratory joining in of a mainstream footy event. In his own way. How the hell did he fit in that tiny space?
He sort of studiously ignored the match on TV. Applying sometimes silent, focused concentration on his match. Remarkable really as footy fell outside his typical interests. At the same time, he was fully engaged in the moment. Some of the real time match entered his commentary but his match had its own dynamic. And own moments. LB was no slave to premier antics. 
I loved these footy guy nights. I loved his absorption in the match, played out with a ball made of scrunched up paper and Sellotape (made after the original tiny ball went missing). I also loved (without realising it at the time), how everyone fitted around him. Picking across the guys to sit down. Respecting his engagement.
LB kept his footy guys in a Spongebob box. The goal and ball were stored in an old CCTV camera box. Which doubled as the second goal. Everything carefully packed and stored in his room until the next time.
I photographed this one evening. I don’t know why. Or why that night. January 29 2011. He was 16. Capturing a school boy. Absorbed in doing something he loved.
As he should be.
mydaftlife 