I don’t know. I don’t know if it was Chunky Stan’s death this week which was so blinking sad but immensely peaceful. Or the start of a new year. But the Justice shed is cranking up the volume. Enough is enough.
First. A letter to the Southern Health NHS Foundation Trust Council of Governors:
No rest for the (lay) self congratulatory. Clearly. A few days after posting about #JusticeforLB related achievements, the Guardian removed their front page story about non-investigated NHS related deaths. Because of complaints (plural). Any naivety we entertained around other NHS Trusts learning from Southern (Sloven) Health NHS Foundation Trusts heavy handed and inappropriate approach to the Mazars review, disappeared. [I know..]
We’ve heard, on the grapevine, that a few Trusts are taking the Mazars/Guardian story findings seriously. And proactively exploring their own practices in relation to deaths of learning disabled patients. This is bloody brilliant.
The challenge to the Guardian story is deeply depressing though. Headline figures of the number of deaths investigated compared to number of (allegedly) unexpected deaths (from the now removed Guardian story) remain harrowing:
Somerset Partnership NHSFT 0/146
Northamptonshire NHSFT 0/63
Rotherham, Doncaster and South Humber NHSFT 0/28
Leicestershire Partnership NHSFT 1/116
Dorset Healthcare University NHSFT 2/97
Derbyshire Healthcare NHSFT 1/23
Sheffield Health and Social Care NHSFT 1/23
Leicestershire Partnership NHSFT 1/13
Penine Care NHSFT 1/10
These figures are from a Freedom of Information (FOI) request by the Guardian that asks different questions to the Mazars review. The latter found that Sloven investigated less than 1% of the total deaths of learning disabled people under their care. Less than 1%... We don’t know the exact questions the Guardian asked but whatever questions, it’s blooming clear there’s an almighty stench here. With a range of whiffs.
Some published challenges to the Guardian piece;
Somerset: these deaths were expected not unexpected.
Northamptonshire: these deaths were expected not unexpected.
Penine: the figures provided related to community and not inpatient provision.
Wow. What (particularly) stinks here is that the Mazars review, subject as it was to unprecedented (and, at times, offensive) levels of scrutiny, contains the answers to pretty much any challenge offered by Somerset, Northants and the like to their death practices. It clearly states that Initial Management Assessment (or whatever these tick box exercises, completed within a day or so of death, are called across different trusts) are not ‘an investigation’.
There is a circularity here of course. The filling in of this initial paperwork flags up that there is some level of unexpectedness, that ‘an incident’ has occured. That this is the only step taken is further evidence of the scandal gradually being uncovered.
The Mazars review underlines how there is no clear definition around what constitutes an ‘unexpected death’. A chilling position for learning disabled people who, all too often, are perceived to be of ‘inferior stock’ by health and social care professionals. Mazars used the Sloven policy which states that unexpected deaths are those that occur without anticipation or prediction, or where there is ‘a similarly unexpected collapse leading to or precipitating the event that lead to the death’. Sloven, as always, exemplary in the production of policies here (while their practice kicks back to the very edges of care, interest or humanity).
The problem is, if your death is perceived to be expected whenever (or wherever) it happens (including if you’d just got into a bath, in an NHS unit, with four ‘specialist’ staff members and five patients, in anticipation of a trip to a much loved bus company, aged just 18) then you ain’t got much of a chance. [And really, Somerset and Northants.. can you seriously argue that not one of those 209 deaths were unexpected? Not one…?]
What both the Mazars review and Guardian story (and the earlier Confidential Inquiry published in 2013 …) demonstrate (in addition to the arrogant, short sighted and bullying actions of some Trusts) is:
The lives of certain people, like LB, simply don’t count. The extraordinary resistance to the publication of the Mazars review and post publication challenge to the Guardian story underlines both the existence of scandalous practices in the NHS and, as importantly, a refusal by those entrusted with the wellbeing of patients, to recognise what they are actually doing.
Here’s to 2016 being the year in which these practices are rootled out and stamped on. Surely.
For the last few months, people have been sending in gingerbread figures. We wanted to find some way of representing the learning disabled people who died in Sloven’s non care [howl], uncovered by the Mazars review, visually. George hit on the gingerbread idea and we were off. Envelopes started stacking up in the My Life My Choice office.
Over the past few weeks, while we’ve been waiting (and waiting) for publication of the report, gingerbread fairies have been working behind the scenes mounting these (337*) colourful, vibrant and quirky figures on large boards. A lot of velcro and eventually a staple gun.
We heard this week that a meeting was being held at Jubilee House today with attendees from Sloven [who were subsequently uninvited], Oxfordshire County Council and NHS England (NHSE), among others. Sounded just the place for a pop up display of the Justice gingerbreads. We would invite the meeting attendees to come out and view them.
Local press pitched up. Along with a security guard who tried to get shot of us. Private space and all. We stayed. He hovered taking phone shots of us. An NHSE comms woman appeared, shrugging her shoulders nervously and went between the meeting and the display, several times. The My Life My Choice minibus appeared with a gang of champs, solidly supportive as always.
It was a striking display of brilliance really. But weirdly, pretty much every employee who left Jubilee House during that hour, walked the long way round to avoid it. The couple of people who took the path we were lined up along studiously stared at the floor. Fran, love her, started to invite people to view the display ‘They won’t jump out at you..’, she said to a couple of retreating backs.
Eventually, a few meeting attendees started to appear. Jan Fowler, from NHSE, and a commissioner came first, chatted with various people and with BBC Oxford. Then a few more attendees came and viewed the figures, took some photos and chatted. It was an odd experience really. Such intensity. Of horror and inhumanity, of colour and individuality, and of (some) avoidance. The meeting chair said ‘I will remember this’ as he left.
As we were about to leave, and the gingers were safely packed in the car, one employee who’d avoided looking on his way out, came back and asked what it was all about.
Just lives, really. And chilling inhumanity.
*There were so many more deaths than this, but here we focus on these.
Blimey. A right old trudge across pain filled terrain. Dotted with regular state sanctioned batterings. For over two years. Patches, drops and buckets of brilliance along the way in the shape of #JusticeforLB. Thank goodness.
And then yesterday. The Mazars death review leaked to the BBC. Less than 24 hours later a 35 minute debate in the House of Commons. Heidi Alexander, Shadow Health Minister, putting an Urgent Question to Jeremy Hunt. Love her. He ducked some answers and answered some unasked questions. The review methodology was sorted.
Sloven trended on twitter. Katrina Percy and senior colleagues went into hiding. NHS England left an out of office ‘publication by Christmas’ message. More than a 1000 families left hanging.
We’ve lived with the Mazars findings for a few months now. A report that, once read, leaves you in a space in which sense making is impossible. This is clear from the response to the tiny slice of it offered by Michael Buchanan’s excellent coverage. Debates in both the Commons and Lords earlier today demonstrate remarkable and unusual cross party concern, horror and engagement.
Sloven’s entrenched and ludicrous ‘it wasn’t us guv’ position compounds the seriousness of the findings.
BBC Breakfast coverage this morning included a video clip of LB, aged around 6, tangled up in his duvet. Peeking, cheeking and oozing happiness.
We’ve chatted a lot about what he would think about these latest developments. As we do. He’d have probably found the media coverage and parliamentary debates fascinating and important. Repeatedly (and I mean repeatedly) asking ‘Has the Mazars review been published, mum?’ and ‘Why not, mum?’
I don’t know what I’d have said to him, back in the day. I’d have probably dredged up some explanation/excuse and fobbed him off. Explained the delay away.
Now I’d say ‘Because they can and they do.’
The independent Mazars death review, just by way of a speedy update, was commissioned by NHS England to examine all deaths in Sloven’s learning disability/mental health provision from 2011-2015. The review is in apparently indefinite quarantine by NHS England under challenge by pretty much everyone and their dog.
[Well apart from Chunky Stan. Who, asleep on my feet is pouring his energies into extreme comfort using an almost winning combo of warm fur, being Chunky Stan and a snooze mechanism involving occasional deep/contented sighing…]
It turns out that Sloven made nearly 300 challenges/criticisms to the original draft of the Mazars (independent) review. Wow. 300 challenges? Unprecedented focus/scrutiny by the Sloves who, a week or so after LB’s death, publicly announced he died of natural causes and circulated a briefing about the risk my blog posed to their reputation…
Sloven Board minutes. 23.7.13
[Someone recently said that Sloven made a big error in their early responses to LB’s death. Sort of suggesting the pesky mess our meddling campaign has uncovered could have been left untouched if Sloven had behaved better. I’m not sure how to begin to make sense of this so I’ll stick to what we know for now.]
Publication of the Mazars death review was delayed on the basis of Sloven’s challenge and an academic review into the independent review methodology was commissioned by NHS England. [I know]. NHS England also got an internal dataset expert to review the, er, data. [I know]. Neither reviews of the review have turned up anything changing the findings/recommendations of the original report beyond the odd tweaking.
We found out this morning that Sloven have commissioned their own review into the review. Hahahahahahaha. No. Stoppit. You what?…. Taking marking your own homework in the brave new NHS (fake) world of transparency and candour to unprecedented lows. Really??
This postcard on our fridge repeatedly catches my eye as I reach for wine milk. We’re in a space of absurdities. A space unrecognised by Sloven, Oxfordshire County Council, NHS England, the Care Quality Commission, Monitor or the Department of Health. Evidenced by silence and in(non)action. A tumbleweed collective.
Erving Goffman talked about how much work is involved in awakening people to their true interests because their sleep is very deep.
Two and a half years since LB’s death and we clearly ain’t disturbing the slumber of anyone with any power to do anything. We can continue to try to ground the absurd though. Ground it in the human.
Here’s LB. Keeping watch on a Scottish holiday. No hint there may be trouble ahead. And why would/should he?
“Hey Sara!”
“Hi Phil. How you doing?”
“Quite good really. I took a case against the DWP and I won. I was so short of money it was pretty disastrous for a while. But I won. And they even backdated it.”
“Ah. Good for you. That must be a relief.”
“Yeah. How are you all? I hope the ‘victory’ of LB’s inquest is keeping you all.. erm, buoyed in some ways.”
“Mmm. Not great really. We’re waiting for the publication of a report NHS England are sitting on. Giving Sloven wriggle room as usual about their craphole provision.”
“Oh. That’s not good.”
“Nope. Typical establishment bastards. Anyway good to see you and good to hear your news.”
“Yes…. Sara.”
“Yep?”
“We will win one day. We just don’t know when that day will be.”
Heard this afternoon that there is more delay around the publication of the Mazars death review because now the completeness of the data the investigation team used is being questioned. There has already been an independent academic review of the methodology used but this review didn’t cover the completeness of the data. Ho hum.
Three or four weeks ago I wrote about the completely different treatment NHS England have meted out to the second review they commissioned, Verita 2, which had holes in its methodology you could post a tanker through (and, not surprisingly, uncontroversial conclusions depending on which side of the professional divide you sit). That review was published in a blink with minimal apparent scrutiny.
The Mazars review (unless a whole new set of data is suddenly found in some dark and dusty corner somewhere) has far reaching, harrowing and deeply serious implications and will (or certainly should) lead to swift and urgent action. It shines a light on beyond shameful practices and beyond the walls of the Sloven empire clearly demonstrates how the government response so far to the evidence we have of the premature deaths of a certain group of people is insubstantial frippery. Just tinkering round the edges while people continue to die and are swept aside. Carelessly.
It also shows how buckets full of courage are needed to effectively challenge systemic crap and that Mazars may be that rare beast. An independent organisation conducting truly independent, independent reviews.
I’ve numerous draft posts that remain tucked away in the admin pages of this blog. These draft posts are largely those that led nowhere. Started too late in the evening, lacking meaning/welly/point/direction or those that were superseded in a good (or occasionally bad) way by some other development or unfolding.
I became interested in these draft posts during LB’s inquest when the blog became a source of contemporaneous (existing back in the day) evidence. It’s over two years since LB died [howl] and there is so much I’d forgotten. (Draft) blog posts record stuff. Written, saved, revised and date stamped.
On Sunday evening I started to write about the Sloven witness coaching apparent during LB’s inquest. It was pretty upsetting to read the witness statements of the (few) staff still represented by Sloven in advance of the inquest. The ‘Dick Dastardly tale of the incredibly difficult Dr Ryan‘ was pretty hard to make sense of (and hadn’t been apparent in the earlier Verita 1 staff interview statements).
While writing I received the draft of a new #JusticeforLB related development in artistry/wondrousness. Something so powerful and moving I immediately parked the staff coaching post. And cried. In a good way.
Yesterday I belatedly chased up the #JusticeforLB quilt. Displayed at the Yorkshire Sculpture Park (YSP) in September, Baroness Helena Kennedy, QC, had agreed to display the quilt at Mansfield college during LB’s inquest. Among the horror, maelstrom, chaos and everything else the quilt ball was dropped (by me). It turns out that YSP and Mansfield College were more than able to step up. The quilt was already on display in Mansfield College. Wow.
I called in on the way back from work this evening to have a look. The cheerful porter’s instructions:
“You follow the path round to the tower on the right hand side of the grass. Wait at the wooden doors, they open automatically. Turn left, walk down the corridor and there is it. It’s lovely.”
It is. And it’s possible to have a really good look at the different patches. It seems there is always something new to see. The college is open to the public, free of charge, Mon-Fri, 9-5pm. It’s wheelchair accessible and the porter in the lodge on the left as you come in from Mansfield Road will point you in the right direction. On display for the next week or so. Just wow.
With many thanks to Mansfield College for giving local people the opportunity to see the quilt.
With the conclusion of the inquest, it seems a good point to say some (inquest related) thanks to peeps. This isn’t to say the campaign is over. Simply, as someone said at the weekend, ‘a chapter has closed’. It’s a long list (which is good) and in no order because there isn’t one. Apologies if it comes across a bit Gwynny oscar speech like. In the darkest of dark spaces we’ve been forced into in the last two and a half years the good bits are bloody good. And should be recognised as such.
George Julian
I’ve lost count of how many people have mentioned George’s legendary tweeting to me in the past two weeks or so. With admiration, awe and a good dose of incredulity. It was an extraordinary feat and every one of those dark moments uncovered during the inquest deserved to be beamed out to a wider audience. George has done so much more than live tweeting though. She’s informal (and voluntary) campaign manager, attended meetings with our legal team and INQUEST, and been a central #LBBill mover. She’s managed the various social media accounts, liaised with press, stitched her socks off, raged, campaigned, cried, laughed and survived two weeks in our grubby gaff. Good on yer.
Our legal representatives
It’s fair to say that we hold Paul Bowen QC, Caoilfhionn Gallagher and Charlotte Haworth Hird (and Esen Tunc and Keina Yoshida) in remarkable regard. Committed and exemplary human rights advocates with deeply impressive knowledge and experience. All three involved from the first few weeks after LB’s death, consistently and sensitively informing and involving us in decision making throughout this process. [Shared decision making bods in healthcare settings could do with taking a peek or two across the disciplinary divide to see how this can work in practice]. Submissions were written overnight after exhausting days. Emails sent in the early hours. We witnessed astonishing (and inspiring) working practice/expertise in and outside of the courtroom. They were also good fun and embraced the chaos of family, friends, banter, questions, and a family room humming with daily takeaway runs. LB could not have had a better team looking out for his back. (As he would have fully expected, love him).
Family and friends
What can I say really other than complete awesomeness. The jury could have been in no doubt that LB was one deeply loved dude. Extended family and friends sitting in the public gallery daily. Big G (grandad) was going to dip in and out but stuck out the whole thing (in, let’s face it, not the most comfortable space in the world). Much of what we heard was harrowing, particularly for the kids, but they sat through it (with their equally wonderful mates/cousin) with composure and engagement. I don’t suppose the various barristers have ever been so googled or their various approaches/personalities discussed and debated as they were every evening as we decamped to the pub across the road. It helped enormously to see so many people across the two weeks. The My Life My Choice crew; Fran stitching gingerbread figures at the back; Anup sitting so patiently day after day even though, as she said, the words were too long to understand; people travelling considerable distances to show their support; JusticeforLB stalwarts, Charlie’s Angels… even LB’s head teacher. An antidote really to the appalling treatment he received in his brief adult life.
Beth, the Coroner’s Officer (and the Coroner)
Beth, the Coroner’s Officer, was simply a delight, personally and professionally. Kind, sensitive, considerate, efficient and composed. She managed the demands of eight legal teams, a printer on the second floor and repeatedly being asked to produce relevant pages from evidence bundles and on the overhead screen with patience and good humour. I don’t know how many times she was asked to pull up pages 1138-9 of the medical records bundle (‘the bitten tongue episode’) and scroll up or down… ‘a bit further Beth…’ But she did it. Seamlessly.
There were mixed feelings about the coroner but I thought he was consistently even handed, fair, kind and considerate. He seemed to be following an inquisitorial script despite adversarial sniping from (some) legal representatives. And he ended the inquest with his condolences which seemed right.
Behind the scenes stuff
Enormous appreciation to work colleagues/friends who stepped in and made my work magically disappear over the past three or four weeks. No fuss, no intrusion, just action. Likewise thanks to Linda who somehow organised delicious nosh to be on the kitchen table when we fell back in from the pub almost unable to function. And to Chiade who contacted fellow journalists and media contacts, generating the most unexpected (and unlikely) media interest on the last day. Thanks also to other behind the scenes fairies for their (warming) drops of brilliance…
INQUEST
We were put in touch with INQUEST in the days after LB died and they have been consistently supportive and informative. A tiny charity who punch way beyond their funding/staffing levels in terms of what they achieve. Our caseworker, Selen, an oasis of calm, kindness, experience and sensitivity. Deb Coles, joint CEO, a powerhouse of action underpinned by a passionate belief in justice. More integrity and decency fighting for light against a public sector blackout.
The jury
Not an easy gig to be on a jury over a two week inquest. Deeply distressing content, repeated jumping around medical records and other documents, 15 or so live witnesses questioned by eight legal teams, hours of waiting. The engagement and obvious commitment of these nine members of the public was again exemplary. This was apparent by the questions they asked across the two weeks. They deliberated for a few hours and came back with a clear, thoughtful, informed and sensible determination. While questions remain about the coronial process in England (see a piece by Elaine Allaby published today for more on this), LB’s unshakeable faith in the British justice system was born out in the end.
Thank you.
One of those maelstrom twitter/social media type few days where all sorts of stuff cropped up. From different directions. A chunk of stuff about learning. We learned that the Health and Safety Executive are picking up the investigation into LB’s death from the police. [We sort of knew this but it was confirmed which is always good in our post 7/2013 experience]. And the interim board chair of Sloven is now the new board chair. Mike Petter’s involvement with Katrina Percy pre-dates the creation of Southern Health, going back several years. Mmm. He now chairs a board that has, so far, demonstrated little engagement with what happened to LB (other than allowing continual obstruction and delay). And silence about the potential sale of the Slade House site. The original #107days included fab reflection by Amanda Reynolds on ‘What’s a board to do?’ I wonder if the Sloven Board ever asked themselves any of the questions she poses. Suspect not but they could always do it now.
Ho hum.
One message I received the other day was for a question/s to challenge social workers/nurses who were going to be shown the Tale of Laughing Boy. The film is being used in several arenas to spark discussion among students/staff/senior teams in both health and social care. This is great. It’s a brilliantly produced film that captures love, humanity, common sense, crap and catastrophe. A lovely mate/legend told me recently it says everything she’s always banged on about person centred care in 15 minutes without any mention of ‘person centred care’.
So. Some suggested questions (relating to adult social care/in no particular order) for frank and open discussion in tandem with watching the film:
These points are just flung out in the hope of some productive discussion. Please add your own questions or reflections below. At some point, we’ll try to pull together some constructive thinking about what’s happened so the more thoughts the better.
More cheerful biz in the last few days involved the launch of the latest #JusticeforLB crowdsourcing request. New, deliciously creative, action to get involved in (details here).
I’ll sign off with my fave (I think) Chicago photo in this potpourri* of a post. Because it captures light, delight and fun.
*I bloody hate potpourri.
mydaftlife 