‘A chapter has closed’… thank you

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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.

The (blogging) mother blame

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Been sadly puzzling about my blog today. And the persistent theme of mother blame across LB’s inquest. It turns out the Band 6 nurse received a call from Sloven on the Saturday before LB was admitted warning him that LB may be admitted. Kind of astonishing given the community team (good old Oxfordshire County Council) hadn’t told us at that point that the unit existed. (Well they never told us actually). The nurse was also warned I wrote a blog which was critical of the Trust.

In his evidence, he said he thought the blog coloured the care LB received. A horribly distressing and harrowing thought. Both the community psychiatrist (Dr X) and unit psychiatrist (Dr Y) seem to dislike me with a chunky dose of intensity (Dr Y speaking on behalf of Dr X who didn’t give evidence). Other Sloven represented staff included (coached?) comments about how difficult I was in their witness statements. These weren’t sustained during the inquest.

“Dr Ryan called Dr X DR CRAPSHITE in her blog…” Dr Y’s barrister said with incredulity at one point. To an audible (and cheering) response from the public gallery. Sitting, pinned in a sort of clenched, beyond stressful hold, about a foot from this ‘cheery’ guy (as I was for the two weeks), I thought how LB would have forever after asked me with beaming delight, “Mum? Is she called Dr Crapshite, Mum?

Just before the inquest we were sent a copy of a letter written by a then senior commissioner at OCC to a disability activist. 4615 words of background, attack, excuse, vitriol and considerable billy bullshite. Both Dr Y’s evidence during the inquest and this letter present a picture of a difficult and ‘damaging’ mother who didn’t want her son home [howl] and staff terrified of appearing on partial and inaccurate blog pages. Dr X apparently refused to treat LB in the community because I was so toxic.

Wow. Wow.

I only met Dr Y a few times in meetings with several other people when LB was in the unit. I met Dr X once in January (briefly) with LB and Rich, and we had two telephone conversations. I never met the OCC bod. Of course we wanted LB home. I can be difficult at times. I was ‘difficult’ the Friday before LB’s admittance (on the phone to the crisis team) because I was terrified, desperate and was being told to contact an on call GP. An inappropriate suggestion given the circumstances. I also have a job, loving family and friends and interact, pretty cheerfully on the whole, in various settings with all sorts of people.

Katherine Runswick-Cole wrote an ace post about mother blame back in the summer for 107days of action. Most mothers of disabled children appear to experience this (toxic) blame at some point (several, numerous, sometimes continuous points) across their kid’s lives. Particularly when their children reach adulthood. I’m now wondering if you chuck in social media activity, the blame intensifies and becomes something else. Professionals seem ill equipped to deal with the (possibly public) scrutiny social media offers families. It’s experienced as unsettling, upsetting and disrupting. Sloven and OCC clearly remain unable to deal with (what was originally anonymised) scrutiny. Unable to embrace the immediacy of ongoing feedback, commentary and opportunity for engagement with services and support. Instead trying to hold onto archaic and outdated systems.

[Note to any local authority/NHS Trust… people/parents/family members will quite likely bite your hand off at the sniff of any genuine engagement/conversation around the provision, quality of support, potential future of people’s lives. Love typically underpins all these actions and responses.]

The defensive and ridiculous responses by senior professionals and officials during the inquest and over the past two and a half years, chills me to the core. That, in some way, these responses might have contributed to an obstruction of LB’s basic care and denial of our expertise/knowledge (while these pages were being monitored by the Trust) is so unspeakable, so hideous, so awful, my heart, body, brain, being freezes into something unreachable and unrecognisable.

There seems way too much focus on self interested concerns, protection, status, hierarchy and reputation among senior staff. With this blog as a central feature.

I’m not sure frontline staff were aware of or gave a shit about it.

An inquest album

With the proviso that the only thing LB was late for was a trip to the Oxford Bus Company on July 4 2013, here is the inquest in photos….

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the family room

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the evenings

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the media

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the journey

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the waiting

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the last day

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the relief

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Pre-inquest life and ‘whistle blowing’

I’ve written various posts in the last week or so, consigning them to the saved draft folder because of the Contempt of Court Act 1981. Clearly stated here about the ongoing Hillsborough inquests:

The Attorney General wishes to draw attention to the risk of publishing material, including online, which could create a substantial risk that the course of justice in the inquests may be seriously impeded or prejudiced, particularly as this inquest involves a jury.

We’ve been given (or taken) a good run for our money on this really. As a sociologist I’m all for making visible typically invisible practices. And we’ve discovered way too many dark and shady public sector corners and deep holes in the last two years or so, documented on these pages and at JusticeforLB.org. At the same time, despite clearly identified failings in the coronial process, we have to sit back and hope that there will be #JusticeforLB.

On a related note, a lengthy document was shared with us, indirectly, this week. This document, a letter, involves some tooth enamel removing content. An extraordinary mix of truth/untruth, viciousness and hysteria. And a depressingly weighty dose of mother blame. It was her wot dunnit type stuff.

Deep thanks and respect to the person who shared this document with relevant people/legal teams. For their integrity and commitment to transparency. To making visible the stories/accounts circulating behind closed and armoured (public sector body) doors.

With a ladleful of irony, I won’t be tweeting or blogging as openly or transparently for the next two weeks. Here’s a photo of an extraordinary band who blasted some joy into the everyday lives of people passing by in Oxford city centre yesterday. A bit of light in our fucking foul lives right now.L1016172-3

RiO Fantastic and the Fit and Proper Person test

3 October 2013 John Stagg
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24 February 2014 Katrina Percy
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28 September 2015 Jennifer Dolman (by courier)
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2 October 2013 Jennifer Dolman (by courier)

More records not scanned onto RiO due to human error. Deeply sorry and will review processes… Can’t be arsed to photograph.

Maladministration malarky

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Blimey. Six months ago now that Oxfordshire County Council’s (OCC) secret ‘independent’, ‘internal’, ‘review’ arrived in my inbox first thing one Monday morning. Without warning. Six months ?? I’ve written about this a lot because we’ve been so distressed, incensed, baffled and depressed that a local authority could act in this way. Without apparent remorse. LB died. In ‘care’ they commissioned…

It turns out they can’t behave like this.

We’re fortunate. Lucky? [I don’t know what the right word is here…] Just bloody grateful to have pro bono support from someone I can only describe as a tornado of human rights expertise, action, commitment and sense. A remarkably detailed 27 page letter was sent to the Legal Officers at OCC. Carefully documenting the wrongness of their actions and why.

Some lowlights from this letter [my flaky lay interpretation]:

You can’t conduct a review into support offered to a family without involving the family in the review. You can’t treat local authority records as a definitive record of what happened when they are clearly flawed. Inadequate record keeping and inappropriate records (describing people disparagingly) is wrong. You can’t offer contradictory explanations why a review is commissioned and proceeded. You can’t circulate an internal report to external people. You can’t deny pre-publication right of reply to one individual/family. You shouldn’t share people’s personal data without requesting consent or informing them. You shouldn’t spring a review on people without warning. Meaningless apologies are meaningless. You can’t make vague reference to stuff (like changing practices in the future) and not follow it up. You can’t defame people and present them in a particular light that is offensive and untrue. Circulating such a review is a breach of a person’s (human) right to a private and family life…

And so it goes on. Issues raised around maladministration, defamation, data sharing and the processing of personal data.

I sent the letter to Agent T (big sis) earlier. She replied; “Just realised my jaw has been really clenched for the last half an hour just throughout rereading that letter…”

I’ve given this post a bit of a flippant title. I don’t know why. Maybe I’m sick of being such a consistent harbinger of public sector related misery. Sadly there seems to be no end to this position.

We’re expecting a response from OCC by 4pm tomorrow.

LB died. 

The final frontier

L1016083-2These last few weeks have been (particularly) battering. Sloven have revealed ‘their hand’ as documentation is circulated in advance of LB’s inquest. Despite glossy (meaningless) words in the Independent on Sunday, they continue to hold their (battle) ground.

Six members of staff now have separate legal representation. Six? Four of these are currently ‘properly interested parties’ along with Sloven and us. Interested parties can ask questions during the inquest. There will be eight sets of legal bods present. Wow. How will the tiny, wooden courtroom, described by John Lish, accommodate everyone?

I pretty much stopped working today. Sadly. It’s impossible to read the reports/interviews/documentation and continue to ‘work’. The emotional distress is too intense. We’ve been catapulted back to that space between LB’s death and his do. A space that defies words. This afternoon I slept. This morning we talked with a journalist. Re-living horror. And hearing further horror. Learning disabled people are simply treated with unchallenged (and accepted) contempt. Over and over again.

Our experience over the past two years can be summarised as harrowing grief, devastation, disbelief and destruction with repeated, unremitting and remorseless (hobnailed) booting by Sloven/OCC. Neither body has expressed a drop of positive action, candour or transparency. Fake apologies and dirty actions. Remarkable really.

In contrast, people have collectively recognised, rallied, raged and stepped up. A sort of maelstrom of creativity, colour, brightness, spontaneity, humour, life and humanity. Even more remarkable. [Thank goodness]

I hope we manage to retain some ‘sanity’ during the unfolding of this long awaited and deeply dreaded process. We’ve nothing to gain in many ways. LB is dead. That ain’t going to change. Answers? Within the boxes of documentation/reviews stacking up it’s pretty clear what happened and why. There’s no need for the inquest to be adversarial. With eight legal teams and the rows of ducks lined up, I can’t see it being anything else.

The biggest bundle in the bundle box

L1015872We received two weighty boxes of inquest bundles on Friday. (Bundles are lever arch files of well organised, numbered documents.) The ‘medical records’ bundle contains records we ain’t seen before. Despite requesting all of LB’s records in July 2013.

Our solicitor repeatedly requested missing records during those early months. Documents dribbled in. Peppered with ‘Oh yes we have!‘…and then  ‘Er, missing docs attached’ type responses. In February 2014 came the extraordinary realisation that none of the unit records we had were complete. We’d never received full copies of unit meeting minutes before or after LB died. Leaving us unaware that his seizure activity was disputed and dismissed.

Disputed… Dismissed???

[Howl.] [Can you imagine?]

Katrina Percy wrote to us in Feb 2014 apologising for this evidence of her piss poor leadership. A letter sent the day the first Verita report was published. [She didn’t mention the words piss poor or leadership but that’s what it was. The odd mistake may be ‘explained’ away as an error. When mistakes start stacking, up as they have and continue to do so, it can only be piss poor leadership.]

He died.

LB drowned.

In November 2014 the coroner sent us copies of the Initial Management Assessment (IMA) [I think that’s what it stands for] report and 72 hour SIRI document, neither of which we’d received. Over a year after LB died. More key documents slipping through the flakey Sloven disclosure net.

And yesterday, even more unseen footage…

We simply don’t understand how an NHS Trust can get away with such blatant disregard of candour and transparency. Without censure. We don’t understand how it’s acceptable that families have to, if they can scrape themselves off the floor long enough and have the resources to do so, police this stuff. We have excellent legal representation, costs covered by remarkable fundraising actions of all sorts of people and pro bono support.  We’ve also research skills that enable us to wade through this shite and identify omissions, crap and dishonesty. A lot of people don’t.

I’ve lost count of how many times we’ve (repeatedly) said These are public bodies… How can this be? How often we’ve been let down by people who must know the implications and consequences of their actions. They may have particular job titles/authority but they’re still human at the end of the day.  Just baffling. With an icey core.

Back to the bundles. No surprise that the biggest bundle in the bundle box is the ‘Sloven Policy bundle’. A remarkable 1030 pages of policies and procedures.

Nothing slipping through the net here of course. Nah. I won’t bother checking.

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Jury bundles, floor plans and photos

L1015667A full on few weeks. Writing witness statements for the coroner a hideous task. Reliving everything that happened. Again. He died? While having to discard what we now know [unit records/CQC inspections seared into my brain/eyelids]. So blinking painful. Then a week or so later, receiving Sloven witness statements. Piercingly painful, sometimes enraging reading.

More reading as both big reviews commissioned by NHS England around LB’s death pitched up. The broader Verita review building on their original review which found LB’s death preventable. And the Mazars review into deaths in Sloven’s mental health and learning disability provision since 2011. These have been circulated for ‘factual accuracy checking’ (just drips off my tongue these days) and won’t be published now until after LB’s inquest. Around 500 pages that must be generating agitational agitations at top Sloven towers level. As it fucking should.

Yesterday was the fourth pre-inquest review hearing at Oxford County Hall. My Life My Choice turned up in force. It makes a difference to see family/ friends/campaigners in the public gallery. Sort of counteracting the apparent ease with which LB’s life seemed to be treated in a ‘deleted/trash emptied’ way. Like so many other people. George Julian brilliantly tweeted much of what was discussed on a new dedicated campaign account; LB’s inquest.

It was just incredibly sad. I don’t know. Maybe more so than the previous three meetings (if that’s possible). Earlier hearings involved thrashing out issues around whether or not the inquest should be an Article 2 inquest with a jury. This related to LB’s human rights – something he was always so (rightly) hot on – under the European Convention on Human Rights. How the state has a duty to protect life.

Back in the day, these were important points to us and we were worried Sloven would derail them. Yesterday it was confirmed that LB’s inquest will start on October 5th for up to two weeks. Discussion turned to witnesses, jury bundles, floor plans and photos.

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Preparing for your child’s inquest

    • Is possibly one of the saddest tasks ever
    • Truth, justice and accountability fought for in a process with unimaginable physical and emotional impact
    • Enormous financial cost
    • And so far from guaranteed

Don’t ever tell me this is an inquisitorial process.

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