Nearly turning 21, magic and mopping up crapshite

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Not a good time. LB’s 21st birthday on November 17th. Against a backdrop of global senselessness and horror. MargoJMilne posted a link to a wonderful version of Faure’s Cantique de Jean Racine yesterday. This sort of worked/distracted me for a bit.

Originally Rosie and I were going to be around on Tuesday and started to plan a ‘treat’ outing with some cracking suggestions via twitter (fab suggestions that will be squirrelled away for future enjoyment). Rich reorganised his work. It turns out Tom finishes lessons at noon that day. Will is coming home tomorrow for the week. Owen pitched up yesterday for the night, rearranged his university work and is staying till Tuesday. And the wondrous Molly and gang are coming round in the evening. Wow. We’ll muddle through with visits to the cemetery and Mansfield College to see the quilt, nosh, drink, memories and hopefully laughter.

I’m on leave tomorrow as well. After the dentist, another visit to the quilt, followed by lunch with big sis Tracey (Agent T) and our parents. It’s randomly spectacular that the quilt is in Oxford at this time and that Kevin the porter is so blinking helpful. [I think it will be on display till at least the weekend and will post the end date when it’s decided].

Several people have asked if things are pretty much sorted now the inquest is over. Here’s a brief summary of where we’re at (in no particular order):

  • The coroner has written a Prevention of Future Deaths report which Sloven have 56 days to respond to.
  • The Verita 2 report was published at some point in the last few weeks (tumbleweed).
  • The Mazars (draft) death review has undergone and survived severe challenge from Sloven (very long story). This should be published this week some time.
  • The Health and Safety Executive (HSE) continue to investigate LB’s death and should be drawing on evidence from the inquest. Of which there was plenty.
  • The General Medical Council (GMC) and Nursing and Midwifery Council (NMC) are investigating referred staff.
  • The Oxfordshire County Council maladministration/secret review shite is ongoing.
  • Norman Lamb’s Green Paper – No voice unheard, no right ignored – has shamefully been buried by the government (non) response published last week. The #LBBill is an ongoing endeavour.

On a slightly separate note, Norman Lamb deserves special mention for his consistent, dedicated and passionate attention to and knowledge about ongoing (howling) gaps and worse in learning disability and mental health provision. George Julian has gone on leave making clear her/our frustrations about the delays that seem be an unremarked upon part of this inhumane process.

It also became clear after an evening with mates on Friday that there was confusion over Dr Crapshite and Dr M. They all thought Dr M was Dr Crapshite. And Mr J, her barrister, made so much about this to defend her. Blimey. No. Sorry if that got lost in translation. Dr Crapshite was the community psychiatrist who saw LB once in Jan 2013 (and, as we heard during the inquest said she wouldn’t see him as a patient post discharge because I was toxic). Dr M was the unit psychiatrist who prescribed bonjela for LB’s bitten tongue post seizure and, erm, insisted (even during the inquest) that LB wasn’t having any seizure activity. Crapshite is as crapshite does but for the sake of clarity ‘Dr Crapshite’ is a different person to Dr M on these pages.

I’ll finish this post with two magical things.

A beautiful photo of LB I’d not seen before.

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And David Harling’s second animation. His first, equally spectacular work (or love), can be watched here.

Gotta keep fighting dark with light/colour. And remarkably (thank fuck) the light keeps coming.

 

Drafting stuff and Mansfield College magic

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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.

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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.”

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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.

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With many thanks to Mansfield College for giving local people the opportunity to see the quilt.

(*long lost) Lawrence and looking for Dappy

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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.

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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…

A tale of two reviews (and an inquest)

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For anyone managing to keep up with this dense (and often tediously frustrating and jargon laden) tale of trying to get accountability when your child dies a death in NHS ‘care’ (involving a dereliction of such basic care that defies understanding) well done.

To recap. A week or so ago, a second Verita review (V2) was published. This was commissioned in July 2014 to explore broader issues around why LB was admitted to the unit in which he died. A third review, the Mazars death review (M1), examining how Sloven responded to deaths in their learning disability and mental health provision since 2011, was commissioned on our request by David Nicholson shortly before he stepped down as NHS England CEO in March 2014. We thought this needed urgent investigation because of the ease with which Sloven dismissed LB’s death as natural causes. [Weep]. The contract was given to Mazars in November 2014. Another six month contract.

We fully expected both reviews to be published by June/July 2015. With the pesky general election as the big delay factor. But nah, they dragged on. M1 because the findings inevitably generated the need for further investigation. V2 because, er, it could. V2 was eventually circulated for factual accuracy on Aug 21th, M1 a couple of weeks later on Sept 9th.

During LB’s inquest the status of these two reports were continually contested. Sloven were determined to get V2 in front of the jury while chucking M1 into oblivion. We thought the coroner should have sight of M1 because the findings were relevant to a prevention of future deaths report. We found out, during this nasty piece of game playing in open court that V2 was complete. Nothing like being kept informed, sensitively. And then we were informed it wasn’t. What a mess. In a space that you’d kind of hope that the wellbeing of the family would be uppermost in the actions and thoughts of the NHS Trust involved and all related organisations. Family wellbeing? Eh? Nope. It’s all about reputation, reputation, reputation.

In the end, neither report was disclosed to the jury.

A week later, V2 was published. No further delay. Despite both lay reps (George Julian and Bill Love) disputing the findings. M1 continued to be challenged by the Sloves. NHS England took the criticisms of M1 seriously and commissioned an academic review of the methods used. [I know.]

Seems to be that an extra level of rigour is needed because the findings are so controversial. Yep. Make of that what you will. The NHS England plan for moving people out of of Assessment and Treatment Units was published last Friday. This was the subject of some criticism around resources, reach and expectation. To me it seemed to be well thought out, sensible plan particularly given the failures of everything that had gone before in the last 3/4 years (as long as the money followed the patients into the community and remained with them). It strikes me that the delay in the publication of M1 is a strategic move partly relating to last weeks news. We can’t have a report that drips death and darkness casting a shadow over shiny new plans.

The latest M1 delay news (the report of the methodology will take up to Nov 13th) came with the usual teeth jarring statement that NHS England know this will be ‘particularly disappointing for the family’. I don’t think NHS England know what this experience is like for us. I think it’s almost impossible for anyone to understand what it is like to have a child left to drown, alone, in an NHS hospital bath and then be forced to fight for over two years for accountability for his death. Please ditch the trite and meaningless statements.

Here’s a radical thought.You don’t need to wait for a written review on the methodology (you are choosing to). A telephone call with written confirmation to follow would do. Why not put this ‘grieving family’ at the centre of this vile and harrowing process for once and just publish the fucking report?

Is someone having a laugh?

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Another failed CQC inspection for a unit on the Slade House site (across from the (now closed) Short Term Assessment and Treatment unit in which LB died) this week. Nah. 824* days after LB died and Sloven still can’t provide a service worthy of the (at least) £3500 per week they are paid to look after each of the four patients? Surely not.

This was a re-inspection, the unit having failed to reach adequate standards in August 2014. And, on return, in August 2015, the inspectors found failings. Still. They found understaffing, inadequate record keeping, a lack of supervision and lack of leadership. The care provided was of a good standard, it’s the processes and leadership that are failing. One professional said;

as a service they seem very focused, but I don’t think they are helped by what goes on above them, it just doesn’t really seem to know what’s happening.

Nah. That couldn’t be clearer. Sloven are simply shite when it comes to learning disability provision. We all know that. It’s been demonstrated in the various investigations into LB’s death over the past two years. They are all PR, shiny awards, faddy nonsense and wasting big bucks on novelty crap.What’s it going to take for someone/organisation to step in and do something??

Meanwhile, Oxfordshire County Council (who couldn’t organise a piss up in a brewery clearly) have extended the contract for Sloven services in Oxfordshire for another two years. To enable a safe transition to new service providers. No idea what they were doing between early 2014 when they decided to pull the plug on the Sloven contract and now. Arsing around commissioning and responding to a craphole ‘independent’ report to contribute to the ‘toxic mother collective‘, led by Dr M, Dr Crapshite and Anon (ex-commissioner) perhaps.

Oxfordshire County Council are stumping up enormous sums of cash for flaky provision. My brain melted when I read that understaffing meant the on call staff member was up to 40 minutes away for emergency overnight medication provision but generic emergency services were nearby. £3500 a week?

Is it all just a joke? All talk, no improvement and a group of patients whose lives simply don’t matter? It doesn’t make any sense to me.

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*I counted the days this morning when I realised I’ve woken every morning since LB died thinking about him.

Screw face and skinning puppies

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Still unable to make much meaningful sense of LB’s inquest but moments are surfacing. A few here. Again in no order. Toilet moments. The toilets were back from the courtroom, through the cafe towards the exit. A block of three cubicles for women. Despite strategically timed efforts (roughly aiming for the middle of break times) I always seemed to collide with a jury or Sloven staff member. So blinking awkward.There was only one woman advocate across the other seven legal teams so this was less of an issue [sigh]. I kind of went for a ‘make do and definitely don’t mend’ approach with jury members. This involved eyes firmly on the floor and the usual ‘thank you’ type acknowledgements around holding doors firmly parked.

The kids were upset and angry by the various interactional exchanges that occurred in the courtroom. Smirks, hints of excitement and puff and schmuff between various Sloven bods at the front of the courtroom. A ‘screw face’ technique was tried and tested across the two weeks to manage this.

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Rosie also stepped up and explained what it was like to experience this behaviour to a senior Sloven staff member. Love her. Hopefully this has been passed to the Sloven senior team/board and will be incorporated into their inquest policy/engagement. Our and other families’ experiences suggest an over emphasis on staff coaching rather than any thought to what it must be like for family/friends in this setting.

Moments involving Dr M, the consultant psychiatrist, and her barrister, AJ, are sadly hard to forget. For so many reasons. Not least the efforts AJ made to work to a script seemingly derived from the various Disney/Pixar films LB both loved and got so upset about. Depicting me, ‘The mother’ [with extended dramatic pause], as a Cruella de vil type character. Skinning puppies for fur coats.

At one point Paul Bowen, QC, asked Dr M who was the best person to know what LB meant when he said something. This generated avoidance strategies reminiscent of childhood banter hanging out in the car outside pubs with my sisters. Coke, crisps and bickering/discussion with a backdrop of the Grease soundtrack. Dr M, not a child, prevaricated and twisted a knife that should have been removed over two years ago.

That is a very general question. It depends what being said and when it is being said, I cannot ask that question. It would have to be more specific.

[Howl]. There was worse to come. Almost luckily via video link as I’m not sure  what I would have done if she was present after this exchange.

Mr F: You heard Winnie Betsva admit that she had failed Connor, SR and the family, is there any matter relating to failures from your part?

Dr M: It was an act of tragedy. In hindsight, we could have made some different decisions but with the information we had at the time and balancing of pros and cons we made right decision at the time.

Mr F: I asked ‘you’ not we.

Dr M: I made the decision at the time with others weighing information we had at the time and no, I don’t believe there was a failure of care from my part.

An act of tragedy? No failure? Can you even begin to imagine? And this woman is a practicing psychiatrist in Cork having given up her licence here. The GMC still investigating her conduct… There is too much too wrong here. And our beautiful, funny, loving boy is dead.

Sloven and the earlier death of a patient

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One of the various devastating moments during LB’s inquest was the revelation that another patient had died in the same bath in 2006. Can you imagine?

As difficult as it is to believe, the same psychiatrist, Dr J, who rang me at work the morning LB died in a pretty lackadaisical way, signed the patient’s death certificate in June 2006. The two 999 calls made the morning LB died were played in court. (The unit phone wasn’t working). I didn’t listen to the first but the second, by Dr J, was extraordinary in that the operator, after three or four minutes of collecting detail, was completely unaware of the urgency of the situation and was going to tick a ‘within four hours’ response box. Can you imagine?

Dr J meanwhile seems to have remained resolutely unreflective about these two events, not mentioning the earlier death in her statement or live evidence and mouthing to me across the court ‘Are you ok?’

At least two other staff members were working in STATT in 2006. No one mentioned this earlier patient in their statement or evidence. Or during the Verita ‘investigation’. No one saw the bath as a potentially risky space. No one seemed to give a shit.

The bare facts: a patient in his 50s had a seizure in the bath (non epileptic seizure though how this was determined is a mystery to me) with someone present who apparently struggled to get him out of the bath. His cause of death is recorded as 1a. convulsion with asphyxiation due to 1b. malnutrition, and 2a. contributing cause depression. There was no postmortem or inquest. The coroner is now investigating whether an inquest should be reopened into his death.

Sloven, of course, come out of this deeply sad tale coated in crapshite. The more recent back story: Back in March 2014, a CQC inspection of a unit on the Slade House site (next to the now closed STATT unit) criticised a bath ban. Dr M, the consultant psychiatrist (who together with her barrister must qualify for some unaward for the pond scummish smear tactics they repeatedly employed during the inquest) apparently vaguely recalled a patient dying back in the day, that the baths were found to be unsafe as they were too deep and after some ‘leadership mentoring’ (always a dangerous thing for those who shouldn’t be within whiff of leadership) banned baths.

This ban, falling foul of the CQC, caused an on the spot investigation on the instruction of Sloven execs. [NB. The same execs who didn’t go near STATT after LB’s death to check the provision was safe for other patients.  Death schmeath*. It takes a CQC inspection and hint of bad publicity to get action. Every time]. Once the earlier death came to light, Sloven management apparently actively discouraged Dr M from raising this issue further. She left Sloven’s employment (on what terms?), relinquished her licence in the UK and went back to Ireland to, erm, ‘practice’ there.There was then an apparent burying of this information until the first week of the inquest when it was disclosed by Dr M’s legal representative. Sloven did their best to re-bury it during the inquest by insisting the patient died of cardiac arrest in very different circumstances. Mmm. (Same) bath, seizure, death… I dunno. Strikes me as pretty fucking relevant, at least to be disclosed in order for any relevance to be properly examined.

What a sad and sleazy little tale. From a public sector body who claim 100% candour compliance in their 2014/5 annual report. The deliberate concealment of a similar death on the part of Sloven (even to their legal representative) revealed in an obscure and disingenuous way during the inquest. Adding even more (I didn’t think it was possible) distress to a harrowing experience.

We’re left wondering what else hasn’t been disclosed? How often does this level of cover up happen within the NHS? And was there any point to the Francis Inquiry?

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*As the Mazar’s death review will reveal, in harrowing detail if it’s ever published.

A veritable situation

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I’m beginning to think about the inquest with a bit of coherence after a shaky week in which Rich and I repeatedly started sentences “I still can’t believe that…” Some mysteries remain and we have a lot of questions still. Like how the fuck can learning disabled people continue to be treated so badly in 2015?? This is probably the first of a few rambling posts reflecting on this stuff.

My mum has post-inquest shingles which is seriously crap. Can you imagine? Someone needs to look urgently at the enormous emotional, physical and financial cost this system imposes on families. NHS Trusts should not be allowed to inflict such damage with their shitty actions and practices. [Have a look at the similarly awful action dished out by Humber NHS Foundation Trust to Sally Mays and her family.]

This week Verita 2 was published. The broader review into what happened to LB, moving beyond what happened in the unit. Slightly controversial really. It details a stream of failures by Sloven in their takeover activity of the Ridgeway Partnership in November 2012 but concludes LB died as an outcome of clinical staff actions rather than failings on the part of commissioner/Sloven managers. Wow. I’ve tried to read the final version twice and can’t get past p30 (the executive summary). It actually makes my eyeballs ache.

Chris Hatton has provided excellent commentary on this review, ‘Verita, a little less than the truth‘, which concludes;

I cannot reconcile in my head the evidence contained in this report and the conclusions it reaches – short of finding video evidence of Katrina Percy stalking the corridors of STATT with a piece of lead piping I doubt that any evidence would have been sufficient to make Verita reach a different conclusion.

George Julian has also documented why she can’t support the conclusions, looking at both process and content. Within moments of publication of Verita 2, ongoing disgruntlement around Verita’s relationship with NHS England and their ‘independence’ appeared on twitter. Just one example here which is pretty astonishing. Ho hum… This leaves an even bigger question mark for us over the independence of ‘independent reviews’ generally. Having read interview transcripts for Verita 1 and listened to evidence across the two weeks of the inquest, it’s hard to reconcile some of the findings (or unfindings) from the original review.

The secret Oxfordshire County Council review also continues to baffles me. Not just because of the secrecy with which it was conducted and circulated to various organisations a week or so before we got sniff of it, but also because it seems to be an exemplar of a non-independent ‘independent’ review. What’s going on here? Pretence? Delusion? Denial? I dunno. Any explanation is chilling.

All this underlines our concern about the newly introduced Independent Patient Safety Investigations Service (IPSIS) which seems to be headed by Mike Durkin of, er, NHS England. Membership of the expert advisory group is beyond depressing. Nothing like embracing a multicultural, diverse society. Nope. Nothing like it. It seems to be another Winterbourne View Joint Improvement/Bubb type endeavour. All talk and crap all action.

There shouldn’t be layers of ‘independence’. As simple as. Until this is recognised, there’s no point in puffery.

Oh, and for those of you wondering why the Mazars death review hasn’t seen the light of day yet (originally due to be published last summer), Sloven have challenged the review methodology. So it’s being independently validated. Another cracking example of the differing power families and NHS bods have. Despite the latter being responsible for death and the ongoing destruction of families.

It also hints at a level of independence rare in NHS related independent reviews. Here’s hoping Mazars will break the mould. Something needs to happen.

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‘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.