Blogging way more than I want to. That’s my measure that things are wrong. I wish they were more right and I could fuck off out of this space for more than a day.

Anyway. Big charities have been playing on my mind since LB died (and earlier). I had a bit of a pop at Mencap and The Challenging Behaviour Foundation a week or so ago for releasing a press release stating they were supporting us. We didn’t feel they were ‘supporting us as a family’. We discussed this with them and appreciate they are working to support our efforts for change and are working for broader change. Some issues around communication…

My sister, love her, emailed the NAS (among other organisations) last week. The way in which family, friends and others are doing things to help just makes me dissolve. Every time. She got some craphole, round the houses response, along the lines of ‘thanks for flagging this up’ loser.

This was duly tweeted (unfailingly) by #justiceforLB and eventually ‘acted upon’ with a tweet from the NAS saying that what happened to LB would be shared with their followers and friends. Not sure what the difference is between the two groups but suspect money may be a defining factor. #Allegedly

The big share from NAS turned out to be tweeting the link to our solicitor’s press release. Eh? Big commitment by a charity founded in the 1960’s by families of children with autism. No statement about the death of a young autistic dude in an NHS hospital? No engagement at all really.

The Tizard Centre, also love em, called on the NAS to show the 90 second video montage of LB at their conference this week. Silence. Of course. Then the CEO tweeted this, earlier tonight (the day before the conference);

Seriously? Bit late to ask this really. Shouldn’t this be a call to arms for a charity set up to support families and people with autism? A scandalous level of care in an NHS setting leading the death of an 18 year old young man. Isn’t this sending shock waves through the NAS?

If it isn’t, what the fuck do you do?

Update: Mark Lever mentioned LB in his speech and various NAS people have been in touch offering help.

I was thinking about how so many of the posts I’ve written here relate to a small geographical area. Here’s a selection with a ‘map’ to give some idea of this. It’s good to go back to the funny times.

1. The bath and the bell
2. Lorry heaven and tea time
3. Saturday morning
4. Suing the dishwasher
5. LB and the Co-op
6. LB, the unlikely ethnographer
7. LB, Bollo and the voices
8. LB and the failed kebab
9. Taliban telecon
10. [fell outside the space limit, just beyond the JR Hospital, but included cos it’s so fab] LB and the mermaids
11. Medical spin and the sleep study
12. The EEG and the asylum
13.  “A picture of mum?”
14. The eel bus
15. The do
16. The park
17. LB, the bugs and the rubbish bin

I was reminded today of the fear parents of dudes like LB have of the future. The constant fear of ‘what will happen when I’m no longer around to protect her or him?’ A terrible, terrible thing to live with. A clear indication that, despite historical change, shift towards ‘community’ living and the introduction of ‘personalisation’, ‘personal budgets’ and other policy prescriptions, life for learning disabled people, and their families, remains uncertain, pretty much shite and impoverished.

And, as we found out, sometimes dangerous.

This was further underlined by a woman in her 80’s I met recently who said she was kind of relieved her son’s cancer was ignored for so long (because he was learning disabled) until it was advanced. Can you imagine?

Can.you.imagine.any.mother.saying.that? 

In amongst the positive support for #justiceforLB this week on twitter, a clinician (unnamed) got embroiled in a protracted debate around mortality and learning disabled people. His original point was to defend “the NHS”. Atrocity stories like LB’s death were unhelpful in the fight to protect this organisation for the better good of all (a typical middle class position that completely overlooks the sustained health inequalities that resolutely remain despite extensive evidence that they exist – yep, brain melt stuff). Doc Anon’s point seemed to be that learning disabled people die earlier anyway. They embark on an inevitable journey of (tiresome) co-morbidity, leading to early death. Get over it.

To cut about a billion tweets down to a sentence or two, there was robust rebuttal of his position supported by strong evidence to the contrary. I don’t think he really shifted on his thinking. And I don’t know how many other medics support his position.  Explicitly or implicitly facilitating/colluding with the labelling of unexpected deaths of learning disabled people as ‘natural causes’. That is ‘deaths that don’t matter’, ‘deaths that don’t count’.

If you expect particular ‘types’ of people not to live as long as other, more valued, ‘mainstream’ people (and think it ain’t no bad thing), it becomes easier to sweep the former under the ‘let’s not bother with’ carpet.

And our dude (along with potentially countless others) was swept into this space last July.

A week in which the independent report into LB’s death was published, the #justiceforLB campaign started in earnest on twitter. And the CEO of Sloven Health (crappit let’s ditch ‘health’ from now…) disappeared.

Before reading on, you might want to read Questioning Southern Health’s future fitness for purpose for some context.

And reflect on the way in which people are openly sharing difficult, harrowing or up till now, unspoken experiences to contribute to change. Just one example; I remember his jeans were wet… There are so many more.

… Back to the missing CEO. Well she seemed to be around Monday evening when the report was finally published. Tuesday evening, local news led with the ‘Connor Report’ Such a fab title for the dude who so consistently and so rightly ‘Connor’d’ everything.. ConnorCo, Connortown, ConnorCoscrapyard… He would have bloody loved it. And a big thank you to the local media geezules for getting what happened and calling it.

Medical Director spoke for Sloven. She popped up again on local radio the following morning and took a hammering. Wednesday, the CEO was due to be in the Radio 4 studio to discuss what had happened. Medical D by this time was probably lying in a dark room.

She chose not to appear.

By this point, our exceptional (accidental) campaign manager and the star behind the #justiceforLB tweets*, was creating a series of ‘Where’s Wally CEO?’ pics.

Where was she?

0ne of the key failings of the unit identified by the independent report was a lack of effective leadership. The CEO was, kind of awkwardly for the health biz world (I’m assuming), the Health Service Journal’s (HSJ) Chief Executive of the Year last year. The HSJ ran a short (damning) piece today about what happened to LB today. The CEO, again, was not visible. Where the fuck is she?

A year ago she was quoted as saying;

I am passionate about leadership because great leaders transform the lives of staff and our community. Leadership in Southern Health is about empowering our patients through working in a joined-up, cost-effective way. This means that in their own way, everyone here [9000 staff] is a leader.

Blimey. Empty words chased by more empty words. I know pretty much fuck all about management but 9000 leaders?

One would have kept LB alive.

*@GeorgeJulian

Since LB died, quite a few journalists have contacted us. We’ve referred em to our solicitor, Charlotte, and kept our heads down.  Charlotte spoke on our behalf a couple of times on ‘You and Yours’ on Radio 4. This felt like luxury. She was calm, confident and informed. With the report due to be published we knew we couldn’t continue to avoid some sort of media engagement. Not if we want action.

‘You and Yours’ asked us to be interviewed about LB and STATT (redacted) this week. Pre-recorded. The Chief Exec of Sloven was allegedly going to be live in the studio. Ok, we thought. Gotta be done.

It turned out Rich couldn’t do the allotted time as he was teaching. So I went to BBC Oxford yesterday afternoon. Dreading it. I’m happy to teach, give papers at conferences but talking on national radio about LB’s death? Eurgh. Serena, a cheerful and sensitive, broadcast journalist (first one I’ve met) (broadcast journalist that is), took me to a small, windowless room on the third floor (or 2nd floor), talked me through what would happen and left. I sat with a set of headphones on. And started answering questions from Winifred, in Salford. (Bit familiar to call her Winifred but it was a bizarre situ).

Awkward, uncomfortable and kind of excruciating. When it was over (about 20 mins) I sat there. Not knowing if I was supposed to press a button to hang up. There wasn’t a phone or anything. ‘Eurgh,’ I thought.

Serena pitched up and took me to the ground floor for a cheeky BBC Radio Oxford interview. We agreed if it was crap she’d bin it. She’d read the report, been part of the social media wait-athon on Monday before the report was published and obviously understood the key issues. She asked an unscripted set of searching questions. Much easier.

This morning we listened to Phil Gayle give the Sloven Medical Director a bit of a hammering (around 1 hr 7 mins, available for a week). When he said, in relation to the CQC inspection in November, ‘… and it’s staggering to those of us outside that a young man can die in a hospital, in a medical unit, and no improvements be made. She [his mum] said to us how could this happen and how could his death not be a flag that something was wrong?’… we kind of cheered and made a note to sign up to the Phil Gayle fan club.

Lunchtime it was ‘You and Yours’. My interview first. Halfway through the programme. A few minutes of eurgh. Then Winifred.

“We invited the Southern Health Trust to come on the programme. They didn’t want to. They sent us a statement…”

Oh.

Fuckers.

Quiet day yesterday. Reading through the final report. A combination of analytic focus on content and sickening agony. I felt like uploading it, pressing ‘publish’ and walking away. Sick of the struggle we’ve had to get to this point. We all are. It’s been a distressing, relentless, time consuming (costa del fortune) experience. There have been so many battles with Sloven Health (SH). So many times I’ve received emails or phone calls, at work, home or elsewhere. Relaying developments, steps backwards, shifts and delays that have made us howl and weep and rage beyond rage. I feel battered, embattled, crushed and physically shrunken. I know Rich feels the same.

LB died. And he shouldn’t have. As simple as.

Our beautiful dude. In an NHS setting where we thought he was safe. A systemic failure in the most basic provision of care. Yet SH were horrifically quick to badge his death (a healthy, fit and lively young man) as ‘natural causes’. How often does this happen? Howl

SH (I can’t call them the ‘trust’ anymore) have embraced a new, shiny, transparency and openness in the last few days. The hills are alive with the sound of candour and all that. (Weirdly, or maybe fittingly, Maria von Trapp died around the same time.)  The report will be published (fully redacted, and almost unreadable) on the SH website tomorrow. At some undisclosed time. Good it’s being published. Not good about the redaction.

A request to any media interest in the report: please don’t run with a superficial and largely meaningless ‘lessons learned’ angle.

Instead could a critical lens focus on;

1. how an NHS trust can openly operate such a sub-standard level of care in one of its units (at a cost of around £3500 per patient per week). They didn’t even up their game for a CQC inspection eight weeks later. And no professional who went in there, even the swat team who pitched up after LB died, noticed anything amiss. [A focus not just on SH here but also commissioners, the local authority and higher up the chain…]
2. how widespread is such appalling learning disability provision? [On a slightly more positive note, last week’s CQC board meeting demonstrated a strong commitment to change (around 1.02). LB was one of the 3 lives discussed].
3. how does the post-Winterbourne View work square with what happened at STATT?

What happened to LB should add weight to the call for closer scrutiny on premature deaths among learning disabled people. It’s beginning to sniff a lot like euthanasia through the backdoor from where we’re sitting.

Anyway, in advance of this report becoming public, here’s a short film of the dude. Because he counts. Like billy-o. In buckets.

Action stuff:

The report will be published at some point tomorrow.

You can sign up for email updates of our campaign here; http://eepurl.com/O1cvH

You can follow @JusticeforLB on twitter.

If you tweet about the report, it would be fab if you could include #justiceforLB so we can keep a track of thoughts/views/comments.

I’ll set up a new tab on this blog for discussion/thoughts about the report. These can be a comment as usual, or as a ‘guest’ post (either anonymously or with your name included). Please email these to justiceforlb@gmail.com. And any thoughts or comments are welcome. From the heart, from experience, from a practice, academic or policy background.. Whatever…

Finally. We couldn’t have got this far without remarkable support in many ways from different sources (expected and unexpected). It shouldn’t be that families have to rely on having networks in place, or access to relevant networks, to be able to get anywhere when something like an unexpected or preventable death in hospital/social care happens.

This is where social media can really kick ass. Discussion/thoughts about this to be continued.

“Southern Health NHS Foundation Trust have reached an agreement with the police that we are able to publish a final copy of the fully redacted report.  We are of course very pleased about this as it allows a spirit of openness and transparency.  We remain committed to do everything we can to ensure we have learnt from the recommendations in the report.  The report will be published on Monday 24th February 2014 as per your request.”

Working at home today. Waiting for the final report to arrive. This arrived.

The police want to delay publication of the report while they look further into possible prosecution. This could take months and delay the inquest. Our lovely CID guy explained their position carefully on the phone yesterday evening and was very clear about the various scenarios and possible outcomes. Big tick if anyone is keeping tabs on ‘learning’ from this beyond harrowing experience; being kept informed is crucially important.

Long discussion with Rich later. I agreed with him that we really want the report published now. We’d rather it was out in the public domain. Given that learning disabled people count less than non-learning disabled people, and evidence suggests that the high mortality rate among this group ain’t a priority, we’re not starting from a strong position to gain a criminal prosecution. And we’ve also been at the mercy of the consistently craphole actions of Southern Shite Health* for too long now.

We’d rather smash up the rulebook and not wait months to hear if there will be a prosecution. The inquest delayed further.

The depth and breadth of expertise of so many people on social media who are following what’s happening could shine an unusual light on the different issues raised in the report. Parents, disabled people, carers, academics, health, social care and legal professionals, mental capacity, human rights and policy experts, teachers, third sector workers, journalists, ‘general’ people and, of course, the real DN. The list is endless really.

If there is enough evidence for a prosecution, this will become apparent. If not, we’ll have generated a comprehensive discussion that should draw in broader cultural issues relating to being learning disabled in the UK. Because this was never about learning not to leave a learning disabled young dude with epilepsy in the bath unsupervised.

We’re meeting the police next week to discuss the publication of the report.

*Found out this afternoon that Southern S. Health passed on new documentation to Verita yesterday. Twenty weeks into the investigation and 2 days before the final report is due they discover that they didn’t send a full set of documents. No words really. Other than what a steamingpileofcrapshitewankstainballbags.

Unusually for me, on Sunday night I dreamt random, kind of sinister stuff. Empty and covered swimming pools, a gravy boat of incriminating bric-a-brac and secret nepotistic emails from Trust bigwigs. #allegedly

I was surprised at lunchtime yesterday to see tweets about LB on ‘You and Yours’, Radio 4. We knew there was a piece in consideration but I’d forgotten this in the maelstrom of Southern Health twist and turns. The programme wasn’t available on iplayer immediately but in a magical turn (of which there have been many over the past months), a copy became available. A copy we can keep. I was able to listen to the first half before going to a meeting with Oxfordshire Family Support Network about their work to help families and people who enter secure units. A group generating their own magic. Up against it, in terms of funding, but making remarkable strides in supporting families of disabled children/adults in Oxfordshire and beyond.

The ‘You and Yours’ report was thoughtful, comprehensive and context setting. It paved the way for the publication of the report into LB’s death. Howl. Sob. This is scheduled for next week, depending on the police enquiry. The programme included a statement from David Nicholson (DN), CEO of NHS England, who has become involved through twitter. In twitterland there was an element of comedy to DN’s involvement as his credentials as the ‘real’ David Nicholson were questioned. A parody DN? This made me chuckle. I won’t go back and find his rebuttal tweet, love him, but it was something along the lines of ‘if I appear fake it’s accidental, this is the real me’. One of those moments in tweet history, I’m sure, to be quoted in social media theses. I am who I am. Along the lines of it does what it says on the tin. Yep. With you on that one. As would LB.

The real DN’s involvement could be criticised. And I’m sure it will be. We couldn’t give a flying fuck to be honest. We’re just relieved that some sense and authority has entered into what has been a space of unrelenting incomprehensibility and horror.

For the first time in eight months we can step down and start to think about our beautiful dude. So thank you.