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.

Paperwork/research is piling up. Horrible but necessary paperwork. Today I pulled together relevant bits from various online Board minute meetings. Gotta try and keep the legal costs down, particularly given the way in which the Southern Health ‘muck about muppet’ tactics are rocking up the the legal costs. Exponentially.

[Fundraising update alert. Tomorrow hopefully…]

I trawled through reams of online stuff, screen grabbing relevant sections, pulling them into a word document. I was struck/’pleased’/relieved by the Non-Executive Directors’ sensible contributions/interventions which I ‘live’ tweeted while I worked. Whistling and all. Glimmers of sense/sensibility in a beyond nonsensical experience.

Then I got to this. Section 26.2. Board minutes from 29.10.13. Relating to the CQC inspection report of STATT and other recent CQC inspections of Southern Health provision:

Whistling stopped.

Does an NHS Foundation Trust with specialist learning disability provision really (really?) need to learn about epilepsy care and implement an epilepsy care pathway? One in four learning disabled people have epilepsy. I know this and I ain’t no medic. This ‘learning’ is shared across other divisions?

[howfuckingcrapshitecanthegobshitewankstainsbe?]

This for me is like a state run nursery leaving a four year tot on the M25 and ‘learning’ that moving traffic can be catastrophic. Then sharing this ‘new learning’ among other state run nurseries.

We’re not talking proper risks here. Potentially life threatening operations, life limiting conditions and the like.  We’re not talking anything really. Other than the most basic of ‘health’ care.

LB should never have died. And an NHS Trust should never legitimately be able to say that sharing an epilepsy care pathway is “learning”.

Candour has arrived at Southern Health Towers. The final report (names/job titles redacted) will be published on Southern Health’s website (subject to police approval).

Thank you to whoever should be thanked for this.

And so we don’t forget LB in this intense focus on process, here’s a vintage clip. Original laughing boy…

Re-reading the draft ‘oh so confidential’ report today I was struck by some of the extracts from minutes of meetings at the unit. Nah, I thought. That can’t be right. I’d have queried that at the time, surely? This happened in a couple of places, all relating to the same topic strangely. [I couldn’t possibly say what topic… confeedentchallity and all that.]

I went back to the copies of minutes emailed to me at the time. Nope. Mine were slightly different. Missing certain bits. I cross-referenced our lovely solicitor’s meticulously detailed chronology. Nope. She was obviously reading from the same set of minutes as me.

Wow.

I sincerely hope there is a simple reason for these discrepancies. I almost don’t want Southern Health to demonstrate any more shiteness. It just makes it harder to live with.

The latest twist in the workings of Southern Health. Seriously wearing. I felt so low today I went to bed this afternoon. The final report into LB’s death wasn’t completed as expected on Tuesday. It’s been delayed by a further two weeks because they’ve decided to allow the staff to comment, directly to Verita, on the draft. We only know this because I contacted the investigators today. Southern Health don’t keep us informed of much. What do we matter?

I’ve lost track of the shifting positions, inconsistencies and duplicity they’ve demonstrated since LB died. Since their investigation began on October 1. The investigation was to take 60 days but as they’re such a bunch of muppets, nothing was put in place in advance to start it on time. They then faffed and fluffed for six weeks before handing it over to an independent organisation in the middle of November (around day 46).

The final report is now due on February 21st (with no guarantee we’ll receive a copy). That’s 144 days since the investigation started. 232 days since LB died.

Until this report is finalised, it can’t be sent to the coroner. Until the coroner gets the report (or the Sunshine Southern Summary version) he can’t make any decisions about the inquest. An inquest, for all of you lucky enough never to have been pitched into this space, is a thing of complete and utter dread. For so many reasons. To have it delayed, through such unnecessary and inhumane actions, is unforgivable.

I’m sure any regular reader must know, by what happened to LB and the findings of the CQC investigation, Southern Health do not come out well on any count. I suppose that’s why we’re being subjected to such extreme, desperate, bullying actions.

Do I have to say again that our beautiful, talented, hilarious and completely defenceless dude died under the care of this bunch of bastards? The worst fear of any parent, made worse, so much worse, because we thought he was in safe hands. The NHS. In the care of at least four staff (including two learning disability nurses) 24 hours a day. With five patients to look after. “Supported” by a team consisting of a psychiatrist, psychologists, an OT, a charge nurse, an essential life planner, a unit manager, some herb who was at every community team meeting I attended but never said his role (he took blood) and a “care” manager. This wasn’t an understaffed, over populated, under-resourced ward. This was (or should have been) fucking royalty.

Once LB entered that unit, the staff took the hardline he was an adult. Despite their ridiculous questionnaires pegging him at a “mental age of 10”. Because he was deemed to be ‘an adult’ we were excluded. Our knowledge, love and understanding of him, built up so intensely, over 18 years, was irrelevant. They knew better.

But of course they didn’t. How could they?

How could they?