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?

So the Trust are sticking to ‘the report will not see the light of day’ hardline. Goose-stepping across transparency and duty of candour. Someone commented last week that ‘sunshine is the best disinfectant’ but the shutters are clearly drawn tight at Southern Health Towers.

They aren’t covering up, apparently, and accept “duties to be honest, open and candid but…” An old mate of mine said years ago that a ‘but’ in the middle of a sentence means ‘what I’ve just told you is a pack of lies and here comes the truth…’ I don’t know if there’s any evidence to support this but the Trust has to balance transparency with duties of confidentiality to patients and staff. Basically, a cover up then.

A brief rattle through the latest ‘keep the report secret’ reasons…

We [the family] only have a draft copy and “it would be entirely inappropriate for a draft that [staff] have not had chance to comment on to be released into the public domain.” (Southern Health’s main preoccupation, after their reputation, is staff. Providing good care? Feelings of bereaved families? Forget it.)

The duty of confidentiality to “CS” stick is waved again. The way in which the Trust is suddenly championing his rights is sickening. After abusing them in so many ways when he was alive.

Then there’s the Data Protection Act 1998.  Such a small unit so very difficult to stop the identification of staff. The report isn’t actually about who was where, doing what when LB died. It’s about how someone could die in such a setting with pretty much one to one care. It shouldn’t be kept out of the public domain because it happened to be a small unit. It should never have happened in such a small setting.

Again there’s the nonsensical statement that staff took part in the investigation on the basis that it was for the purposes of learning within the Trust. Please ditch this Enid Blyton depiction of staff/employer relationships which is vomit inducing.

• If staff were as compliant as you suggest, why the fuck weren’t they doing their job properly?
• Staff don’t have ‘a choice’ about taking part in investigations when a patient dies unexpectedly.
• There’s a demonstrable carelessness with ‘truth’ in the draft report.
• Staff didn’t have a problem telling the CQC inspection team what they thought a few weeks earlier. With the knowledge that the CQC inspection would be made public.

Then there’s the ‘making the report public will prejudice future investigations’ line. Something so fucking flawed and nonsensical I can’t be bothered to unpack it again.

Reading these arguments is like fingernails screeching on a blackboard. Pathetic and contrived.

LB and Bess. October 2012