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

I was at a meeting earlier this week where there was mention of three learning disabled people who had died unexpectedly all with (apparently) good care packages. They all choked. Astonishing.

My brain keeps bouncing from the investigation report into LB’s death and the response of the Trust. Let’s just go back to the Board minutes* of 29.7.13 (p.81).

Again. Astonishing. Astonishing that the Trust state that the postmortem indicates LB died of natural causes when it never did. It was undetermined and then established with additional tests. Most definitely not natural causes. And beyond astonishing that early investigations indicate that all appropriate systems and processes were in place. What the hell were these early investigators looking at?

That the Trust were so quick to try and badge this as a ‘natural causes’ jobby and that this probably ain’t unusual practice when it comes to learning disabled people dying unexpectedly, makes it hugely important that the report is made public. The apparent acceptance that a fit young 18 year old man could die in such circumstances underlines how being labelled as ‘learning disabled’ removes any of the considerations/human rights that the rest of us are accorded. We know the terrible statistics around the early deaths of learning disabled people. Less clear are the ways in which the actions of NHS and private providers contribute to, facilitate, cause and cover up these deaths. This is a matter of public interest.

The report must be made public.

*Just ignoring ‘the user’ shite for now.

We met with the investigators, Verita, this morning. They’re based in Soho which was one of LB’s fave haunts. We were there with him, one Sunday last June. On a day trip from the unit. It was hard to believe we were back in the same space to go through a report into his death.

But the investigation team were very professional, thorough, fair, sensible and kind. A kind of balm after our interactions with the Trust. We went through a few factual inaccuracies (getting to know the lingo now) and talked about a few bits in the report. We agreed with the conclusions anyway and think they nailed it really. So thank you.

Walking back to the bus stop, a pup captured the different feeling this meeting generated. Kind of pug puppy in a blanket feeling.

And then this van went passed us on the A40. The dude would have loved it.

“It appears that there may have been some misunderstanding regarding the purpose of the meeting on Thursday. Prior to our discussion yesterday, my client had not been aware that your client was not intending to put any concerns about the accuracy of the report to [investigators] in writing [1]. My client had understood that your client would have provided comments to [investigators] prior to the meeting, and that the meeting would be helpful for our clients to discuss any outstanding concerns [2].

There we were. Dreading (beyond dread) meeting Southern Health bods with the external investigators on Thursday morning. An email exchange this afternoon with the investigators was reassuring. They confirmed we’d simply discuss factual inaccuracies and any interpretations/conclusions we didn’t agree with. This wouldn’t necessarily lead to changes.

Then an email from our solicitor. Southern Health have instructed external solicitors.

All change. And a few smacks around the head with a baseball bat.

The external investigators have been ditched from Thursday’s meeting. Instead we’re to discuss our concerns with Southern Health and they’ll relay them back to the investigators (my arse). These concerns should be set out in writing in advance so they can be responded to in full at the meeting.

Oh and, the report will defo remain anonymous and confidential. Because, allegedly:

• it’s the property of the Trust; we only saw it with the caveat it was confidential
• it isn’t appropriate to disseminate it wider, the purpose of the report is to learn lessons
• if published, it would prejudice further investigations in the NHS and prevent staff being open and honest
• staff were interviewed on the basis the report wouldn’t be disseminated
• the Trust has a duty of confidentiality to LB and he’d be identifiable if the report was public.

I had that freezing cold feeling when I read this email. The same feeling I had when we took LB to the unit that Tuesday evening, nearly a year ago now. This morning I caught the bus to the cemetery before work. To visit LB’s grave while there was some sunshine. I thought about how the investigation had pretty much pinned down how what happened, happened. And how it should never have happened. And cried.

There aren’t really that many health related ‘lessons’ to learn from what happened if we’re honest. These are ‘lessons’ most health professionals know before they start their training. And a lesson ain’t really a lesson if it’s common knowledge.  It’s a bit like a supermarket selling a load of rancid meat because a freezer breaks down and the investigation into the death of a customer concludes; ‘Er, make sure the freezer works’.

There are broader issues around the complete disregard and indifference with which learning disabled people are treated of course. But I don’t think Southern Health need to get too hung up on “learning lessons” in this instance. They should really know ’em already or ship out. And stop pretending they can provide learning disability healthcare.

It’s also absurd to say that future investigations will be prejudiced if the report is made public because staff won’t be open and honest in the future. If Southern Health think that all the interview extracts included in the report reflect openness and honesty they are more stupid than I imagined. We’re talking ‘dog ate my homework’/’nothing to do with me guv’ type crap. Perhaps staff would be more open and honest if the content of reports were made public.

And how can staff be assured in advance that the report won’t be disseminated? You can’t possibly make that a condition in advance of knowing what might come to light.

“In the course of the investigation we discovered some heinous crimes dating back fifty or so years, involving hundreds of patients, and but we told staff the report won’t be made public, so we’re keeping keeping it all confidential…”

Nonsense.

The last point, that Southern Health has a duty of confidentiality to LB (not a duty to keep him safe from harm, a duty to keep him alive or even ‘care’ for him) is scandalous. Reputation is clearly the only thing on the agenda of this bunch. A state funded organisation. An organisation, allegedly, built around ‘care’.

The meeting on Thursday is off. Not surprisingly. And we’re here. Waiting for the legal missiles to be launched.

Fucking bastards.

Gone midnight. Still awake. Not in a good/party/fun type awake. Just awake. Listening to Keane. Thinking about LB. As always.

So where are we at? In terms of process? Because that’s what it’s about now.

We’re meeting with Southern Health and the investigation team on Thursday, with our solicitor. I was kicked into a sick feeling space by an email from Southern Health last week asking for an understanding of what we wanted to gain from the meeting. And which of the head honchos we wanted to be present (nothing like a bit of twitter surveillance to move things along). It included the statement; “We will also want to say sorry to you, in recognition of the report findings into the tragic death of LB”.

How any parent can anticipate pitching up to a meeting with NHS ‘suits’, knowing a ‘sorry’ will finally be forthcoming. Because the contents of the investigation into their child’s death say X. After all these months of crapshite cover up, mucking about, and concern about reputation. What the fuck are we supposed to say? “Er, why thank you Southern Health. Much appreciated. Better late than never. Hey ho. These thing happen..” But of course these things don’t happen. Or they shouldn’t.

It’s outrageous we’ve had to fight as we have since LB died. To the extent that I had to insist on the phone, days after LB’s death, that his body be returned from the funeral home to the JR for a second postmortem procedure that was initially overlooked*. It’s been a constant battle, causing us immeasurable distress and pain. If we hadn’t fought, and hadn’t had the resources to fight, the chances are that it would have remained a ‘death by natural causes, due processes followed’ jobby. A crappy old internal cover up report would have confirmed this. And the rot would have continued.

The meeting on Thursday is to discuss the accuracy of the report and issues of confidentiality and anonymity. It will then be sent to the Coroner who will make decisions about the inquest. I’m not sure that the Trust can argue that the report should remain confidential or anonymous. It speaks to the treatment of, and provision of support for, learning disabled people across the country. It’s a matter of public interest, and of enormous interest to every other parent of learning disabled children in particular. (If nothing else, other parents are learning from what happened to LB.) I’m not sure how they can stop us making the findings public really other than slapping an injunction on us. And that would be a classy action. Nothing like a bit of transparency and duty of candour. But there has been nothing like a bit of transparency and duty of candour so far, so who knows?

So seven months on. And still no one at Southern Health (Oxfordshire County Council, the CCG, etc etc) appears to understand, realise, recognise or even acknowledge that LB died. He was a human being. Like anyone’s son is human. The response so far seems to completely ignore this. I sincerely hope this a reflection of general crapness and not because he was learning disabled. He was a hilarious, remarkable, generous, loving, talented and exceptional dude, loved off the planet into the far reaches of the universe. And back again (as Brenda describes her grandson’s love here).

I miss him every second of every day. We all do. Even Chunky Stan has lost his bounce. And a bit of chunkiness.

What a completely unnecessary and damaging mess.

*This only happened because of the prompt actions of INQUEST.org and our solicitor.

We spend quite a bit of time looking at stuff. Photos of LB, school bits, things LB did. He took photos. I can’t remember when he first got his digital camera but I remember that the first set of photos was a remarkable exploration of his bedroom. I don’t know how he did it, but he photographed his room at around 10cm intervals from ground level to the ceiling. All seemingly taken from the same spot. It was the weirdest, most carefully taken set of photos I’ve seen. As always, making visible space differently visible. I’ve not found this set of photos yet. Despite hoarding so much stuff, we were careless with what LB produced. Complacent that there would always be more.

Another time, he took photos of his Playmobile figures (well the public service ones). Three at a time, balanced on a (Beano?) annual in front of the radiator. All facing the same way. All evenly spaced. And all taken from the same point. Such remarkable attention, thought, application. And more.

We took his flip video camera into the unit a month or so before he died. He’d got into Dirty Harry in there and it had sparked off film making ambitions. The camera came back with the rest of his stuff after he died. There were seven very short clips on it. A couple we’d made with him when visiting. With William and Rosie. The rest he’d filmed, on his own, in his room. Two were of him giving the finger. He had an exceptional ability to swear/demonstrate ‘swear activity’. Love him. He was recorded in the unit notes as entering the ‘feeling group’ one Thursday afternoon, giving everyone the finger and leaving. As always, streets ahead of the rest of us.

Tonight I came across some photos he’d taken six years ago. When he was about 12. More benign than giving the finger. But still fascinating.

What a beyond remarkable dude.

Not an awful lot to say about this snippet from the paperwork prepared for the next Governing Body meeting of the Oxfordshire Clinical Commissioning Group (30th Jan).

Other than what other part of the NHS would/could possibly report such statements?

Because STATT closed, commissioners have had to place patients in the Ridgeway Centre in Wycombe. A unit they’ve had ongoing safeguarding concerns about. Seriously? We’re talking about a hugely vulnerable group of patients here. So there were concerns about STATT that were ignored for a few years. The CQC (pah, pesky interfering bunch) identify serious failings, so patients are sent to another Southern Health provision where there are, er, ongoing safeguarding concerns. Am I missing something?

The decision has (now?) been made not to place in the Ridgeway Centre. Blimey. So a service is being commissioned that isn’t fit for purpose. How does that work?

A few questions that bounce around my (lay) head:

• Do the commissioners give a flying fuck about the patients they seem to be consistently consigning to substandard care?
• Have they considered commissioning effective support that might prevent the need for admittance to an assessment unit?
• Has any thought been given to commissioning services that aren’t crap?
• How crap do Southern Health have to be before decisions are made about not commissioning them at all? The evidence is stacking up like billy-o.
• Does Southern Health have some sort of hold over Oxfordshire commissioners, local authority, safeguarding board? Some skelos in the cupboard? There must be an explanation for this consistent audit trail of utter shite.

Answers on a postcard please. You can buy some cracking ones here; http://sarasiobhan.wordpress.com/fundraising/