“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/

I’ve spent the week walking round with the internally commissioned external report into LB’s death in my bag. All 115 pages of it. The saddest of saddest times.

Since receiving the report there have been so many moments where I’ve wanted to pull it out, wave it under people’s noses. And say “Look. Look at this. Look at what’s written here…” On the bus, in meetings, with friends, in the street, at work, at home.

A horrible, raging inability to make any sense of the incomprehensible. Combined with a desire to make this incomprehensibility more social. To find a way of making it understandable.

I can’t do this of course. The report is confidential. If you didn’t know. And staff names have been redacted.

The covering letter from the Clinical Director of the Learning Disability Division that came with the report has five paragraphs. Summarised as:

1. Very sorry to hear about LB’s death (six months on). Please accept my condolences.
2. Report enclosed. Appreciate reading this report will be difficult.
3. Names of staff have been redacted. Duty of confidentiality as an employer. Action will be taken as necessary in accordance with appropriate Trust policy.
4. You can discuss report and redaction of names at meeting with Southern Health/investigators on 23.1.14.
5. Report is confidential. Don’t disclose content.

If you’d read the report, you’d probably wonder (as we have) how anyone could write such a covering letter, focusing largely on staff protection and confidentiality. And how the person (legal team) who wrote this letter could continue to chuck out such meaningless statements as “in accordance with appropriate Trust policy”. Was there no “duty to keep patients alive as a healthcare provider”?

Does anyone at Southern Health (the CCG, Oxfordshire local authority/social care, Adult Safeguarding Board and wider…and yes, you are all implicated) have any understanding of what it must be like to leave your child in the care of a specialist NHS hospital and for him to die? I learned on Monday night that research into the views of the ‘Winterbourne View families’ found that they felt they were the only ones who actually cared about their children. There is little evidence that LB was cared for/about in the unit, or that anyone involved has given a toss since. Other than about reputations of course. It’s been process and procedure all the way. Most obviously led by the “Southern Health Manual of Muppet Rules and Policy”.

There’s a lot of interest – media and otherwise – in the content of this ‘confidential report with the names redacted’. We postponed the meeting planned for today with Southern Health and the investigation team because, having read the report, we’d like our solicitor to be present. The meeting is re-scheduled for next Thursday. We can’t imagine this meeting. How to even think about bridging the gulf between our grief, heartbreak and intense pain, and the relentless and dogged efforts of Southern Health to protect their reputation and their staff.

The only point to the meeting we can see is to thrash out the ‘confidential’ status of the report. The investigation has pretty much done what it says on the tin. Uncovering how a largely fit and healthy young man with diagnoses of epilepsy and learning disabilities could drown. In a hospital unit with five patients and a minimum of four staff. A hospital that subsequently closed following a damning CQC inspection. It really ain’t rocket science.

The content of this report should be in the public domain. It’s a matter of public interest. How could it not be? The death of a young man in an assessment and treatment unit two years after the uncovering of the  Winterbourne View abuse demands public scrutiny. The death by indifference campaign can’t continually be swatted away. This is off the scale of unacceptable.

Oh, and while we’re on the subject of unacceptable, another Southern Health learning disability/mental health unit has got enforcement notices from the CQC this week.

What is it going to take?

Last night I went to a meeting with parents, OxFSN and Bill Mumford. Bill (I think I can call him that) attended in his new role leading the Winterbourne concordat jobby. He’s only been in post a couple of weeks so it was cheering that he pitched up on a miserable evening to hang out for a couple of hours.

After talking a bit about his background and plans to reduce the number of people in assessment and treatment units over the next 18 months there were questions, (robust) critical comment and reflections. Lack of (and short term) funding, inappropriate ‘placements’, cuts, lack of knowledge and understanding, misuse/misunderstanding of the Mental Capacity Act/Court of Protection, lack of information, fear… and much more.

Harrowing tales were told. Abuse, unexplained bruising, excluded parents, distances of 200 miles to visit units, previously happy, person centred experiences crushed by withdrawal of funding, patients told they had to earn tokens before they’d be allowed out (or across the hallway to a different part of the unit) and experiments (‘experiments’ were left unexplained.. no one went there). Pretty much everyone whose children had experienced inpatient care had a tale to tell. And there was a historical context underlying the discussion. This wasn’t new. Creative ideas had been floated in the past and people present had heard a lot of it before. Without change.

At the same time, there was an energy, commitment and passion for change. A  sense of collectivity and shared experiences. OxFSN have been doing comprehensive work around what would help parents when their children enter inpatient care. They’ve spoken to parents, carers and various key figures to explore how to support and empower. An uplifting force was apparent. A peer support network of trained advocates was floated. Families helping families. Alongside existing ‘services’.

I sat next to Pat. Pat is in her 80s. Her son, J, had two spells in STATT, one ten years ago. ‘Before it deteriorated’.  We shared stories. She’d not spoken to anyone whose child had been in there, despite J’s long stay. Pat was a real character. Her freshness, humour and no nonsense engagement was a tonic. She’d dealt with the system for 56 years and bristled with energy and forthright thinking. She made me laugh out loud a few times during the meeting. At the beginning, we were asked to sign a sheet and add our email addresses. Pat didn’t do email. She had an email address but would “never, ever use it”. Her home computer took forever to start and she refused to use it. She wrote her phone number. During the discussion, people asked if they could get a copy of the scoping document outlining the work OxFSN were doing. Yes, it could be emailed round easily.

“I don’t use email” said Pat, repeated firmly. “I’ll need it delivered.”

At the end of the meeting, there was a rounding up of the discussion and a ‘last thoughts round’. Bill raised social media at this point and said how important he’d found twitter and blogs written by parents, including this one. It was an effective way of understanding individual experience.

“I’m going to get an ipad.” announced Pat, as we started to leave. “My husband said he’d get me one. I’m going to get one. And, when I work out how to use it, I’m going read your blog, Sara.”

“Er, there’s a few swears in it,” I said. “Especially to do with STATT…”

“Swears? To do with STATT? I can deal with swears about STATT,” she replied, a twinklet in her eye.

So a collective ‘good on yer’ for us parents, OxFSN and Bill Mumford for a productive and open discussion. And here’s to change. Maybe it’s more straightforward in some ways than we anticipate.

And so it arrived. Not too long to wait despite our cranky doorbell ringing randomly at 6am, catapulting us into meerkat like ‘waiting for the courier’ activity. A long four hours or so but we’d been waiting six months.

Rosie posted ‘Remember the good times today…’ on my fb page. With a link to the Beatles.

I did. Eventually.

Here’s a photo from our last family holiday in Wales in 2010. Bag of sweets and a bus magazine. And LB in his beloved Chinatown.

Happiness, sunshine and Olympia Horse of the Year show years.

We now know the internally commissioned external investigation draft report* will arrive by courier on Saturday morning.  It’s good to know exactly when to expect it but this is an enormous thing to wait for.

So enormous, I’m not sure how we deal with it really.

Not your usual post that’s for sure. I doubt the courier will have any idea of the importance of what s/he is delivering. Of this carefully crafted set of words relating back to last summer and earlier. To when LB was alive. If I open the door maybe I’ll mention it in passing as I sign the receipt. Or maybe I’ll hide in bed. Gnawing on my knuckles until it’s signed for.  It’s tricky when you don’t have any reference points to make sense of ‘reading an investigation report into your child’s death in hospital’.

Then there are the decisions around how to read it. When to read it? Where to read it? Rip it open and devour every page on the spot? Make a cup of tea and settle down in a chosen space (based on what criteria?) Carefully read each word (when?) in an account that may (or may not) shed light on how what happened could possibly have happened.

That’s the biggy of course. We think we kind of know this already. Having read every written record relating to LB’s care for the last six months and the CQC report a couple of months later. It seems a bit bleeding obvious. But there may be further lurking horrors to discover? Nah. Surely not. There can’t be… Or the report may not resemble what we think it should or could.

We have no idea what a report like this looks like. How it’s framed. Will it be about LB? Our dude. The legend. (And self identified ‘pagan’ as his second to last school report noted). Or will it focus on ‘learning outcomes for the NHS/social care’? Will LB be consigned to the ‘lessons have been learned’ dustbin (or plastic yellow hazardous waste bag his clothes used to arrive back from nursery in)?  What will we do with the conclusions (if any) of the report?  What will any of this mean?

What will/can it feel like to read a report like this? 

The old sense making sensors are already on full alert. Tough times ahead.

Well there ain’t anything we can do about this. We just don’t know. The report will arrive on Saturday. We’ll read it. And Chunky Stan will be doubtlessly be in close contact. Providing unlimited furry comfort.

I’m thinking the advice from a lovely mate from earlier today is probably worth a punt; try and think about the report as a necessary step to get through in this (hideous) process. It’s a step forward.

In which case we should probably stock up on ice-cream and ginger beer. And have Keane lined up ready to blast out. Like old times. Creating our own reference points.

*The content of the report will, for now, remain confidential. And all that crap.

195 days on (in?) and the internally commissioned external investigation into LB’s death is due to be completed soon. 195 days. Iron cage stuff. Before these 195 days there were the 107 days. 107 days that LB was in the unit. 302 days. And the stuff before that.

Blimey. Numbers. I’m not a number person at all, but these numbers are important. They add up. An unspeakable, unimaginable experience over so many days.

This report will signal a moving along of the ‘process’.  A process that seems to operate largely to chew the insides out of ‘bereaved’ families (despite the best efforts of INQUEST.org and the INQUEST lawyers group). Next stage; the organisation/planning of the inquest.

Tomorrow will be 196 days. Or 303 days. And the stuff before that.