In a superlative moment of classiness, the OCC Director of Social Care sent me a red flagged email at 5pm this evening with a revised version of his shoddy little review. And responses to my concerns.

Yep. 5pm on a Friday evening. I hadn’t had a bad day up to then really. I had an emergency appointment at the dentist because my tooth cracked the other day. No big deal in the toxic world of trying to get accountability from public bodies. I then worked at home reading a thesis and catching up on other tasks. Halfway through reviewing a book chapter (deadline today/ironically about social media use) the email pinged in. End of that review. Instead the typical and now familiar deeply intense rage, frustration, bewilderment and distress.

LB died. He’s dead.

Why the fuck are we dealing with shite still?

[Brief background to the review; OCC commissioned an external consultant without telling us. They sent the review to Verita. Verita said we should see it. OCC emailed it without warning back in March. Under duress I identified the inaccuracies.]

The only good thing I can say about this latest documentation is that a potential PhD student now has more ‘riches’ to pore through and analyse in trying to understand the workings of public bodies under challenge.

The revisions to the original report? Extraordinary.

A few examples…; SR says x, y or z but “there is no record on file to this effect”. “There is no file record of that contact. SR advises that it took place.” “The Care Manager arranged a further visit on 31st August to meet CS, but the records indicate that this was cancelled by the family but SR has advised that she asked for the meeting to be rescheduled, which is not recorded on the file.” He even states there must have been two meetings on one day because I said the care manager wasn’t present and the record says she was.

What is actually happening here? Why do ‘records’ trump what happened? Apparently there is no ‘record’ that I waited in all day for a visit from the care manager who was a no show. Parents/families now responsible for making sure social services keep accurate records…

What makes these partial, half arsed and biased ‘records’ the ‘truth’?  I asked OCC to look at the different interpretations of one afternoon where the OCC ‘recorded’ version was sanitised off the planet. My blog presented an alternative description of an afternoon etched in my brain.

Completely misunderstanding my point, the response today was;

SR has recorded a different perspective on her internet web log. Having reflected on the implications of this comment, I have added a recommendation to my report that OCC provide guidelines to staff, service users and the public that postings on web based social media are not part of the case management or complaints and comments procedures. I do not consider it appropriate to comment on a social media posting.

There is a clear issue here that public bodies don’t get social media and see it as something threatening. Which it isn’t and shouldn’t be. [This was in evidence earlier today. Sloven while hosting a shindig for their learning disability/mental health staff started blocking campaigners on twitter when challenged about inaccuracies (or simply asked questions)].

I’m not claiming my version of what happened that afternoon is more ‘truthful’ or that local authorities/NHS Trusts should be looking for clues about their patient care on blogs or social media. I’m saying that ‘official records’ are not infallible. They are created by people. Like this blog is. Or any other account of something. It’s ludicrous, short sighted and problematic to only accept what is written in a particular space, by a particular ‘professional’, as ‘truth’. As the revisions of this craphole report demonstrate.

I suspect part of the (sustained/tooth shattering) battering we are getting from Sloven and OCC is due to our use of social media. The ‘records’ are under threat. Emails/tweets/posts contradict and challenge official versions. We’re shining an unwelcome light on stuff that has probably gone on in darkness for years. And doing things the ‘wrong way’.

You can’t shout down, bully, deny or try to ignore what is perfectly legitimate challenge to a system that is steeped in wrongness. A wrongness recognised by those beyond LB’s family or friends. To try to do so is to show contempt for democratic processes. For basic human rights.

The only way there will be any resolution – not for us because that clearly ain’t going to happen – is for NHS Trusts, local authorities, regulators, the Department of Health, government, etc, to embrace the use of social media. To engage with patients, people, constituents and use these interactions as a resource. Something valuable and insightful, not something to be feared. Something to build on, work together and thrash through challenges, obstacles, difficulties…

As much as OCC, Sloven and others may resist or dislike it, the future is the internet web log.

I am absolutely delighted that we’re going to be forming a partnership between Southern Health and Ridgeway. I believe our combined effort is really going to provide superb world class services for people with a learning disability across the whole of the area we cover.

Katrina Percy, Sloven CEO, March 2012 

What Katrina Percy forgot to add to this ‘welcome to my empire’ speech was… and if we cock it up, we’ll flog the Slade House site and other Oxfordshire land for a massive profit and buggar off back down south.

Yep. For some reason [piss up/brewery/Oxfordshire County Council?] there was no penalty type clause in the contract awarding the tender to Sloven. Gifting them land and property worth millions. Rumour is the Slade House site will be used to develop student accommodation.

Astonishing.

Andrew Smith, our bloody brilliant MP, and our equally fab local BBC Oxford news team are all over this. As Andrew Smith said in an interview last week; “This is unacceptable to the public, unacceptable to LB’s family and unacceptable to me. I will fight it.” Good.

Sloven – any thought of providing ‘superb world class services’ for learning disabled people long gone – issued a statement saying ‘We are carefully considering our options. No decision has been made’. ££££££Kerching££££££££. The Department of Health issued a statement saying something like “er, none of our business, piss off and sort out your mess locally.” A teensy bit shortsighted really.

Hmmm.

If Sloven think they are going to profit from LB’s death and parasite this money out of the county, their reputation management indicators will be flashing London bus red for some time. As simple as. It’s just wrong.

Of course they may do the right thing without a fight. That would be priceless.

LB’s buses at the end of yesterday

Wondering what we can do really. In a bit of a despondent way. The update I posted this week illustrates how public bodies can simply delay. With seemingly unlimited doses of delay powder. A sort of modern wday ‘smoking out’ policy. Earlier today I found out that Oxfordshire County Council (OCC) are delaying their response to my Freedom of Information request about their ‘investigation’ because a Public Interest Test is being carried out.

I don’t know what this means and the FOI dept at OCC were unable to enlighten me beyond the fact it will involve a delay of up to 20 working days. Another month potentially. It would be bloody brilliant if they could soup it up a bit and complete this test (test?) in days rather than weeks but given the weighty blanket of on going delay, I’m not going to anticipate anything. July 22 is the new date.

I don’t have a bar anymore. That was crushed somewhere along the way. When we realised that these public bodies can do whatever they want to devastated parents/families and no one will stop them. I now expect the worse and, so far, that has been spot on.

Another parent, Nic, whose child died a few months before LB posted this on my blog yesterday.

Nic regularly posted comments in support, in shared grief, rage and despair at the impossibility of trying to get accountability, justice or anything to make sense of the apparently casual and brutal chucking aside of much loved children’s lives. One of the first comments she made included the request ‘More photos please’.

So here’s another pic from that holiday in 2010. When we were walking a completely different path. And, on a more cheery note, the #JusticeforLB flag is returning to Glastonbury this year with the legendary Lawthom Goodley crew. Bloody good timing in the circumstances.

Just under two days in Tromso this week. Midnight sun land. Well not much sun but spectacular sights. And so much daylight. Which was strangely mesmerising. I learned a lot from colleagues about life in northern Norway. Including snow management techniques. The importance of building capacity to allow space for snow. Built on an understanding that the snow ain’t going anywhere fast and everyday life needs to continue.

Sloven and OCC don’t seem to understand the need for this space when it comes to grief and families. Instead they just shovel, or try to. A process that’s destructive, counter-productive and hugely damaging.

There are policies that try to create space for grief within the NHS. The sensible and straightforward Being Open framework, for example. But policies are just words if they’re ignored. As meaningless as the non-apologies identified by Ally, LB’s cousin, in her recent dissertation on Sloven communications.

There are obvious differences between heavy and sustained snowfall and grief. But I find it hard to understand how the grief stuff, something so agonisingly accessible – most people can, if they can bear to go there, have the beginnings of imagining what such grief feels like – is dismissed or ignored. Intensely human, deeply emotional and gut wrenchingly awful experience is trampled over, ignored or worse, by the public bodies responsible.

How do we get it so blinking wrong?