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.