Think the first word from the up to now missing Sloven CEO deserves cloud treatment. Quick and dirty. And not duplicating the repeated sections of today’s underwhelming interview or our Phil’s cutting questions and commentary. Speaks volumes.

One or two pretty important words missing.

Blogging way more than I want to. That’s my measure that things are wrong. I wish they were more right and I could fuck off out of this space for more than a day.

Anyway. Big charities have been playing on my mind since LB died (and earlier). I had a bit of a pop at Mencap and The Challenging Behaviour Foundation a week or so ago for releasing a press release stating they were supporting us. We didn’t feel they were ‘supporting us as a family’. We discussed this with them and appreciate they are working to support our efforts for change and are working for broader change. Some issues around communication…

My sister, love her, emailed the NAS (among other organisations) last week. The way in which family, friends and others are doing things to help just makes me dissolve. Every time. She got some craphole, round the houses response, along the lines of ‘thanks for flagging this up’ loser.

This was duly tweeted (unfailingly) by #justiceforLB and eventually ‘acted upon’ with a tweet from the NAS saying that what happened to LB would be shared with their followers and friends. Not sure what the difference is between the two groups but suspect money may be a defining factor. #Allegedly

The big share from NAS turned out to be tweeting the link to our solicitor’s press release. Eh? Big commitment by a charity founded in the 1960’s by families of children with autism. No statement about the death of a young autistic dude in an NHS hospital? No engagement at all really.

The Tizard Centre, also love em, called on the NAS to show the 90 second video montage of LB at their conference this week. Silence. Of course. Then the CEO tweeted this, earlier tonight (the day before the conference);

Seriously? Bit late to ask this really. Shouldn’t this be a call to arms for a charity set up to support families and people with autism? A scandalous level of care in an NHS setting leading the death of an 18 year old young man. Isn’t this sending shock waves through the NAS?

If it isn’t, what the fuck do you do?

Update: Mark Lever mentioned LB in his speech and various NAS people have been in touch offering help.

I was thinking about how so many of the posts I’ve written here relate to a small geographical area. Here’s a selection with a ‘map’ to give some idea of this. It’s good to go back to the funny times.

1. The bath and the bell
2. Lorry heaven and tea time
3. Saturday morning
4. Suing the dishwasher
5. LB and the Co-op
6. LB, the unlikely ethnographer
7. LB, Bollo and the voices
8. LB and the failed kebab
9. Taliban telecon
10. [fell outside the space limit, just beyond the JR Hospital, but included cos it’s so fab] LB and the mermaids
11. Medical spin and the sleep study
12. The EEG and the asylum
13.  “A picture of mum?”
14. The eel bus
15. The do
16. The park
17. LB, the bugs and the rubbish bin

I was reminded today of the fear parents of dudes like LB have of the future. The constant fear of ‘what will happen when I’m no longer around to protect her or him?’ A terrible, terrible thing to live with. A clear indication that, despite historical change, shift towards ‘community’ living and the introduction of ‘personalisation’, ‘personal budgets’ and other policy prescriptions, life for learning disabled people, and their families, remains uncertain, pretty much shite and impoverished.

And, as we found out, sometimes dangerous.

This was further underlined by a woman in her 80’s I met recently who said she was kind of relieved her son’s cancer was ignored for so long (because he was learning disabled) until it was advanced. Can you imagine?

Can.you.imagine.any.mother.saying.that? 

In amongst the positive support for #justiceforLB this week on twitter, a clinician (unnamed) got embroiled in a protracted debate around mortality and learning disabled people. His original point was to defend “the NHS”. Atrocity stories like LB’s death were unhelpful in the fight to protect this organisation for the better good of all (a typical middle class position that completely overlooks the sustained health inequalities that resolutely remain despite extensive evidence that they exist – yep, brain melt stuff). Doc Anon’s point seemed to be that learning disabled people die earlier anyway. They embark on an inevitable journey of (tiresome) co-morbidity, leading to early death. Get over it.

To cut about a billion tweets down to a sentence or two, there was robust rebuttal of his position supported by strong evidence to the contrary. I don’t think he really shifted on his thinking. And I don’t know how many other medics support his position.  Explicitly or implicitly facilitating/colluding with the labelling of unexpected deaths of learning disabled people as ‘natural causes’. That is ‘deaths that don’t matter’, ‘deaths that don’t count’.

If you expect particular ‘types’ of people not to live as long as other, more valued, ‘mainstream’ people (and think it ain’t no bad thing), it becomes easier to sweep the former under the ‘let’s not bother with’ carpet.

And our dude (along with potentially countless others) was swept into this space last July.