The charity shop (can’t remember which one) collected LB’s belongings (the outer layer) this morning. A close encounters type mound of black bin bags and boxes of stuff heaped up in the front garden.

It was more painful than I thought it would be, given this ‘stuff’ had all been in bags for pretty much 15 months now. Pulling his well worn camouflage jacket out of one gaping bin bag, I went back inside and let Rich deal with the social niceties with Shane and his white van.

“Thanks for the donation! Much appreciated!” I heard the cheery call and slam of the van door a short while later.

My brain kind of bounced round in some kind of indescribable space while the bits left of my heart took a further pounding. Dust swirls. The pain almost too familiar now.

Within moments of Rich shutting the front door, the post arrived. A letter from Knoxville, Tennessee.

A copy of the approved resolution around what happened to LB submitted by Mark Sherry. And a letter that says it all really.

“As societies we are diminished if a tragedy like this does not spur us to do better.”

Yep. Couldn’t agree more.

It’s 4.07am in Japan and my rubbishy (non) sleep continues. It’s odd dipping in and out of unfolding developments from afar. So what’s happened on the Bubbgate front? Well, the Bubbman has updated his blog and Mencap and the Challenging Behaviour Foundation (CBF) have issued press releases to try and cover their backs. Stephen Bubb’s update is, as I would expect despite having only known of his existence for 48 hours now, an exercise in complete arrogance. Mencap and CBF have clearly been caught with egg on their face (sorry, these breakfast jokes are going to run and run) and are, like the Bubbster, proclaiming their complete conviction that learning disabled people and families must be involved in this new group. Just awkward all round.

I kind of feel despair really that no one round that breakfast table (apparently key players in the provision of learning disability provision) either thought or had the guts to say that a Plan couldn’t possibly be developed by such a narrow group of chosen few. What a clear illustration of talking the talk and not walking the walk. The complete lack of action in changing learning disability provision becomes so understandable in the face of such cosy, myopic and self interested players.

Anyway. It’s LB’s leavers prom tomorrow. He won’t get his chance to ride in the limo. The school invited us to attend and are going to let off some balloons in his memory. Rich is going (sob). As @georgejulian tweeted this morning, ‘how special that school can consistently get it so fecking right’. Yep. It is.

And how beyond depressing that so many others, with power and influence, get it so fucking wrong.

A year ago tomorrow (I’m on Japan time so my timing is a teeny bit flakey) it was LB’s do. Today he featured, along with Josh and Chris on the Today programme. I don’t know what I’d have thought about this a year ago. I wasn’t in a fit state to think about anything really. The thought of burying our child was so off the scale of anything I could make sense of (and remains so) – drenched in unfiltered,unmediated horror – that any thoughts of what will, could and should happen were pretty much absent.

The Today programme. Hey ho. Pretty major national coverage. A brief segment aired despite the lack of a no show by Jezza Hunt, Norman Lamb or any government official. The stench of doesn’t count hanging heavy in the air as ever. Thanks to Zoe Conway for running with the story despite this.

I was offline all day and came back to find that NHS England had appointed Stephen Bubb to head a “new group of experts and advisors to develop a guide for how to provide health and care for those with learning disabilities”. Bubb, who has the baffling role of Chief Executive of the Association of Chief Executive Organisations according to his blog biog (hahahahaha) wrote on his blog about this new role which seems to involve some responsibility for the Winterbourne JIP. This isn’t clear because he only reports on the first of three questions apparently asked of him by Simon Stevens, new head of NHS England.

Bubb’s blog made me wonder why the fuck NHS England had given him this gig. But who am I to comment on the Chief Executive of Chief Executives? A mother who wants (deserves) answers and accountability I suppose. So I’ll work through his post that I recommend read in full. [I won’t screengrab it because the sooner it disappears/is edited the better really].

So. From the top. “Inpatients” of ATUs don’t necessarily need “to be cared for by their families”. (And ditch ‘service user’).

It wasn’t “courageous” of Yawnman (sorry Norm, trying to continue to love ya but out of patience with the hands tied response) Lamb to suggest there should be serious consequences for the “Winterbourne abusers”.

“Simon Stevens was clear that only the third sector could deliver the promise and he wanted me to look at a plan for ‘co-commissioning between the NHS and my (?) members.” Eurgh really? Er, what is the promise? Does Simon Stevens know what has been attempted so far by the Winterbourne JIP? And what do you know about learning disabled people Bubbsey? “My members”?

It gets worse.

“I gathered my top provider members in learning disability for a breakfast to discuss our options. They were enthusiastic for the task. […] Mark Winter, my (?) multi-talented Head of Health Commissioning wrote up our Plan on the back of that breakfast.”

Tsk tsk Bill (and predecessors in the long and sorry story of Winterbourne failure). You clearly missed the secret brekkie meeting weapon.  And writing the Plan on the back of it. Foiled by the use of traditional means of note taking. Without hash browns or fresh OJ. Thank fuck for Bubbs and his creative thinking. One breakfast and sorted.

Joking aside. And it really ain’t a laughing matter. This ill (non?) informed man is apparently tasked (why? At what cost?) by the newly appointed head of NHS England to sort out the reduction of the numbers of people in ATUs and improve the lot healthcare of learning disabled people. With no apparent understanding, knowledge or experience of learning disabled people. And no apparent engagement with any learning disabled people or family members.

Have we bounced back a few decades?

“Of course with any such task [I seriously hope there ain’t many tasks like this Bubb] there will be a multitude of views and interests but I’ve been pleased so far [er, 30 seconds and the snaffling of a few croissants?] that we all seem to be on the side of sorting it out, and that means being client centred.”

The astonishing and gut wrenchingly depressing finale:

“We submitted the Plan and it was accepted.”

*tumbleweed*

Tomorrow I’ll be thinking about that long hot day, last summer. When we followed our beautiful boy in a red Routemaster coffin in a red Routemaster bus to the cemetery.

And I’ll try not to think too much about the layers of shite that have happened since.