Rich and I went to the All Party Parliamentary Group on Learning Disability this afternoon in the Houses of P. Reporting on progress from Winterbourne View. Lord Rix chaired. Phil spoke movingly about his young son Josh being so far from home. Hazel Watson from NHS England talked about what was being done (as ever, being done, rather than done) about closing assessment and treatment units (ATUs). Viv Cooper from the Challenging Behaviour pulled up the Winterbourne Joint Improvement Programme for non-action across three years. The Executive Director from the LGA (who?) said words. I was reminded of washing LB’s hair. Water bouncing off with none penetrating his thick and unruly mop. Words. Bouncy bits of water. Doing nothing.

I stopped listening and thought about bath times.

Norman Lamb, Minister of State for Support and Care talked the talk. Passionately engaged with trying to get people out of ATUs. What are the obstacles Norm?

1. Absence of information about who is in them. [in hand]
2. A lack of senior people in NHS England responsible for the programme. [changed since March with Jane Cummings/Hazel Watson taking responsibility]
3. A reliance on psychiatrists making clinical judgements about placements when they are paid by the service providers. [brain melt]
4. Problems around funding and funding flows. [an apparently insolvable problem]
5. An ingrained culture in which learning disabled people aren’t seen as equal citizens. [It’s up to all of us to change this one].

Ok. We know the issues. What’s going to happen? Er, fuck all by the sounds of it. Norm has his hands tied apparently. Hugely frustrating n’ all, but those local clinical commissioning groups/local authorities are a plinking law to themselves (paraphrasing a bit here). There are no local services to support the release of people. People aren’t released because a) containment is a cash cow for providers and b) local authorities can’t suddenly stump up the costs for newly released people.

Eh? Sorry Norm, but if you can’t do anything to change things, who can?

*tumbleweed*

In the room were a largish group of parents. A group of parents who, between them, had enough atrocity stories to sink a battleship of pointless talk and no action. And that’s without chucking in the fact that LB died [he died?]. In the small amount of time left for questions, completely harrowing experiences were lobbed at the panel in Committee Room 4. Overlooking the Thames and the London Eye. Each story should (and would) have led to criminal proceedings if they had occurred outside ATUs. Stories of abuse/assault/neglect and fear. Against people who are not listened to or able to fight back.

This being a British affair, the atrocity stories were comfortably absorbed without visible shaking of etiquette. LB’s death even popped up in the discussion as something unspeakable but at the same time, a little bit of a ‘fable’. A work in progress version of a horrific event acknowledged but, at the same time, written out of the landscape. Our dude has made it to the parliamentary table, but with a particular coating. A ‘move on and thankfully not mainstream news’ coating.

We went to the pub. And chewed over next steps with Mencap and the Challenging Behaviour Foundation. A shared recognition of the scandalous/untenable position that is.

Yep. And?

After the last couple of miserable, raging posts, here’s a snifter of sunshine, light and colour. #107days continues to be extraordinary. A truly unique campaign. Fundraising is a go go. We’re ticking off some of the items on the Connor Manifesto which is amazing. The tender is out for the Serious Case Review, jointly commissioned by NHS England and Oxfordshire Adult Safeguarding Board. This has a broad remit, to add to and extend the Verita findings. The terms of reference for the review into unexpected deaths in Sloven learning disability and mental health services are being decided at the mo. And the police are conducting a full investigation. Our lovely CID guy called with the news yesterday. LB would be seriously delighted with this decision. His belief in the criminal justice system undented.

Finally, Landscape for a Sparrowhawk, by the remarkable Janet Read (started on the train on the way to LB’s funeral that hot summer’s day last July) is now above the fireplace in our front room.

The spirit and essence of our beautiful dude woven into our lives in so many ways.

Had a full on week, last week. Monday, the Partnership Steering Group’s one day conference at Manchester University, Day 82, #107days. An event shared and chaired by learning disabled people throughout. Tuesday, a meeting with our MP, Andrew Smith, and Deborah Coles from INQUEST. Wednesday evening, Rich and I hung out with young people at a group run by My Life My Choice and Parasol. They wanted to talk about LB. Anger, rage, disbelief and bafflement that he was left to bath unsupervised.

Friday, the Cardiff Law School’s conference, Deprivation of Liberty Procedures (Safeguards for whom?), at the Law Society. LB’s artwork illustrated the flyer and Paul Bowen, QC, dedicated his paper to #107days. The bar (sorry) preventing the involvement, engagement and recognition of learning disabled people as full citizens is clearly under assault.

That morning, I  walked from the hotel to the Law Society and realised within minutes I was going to pass LB’s favourite shop of all time. One of the spaces that anchored London as his favourite city and his longstanding desire to ‘be a Londoner Mum’. Model Zone. At the far end of Oxford Street. Model Zone. Where LB would carefully snap the wing mirrors off thoughtfully selected, hugely expensive, limited edition die cast coaches before leaving the shop. With an audience of gawpers. He’d learned over time, and a shedload of distress, that these would break at some point and found a way of managing that moment of inevitability.

I instantly got that now familiar feeling of part primal howl, part panic attack, instant blurred vision and countering internal steeling of ‘deep.breath.deep.breath…’

MZ was shut. Boarded up and being redeveloped.

Eh?

Closed?

……? When? How?

I googled it on my ipad in a nearby doorway. They went bust days before LB died.

[???] …

Walking on to Chancery Lane, I carefully removed the wing mirrors as LB learned to do over time. Model Zone was shut. A piece of his childhood gone. A space we shared and enjoyed. Better it was shut than experiencing the pain of seeing punters carrying on die cast model life without the quirky young dude who broke all the rules of die cast model ownership. With care.