Todays #justiceforLB advent dedicated to older parents got me thinking. Why don’t the main charities involved in the work around closing ATUs sign up to a ‘ditch the bullshit’ model?  The Winterbourne Concordat in its various guises achieved nothing. Stephen Bubb and his brekkie chums achieved nothing. This week yet another CQC inspection found brutal and inhumane practices at Calderstones NHS Foundation Trust. [Sharp tweeters picked up instantly that Calderstones actually bid for the Ridgeway but were pipped at the post by Sloven, both miles from Oxford…] 

That this latest CQC report barely reached the British media is no surprise. But it did generate a Guardian piece from the holders of learning disability wellbeing in the UK; Mencap and the Challenging Behaviour Foundation. Now I have no doubt that both organisations provide invaluable services/support for families/learning disabled people but I increasingly think the bland and repetitive statements that they trot out, relating to Winterbourne type stuff, do worse than achieve nothing (I’ve added a list of selected lowlights at the end of this post). 

[Oh my fucking gawd.. what is she doing in the Crimmy break criticising Mencap/CBF???

Bear with me. These organisations shouldn’t be above challenge and should really encourage it…]

I have three particular issues with their latest missive which characterise their typical offerings.

1. The positioning of these organisations as having some particular expertise/knowledge that no one else/organisation has. This is nonsense and I don’t think charities should big themselves up.

2. The framing of this latest travesty as a ‘sharp reminder’. No ‘sharp reminder’ can possibly be necessary given the list of atrocities that have occurred and to suggest it is, kind of hints that some question remains about this.

3. Meaningless, throwaway statements.  Most people have probably never given this a thought. Many are probably unaware that such barbaric provision exists in this country. And I’m sure many couldn’t give a stuff. And it must be that many of those involved in current provision (either providing the care or commissioning it) think people are receiving ‘good care and support’ (for them).

Given the high profile of M/CBF, and the almost impossibility of getting any coverage of learning disability related issues in the national media, wasting opportunities to raise awareness about the latest shite exposed with such nothingness is off the scale of unacceptable. There is a consistent lack of understanding, information and making connections in M/CBF missives in this area that means they completely fail to pack a punch (or do anything really). Dunno why, given the resources they have to play with.

It wouldn’t have taken much, for example, to go back and see that Calderstones was actually under a Monitor enforcement notice after abuse was uncovered in 2013. The Trust was forced to take action and had a management change in December 2013. This makes the findings in this latest CQC report (the inspection was conducted this summer) even more horrific. And makes the bland engagement and nonsense knowledge claims by the key charities in this area even more unpalatable.

So how about ditching the bullshit and spin. Stop releasing press limpments ‘calling (urgently)’ for this, that and the other. And actually do something.

What you are doing at the mo clearly ain’t working.

A bizarre bit of journalism popped up in the Sunday Times last weekend. About Lisa who was locked in a room for 9 years in an assessment and treatment unit (ATU) until she was ‘discovered’ by the Challenging Behaviour Foundation (CBF) ‘expert by experience’ on a CQC inspection. Much is made of the role of the CBF in this short piece. Not sure we need Viv Cooper, CBF CEO, to point out this is ‘deeply concerning and shocking’. It’s also a bit bizarre that the Sunday Times ‘can reveal’ this horrific story when it was published by the CQC last summer in their 3 Lives report.

But that ain’t all on the bizarre menu.

The story moves on to discuss Stephanie Bincliffe who died in an ATU (privately run by the Huntercombe Group) aged 25 and weighing almost 26 stone. Her inquest is ongoing. Why someone who died [died] and is (well should be) currently ‘news’ is mentioned after Lisa (who should have been but never was) is baffling.

But that ain’t all that is baffling.

Other than The Sunday Times, there has been no media coverage of Stephanie Bincliffe’s death despite the inquest being a public event. She was locked in a room for seven years (like Lisa). The Sunday Times reports:

Two women. Two rooms. And media interest worthy of a local break-in in a disused warehouse in a disused retail park (earmarked for building a new, large scale, residential facility for learning disabled people perceived to be bothersome).

I can’t stop thinking about Lisa and Stephanie. I’ve really struggled with LB’s 107 days in STATT. 107 days. Howl. I battered Rich’s ear yesterday trying to remember what holidays we had in the 9 years before LB died. How could someone be locked in a room for years? In a health unit supposed to treat and assess? Howl.

Both Lisa and Stephanie had their ‘care’ commissioned. Both were sectioned which should involve a whole raft of built in processes/checks/regulation. Involving health and social care professionals and commissioners.

When I first heard Lisa’s chilling story at the CQC event back in February, David Harling who talked about it, used a photo to illustrate what a suite at the Ritz (or some other swanky London hotel) looked like at a cost of £12,600 per week.

I’ve googled and found this little baby for comparison:

The money is irrelevant in many ways. We’re talking people’s lives. But it isn’t. The story woven around these bothersome patients who need ‘care packages’ so off the scale of expensive must involve collusion across a whole range of health and social professionals/NHS/private providers. £12,600 a week? Really?

And, ironically, the real cost of the (anti) care provided (a bit of hatch opening, pill pushing, hair brushing from a distance and a staffing ratio of .001? to 1) costs fuck all.

It stinks of a win win situation financially for the provider (NHS or private). A level of ignorance on the part of commissioners. A further battered health/social care budget for learning disability provision and a complete lack of care or interest across the board.

People who have committed no crime but are such a menace that locking them up for years is ok, even when they, er, die. Aged 25.

Moving quickly on because there really ain’t nothing to see in this room….

What role do key charities (in this case  those originally set up by families to improve the lives of their kids) actually play? And what do they actually do? And why?

Tumbleweed.

Or worse. Clearly.

It was the My Life My Choice AGM this afternoon. It was dedicated to LB and the theme was happiness and laughter. It kicked off with a bit of spontaneous dancing to Will Pharrell’s Happiness. I ain’t a spontaneous dancer in any way but what a cracking way to start an AGM (or any meeting). There followed a series of ‘official’ (dosh and voting new trustees) and informal (laughing yoga and chatting about highlights of the year) bits. For a lengthy meeting, the organisation/design was exceptional.

I had a slot in which I gave a brief update about #justiceforLB and the ways in which MLMC had worked with/supported us. I forgot to copy my slides onto my memory stick but it didn’t matter. They’ve been so consistently supportive it was easy to recount the many examples.

There were refreshments and party poppers. New trustees were voted in. Disappointment among unsuccessful candidates managed by similarly disappointed candidates or the new geezers.

I live tweeted bits of the meeting. Michael ‘the Godfather’ Edwards was there. I was a bit in awe really. I remember reading an article about him years ago in a Sunday mag. How, in our local day centre, he spent his days sorting something like nails into different boxes. If they finished sorting before the end of the day (mid afternoon) the boxes were emptied back into the pile for re-sorting.

This story stayed with me. An almighty howl of frustration. LB was a pup at the time. I was determined he wouldn’t lead a stripped out, colourless, pointless life.

Michael was the ‘celebrity’ in the room. Held in warm respect. A lot of young dudes from the local college were present for part of the meeting. Some fidgeting and nudging. Some eye rolling.They chipped in. A student was voted one of the new trustees.

There were very few ‘professionals’ present. I googled the Michael Edwards article when I got home. It was from 2001. I was surprised it was so recent. Jan Walmsley was there today. As she was in 2001.

A piece of my heart broke a tiny bit more.

Yesterday Mark Neary flagged up concern about shared overnight care in warehouse type facilities. Responses to his post can be read at the #LBBill facebook page.

To summarise, it sounds like a cheap gig is being created through the sharing of ‘night’ care by local authorities/providers. Groups of people who are supposed to have support workers can be put to bed sharpish of an evening, leaving one support worker and ‘assistive technology’ on the nightshift (9pm-7am). Assistive technology can be alarmed doors to alert the (dozy TV watching?) night shift herb that an inmate is on the move. (This reminds me a little bit of the experience of my mate’s son.) Strikes me a bit dodgy that this technology can be increasingly (without question) used to surveil, monitor and constrain the movements of learning disabled people to reduce costs/workloads, while any mention of surveillance equipment to protect people from abuse is shot down in a fury of privacy arguments. (Bit of an aside, but I’m still flummoxed as to why we’re still banging on about post-Winterbourne when so many other abuses have happened since and LB died..(he died?) Is it the power of video footage or just another containment exercise?)

Most of us have some say in when we decide to watch the tv, have some nosh, go out, hang out or go to bed. It’s, er, part of being human. Bedding people down by 9pm (and probably much earlier in practice – again, see mate’s story above) for cost and containment reasons is surely breaching their human rights? And goes hand in hand with the shutting down (or more accurately, never opening up) of any sniff of opportunity, aspiration and imagination.

With LB’s death, the sledgehammer of fear no longer hangs over us. We no longer have to worry about how he will lead a (most optimistic scenario) basic life in the context of poor support, budgets cuts and a system which doesn’t recognise the humanity of people like him. And that terrible, terrible fear of what will happen to him when we ain’t around anymore. The worst thing imaginable has happened. In a context that will never ever make any sense to us.

I’m left now, outside this circle of fear, wondering what the fuck is going on? Why are we discussing proposed changes post this/post the other when the beacon that is independent supported living seems to be morphing into a mechanism for managing people on the cheap? An update today on the Bubb report (sigh) talks about new buildings and a (sinister) skills academy. No doubt with hefty contracts for state of the art assistive technology. The potential for this technology to replace the human in the context of learning disability provision is enormous. And menacing. Social interaction (in a diverse range of forms) is central to being human. Removing that from an already socially impoverished group has terrible implications.

I can’t help seeing a future where people reside in the community with empty lives, increasingly monitored by technology. With cost as the central motivation for stripping away their humanity even further.

Anyone know when person centred dropped off the table?

This is what everyday life looks like for many people. How have we got it so wrong?

Apologies for such a long, cumbersome post title. Psychiatry is one of those disciplines that seems to have an entrenched need to bolster its armoury in weighty words because it ain’t really clear what it does. Their learning disability conference… in Birmingham yesterday and today. (#idconf on twitter).

It all seemed to grind to halt on social media when the panel of Alan Rosenbach, Dominic Slowie, Gavin Harding, ‘A Roy and SMcClinton’ took to the stage this afternoon. A mild twitter fanfare. And then tumbleweed.

@psychiatryofid limped on with less enthusiastic tweeting. (“Fewer members in the audience after lunch, but some strongly-held views #idconf”).

And then bailed out.

Ouch.
What unpopular and controversial statements could Alan Rosenbach have possibly made?

These uncontroversial and sensible statements apparently:

I agree with these points and the sentiment underpinning Alan R’s response. And applaud him – and other panel members who may have spoken up but were twitter censored – for making them.

Though I do wonder why psychiatrists hold this power over learning disabled people (a wonder reinforced by the #idconf twitter feed).

Our experience of psychiatrists in the six months before LB died (he died???) was lamentable (no words really) and the story of Lisa (detailed in the 3 Lives Report) continues to send chills down my spine.

I’m left wondering what ‘ID psychiatry’ does, apart from  things like measuring digit span and concluding “understanding behavioural phenotypes has huge clinical and social implications.”

Maybe there needs to be a bit more of a radical rethink about ‘who is responsible for whom’. And what this actually means in practice.