At least two rooms without a view

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:
Stephanie B

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:
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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.

The AGM, the Godfather and happiness

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.

MLMC

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.

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A piece of my heart broke a tiny bit more.

Need, night and utter shite

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?

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

Ye olde Faculty Psychiatry of Intellectual Disability Annual Conference

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

These uncontroversial and sensible statements apparently:

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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.

The jangling of keys

Years ago I worked as a waitress in a Beefeater restaurant. Not a great experience but one of many not great working experiences. The manager was a complete arsewipe. Arrogant and bullying.  And he marched around with an enormous set of keys jangling from his belt.

I was always struck by his keys. He couldn’t possibly need to unlock so many locked things.  And they were menacing. Even though I thought he was a tosspot.

This evening I was sent a copy of a review of the unit LB was in, conducted in November/December 2012. This review is, as anyone following this foul and harrowing tale of inhumanity, a depressing and telling read. Shining more light on the beyond inexcusably shameful practices inflicted on learning disabled people in the UK. It includes the statement ‘The jangling of keys was commented on by several people’.

Deep, deep breath. That several people commented on the key jangling fills me with horror. A nasty, bullying, hideous action. And in this context, behind locked doors. Powerlessness.

How much horror happens in learning disability provision? [Howl]

It’s too late to say much about this ‘report’ right now. I’ll just present a taster.

statt reviewI just want to reiterate what I tweeted earlier with the luxury of more words.

  • Can health or social care professionals working with learning disabled people think about what they allow to pass as acceptable ‘care’?
  • Can relevant organisations (providers, commissioners, local authorities) stop batting the responsibility ball back and forth, apparently carelessly, and simply do something?
  • Can anyone – author, colleague, administrator, committee member, trustee, observer, partner, friend, whoever – who sees a report which reports inhumane practice just say so?

Reading this report, I wouldn’t take Chunky Stan or Bess anywhere near STATT.

Heartbreaking.

When I was a kid…

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..we lived by the sea in Southend. High tide, the pier, cockle sheds, pen pals, taking photographs with a kodak camera, and a background soundtrack of the Carpenters, Simon and Garfunkel. And Jacques Loussier, or Jack Brewscheeya as Rich called him, years later when we saw him perform with my mum and dad.

I can remember thinking about growing up a lot as a kid. There was a kind of sky’s the limit type framing to this. And a reasonable grasp of my limitations. I tossed out ‘tennis champ’ (sob) after a couple of humiliating wipe outs at a local summer competition. Artist went when I was disappointedly mediocre in art lessons. Writing? Hmmm. My diary excerpts speak for themselves. But I still had a big old world to dabble in. And mess around with.

I don’t know what LB thought about his future. Other than it featured a beautiful girlfriend and world domination on the ConnorCo front. We never found a way of talking about this properly. Partly because there was no apparent time limit on it. Just banter type stuff. Constrained by the consistent fight/concern about and experience of micro, nonsensical support over the years. Four hours ‘respite’ a month for about ten years. A focus that pushed what mattered to the nether regions. The lack of effective support offered by services a dominating and wearing part of everyday life.

LB didn’t have the luxury I had of options at his age. Of anything really. His ‘adult life’ (all six months of it) was firmly and fiercely mapped and inscribed in terms of indicative budgets, resources and allocations. His potential – artist, entrepreneur, litter picker, caretaker, comedian, model, whatever – was never acknowledged, recognised or even thought about (except by us). And once he kicked out at this non life, it was game over really. The flimsy, poorly resourced, beyond rigid and ignorant world of ‘support’ laid bare.

imageThat he died (he died?) is so raw, so extreme, so I don’t know how to make sense of it. But, at the same time, it focuses attention and underlines how completely shite things for young dudes like him. In 1971, the government published Better Services for the Mentally Handicapped. 43 years later, we are still getting it so wrong for so many.

Astonishing. Heartbreaking. And so fucking unnecessary. Those ‘better services’ have continued to erase all humanity, thought, celebration, aspiration, recognition of skills, abilities, talents and strengths off the board. Leaving a deficit based metal box of jargon, tick boxes and cost cutting. With no real choice or control. Classy.

What a fucking shambles

Jane Cummings has responded to Bubbgate today. Turns out the Plan isn’t a Plan after all. Well not one that says ‘We’re going to do a, b, c and d’. Eh? She rapidly counteracts Bubb’s posturings. One by one. Awkwardness on awkwardness. Has someone hacked the world?

So continuing with the complete failure of anything Winterbourne, we’ve now had the wastefulness of Bubb’s play breakfast meeting in which fuck all was achieved other than capturing in the headlights the CEOs of the big charities who should know better.

How could you sit round that table?

How could you?

Meanwhile Jan Tregelles is working the room, trying to pick off various vocal tweeters and schmooze them in private. More fucking awkwardness. Or maybe just typical spin action. Just out of interest Jan, where were you when LB died? No sniff of getting in touch then. I despise this action aligned with self interest that completely ignores the pain and suffering of LB and countless others, and their families.

It’s time this mess was brought out from behind closed doors and dealt with openly, transparently, and with learning disabled people and families on an equal footing. In a Bubb free setting.  It’s clear, given we’re three years on now from the Concordat fanfare, you don’t have a bloody clue. None of you. And if you did, LB would be travelling in that limo right now, heading for his leavers prom. Enjoying his turn on the red carpet.

I’ve had enough. I don’t want to feel such utter and abject pain anymore partly because a bunch of overpaid, overly self important and ultimately ignorant people can’t stop performing, prevaricating and spinning such complete bullshit.

You make me sick.

Weaving, ducking and diving

Just a few rambling thoughts about the latest news, schmooze and misery to emerge this week. On Saturday news broke (in the most low key news breaking way possible) of alleged ‘bullying’ at a small residential school for learning disabled children run by a provider, MacIntyre, in Wales. Saba Salman provides a summary of this story here. Abuse Bullying at any provision for learning disabled people, particularly children, you’d think would be ‘news’ post Winterbourne.

Particularly if the CEO of the provider involved is the new lead of the Winterbourne Joint Improvement Programme (JIP). But the link wasn’t made.

NHS England also published the latest dismal stats/update around the JIP. No words really. I suspect some of the people involved must be looking back and thinking “Why the fuck did we call ourselves a concordat?”

Good intentions I’m sure at the heart of this group/concordat. At the same time I’m getting a bit uncomfortable about the constant waving of the ‘Winterbourne’ flag. Particularly given the abuse and neglect identified at STATT, Piggy Lane, Evenlode and now Womaston (the latter run by a very respected provider). Consistently referring back to one particular moment among so many is a bit self defeating really. I say this without wanting in any way to detract/play down the utter horror experienced by the patients/families at Winterbourne View.

The link between Bill Mumford and the school was made on twitter on Sunday. Today he issued a heartfelt personal statement; Doing the right thing. Action has clearly been taken, the police are involved, etc etc etc. Etc with bells on.

What’s the problem with this?

Well this really:

Bill Mumford

And what this means.

And?

How long does it take to approve a personal statement about abuse discovered in March? By a concordat who, er, have seemingly achieved little else? In a timely fashion, the JIP approved the statement two days after it almost became news.

I’m confused/alarmed about the ‘power of the process’ in instances of horror involving state organisations to keep things secret. What we could and couldn’t (and can’t) say about LB’s experiences seems to be mediated by the spectre of various processes that lie ahead (the police investigation/the inquest). What this really means is a bit of a mystery really.

Now that BBC Wales has reported the allegations at Womaston, the publishing of statements by MacIntyre and Bill Mumford suggest that the secrecy aspect is a little bit contrived.

Another interpretation to the above is that there was a bit of (explicit or implicit) wishful/hopeful thinking that the link between Bill and the school wouldn’t be made. That a bit of abuse bullying at a small school in Wales would be largely ignored by the media. Not an outlandish wish in the circumstances. Again, quite possibly with the ‘best intentions’ in line with concordat aspirations. Not rocking a rocky boat and all that.

A third interpretation is that the workings of top level dealings in this area are so infused with incompetence that reaction rather than action is the norm. The old procrastination model.

I don’t know which of the above fits the Bill, if any. But I hope, if I was anything to do with a concordat (sigh), and/or head of a leading light provider and abuse bullying happened on my patch, I’d shout from the rooftops about it. To alert the whole shebang (people, families, commissioners, providers, NHS England, local authorities, social workers, teachers, support workers, clinicians, health professionals, whoever) that this shite happens. And if it can happen in my blinking state of the art (in the context) organisation, it could happen in yours.

It’s time to cut the crap, whatever shape that takes. These are people’s lives we’re talking about.

Models of disability and ‘real’ epilepsy

Having some serious ‘what’s the point of a lot of academic research (my own right up there with a few others) thoughts at the mo, particularly given the wealth of research around learning disability provision. We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK. Yes, there are pockets of good and brilliant stuff (anecdotally, largely where some cracking person or group of people have got together to just do something.) But overall, it’s pretty crap or worse.

Yesterday, this was tweeted by Chris Hatton…

costs

Whoa. Really? Really???

Half a £billion a year? For being warehoused, out of sight, on the edge of towns. Restrained, subject to abuse or other acts of violence and neglected.  Half a billion???

The Winterbourne Concordat (sigh) aimed to get people pretty much out of these hell holes by June 1st. The outrage generated by the original Panorama expose of abuse has clearly lost any welly. People have moved on, learning disability really ain’t sexy and no one with any influence is prepared to do anything. (I’m losing count of the people who mention how well we’ve done to get the publicity/momentum we have on #107days… It’s like trying to crawl out of a 30 metre deep mud pit with some cocktail sticks and a cotton reel).

Today Rich and I had a ten minute revisiting what happened to LB (various versions of this happen several or more times a day… typically underpinned by despair, disbelief, rage, intense sadness and inevitably tears). Today we focused on the consultants involved who, in their wisdom, decided to ignore, pretend or insist that LB didn’t have ‘real’ epilepsy and wasn’t having increasing seizure activity.

(This reminds me of a conversation with someone who said (after LB’s death) that she worked with children with epilepsy who had “proper seizures”.) Eh? LB was ‘medically’, ‘officially’, and about as blinking properly as you can be, diagnosed with epilepsy. (Eventually). Numerous people, us, his teachers, paramedics and A&E staff witnessed him having seizures. I’ve never seen anyone having a seizure before and I saw him having various types of seizure include tonic clonic which really is in your face seizure activity. He had epilepsy.

His sensitivity to changing medication was also known and recorded. The consultants at the unit were told that he was having increasing seizure activity, by people who knew him better than anyone. And yet they sat in a meeting two weeks before he drowned in the bath and decided he wasn’t.

In a unit costing around £3500 a week.

In some ways the cost is completely irrelevant. We’re talking about the life of a young dude who had only just nudged into ‘adulthood’. But at the same time, the enormous cost of these places contrasted to what’s actually delivered speaks volumes about the ambivalence and (maybe fear?) attached to people like LB. The cost of keeping em penned away from the rest of us is paid. Seemingly indefinitely. Seemingly without question. Even when the extent of the atrocities that happen in these spaces are known about.

And any aspect of their lives, including clear, pretty straightforward medical issues can be ignored. The ‘learning disability’ trumps all.

The disability (studies) movement in the UK has been caught in circular discussions/debates/disagreements and revisiting distinctions between social and medical models of disability for years now. Pretty tedious and dusty really. But what’s astonishing, and illuminating, is that the medical profession denied LB the right to be epileptic. They denied him his medical label.

They denied him his right to be epileptic. Because they couldn’t see beyond his ‘difference’. And this, ultimately, denied him his right to life.

Anyone got a copy of the Hippocratic Oath handy?

 

Helsinki Sunday

I was given/awarded? earned? a ‘one off payment’ after filling in a carers assessment form. Wow. A brief letter asked for my bank details to transfer the money. Wow. I picked myself off the floor and decided to tag an extra day on to my Finnish work trip. A day and night in Helsinki. A carers break.

It was fab, fun and sunny.

Today I got a letter from the County Council asking for confirmation that the money has been spent in line with the scheme. Eh? The scheme? With receipts.

Oh.

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