Johnny Rotten and the legitimacy of anger

Rich met me at the bus stop after work yesterday. I was feeling a bit low. We wandered home across the London Road.

“You seem a bit despondent…”
“Yeah. I am. Fed up with raging. And the continued shite that just doesn’t change. Not sure I can bear another year of being so angry... I’m weary of being constantly angry.”
“That’s what happens.”
“What?”
“People get worn out. They stop being angry. But it’s right to be angry. Anger drives a refusal to accept the low bar, the unacceptable. It drives action and critical engagement. Without it, issues are reduced to vague problems too easily dismissed.”
“Hmm…”
“Like Johnny Rotten said, anger is an energy…”

Minutes after getting in, an old mate turned unexpectedly. Her son a year or so older than LB. We had a catch up over mugs of tea and a chunk of Christmas cake. She filled me in on the horror that has been her family’s recent experiences of adult services. Not a pretty story. But it so rarely is. We reflected on the way in which 18+ years of loving and bringing up our kids (along with their sisters/brothers) can be summarily dismissed or problematised by health and social care (with the eye watering irony they offer nothing in its place). The misuse of power and erasure of love and more (the right words don’t exist) too often, just extraordinary.

Before she left, she said;

Do you remember when N and LB were young? And we were so optimistic about the future…

Blimey. I’d forgotten. We were. There was a group of us parents. A right old bunch of budding agitators/activists [just mums really…] All with kids the same sort of age. So utterly convinced we could change what we thought was an already changing world to create rightful space for our kids. To live the lives other people lived. I was shocked to remember this, and that I’d forgotten.

Later, one of LB’s school mates posted two photos on Facebook from years ago. LB was sitting among the small group of kids. He looked so chilled in one and smiling, as he saw the camera, in the other. It was clearly before the fake, fixed cheesy Wallace grin period which lasted a good year or so. Until my relentless photo taking became commonplace again.

Rich is right. Anger is necessary. Or you get sucked into the malaise that is the myriad words/excuses/bullshit/reviews and recommendations that health and social care bods endlessly come up with. Non existent change… what’s about to happen. And never does. At best, a kind of hope soup. That never leaves the kitchen. And feeds no one but the cook.

So 2017. Another year. With anger. And focus on brilliance. The remarkable. And humour. That rightful space is still there, somewhere. We just have to collectively, and persistently, nudge the crap out of the way. And never stop saying this is simply unacceptable.

bindmans

Bindman’s published their first ever annual review today.

The silent minority

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Awkward beginning to Tuesday. At the crack of dawn Rich and I sat on the BBC Breakfast sofa. 6am-ish. Twenty minutes (literally) after tipping out of bed. The CQC deaths review was published with failings in death investigations found across trusts. Findings of crap. The focus on learning disability and mental health lost in the review. The obvious next step to the Mazars review was to explore whether the discrimination it revealed was replicated across other trusts. The broader focus on all deaths in the CQC review obscured this focus. 

I had little to say on the sofa about the broader findings of the review. It’s shite. Of course it’s shite. And needs urgent attention. But urgent attention to the broader picture ain’t going to get anywhere near to addressing the (soft) eugenic practices happening in full view. (Another study last week reinforced the shocking premature mortality figures for learning disabled people.)

This was not the story the BBC were running with.

Luckily Rich (a political scientist) shone. And the second sofa slot/day of various news gigs became manageable with the intervention, via twitter, of a dedicated and passionate BBC fairy. And sensitive, thoughtful engagement with various people across the day.

In stark contrast to the review findings.

This stuff really ain’t rocket science.

The silent minority

Two weeks ago, during the final meeting of the CQC deaths review expert reference group, discussion was around the inclusion of mandatory investigation of the deaths of learning disabled people as a recommendation. It was clear that these deaths were simply not scrutinised. They were expected and accepted. Howl.

The final report had one recommendation relating to learning disability/mental health. Recommendation 4.

4

As recommendations go (in the unrelenting carousel of NHS reports) this must feature in the top three of all time ‘what the fuckwhattery?’ recommendations. An extraordinary leap from mandatory investigations to nothing. When I asked for clarification, the CQC said it meant ‘different parts of the health services need to work together to reduce the increased risk of premature death’. A year on from the Mazars review, further evidence of deep inequalities and worse within the NHS, and a recommendation we could have drummed up, at no cost, in seconds.

The words ‘missed opportunity’ just don’t work here. 

In 1952, because of the prevalence of certain deaths, the government set up the Confidential Inquiry in Maternal Deaths focusing on the deaths of women during and up to six weeks after childbirth. Supported by a range of experts, with clear, careful and methodological scrutiny, this inquiry has reduced the annual maternal death rate from 90 deaths in 100,000 to 10. Jeremy Hunt insists that the LeDeR programme based at Bristol University is performing this function. It’s not. It’s not designed to. Nor has the funding to. There is no effective scrutiny of these deaths. (Can you imagine?)

We’re left with incontrovertible evidence that certain, marginalised people die prematurely. That they are dismissed in death as well as life. That their deaths simply don’t count as important enough for serious review/scrutiny. This, in turn, means they will continue to die early.

The CQC decided on the recommendations in the review. And carefully spread the responsibility for ensuring these actually happen around various organisations. With no single point of oversight. Not a sensible model. Whatever spills out of the half arsed, ‘learning disability’ badged non actions that will be talked about, a decision was made to bury the real scandal here. In Recommendation 4.

The curious incident of the earlier death in the bath

In June 2006, HC, 57, died unexpectedly in the same bath that LB died in. Days after two ECT treatments he was unable to consent to. This emerged during LB’s inquest in October 2015. The coroner, who was clearly surprised to hear about the earlier death requested statements from the key three people involved in HC’s death.

  • The student nurse present in the bathroom

Once I had H supported I managed to pull my alarm, whilst at the same time shouting for assistance. At that point a member of nursing staff entered the bathroom, it was a female member of staff but I cannot recall who it was, simply due to how long ago this incident occurred. I can however recall that [nursing manager] followed that female in to the bathroom. It was approximately 10-15 seconds from H starting to have a seizure to other staff members joining me in the bathroom. By the time they arrived the water was drained and H was still in the bath and [nursing manager] told me to leave the room, which I promptly did. I understand that he did this purely because of my age and experience and he felt it was best to be away from what was happening to H. I did not see what happened next and never saw H again.

  • The nursing manager 

At the time of the incident I know I was not on the Unit.

Later in his statement he says:

I am not sure if I arrived there before Dr J or after but she went into the bathroom and assisted in trying to revive patient. I also cannot recall whether paramedics were already present when I arrived at the ward or whether they arrived after.

  • 3. Dr J (who phoned me the day LB died)

As the attending doctor, I pronounced HC dead.

Later in her statement she says:

On 29 June 2006, I received a phone call from the HM Coroner’s Office asking me if I was prepared to complete and signed the Part 1 of HC’s Death Certificate as I was the attending doctor at the time of his death. They called me again after 15 minutes and informed me that the HM Coroner was not going to ask for a postmortem examination and open an inquest. They informed me that HM Coroner would sign the Part II of the Death Certificate.

The 2014 Sloven ‘investigation’

Another Sloven psychiatrist was tasked with finding out more about HC’s death in 2014. He wrote to the Sloven Clinical Director on March 25 stating:

[Dr J] confirmed that there had been a death some years before Dr M’s appointment. [Dr J] relayed that the circumstances were different in some respects to the epilepsy related death last summer, but similar in that an inpatient on STATT had a seizure in the bath. An attempt at resus followed but it was complicated by the difficulty staff had extricating the man from the bath. He died soon after.

On May 13, the Sloven ‘inquiry’ concluded:

As this was an unexpected death of an NHS inpatient it was reported as a SIRI. There is no evidence of an RCA being undertaken. The Coroner had pronounced the death as natural causes.

This is how you erase a life and a death in full view. Particular lives and deaths. Those that don’t count.

We need to talk about Mencap

The CQC published a chilling review of a Mencap run ‘service’, Precinct Road in Hillingdon, on Friday. Yep. Mencap. Documenting so much so wrong I can’t summarise it here. A series of human wrongs.

This went under the radar until Mark Neary came across it this morning and started to tweet about it.  A teeny tiny (anti) press release was eventually published later today stating very woodenly;

Mencap takes very seriously any requirements and recommendations on how to improve the quality of support we provide. After a recent CQC inspection of Precinct Road in Middlesex we have apologised fully to the people we support and their families.

We have taken immediate steps and great care to fully address the actions outlined by the CQC’s requirements and recommendations. Our procedures and environment at Precinct Road have improved as a result.

Mencap is committed to ensuring that we offer the highest quality care to enable people with a learning disability to live the lives they choose to live.

This was missing the hallmarks of a typical Mencap press release; speed and a grandiose statement by the Chief Exec – usually in cahoots with the CEO of the Challenging Behaviour Foundation – ‘calling upon the government’ to do diddly squat. (Ensuring their continued seats at any table, breakfast or otherwise, where endless, pointless but costly discussions about the provision of services can be chewed over a doughnut or ten). Oh, and no link to the CQC report. Breathtaking.

I’m left thinking… Mencap (or Menace as my autocorrect keeps calling them):

  • How could you possibly be required to improve the services you provide given you are the (self proclaimed) ‘leading voice of learning disability’? With the £b?/millions you have at hand?
  • Why did it take a CQC report to make you act at Precinct Road when it’s clear from the CQC report that the problems identified were apparent for several months?
  • Why have you only apologised to the four people who ‘live’ at Precinct Road and their families? Surely you should issue a wider apology. To all those you ‘support’ and those who fundraise and volunteer for you?
  • How you can possibly say you are committed to ensuring you offer the highest quality care to enable people with a learning disability to live the lives they choose to live… when you don’t?
  • And finally. Are you a provider or a campaigning charity? Because you clearly can’t be both.

Those blinking ‘models of disability’ again

I was going to do some work today. I’m on leave till Jan 5th but have a chunklet of work to catch up with. This is something I didn’t really have before. Not because I’m great but because I just did my work. More of an obedience type thing really. These days I have a hell of lot of other stuff to engage/deal with. On top of ‘work’. Another consequence. Another thing on the pile of ‘now life is like this’.

But I didn’t get round to working. I stayed in bed for ages, got up and just didn’t want to. Christmas was a pretty agonising experience. And I felt knackered. This evening I caught up with some reading. Recent disability related articles. This was a bit of a treat really. Some right old tasty morsels. Though a lot of returning to the distinction between medical/social models of disability. [Medical model: disability is an individual, tragic thing to be cured, social model: it’s to do with the organisation/structure of society rather than an individual problem].

I got to thinking about the Verita investigation into LB’s death. This (excellent) report was kind of something and then, in many ways, nothing. It clearly stated that LB’s death was preventable [howl] and carefully laid out the reasons why. But nothing has actually happened as an outcome. And the micro details remain largely unremarked upon.

Ironically, having spent most of my postgraduate learning immersed in disability studies, what happened to LB, and what is detailed in this report, kind of turns the medical/social distinction upside down. The health professionals involved collectively denied that LB was having seizures. Despite his diagnosis of epilepsy and me stating that he was having increasing seizure activity. They kicked out the individual impairment argument.

Why? Why would you do that?

  1. They were simply crap?
  2. They couldn’t give a shit?
  3. They were arrogant enough to make pronouncements based on, er, fuck all?

I don’t know (though I suspect it could have been a combination of the three).

I fail to understand how anyone with (any) medical training, would argue that someone with a history of epilepsy (hard won but ‘granted’ eventually) was not experiencing seizures. Why would you? For what reason? For what outcome?

He died.

‘Calling on’ and Calderstones

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…] 

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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.

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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.

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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.

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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.

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Timidity and the Yellow Brick Road

Been chewing over stuff this week, given the pre-inquest review (howl), launch of the Bubb report, accompanying media coverage and commentary. (See Chris Hatton, Matthew Smith and Rob Greig and ace coverage by Saba Salman on her blog and in the Guardian.) It was also the CQC 3 Lives* follow up meeting.

Relentlessly unchallenged crap practice and helplessness consistently crop up. We know that ATUs/some supported living settings are spaces that leave human rights on the doorstep. Containing people for years in hideous ways the public only find out about when something goes wrong. Those in the know know, of course. The frontline staff delivering nosh, medication and often little else, clinicians signing forms, local authorities/commissioners/NHS England shelling out small fortunes, and tribunal members. They all know. We all know really. But only give it some thought when the next catastrophic event crops up.

And then what happens? Talk, as always. Lengthy, wordy, jargon filled reports and meetings with the same old suspects, many of whom have screaming conflicts of interest. 

I had a quick shufty at a couple of charity accounts this morning. Again, a whole PhD to be had exposing the pomp and self congratulation around commitment and involvement to the Winterbourne Concordat by various organisation in the past coupla years. Quick to grab their moment in the brief sunshine of planet Concordat.  I wonder how many charities will record in the 2014 accounts that it was an almighty failure. And their commitment amounted to, er, nothing.

In among my rambling, exhausted thoughts, timidity kept cropping up. And that bloody lion in The Wizard of Oz. Tom was in a school performance of this a couple of years ago. LB, generally a big fan of any type of production and extravaganza, took offence to the constant repetition of the chorus.

“Not that fucking yellow brick road AGAIN!!!” he roared. Before Rich took him home in the interval.

Timidity is a kind way of characterising all I see, hear and read around learning disability provision these days. Timidity underpinned variously by:

    • a lack of understanding of how to make change/what to do
    • a lack of interest/commitment
    • incompetence
    • conflicts of interest
    • concerns about self preservation/future career paths

Well timidity, for whatever reason, is going to change fuck all. And until people with some influence and power grow some, we might as well all give up, creep back to our respective holes and get on with the lives we are lucky enough (or otherwise) to have.

I’ve always thought LB was saying exactly what most people in that packed, hot hall thought that evening. He was just fearless enough to say it.

*Lisa is now shopping weekly at Tescos and been to Matalan.

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:
ritz

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?

Justicequilt-9

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