A social media affair

ryan5-26Mid afternoon yesterday an unnamed person turned up at work, managed to find our office, handed over a memory stick, read out the password for me to unencrypt (disencrypt?) the files on it, checked they could be opened, got me to sign a letter and left. All very secret squirrel.

I was left with three heaving PDFs. Communications from Oxfordshire County Council and Clinical Commissioning Group mentioning me and/or LB between March 2013 to 27 July 2014.

I’ve only glanced through this stuff. Hundreds of pages. So just wanted to jot down my initial thoughts. In no particular order. And ignoring the stuff of ongoing police investigations.

There is pretty much no recognition/acknowledgement or reflection a young man died and he shouldn’t have done. No surprise now really. It’s largely about blame, self protection, reputation and process.

The pages are littered with mentions of ‘mum’. Please ditch the ‘mum’ stuff. It’s so blinking patronising and degrading.

The records start in September 2013. A six month chunk is missing. More carelessness or incompetence (or worse). Either way, not acceptable. Simply unacceptable.

Redactions are reasonable. Mostly names and occasional small sections of text blacked out.

Hints of sensible thought are present which is refreshing. Reflections that the findings of the Verita report are awful and media coverage can only be negative, for example.

A stand out thing is surveillance. There are transcripts of the Phil Gayle show (in which the Gman shines through with his piercing questions) and twitter, this blog were a constant source of discussion and even information. Rich’s ‘Move on down the Bus’ song was circulated among the CCG. One commissioning bod found out about the ‘bath ban’ on these pages. (For info, apparently it was instigated by a ‘nervous’ consultant and was lifted on the day of the CQC inspection… Any news on the staff disciplinary actions I wonder?)

I tweeted yesterday that I was beginning to understand the viewing figures of this blog. It must be bookmarked across Sloven Towers, the local authority and CCG. And, I suppose, other organisations outside of Oxfordshire who may be following with a mix of fascination at the complete shiteness of the whole situation and relief that they ain’t involved/implicated.

Of course it doesn’t have to be surveillance. Social media has created a space that offers health/social care professionals alternative ways of gaining insight into the experiences of people/patients. And the consequences of their actions and the systems that underpin them. One or two people in these exchanges seem to get that.

Diminished societies and donations

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.

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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.

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

Yep. Couldn’t agree more.

Activism, academia and more quilt delight

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It was the Disability Studies Conference at Lancaster University this week and LB featured pretty centrally. I gave my first presentation at the inaugural conference back in 2003 when I was a PhD pup. And LB was a bouncy 8 year old still wearing his ELC police tabard and orange binoculars.

ryan5-44LB’s bus picture featured on the conference signs/abstract book, delegates were given LB Justice quilt postcards and the quilt itself was officially launched (the story of the quilt can be read here).
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The now legendary Chris Hatton said a few words at the launch (bit of a tissue jobby) and Mark Sherry (yep, Mark who made the #107days film from Toledo) read the approved resolution of the Society for the Study of Social Problems that relates to LB’s death. Such a remarkable happening. Solidarity from such an unexpected quarter and yet so blinking spot on. LB’s death is a social problem. A public issue.

Jack’s mum, Gina, brought some more of Jack’s cats to sell for the fund and he raised over £100. All material used in making the cats is recycled other than the felt.
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There were also LB notebooks made by our lovely neighbour, Ruth, which went down a treat.
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It was a dynamic, energetic, creative and emotional space. I know it always has been a cracking conference but the unfailing commitment/action of Hannah Morgan to create this focus on LB/the campaign and weave (sorry) it into the texture of the event was exceptional.

Activism and academia.

And the quilt is just bloody amazing.
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Learned helplessness my arse

The term ‘learned helplessness’ was new to me a few weeks ago. I still don’t know what it means. Other than a random excuse for the paucity of good care on offer at Slade House site (now known as chunkypoundland until the intricacies of potential land sales, profit taking and the like are laid bare).

The story of LB’s death and the subsequent damning CQC inspection (which Rich, barely containing his ire at the pre-Crimean levels of care identified regularly mutters ‘They found faeces on a chair?’) is documented in this blog. I recently acquired the quality review report that took place in November/December 2012. Four months before LB went into the unit. An internal inspection organised by the local authority/clinical commissioning group to make sure they were buying services fit for purpose.

It ain’t a pretty read.

What is astonishing is that the reviewer mentions clear concerns but didn’t mark them as actionable. And reader/s of the report obviously did nothing. The bar of what is acceptable is set so low I can’t help coming back to the ‘if this had been a dog home’ type thoughts. And they don’t see it. This isn’t learned helplessness, it’s ignorance. There’s no thought to what it must be like to experience living in the place. No reflection on the absolute powerlessness of the patients. Their ability to communicate hammered by medication dished out liberally, or crushed by brutality experienced at the hands of heavies in the name of ‘restraint’. And the possible/probable  distancing of families.

I know this blog is used in teaching health/social care students, but for those of you who have been working in this area for a long old time now, particularly if your job involves reading and responding to quality reviews (in a clean, warm, comfortable and safe environment, sitting cosily on a shedload of power/influence), here’s a quicky quiz to help you reflect on the level of your bar.

Based on a hypothetical quality review report. Just to mix it up at bit, let’s imagine that the provision is known to have problems and was recently acquired by an out of county Trust (one of those too big to fail jobbies).

    • The design, decor and under utilisation of areas are identified as ‘specific problems’ and ‘too cold and clinical’. Do you a) do nothing b) act?
    • Patients report that noise and other behaviours disturb them, make them uncomfortable and at times scare them. Do you a) do nothing b) act?
    • Feedback suggests that discharge from the service has been variable. Do you a) do nothing b) act?
    • It isn’t clear that patients are receiving therapies from their records, but the reviewer was ‘informed’ they do. Do you a) do nothing b) act?
    • Feedback from patients and observations on the ward suggest that activities are minimal within the unit. Do you a) do nothing b) act?
    • Observations show that staffing levels cause delays in allowing patients to be able to leave the unit for agreed periods of time. Do you a) do nothing b) act?

Quick totting up of scores: a = 0 points  b = 1

If you scored between:

0-1: back out of health or social care now. Do not pass Go.

2-3: you should take a long hard look at yourself and give your working practice  some full on critical reflection. Perhaps spend time in the provision you commission. Hang out with the patients and learn that they are actually, er, human, just like you. Oh and dust off your copy of the Mental Capacity Act and reacquaint yourself with basic human rights principles while you’re at it.

4-5: Ok. Follow above advice, keep following up on actions and make sure this focus doesn’t fall by the wayside.

6: Good on yer.

 

One final point. Almost funny but isn’t. Because none of this is. In the minutes/reports available online for this period, everyone (Sloves, CCG, LA)  dutifully report their Winterbourne JIP related actions. In detail. The same people, I assume who read and ignored the content of a report that provided clear indications (albeit couched in a flimflam language of ‘we were informed that stuff was happening’ even though it clearly wasn’t) that there were serious issues around what was being described as ‘care’ in ChunkyPoundland. Er, how does that work?

The level of blinkered stupidity is astounding. And we really should stop with the obsessive focus on Winterbourne View. It really ain’t helpful and I suspect may have created more harm than good at ground level in some places.

Resistance stitching and the justice quilt

A full on first day back at work on tuesday. Back to back meetings.  A bit of nipping back and forth from the office to the train station in late summer sunshine. I was beetling back there later in the afternoon to meet Janet Read who was bringing LB’s justice quilt. On the way I had a message to ring the Coroner’s office…

The quilt.

Wow. Wow.

How to describe LB’s justice quilt/The People’s Art Work?

Impossible to coherently comment on such an explosion of * action * thought * love * creativity * skill * artisanship * activism * artistry * celebration *  collectivity * humour * brilliance * colour * feeling * commentary * commitment * resistance * buses * determination * delight * wonder * optimism * life * LB * Dudes *

It’s just extraordinary. A sneaky peek at two sections:

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…. …. Wow.

Deep, intense richness. Resistance, empowerment, action, solidarity.  Things that should be. Things that should never, ever, be. I don’t know. It’s off the scale of brilliance.

The quilters – Janet Read, Janis Firminger, Margaret Taylor and Jean Draper –  are stitching legends. So much thoughtfulness, skill, creativity, work, dedication and commitment (and I hope fun) contributing to the production of this unforgettably beautiful artwork. It completely captures the random, chaotic, beyond unwanted, ‘stitched in the moment’ social movement that has emerged in response to LB’s death.

Thanks to everyone who produced a patch, from tots to Mrs S in her eighties. My lovely niece Ally Rogers deserves special mention for her memories of her quirky and beyond loved cousin.

The quilt will be launched at the Disability Studies Conference next week. What happens to it after then will be decided, celebrated and shared at #107days. A space that continues to generate positivity and awesomeness.

And the Coroner’s office call? Eclipsed. Tossed to one side for now.

Sunshine and shade

Back from a week in the sunshine. Have to eat my (sun) hat on this one. Rich sourced the holiday through Teletext. Yep. Teletext. As clunky as in their television heyday but, if you can grit your teeth, ignore the blue website, and the need to pick up the phone to book howl, there are cracking holiday bargains to be had.

While we were away, news broke about the closure of the Slade House site. Not news to us. Not because Sloven keep us informed of developments relating to LB. Tsk. Don’t be silly. We only get that ‘right’ if we meet with the CEO face to face. But ‘news’ all the same. Coated with classic Sloven nonsense about ‘definitely closing it but we will be consulting with, er, patients, families, etc…’ (If nothing else, this whole miserable and beyond sad story is putting the spotlight on how meaningless so much talk is, in overly bureaucratic, jargon laden, and ultimately fake and shallow, profit driven (dominated?) organisations).

On the subject of dosh/profit (or whatever it is), it’s probably timely to include an image of the ‘buildings’ that are being closed and apparently leased or sold on the Slade House site. Because we ain’t really talking about a building or two here. We’re talking about a tasty old prime chunk of land (just) within the Oxford ring road.  Sandwiched between an Oxford Brookes hall of residence and a housing estate. Just across the road from Currys, where I went and bought LB a mobile DVD player to watch his beloved films/boxsets the day after he went into the unit.

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The closure (subject to ‘consultation’) of the Slade House site raises some fairly weighty questions about ‘good care’, responsibility, provision, support, loss (life and aspiration), profit and what happens when a ‘too big to fail’ NHS Foundation Trust, takes over, pretty much ignores, and then closes a failing service in a different county.

And who cares?

Private troubles and public issues

Not a brilliant week in some ways. We were kind of pole-axed by the letter from Katrina Percy in response to questions raised here. Rich was at Fulham with Tom and Owen on Wednesday evening when we received the email from Charlotte, our solicitor. The day before they received GCSE results (and both did brilliantly, love em). I was at home.

I don’t want to say much about the letter and luckily I don’t need to. George Julian has written a careful and thorough commentary in three parts, starting here. Grannie Wise made a welcome return to blogging about it.

For us, fourteen months after LB died, and having been on the receiving end of the shite detailed laboriously on these pages, this response to a very straightforward set of questions (which really should never have to be asked in the first place) was a pounding too far. I felt sick on and off for the next couple of days.

I recently gave a talk in which I thought about private troubles and public issues, terms used by American sociologist C.Wright Mills. I argued that while the grief we were experiencing (and would likely continue to experience for our lifetimes) was a private trouble, LB’s death was a public issue. His death was an issue that should concern us all. It underlines how society perceives people like him to be not fully human.

In the letter, Katrina Percy was very much framing what had happened as a private trouble. Her trust had done absolutely everything right and we were just a nuisance. Even down to her insistence that questions would only be answered in a face to face setting. The most micro level. Meanwhile, over in the States, the annual conference of The society for Social Problems (SSSP) was taking place. The SSSP ‘is a diverse sociological community for scholars, activists, and practitioners, committed to social justice’. Mark Sherry, whose students made such a remarkable contribution to #107days, was at the conference and proposed a resolution around what had happened to LB.

(‘SSSP resolutions constitute an important opportunity for our scholar-activist membership to publicly declare their sentiments, thereby creating a channel for greater visibility and more direct influence upon a variety of “publics,” i.e., fellow activists, scholars, students, decision-makers, social action groups, voters, and others.’)

Yesterday morning I got this message from Mark on facebook;

Sara, there were hundreds of people involved in motion. It went to a Directors (or Chairs) meeting, before it went to the general assembly. There were some minor ammendments, and people wanted elaboration, but it eventually passed unanimously. I was very moved, I left that session close to tears. There are good people in the world. I will scan it and send the entire resolution to you. But the massive outcome is this: “Be it further resolved that SSSP add a special session at our next conference in honor of Connor Sparrowhawk. The session will ensure that the issue continues to be discussed into the following year, with scholars examining the social problem further.”

A very public issue. And enormous thanks to Mark and the SSSP.

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.