Resistance stitching and the justice quilt

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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

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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

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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

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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.

The Sloven Dept of Managing Catastrophic Incidents

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No sniff of any answers to my questions to Katrina Percy. But, believe it or not, another invitation to meet with her through the Sloven twitter account. Yep. The Sloven twitter account that has blocked most #justiceforLB followers. [My brain melts at this action in the brave new world of transparency and openness but I suppose at least they seem to have ditched their ridiculous social media advice laboriously (and bizarrely) recounted to Monitor in their briefing about LB].

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We don’t want to meet Katrina Percy. It’s really offensive to keep asking us. Agent T reported back from a board meeting she attended in March that Simon Waugh, Chair of the Board, told KP firmly it was time to stop asking (pestering) us to meet. It could be construed as insensitive and in fitting with their agenda rather than ours. Er, yep. Spot on Mr Waugh.

Getting answers to our questions should not be conditional on meeting Katrina Percy. That would be really a shitty move. But then I suppose the unanswered questions point to an organisation that excels in shitty moves. And another fail for the Sloven Department of Managing Catastrophic Incidents and their consequences for Staff Family Members.

I’ll bung a copy to Simon Waugh tomorrow. He seems to have a bit of sense about him.

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.

Dear Katrina Percy,

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I was surprised to read your post at the NHS Leadership Academy – Leadership when the going gets tough – yesterday. Much of this post says little (with the customary dose of self promotion) but one section stood out;

So what have I learnt about leading when the going gets tough? Firstly, openness and transparency are fundamental when things go wrong.

I have to say the #justiceforLB shed heaved a sigh of relief reading this. (Virtually, as George remains ‘lost in action’ around wondrous Swedish lakes, and I was at home trying to ignore random pizza making involving hot dog crusts and melted grease proof paper).

A long old battle and all, but we’ve always prided ourselves on being reasonable and rational (as well as open and transparent). So, in the spirit of openness and transparency, and in no particular order, could you please respond to the following:

  • Can you explain why you did nothing about the state of the unit between LB’s death in July and the CQC inspection in September?
  • Can you explain why patients were not offered support to help them come to terms with LB’s death in the unit when staff were?
  • Can you explain what the phrase ‘Mum is known to the Trust’ means and why it was used in your SIRI documentation?
  • Can you provide a more convincing explanation of why your board minutes stated LB died of natural causes and all due process were followed, when he didn’t and they clearly weren’t?
  • Can you let us know what the situation is with staff disciplinary actions and whether you intend to refer any staff to their disciplinary bodies?
  • Can you explain why the process of staff disciplinary actions has taken over 14 months so far?
  • Can you explain why we had to fight so hard to get the final copy of the independent report into LB’s death published?
  • Can you un-redact and re-send the large set of blacked out documentation received as access to records requests?
  • Can you explain why you felt it necessary to construct a trolling/hacking issue around your employees twitter accounts and attribute this to me in a veiled statement to Monitor?
  • Can you provide evidence of the alleged account hacking of your staff?
  • Can you explain why you circulated an edited version of Trust communications/interactions with us to your Board members (and wider) which omitted a whole series of interactions, including those around bullying and sacking our advocate?
  • Can you provide a more convincing explanation for not disclosing the full set of LB’s records before February 2014 despite repeated requests by our solicitor from July 2013 onwards?
  • Can you explain the discrepancies between the minutes of Community Team Meetings we received and the set eventually received as part of the disclosure of records?
  • Can you explain how an independent investigation into deaths in your learning disability/mental health provision, commissioned by David Nicholson, was apparently concluded in June (according to your board minutes) when it hasn’t yet started?
  • Can you confirm that the ‘bath ban’ has been lifted at John Sharich House?
  • And finally, can you explain why you closely surveil our social media activity and yet listen to nothing that is said?

I look forward to hearing from you.

Sara

 

Drop the dead donkey

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More intense reading this week. The CQC inspection. Back in September. More evidence that LB’s death [howl] had the impact of slightly sour milk being poured down the sink. The Oxon Commissioning Group at a meeting in County Hall (less than 100 metres from where I’d just returned to work in September last year) minuted that STATT had been given a green light in January 2013 (due to the “positive engagement” with Sloven). Wow.

And then, a planned visit to the unit in the summer didn’t happen because of ‘the death of a service user in the unit’.

Wow.

A dead donkey.

The visit didn’t happen? After someone died there? Am I missing something?

The content of the CQC inspection of STATT needs no revisiting. Assessment and treatment had long gone (if ever present). It was a site of malaise and perceived bullying/overly process driven and ignorant/detached management. The spread of this toxic mixture was apparent in the observations of the inspection team. A damning and shameful account.

LB was kind of caught up in this. His death wasn’t a focus of the inspection. But he’s there. Part of the space, the story, the life (and death) of the unit. Epilepsy non-management, family non-involvement, non-choices and flaky capacity decisions. Hideous.

Sloven had waded in to bid for the Oxfordshire contract with a campaign worthy of whatever it cost. They talked the talk impressively enough to win the gig. KP filmed her message for Ridgeway. Then did little else and got caught out. Big time. Three failed CQC inspections in Oxfordshire in a matter of months. A complacency born of ‘too big to fail’ syndrome. A focus driven by sponds rather than patients.

Bizarrely, nothing has happened to the Sloves. They seem to be able to act without sanction (nonsensical redactions, undisclosed medical records, ongoing (into infinity) staff disciplinary procedures, letters sent to wrong recipients or dead patients, sacking advocates, veiled accusations of me trolling and hacking into their staff twitter accounts, blocking JusticeforLB supporters, etc etc etc).

In another set of heavily redacted emails I was sent yesterday, someone (redacted) emailed KP;

This is clearly a very painful period and one that is not made any easier by Sara Ryan’s unwillingness to engage with you. I feel you and your colleagues are continuing to deal with this in as sensitive and professional way as you possibly can

Are we living in a parallel universe? Here is a copy of the briefing they produced for Monitor. The world according to Sloven; 20140515094441957. It contains this note at the end:

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Accurately my arse. It seems impossible to understand how such high level professionals could mistake two completely different phrases which have completely different meaning. When did the police start deciding cause of death? And the police were conducting an investigation at that point (and still are) so the whole statement is a fabrication to try to wriggle out of such a damning response to LB’s death. In an official briefing document?

It should be a concern to everyone that something as serious as death [he died?] can be treated so carelessly or worse. Not to the Slovens though. In their May board minutes (page 16, item 7.7)  they proposed for closure the independent review, commissioned by NHS England, that is being undertaken into the deaths in their mental health/learning disability services since 2011. We asked for this review because we were concerned that the ‘natural cause’ label had been slapped on other patients in the past. And appreciated David Nicholson actioning it so straightforwardly.

It’s not Sloven’s review to close, as they then report in their June board minutes (and it certainly ain’t complete) but they are arrogant enough and, apparently, untouchable enough, to do and say what they like.

Astonishing. Are they living in an imaginary world? Is the Board complicit in this or completely in the dark? Are Monitor/the CQC/NHS England/Jezza Hunt/Norman Lamb, etc etc not concerned about their actions?

Why is any of this?

The Leavers’ prom

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It was LB’s Leavers’ prom when I was in Japan. All those years of waiting for the limo to turn up with the Leavers in it. Proud as punch. Some anxious at what lay ahead. The last prom LB went to was in July 2012, pretty much a year to the day he died. He was rocking cool as always. Pictured here with Maeve, the deputy head. ryan5-756

Charlie’s Angels weren’t going to stop him having his moment however. They invited us to come along to enjoy a celebration with them. Here’s the email Rich sent me later that evening;

It was a tough one but glad I went – really cool to see all the dudes having such fun and enjoying themselves. Really powerful when the limo arrived.
     Connor was so clearly absent and missed. But the Angels had put out (new) pictures of Connor and written comments from class mates and stuff on the benches in the car park – so he was there in spirit and ‘arrived’ with his peers.
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     We all went into a lovely little paddock adjacent to the hall and gathered round in a big circle (around the pictures and his classmates words) and then released two big bags full of balloons (in Eddie Stobbart colours). I cried. It was really moving and very sad. But also so full of love,  so much genuine love and feeling – so much more real than the worlds we often have to be in now. The balloons all went off high and close together – fantastically mixed in all sorts of colour formations until they went out of sight. None were caught in trees or any other obstacle.
    I stayed for about an hour, met the head teacher and made sure he knew how special, dedicated and wonderful his staff are and how much they have helped and supported us.
     I spoke to lots of people, some I knew, some I didn’t. Some remembered when Will and Owen came to the prom with Connor – which was cool – I have that great picture of Will, Connor and Matthew on my desk. Connor was in everyone’s hearts but in that special way that only he could be – light, fun and loving. He was the centre of the night but in such a great and positive way – just as he would have been if he could have been there in person.
     He is still shining so bright. It felt like his smile was just there for everyone. I know it’s not much but that smile is becoming more and more the way I remember him, the vision I hold of him – I loved that smile.

 

And a couple of the comments from his classmates:

Connor you were always a good friend to me. I have always enjoyed my time with you, we have been through a lot together over the years from archaeology club to Yenworthy. I learned a lot of interesting facts about buses and Eddie Stobart lorries from you. You were very funny with all the jokes you told me. I would always laugh at them because they were all so good! I miss you so much Connor. It is really different and sad without you here. Morgan.

I miss you Connor. Hope you had a good time. Liam

Thank you, as always, to the Angels. xxx