Death, decision aids and tears by the Spree

image (13)I’ve been in Berlin at a workshop about evidence based medicine, narratives and decision aids for the last couple of days. This involved discussions around what ‘scientific’ (cough cough) evidence tells us, the stories people tell about their experiences and resources (decision aids) produced to help guide people through various treatment options. (Decision aids are largely for when options are evenly balanced in terms of pros and cons and are designed to help people make decisions based on what’s important to them). There’s a bit of an issue around using stories in decision aids because people’s experiences are more persuasive than numbers and we don’t know why or how they ‘work’. Interestingly 84% of decision aids include stories which makes some in the decision aid world a bit uneasy.

A newish (well nearly two years now) work hazard involves how to deal with questions about children from newly acquainted colleagues. This is tricky for all sorts of reasons. Do I tell or don’t I? Do I discount LB for the sake of an even interaction [NOOOOO] or tell which is, in any circumstances, a bit of an interactional bomb.

twitter chat 2

I’d already learned that if you avoid mention of death straight away in the kid conversations you can open yourself up to further questions that almost inevitably lead to having to say, retrospectively, ‘Er, well actually LB died’, and that’s just off the scale of awkward.

twitter chat 3

The context of LB’s death makes this all the more complex. A set of ingredients, no chef and no recipe. And different utensils, weighing scales and oven. Each time. A consistent and continual recipe for (interactional) disaster.

I came a bit of a cropper with this question on a trip to the States last year when, after 18 hours of (delayed) travelling and a substantial time difference, it cropped up unexpectedly in a wonderfully atmospheric Madison beer house. I couldn’t think what to say, became (literally) tongue tied and crumbled.

This week, it was a beautiful spring evening. The small group of us were walking along the bank of the river Spree in twos and threes. The person I was walking with had been a doula so it was almost inevitable that the question would crop up. It was cool. We chatted about LB and other stuff. When I was asked again later by a someone else, I said ‘Four now, used to be five’. There was a moments pause and then we carried on with other talk.

I was pretty chuffed about this and chittered away on twitter with various people later. The following evening the workshop had finished and three of us were left in the restaurant. Both women had young children and conversation turned to kids and safety. Letting them walk home alone and general protective ‘mum’ stuff. I don’t know how to describe the physical sensations I experienced, sitting in a public place, with images of shadowing LB every moment he was outside pinging around my head. Careful and carefree memories. Baby steps on slides and hilarious escalator moments. No hint of the darkness to come. It was like every piece of my body wanted to run in a different direction as my brain slowly disintegrated.

We left the restaurant and headed back to the hotel. One woman put her arm through mine, gave me a squeeze and said that seemed to have been a bit close to home. Tears by the Spree. We went to the hotel bar, drank beer, talked about LB, cried a bit more and had a bloody good laugh.

There is no answer to what to do. Maybe there should be an interactional decision aid for bereaved families (joking). But I was struck by Nick’s comment on whether it gets easier over time.

twitter chat

I think he might be right.

[And because I think stories are essential in helping people to make sense of things, I’ll shamelessly plug Healthtalk.org which has collections about families experiences of traumatic death and suicide.]

State agents and lives on hold

Justicequilt-128

22 months since LB died. 14 months since the Verita report found his death was preventable. And this week we heard through an unofficial (and plucky) source that staff disciplinary action resulted in (allegedly), er, no action. Yep. Apparently the preventable death of a young dude, a CQC inspection bad enough to remove the enamel off your teeth and no action. There were a few other hand grenades lobbed at us this week (as usual) so not the brightest of times. There’s nothing quite like taking on publicly funded bodies/state agents.

[Some essential skills/capabilities: nerves of steel, humour, dogged determination, resilience, disregard for rules, attention to detail, expertise in wading through shite, reasonable communication skills, and the hide of a rhino. Luckily these skills are dispersed among JusticeforLB campaigners spreading the load and generating a collective (joyous) force for good.]

Justicequilt-129So where are we at, on the accountability front…? In no particular order:

1. Verita 2 (broader investigation into the local, regional and national context around LB’s death): findings are being shared in a stakeholder group early May. Report should be published before July 4 2015. Jointly commissioned by NHS England and Oxfordshire Adult Safeguarding Board.

2. Mazars death review (investigating all deaths in Sloven learning disability and mental health provision since 2011). Report should be published before July 4 2015. Commissioned by NHS England

3. Police and HSE investigation. Ongoing. We expect an update at the third pre-inquest review meeting on May 19.

Justicequilt-1304. Staff referral to disciplinary council. Ongoing. Expect an update in the next month or so.

5. The inquest. Currently due to be held on October 5 with two weeks set aside. Issues around witnesses, etc, are to be thrashed out on May 19. The date is subject to change depending on the outcome of the police/HSE investigation.

Wow.

Just wow.

22 months. What a crappy, shocking and sad journey. Lives on hold in an unspeakably distressing space. Offset by the remarkable light generated by #JusticeforLB. We’re on #107days part 2 and the magic continues. Not the daily, wondrous spectacle of last year but we have treatlets lined up that are off the scale of brilliance. Seriously.

Thankfully.

Collusion, delusion and constructing myths

Over a week now since the Oxfordshire County Council ‘independent review’ into LB’s death hit my inbox. Without warning. Since the awkward, slippery discussion with the Deputy Director of social care silence has again again descended on County Towers.

There’s a dog eared copy of the review by my computer. Well it’s not really a review. More 21 pages of typed words that have made me feel quite ill. A second state body acting in an explicitly self serving and systemically toxic way. Apparent sole concern; reputation safeguarding. Negating our experience and creating myths around what happened. OCC present LB’s death as largely due to a series of flaky decisions/non action by me.

The level of fabrication about what happened, is chilling. I’ve got an ‘intentional? No surely not… must be incompetence…’ loop in my head trying to make sense of this review. Then the fact LB died crashes in. [He died?] Followed by ‘these are public bodies… NHS? County Council?’ The world spins. There is no sense.

I’m haunted by the power that’s become so blinking visible through Sloven and OCC actions (and the equivalent non action by other publicly funded bodies that you’d think would intervene).

We live in an evidence based age and this OCC review has the stamp of ‘authority’ from, er, OCC. Independent Case Review: CS (dob. 17.11.94-d. 04.07.13) is a document that can be shared with all sorts of people/organisations across time. It’s already shared with Verita and apparently will be heading the coroner’s way. I’ve been told publicly by the coroner to stick to facts not opinion at the inquest. There is no question that any ‘official documentation’ given to the coroner might be a bit flaky. Publicly funded bodies have teflon coating and headed notepaper that guarantee ‘truth’ and legitimacy.

I haven’t gone through the review, line by line for factual inaccuracies. It’s too depressing, distressing and I work full time. But dipping in, randomly, the howlingly biased framing makes my brain weep. I’m portrayed as the never never; never doing this that and the other. OCC staff are the always and forevers. Staff member X returned from annual leave and “started work to bring professionals together to look at how CS could return to life in the community” (April 10th). Cue the Dambusters theme.

There’s no sniff of any scrutiny of the findings. Or basic reflection about them. Not by anyone; the ‘independent’ reviewer, the shiny new Deputy Director (who allegedly added an additional layer of quality assurance), other readers or the Director who signed it off and then pinged it, out of the blue, into my inbox.

No one seemed to stop and think;

‘Er, erm. Hang on a minute, Quite a few things don’t stack up here. I mean was his mum really ignoring all advice in an obvious crisis situation as this review suggests? Why would she? I don’t understand. Didn’t this set alarm bells ringing for staff? There seem to be a lot of questions for me. For instance why would it take X three months from April 10th to organise a meeting to bring professionals together? That’s a long time for a young laddy to be locked away. Should he have really been in there? I mean, if nothing else, this provision cost £3500 per week. And did we have permission to share his health and social care records without his family’s permission? Why weren’t his family involved?’

Nope. No one spoke up.

And no one seems to have asked the obvious question: ‘A young dude died here. We all know he should be alive. What the fuck went wrong?’

Stinky Pete, Chunky Stan and bunches of greenery

Worlds are colliding as Chunky Stan has developed mouth/breath/forehead smells that, close up, are kind of revolting but which I find oddly comforting. A strange mix of delicious and foul. I wonder if you’re tossed into a space of grief, preventable death, no accountability and regular demonstrations of beyond shite actions by public bodies you grew up relying on/taking for granted, your sense of smell is compromised. Making Stan’s smell strangely fragrant.

Years ago, on a random, overland truck trip organised through a Time Out ad, detailed in early, carefree [sob] pages of this blog, I went to a tannery in Morocco. The smell was seriously rank. A group of US tourists there at the same time had their faces permanently stuffed into handfuls of greenery. Creating a mint balaclava type effect.

It seems like many people/organisations involved/implicated in what happened to LB (Nico Reed, Stephanie Bincliffe, Lisa, Thomas Rawnsley and countless others…) continue to stuff bunches of greenery in their faces. Trying to erase/avoid/ignore/dilute the stench that rises from everything we’re shining a spotlight on.

At the same time, many people/organisations are smelling the smells with us. With collective joyousness and celebration. This is bloody brilliant.

walks of life

justice quiltI don’t know how we’ll negotiate the stench of what’s happened and what lies ahead. During #107days (Year 2) we’re anticipating the outcome of various investigations. I’m not optimistic to be honest. Optimistic for what? LB died a preventable death. We all know that.  A report clearly stating this was published over a year ago. Nothing has happened in response.

I suppose I’ll keep hugging Stan, embrace his smelly smells and hope that those involved/implicated chuck their (pointless) mint bouquets in the nearest bin and do the right thing.

 

Farcical inaccuracies

It turns out that now OCC have published this report without our knowledge, and shared it with at least one external organisation, I’m expected to go through all 21 pages and highlight the factual inaccuracies contained within it. [Warning: the report apparently took 8 months to publish because the new Deputy Director of Social Care wanted it to be as robust as possible and added quality assurance. Hard hat time for those who need services in Oxon.]

Can you imagine wading through old emails from a time when your son was still alive [he died?] to correct a report you didn’t know was being written? In your own time? Serious brain melt. How much was matey boy paid to write this rubbish I wonder.

Deep breath.

Here’s just one example around respite. (I don’t think OCC can seriously expect me to keep this confidential in the circumstances). The report is so biased it’s almost comedic. Definitive statements about my ‘failings’ (without evidence) throughout but light touch on OCC on any dodgy ground. The ‘it appears from the records’ consistently falls on the side of the council with no consideration the records might be a little bit partial.

crap report 3

crap1

Not quite what happened. As the email exchange below demonstrates. I waited in all day for the three of them to turn up. The care manager eventually called to say she wouldn’t be able to come round after all. She’d run out of time. Bit of a shocker really in the circumstances. During that call she described the respite centre as a building with a snooker table and made it a completely unappealing option.

crap report2

More mysterious reporting about respite here:

crap1

In contrast, from my blog, 18 March 2013:

crap 1

And from March 19th…

crap6

How can the records possibly show “I did not take up the offer”? It’s just made up rubbish leading to one of the cracking conclusions:

crap report 2

Ah. It was all my fault. Trial by a ridiculous, crap and biased report. I’ll leave you with one more nonsensical snippet while I crawl off and wonder what the hell is going on.

crap report1

Postscript: It would not be possible to rebut a lot of this stuff without having documented the experience on the pages of this blog. So important to keep detailed notes. And so blinking wrong.

Farcical inaccuracies

It turns out that now OCC have published this report without our knowledge, and shared it with at least one external organisation, I’m expected to go through all 21 pages and highlight the factual inaccuracies contained within it. [Warning: the report apparently took 8 months to publish because the new Deputy Director of Social Care wanted it to be as “robust as possible” and “added quality assurance”. Hard hat time for those who need services in Oxon.]

Can you imagine wading through old emails from a time when your son was still alive [he died?] to correct a report you didn’t know was being written? In your own time? Serious brain melt. How much was matey boy paid to write this rubbish I wonder.

Deep breath.

(I don’t think OCC can seriously expect me to keep this confidential in the circumstances). The report is so biased it’s almost comedic. Definitive statements about my ‘failings’ (without evidence) throughout but light touch on OCC on any dodgy ground. Here’s just one example around the issue of respite.

crap report 3

crap1

Not quite what happened. As the email exchange below demonstrates. I waited in all day for the three of them to turn up. The care manager eventually called to say she wouldn’t be able to come round after all. She’d run out of time. Bit of a shocker really in the circumstances. And one of those things that didn’t ‘appear in the records’. During that call she described the respite centre as a building with a snooker table and made it a completely unappealing option.

crap report2

More mysterious reporting about respite here:

crap1

In contrast, from my blog, 18 March 2013:

crap 1

And from March 19th…

crap6

How can the records possibly show “I did not take up the offer”? The records are incomplete. This incompleteness is a failing on the part of OCC but instead leads to this conclusion:

crap report 2

Ah. It was all my fault. Trial by a ridiculous, crap and biased report. Three “in my views’ in this particular conclusion. How can you possibly have a view that excludes us from the process and relies on partial record keeping?

I’ll leave you with one more nonsensical snippet while I crawl off and wonder what the hell is going on.

crap report1

It was LB’s fault too.

Postscript: It would not be possible to rebut a lot of this stuff without having documented the experience on the pages of this blog. So important to keep detailed notes. And so blinking wrong.

Meeting Tyrone

I bumped into Tyrone this morning in Cornmarket. Tyrone is a couple of years older than LB and is member of My Life My Choice. He was going to catch the no. 6 bus to Wolvercote to the day centre (that used to be near Sainsburys in Cowley).

“What do you do at the day centre, Tyrone?”
“Snooker. Play on the Wii if it’s out. Or just chill.”
“I can remember taking LB to Parasol there.”
“Yeah. I used to go to Parasol but I gave it up because I got too old. LB would be too old to go to Parasol now.”
“Yeah.”

We stood at the traffic lights by Debenhams. My bus was waiting. After vague indecision I sort of coaxed Tyrone across the road alongside me despite the red light.

“Sorry Tyrone, I always tell my kids they gotta wait for the green man…” I said once on the safe side.

“Don’t worry,” replied Tyrone. “I do that if my bus is there.”

Oxon Classy Council

Here’s the gig. I get to work this morning and receive an email from the Director of Adult Services, Oxfordshire County Council (OCC). It turns out they commissioned an independent review into LB’s death last year. And, for some reason, he’s decided to send it to us today.

Eh?

The email ends: As you know this report was undertaken and will be shared as part of a confidential investigation.  I would ask you to respect the confidential status of the report.  If you need to share the contents to third parties (other than your immediate family) then you should seek our written confirmation.

Eh?

It turns out they handed over LB’s health and social care records, without our knowledge, to a social care consultant.

He then interviewed various people, including LB’s teacher, before writing a report so riddled with inaccuracies and bias (the usual we did great, mum is unreliable/flaky rubbish) you might as well chuck it in the nearest skip. But then of course they won’t. It has already been shared with Verita and it will be given to the coroner among other people.

I can’t describe really what it’s like to find out that an independent review has been conducted into your dead son’s care without you knowing. Surely that’s the baseline of respect? That it details things like your kids’ dates of birth, and includes stuff like “SR cancelled the meeting”, when I didn’t, or “SR advised to contact the respite centre at Saxon Way. The records show that SR did not take up the offer”, when I did, but omits things like mentioning that the staff member who suddenly upped her game on the communication front did so because she was under supervision after we’d complained about the service.

Typical OCC slippery shite.

I spoke to the Deputy Director this afternoon who first denied sharing records despite the report stating: “Methodology: I have reviewed all the records held by the local authority for both Children’s and Adult’s Services…I have also reviewed copies of the Health Service RIO notes from 11 Jan to 19 March 2013 for the psychology and psychiatry service…””) and then suggested the reviewer was internal at that point because they were paying him. Astonishing. Howl inducing. How can people say and do such hideous things? He died.

By the way, OCC (and Sloven), if your strategy is to grind us down until we either slope off in despair or are destroyed, this was a cracking move.

Are you allowed to conduct an independent review of “the support that had been offered to LB and his family” without informing us?

Are you allowed to share LB’s notes with an external person without our permission?

What happens now an inaccurate report is being circulated?

A day trip to the people’s museum

I took the JusticeforLB quilt (or people’s artwork) to the People’s History Museum in Manchester today. An outing like no other. It’s going to be on exhibition there from 1-22 April.

Quilt responsibility is a pretty big gig.

Justicequilt-115

I set off with a good dose of fear this morning. This ain’t a bad thing. Cab to station. Deep breath. Biggest fear was forgetting the quilt. I waited for the train down platform from the typical chunk of passengers in a curiously quiet and peaceful spot in the sunshine. Nearly missing the train by absorption in our response to the Public Administration Select Committee stuff around NHS safety stuff. I got on board, timed the electronic doors to perfection and was allowed to sit in first class. Cross Country trains deserve a big shout out for this.

Justicequilt-116I was able to get a shedload (haha) of work done with the quilt safely above me and no (apparent) quilt peril opportunities for three hours. Malcolm, offering various treats over that time, gave me a cup of coffee and piece of cake and we got chatting. Turned out he used to work as an agency support worker at a learning disability unit. They had a staff ratio of 2 nurses/ 2 support workers to around 25 patients.

“Five patients and four staff? I don’t understand it. NHS? I think the NHS is great, don’t get me wrong, but… four staff and five patients?”

We said goodbye at Manchester and I went to get some cash out. With some giggling, the woman behind me held the quilt while I got my wallet out.

“Am I going to end up on one of those TV shows?” she laughed, balancing it carefully across her arms.

A station cleaner joined in asking what the quilt was. He too was as shocked as Malcolm when I told him.

“When I think about what people moan about…” he said. Shaking his head. “I mean I moan about money. But this…”

He took a postcard to show his wife.

Justicequilt-117At the museum I was taken down to the quarantine room. The person I was supposed to meet was in another part of Manchester because of a flood.

“A flood?” Gulp.

I left the quilt in the quarantine room after serious protestations of quilt care and carefully tucking the quilt smarts provided by Janet Read, chief quilter, on a memory stick with a lovely large Paddington Bear style luggage label inside the plastic covering.  I met various staff members in a place that just exudes people’s history. This is such a good venue for LB. Stan has always been ‘dog of the people’ and LB a history hound.

Just before I left there was mention of freezing the quilt.  Freezing? Oh boy. [Sorry Janet]. Frozen and freezing kept bouncing around my frazzled mind, including the Frozen cinema showing organised by Yellow Submarine tomorrow and our half arsed watching of Fortitude.

More reassurance from cheeky chappy guide on the way back upstairs. Frozen schmozen. Freezing is common museum practice. He asked me about the quilt.

“Wow.” He said. Visibly shocked. “That’s just shoddy.”

I headed back to the station. Then realised I lost my wallet. Eurgh. I retraced my steps and found it on what looks like the freezer in the quarantine room.

On the train back, later, I bumped into Malcolm again.

“Good luck with your case”, said he said, “I’ll look out for it”.Justicequilt-118

A sunshine and daffodil day

Day 6 of #107days again. Though we’re not really counting the individual days this time. That was last years extravaganza. And we would never want, or even hope really, to recreate such a spontaneous, unscripted, joyous and collective celebration. Taking awesome to new levels.

I couldn’t look back at what I’d written much about LB’s time in the unit this time last year. Even though we’d vaguely talked about filling #107days with these posts (we had no idea it would become such a phenomenon that we’d be splitting days between two or three people/organisations by the end.) Today I revisited the Day 6 post. Not sure how to describe what it feels to read such naive, misplaced optimism knowing what we now know.

day 6

Baseline assessment? Get LB active again? I had no idea that I was in the process of writing an account starkly capturing the continuing shiteness of provision for learning disabled people, despite the Winterbourne View meithering, at the time.  What I heard that day was a reiteration of how the unit had been described to us a few days earlier. A place in which patients are assessed, ‘treated’, while being encouraged to lead their everyday lives from the unit. School + ‘baseline assessments’ sounded bloody brilliant in the circumstances.

A sunshine and daffodil day.

The daffs are out again. Some things don’t change. And the magic of #107days bubbles below the surface. Thank fuck. We’re asking people to let us know what being involved in the campaign (in whatever way) has meant to them. Early responses have already brought tears, laughter and cheer to the Justice Shed. An antidote to the relentless justice path we’re tramping. Thank you.