Didcot station and the heatwave

I spent quite a bit of time at Didcot station in the last couple of days. Heatwave, potential hazards (buckling lines) and the like. A minor rail travel meltdown. The Pumpkin fridge and air-con in Coach F on First Great Western succumbed to the great British bake off. This afternoon I was hanging out on platform 3 again with a colleague after interviewing a mother about her pregnancy/birth experiences in Somerset.

Thinking about LB.

I think about him all the time. He sort of fills every space, every crack in everyday life and more. I think about him at home and work. But these are punctuated thoughts. Open to distraction. Family, work, a meeting, an interview. A talk to prepare or article to review/write. These can interrupt the thinking. Sitting on a platform, with no train in sight, was clear space.

Just before the train arrived, a woman came and sat down next to us on the platform. I sort of recognised her, in a fuggy and heat ridden way. Any clarity beaten out of me by the day. It turned out she had taken part in my PhD research. She’d found out six months ago that ‘LB was your LB’ (different surnames) and wanted to get in touch. She didn’t know what to say (because there ain’t really an awful lot to say).

Her daughter has had a pretty shite time with serious unrecognised health issues in ‘independently supported’ living.

We had an odd/sad/funny exchange on the hot, slow journey back to Oxford reminiscing about those days. Days that were a mix of carefree, constraint and concern for our kids.

‘I don’t suppose you’ve still got that diary I wrote?’ she asked.

“Yeah, I’ll dig it out for you”, I said.

Ethics was less of a deal back then.

#107days again… Er, really?

Naive beyond naivety. We were pitched into a completely devastating, toxic, harrowing and obscene space/journey on July 4th 2013 without warning. In an instant. From pretty much nought to a billion with the opening (as kind and sensitive as you can possibly be in the circumstances) words of an A&E consultant. On that baking, baking hot July morning. The snuffing out of a young life and unleashing of horror, devastation, disbelief and pain that defies description.

From thinking about the prom on the bus to work to autopsies, coffins and cremation.

We had no idea then that two years later we’d be locked in a foul, stench ridden, rotten corner with both Sloven and Oxfordshire County Council (OCC) doing their best to extricate themselves from any responsibility for what happened. Sloven by withholding documents, pulling dirty stunts like arguing drowning is a natural way to die, sending bullying letters and consistent obstruction. OCC by conducting a secret and completely biased (non) investigation into what happened. We had no idea that the actions of both (public) bodies (and others who remain shadowy in the background through their non action) would actively add to and increase the intensity of pain and agony.

Bastards.

Naively and even despite the above, we thought that #107days this year (we never expected or wanted to have to revisit the almost spontaneous explosion of goodwill, celebration, solidarity, commitment, awesomeness and magic that unfolded last year) would incorporate the outcome of various ongoing reviews; General Medical Council, Verita and Mazars.

A nonsensical expectation.

Instead, we have no outcomes and an additional ‘thing’ to add to the wait list; the revised OCC ‘investigation’. [This is a ‘might as well wait for the fucking cows to come home’ item supposed to be finished in June.]

So what the fuck are we actually waiting for? And why?

What’s the big mystery?

LB was a fit and healthy young dude with a diagnosis of epilepsy. The STATT unit he was in was clearly crap. It was taken over by a “Trust” based 100 miles away 8 months before his death. OCC and the Oxfordshire Clinical Commissioning Group were apparently happy to shell out £3500 a week for his non care indefinitely. An independent report published 16 months ago established his death was preventable. The unit has since shut and a series of failed CQC inspections across the county have highlighted the maggoty state of provision in Sloven’s “Northern patch”.

As a vague aside, no one seems to be (publicly) going near the question of what happens to the prime chunk of land that the STATT unit was on. If it’s sold, who gets the readies? If the dosh goes to Sloven and into their southern based coffers where does that leave people/kids in Oxfordshire who need support? Ho hum. Awkward questions that won’t disappear but a brief glance at Sloven’s latest Board papers for the meeting tomorrow suggest that property sales form part of their ‘business’.

property disposal

Setting aside the monetary considerations which, along with reputation, seem to be the only thing Sloven and OCC respond to, I keep coming back to the question; what the fuck are we waiting for?

Dan Goodley and Rebecca Lawthom raised this question as they took the #JusticeforLB flag back to Glastonbury for a second year;

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Without answers, they repeated their remarkable commitment to sharing what happened to LB with Glastonbury revellers. They managed to share LB’s story, keep the flag flying high with no flagpole breakages and hook up with Rosie and Jack. Love em.

Legendary work.

Keeping the hope flickers well and truly fanned. With joyousness, humour, love and dedication. Maybe someone/organisation with any power/influence will step up too. And act. As we continually say, it ain’t rocket science.

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Of moths, pride and Paloma Faith

We’ve got a moth infestation. To the extent that I now wander round obsessively fixated on looking for tiny thin dark/black marks on walls, especially near door frames or down the sides of furniture. And then crush em. We’re going to have to repaint pretty much everywhere. Or extend moth cull to a level in which it resembles some new decorating technique; “papery flakery. In dull grey to blackish.”

Rosie was my fellow moth destroyer. We had some hilarious days a few weeks ago. Systematically searching them out with a spongy baseball bat. But Rosie’s left home now. Gone to moth free pastures [I hope]. I wonder if LB might have taken up the cause. I don’t know. He was a dedicated and committed litter hound and did a cracking number (with constant encouragement/involvement) on weeds in the front garden. I’m not sure if fleeting, flitsy/flaky insects would have rocked his boat.

Rich and I went to London today. Leaving the moths free to do what they do in a day. [Bastards]. We watched a good chunk of London Pride. Loving the brilliance, joy and creativity. A bit bored/frustrated by the (often lengthy) patches of corporate overkill. London buses featured consistently which was ace, though we were staggered by the ‘wheel stewards’. Every bus/vehicle in the parade/procession had dedicated wheel stewards. For each wheel. On a route fenced off from the public and organised to the hilt. L1014426 L1014283 L1014471-2 L1014306 Wheel stewards? LB was in a specialist NHS unit with a ratio of four staff to five patients (plus the wider learning disability specialist team) 24 hours a day. At a cost of £3,500 per week. And he died?

With no accountability, still.

Wow.

How the fuck does that work?

In more positive news, the #JusticeforLB flag has been flying at Glastonbury. Paloma Faith’s set tonight. Action not bullshit. As always.CIhnOmNWsAAl5sG.jpg-large

Running out of titles

Wondering what we can do really. In a bit of a despondent way. The update I posted this week illustrates how public bodies can simply delay. With seemingly unlimited doses of delay powder. A sort of modern wday ‘smoking out’ policy. Earlier today I found out that Oxfordshire County Council (OCC) are delaying their response to my Freedom of Information request about their ‘investigation’ because a Public Interest Test is being carried out.

I don’t know what this means and the FOI dept at OCC were unable to enlighten me beyond the fact it will involve a delay of up to 20 working days. Another month potentially. It would be bloody brilliant if they could soup it up a bit and complete this test (test?) in days rather than weeks but given the weighty blanket of on going delay, I’m not going to anticipate anything. July 22 is the new date.

I don’t have a bar anymore. That was crushed somewhere along the way. When we realised that these public bodies can do whatever they want to devastated parents/families and no one will stop them. I now expect the worse and, so far, that has been spot on.

Another parent, Nic, whose child died a few months before LB posted this on my blog yesterday.

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Nic regularly posted comments in support, in shared grief, rage and despair at the impossibility of trying to get accountability, justice or anything to make sense of the apparently casual and brutal chucking aside of much loved children’s lives. One of the first comments she made included the request ‘More photos please’.

So here’s another pic from that holiday in 2010. When we were walking a completely different path. And, on a more cheery note, the #JusticeforLB flag is returning to Glastonbury this year with the legendary Lawthom Goodley crew. Bloody good timing in the circumstances.

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Updating the update. Of the update.

We’re fast approaching the second anniversary (hate, hate, hate using this word for this) of LB’s death [Howl]. 16 months after an independent report was published stating LB’s death was preventable.

Here’s an update of the latest update (March 2015). As always (and clearly forever) in no particular order:

1. The inquest: A fourth pre-inquest review meeting is being held at 2pm, September 9th, Oxford County Hall. All welcome. It’s a very public affair. The full inquest is scheduled to start on October 5th. Sloven have “unreservedly apologised” for LB’s death (as the curious Tory template (repeatedly) reminds us) but this hasn’t stopped them pulling all sorts of tricks along the pre-inquest journey. Including a bit of desperate back pedalling from that unreserved apology to argue that drowning is a natural cause of death.

2. Disciplinary councils: We referred one clinician to the GMC in May 2014. This investigation continues, slowed by some additional stuff that has cropped up. Apparently Sloven disciplinary processes led to an undisclosed number of undisclosed staff members referred to the (undisclosed) NMC. Who knows?

3. Police: The investigation continues. Staff interviews are underway.

4. Health and Safety Executive: The investigation (apparently) continues in line with 3. above.

5. Oxfordshire County Council: We’ve received legal advice on the “independent” report OCC commissioned into LB’s death without our knowledge. It seems that it is defamatory so there is ongoing legal action relating to this. OCC are sticking to the ‘We did nothing wrong’ line. Chilling really. The consultant is apparently working through the list comments/issues I was forced to identify a few weeks ago to revise the original report. I still say chuck it in the nearest bin but what power do we have? [I’m dreading receiving another version given the methodological approach].

6. Verita 2: This second, broader investigation into what happened to LB remains ongoing.

Mazars death review: The review into deaths in Sloven learning disability and mental health provision since 2011 has been extended by NHS England to allow additional work to be done. Given the announcement this week of a national review into the premature deaths of learning disabled people, this extended work makes sense.

So. That’s it really. When we sadly started #107days again this year, we naively thought some of these investigations would be completed during this time. It’s now clear that this ain’t going to happen.

It’s all a pile of cock rot really.

I’ll leave you with this pic from a holiday we had in July 2010. When life still had colour, beauty and the extraordinary (in a good way).

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Cut and paste society and template life

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Still a bit baffled by the Tory template [copy below] being pinged out by MPs in response to requests from constituents to support the #LBBill. Some people see this as a sign that the campaign is weighty and demands a response. That it’s referencing the Green Paper, keeping it out there. Yep, I can see that. I also find it pretty offensive to see cut and paste jobbies stating how “deeply saddened” MPs are by LB’s death.

“No you ain’t”, I want to snarl at them. “If you were you wouldn’t blooming well template it…”

Maybe there are bereavement templates in Tory HQ. Who knows. Maybe there’s a whole filing cabinet of templates. One for every occasion. Bit like LB used to say he had a girlfriend for every occasion; camping and funerals.

I’m interested in who produced the template and on whose say. It’s a masterpiece in saying nothing, while saying so much.

I was greatly saddened to learn about the case of Connor Sparrowhawk. I understand that past-mortem findings have shown that that he died as a result of drowning, likely to have been caused by an epileptic seizure.

I am deeply sorry that Connor died whilst in the care of Southern Health NHS Trust who I understand have acknowledged that they failed to undertake the necessary actions required to keep him safe. I think it is quite right that the hospital has now apologised unreservedly to Connor’s family.

I read the proposed Private Member Bill with great interest. I think it is an important contribution to the ongoing debate about how we best improve care for people with learning disabilities. You may be interested to know that during the last Parliament, the Department of Health held a consultation called ‘No voice unheard, no right ignored’ which looked into precisely this issue. In particular it included a section called ‘My right to be independent, to be part of a community and to live in a home I have chosen’.

I hope this is an area that the newly elected Government will choose to examine carefully before deciding how best to support and care for patients.

Thank you again for taking the time to contact me.

The expert witness report

Blimey. In the topsy turvy world we’ve been pitched into, I found out today I’m in Manchester tomorrow and not not Birmingham. The Birmingham confounder was the Community Care Live gig last month. When I wrote and forgot about this post. About the expert witness report:

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I received the epilepsy expert witness report this lunchtime, ahead of the pre-inquest review meeting next Tuesday. I was in the Speakers Lounge at the ICC (dunno what ICC stands for but something Conference related), Birmingham, at the Community Care Live event. It sounds pretty posh and not something I’ve sat in before. But it was just a space. A bit scruffy. With lukewarm tea, coffee and biscuits.

Various people I ‘know’ through twitter were around though. Which was kind of cool.

I vaguely grazed the report, half thinking about my talk, half listening to/joining in conversations around the table. The emotions involved in reading such a report are indescribable really. Deeply, sadly intense with no space to go. Certainly not at the ICC. In the Speakers Lounge.

On the train home, a few hours later, a woman was on the platform with her young daughter and a big case. She coached her daughter carefully and repeatedly about the steps they would take when the train arrived.

“You get on first and I’ll be right behind you because I want to make sure you’re safe”, she kept saying.

I got home this evening and read through the report again. Properly. With a flickering home movie stream in my mind. Constant moments of watching, coaching and doing the extreme safety parent thing. Interspersed with silent howls.

And bizarrely (or maybe not) I thought ‘Thank you for calling him by his name’.

Space, place and managing snow

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Just under two days in Tromso this week. Midnight sun land. Well not much sun but spectacular sights. And so much daylight. Which was strangely mesmerising. I learned a lot from colleagues about life in northern Norway. Including snow management techniques. The importance of building capacity to allow space for snow. Built on an understanding that the snow ain’t going anywhere fast and everyday life needs to continue.

Sloven and OCC don’t seem to understand the need for this space when it comes to grief and families. Instead they just shovel, or try to. A process that’s destructive, counter-productive and hugely damaging.

There are policies that try to create space for grief within the NHS. The sensible and straightforward Being Open framework, for example. But policies are just words if they’re ignored. As meaningless as the non-apologies identified by Ally, LB’s cousin, in her recent dissertation on Sloven communications.

There are obvious differences between heavy and sustained snowfall and grief. But I find it hard to understand how the grief stuff, something so agonisingly accessible – most people can, if they can bear to go there, have the beginnings of imagining what such grief feels like – is dismissed or ignored. Intensely human, deeply emotional and gut wrenchingly awful experience is trampled over, ignored or worse, by the public bodies responsible.

How do we get it so blinking wrong?

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Defam, flimflam and OCC

Back to the Oxfordshire County Council report this evening. I was struck by things I hadn’t noticed or noted in the list of factual inaccuracies I was forced to produce the other weekend.  

Reading the Methodology section alone makes me feel like a nest (nest?) of spiders eggs are about to hatch and burst through my skin. Interviews were apparently conducted with the;

Area Service Manager

Operations Manager

Team Manager

Senior Practitioner

Care Manager

Clinical Specialist Occupational Therapist

Service Manager, Children with Disabilities

Team Manager, Children with Disabilities

LB’s teacher

LB’s teacher obviously knew him well. The Care Manager met LB and me a handful of times (3?) across ten months or so.  I met the Operations Manager once after LB was admitted to STATT. The rest? I dunno. Just job titles. That give certain people the power to produce words/claims about what happened. Some personally named, some not.

I wonder how long these ‘interviews’ were. What was asked? How much careful probing was done? Were they recorded or were notes jotted down? Were they face to face or over the phone/email? What could so many of these people contribute to any understanding of what happened to LB? Why weren’t we involved at any point?

As if this flimsy engagement wasn’t enough for someone (anyone) with any sense at OCC to recognise that this ‘independent review’ was clearly, seriously flawed, there’s also a handy list of ‘Other staff noted in this report but not interviewed‘. This includes the psychiatrist who was apparently contacted by the Team Manager (who?) on behalf of the Independent Consultant. And various other staff members who had either left OCC or were not available for interview (in the eight months the review took to produce).

What a dogs dinner of a report.

And how often are sneaky little investigations like this conducted and circulated within and beyond local authorities/NHS Foundation Trusts without families’ knowledge?

Just chilling.

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Extreme spaces and a touch of Marge Simpson

Another full on week. Thursday morning, the Private Members’ Bill ballot. Thursday afternoon, there was a meeting of the Expert Reference Group for the ongoing Mazars death review. This review, commissioned by the Real David Nicholson before his retirement from NHS England, was viewed as a tick box exercise by some. Sigh.

Friday morning we had an intense and, in places, deeply sad meeting in London talking through legal stuff. There was a bit of swearing, a box of tissues and a shedload of sensitivity.

Tonight we went for some nosh to celebrate Rosie moving to Bristol before starting her first full time job. On the way home, she was chuckling about the time I dipped back into the St Giles fair on my way back from a meeting a few years ago to have another cheeky go on the coin pushing machine. Apparently Tom texted me asking where I was and what was for tea, sending me into a spin about being a rubbish mother.

“You did what?” said Rich. “I didn’t know about that! Marge Simpson is a secret gambler…”

Setting aside what OCC would have made of this story in their craphole review, I just want to say; Good on yer, Rosie. It’s a fab job, brilliant opportunity and you bloody deserve it.

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