Complainanting, crapness and death

Two years ago today I wrote this; The Unit. Day 63.

24 days earlier I made a complaint to Sloven/OCC. My main point about not being listened to and a lack of recognition about the seriousness of the situation was ignored.

complaintWhat exactly are we fighting about still? And why?

Anyone?

[An old friend, Bob, died on that same day, unexpectedly. This post is (hopefully appropriately) dedicated to him].

Thunderbirds, the scullery, care plan and the candlestick

Justicequilt-201Third pre-inquest review meeting yesterday. Pretty buoyed by the wondrousness of the Sparrowhawk Art/LiveatLICA event on Monday – captured in its deliciousness in a Guardian online gallery – we headed to County Hall. To be confronted by this screen in the foyer. The colourful and textured fabric of LB’s life reduced to an outdated, clunky and unnecessary statement. ‘The Late’… [Howl].

It really is a number sitting on a bench in a county courtroom. Listening while details relating to your child’s death are thrashed out in front of a Coroner. Sloven and their legal team sitting to the right. Family and journalists sitting behind. Given it’s supposed to be an inquisitorial process, Sloven attendees had a couple of chewy exchanges with their legal team. But we all know it ain’t really inquisitorial. That’s just fakery. A pretence signed up to by many.

The twists and turns of these pre-inquest meetings have been pretty extraordinary. Sloven have (so far) argued drowning is a natural cause of death, argued against a jury, argued that the reviews into LB’s death meant an Article 2 inquest wasn’t necessary and then, once the Coroner ruled that it would be an Article 2 inquest, tried to get the inquest moved to the High Court because the reviews made it very complex. They now seem to be circling in a new direction. One with a hint of clinician.

Like a kind of Cluedo on speed; there was no wrong doing… no body… no weapon…it was the dog… the cat … Miss Scarlett… Thunderbirds, the scullery, care plan and the candlestick.

We’ve just steered a straight path really. But then this isn’t a game to us.

Fieldwork, ferries and feedback

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Today involved five trains, two buses, two ferries and two taxis to get to the Isle of Wight and back for fieldwork. Pretty epic and a little bit unplanned (in terms of timings). But other than one wrong train, one wrong platform, a left tripod and couple of necessary sprints, it went like clockwork. We met some fab people. Learnt a chunk of stuff. And somehow were back in Oxford before 6pm.

Meanwhile, Verita were holding their ‘stakeholder’ event to feedback emerging findings from their broader review into LB’s death. In Oxford. The obvious suspects present (or their emissaries) plus some families.

Let’s just say that trundling along a pier, in almost sunshine, on an old London Underground train, was probably a good place to be in the circumstances. One that LB would have loved.

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OCC; the farce continues

Had a bit of a tense convo with the Director of Social Care on Monday. Their crap old report had been sent to Verita to be included in their broader review. And OCC’s legal team wrote in response to our questions about this review: “As we indicated it did not seem appropriate for the Council to seek your client’s involvement at that stage [during the review] given that she would have an opportunity to be involved with the Verita investigation and could make her comments in relation to the Council’s report as part of that.”

Wow.

So Sunday was spent correcting that crappy old report. A process that made me feel ill (I always feel crap these days but the work and emotion this task involved was too much). Around 4pm on Sunday I sent a shirty email saying I’d be invoicing the council for the work involved.

Anyway, the call on Monday was a waste of time. He wasn’t budging on his defence. It was fine to do such an investigation without our knowledge or involvement. It was fine to send the review to me by email out of the blue on a Monday morning. OCC had done nothing wrong. And the like. At one point he said in exasperation “You do things the wrong way, Sara. We offered you a meeting when we sent the report and you put your comments online for other people to read.”

Another brain melt moment.

Sorry Mr J. Putting stuff online is the only way to make visible the sneaky and deceitful practices that operate both within Sloven and OCC. Where families have little or no power. Given you commissioned and published this report without our knowledge, and were made to disclose it to us a few weeks ago, you really ain’t in a good place to talk about the wrong or right ways of doing stuff.

Reimbursement for my time was refused. With a classic and again dishonest statement;

Whilst I appreciate the time and effort you have spent reviewing the report, this report was an internal review to highlight any learning for Oxfordshire County Council.

Sparrowhawk Art…? Wow.

10269535_300807743417634_2373895719301392285_nHave been a bit out for the count over past days. Having to go through the OCC ‘report’ and detail inaccuracies at the weekend was a particularly low point (I know). Even within a (publicly accountable) system we now know comes stamped with ‘shite, delay, more shite, a shedload more delay and shite. Then wait for more shite’ there are clearly further depths to be mined. How can this possibly be?

So much going on that I lost sight of the magic for a bit. This has been restored by writing labels this evening for the extravaganza that is planned at the Peter Scott Gallery, Lancaster University, on Monday 18 May. Live at LICA (Lancaster Institute for the Contemporary Arts). A skin of the teeth jobby in terms of organisation in some ways (on our part), but one clearly soaked up and embraced by the organisers.

Sparrowhawk Art. Sparrowhawk Art? Wow.

On display will be the remarkably diverse, random (typically bus related) art, objects and artefacts relating to the #JusticeforLB campaign and #107days. These have been sent to Lancaster (and the careful hands I hope of Chris Hatton, the driving force behind this exhibition), in various ramshackle parcels from Oxford, Devon and Yorkshire.

Rosie was given the task of sending two boxes of stuff last week after I ran out of time forgot to send them before going to Norway. She forged a good working relationship with the local post office in a collective and humorous rising to the challenge of sending a range of stuff, including breakables, effectively and cost efficiently. A week earlier, wonderful mates/work colleagues stepped up, stepped in and packaged textile art and other treasures for another successful transfer. Meanwhile, the iconic Glastonbury flag and Postcards of Awesome also made their way to Lancaster University via George Julian and Dan Goodley. The Justice quilt already on display there.

Just wow.

I won’t give too much away for now. The labels alone – the telling of the story of a remarkable social movement arising through what happened and the heartwarming and collective response to that happening – are, in themselves, a form of documentary.

I will say that the exhibition will be extraordinary. And a panel discussion is being held at 3pm with Graham, My Life My Choice, Dominic Slowie, NHS England (remotely), George Julian, Janet Read, Imogen Tyler and Chris Hatton.

And tea, coffee, snacks and a pop up bar.

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Cluedo. And the OCC report

Today has been spent going through the OCC independent investigation. I ended up identifying 61 factual inaccuracies, comments and questions across the 23 pages. A foul, foul way to spend a sunday. For the diehard among you, the full list can be read here. Some summary thoughts (produced with George Julian) here:

ONE. How is it possible to review what happened to LB and the service provided to him without family input? How could this possibly produce any useful suggestions. And why weren’t we told about this review? If OCC were being transparent, seeking to learn, had nothing to hide, why not be upfront about it?
TWO. Given the obsessive focus both Sloven and OCC have demonstrated around my blog, wouldn’t the reviewer think about reading some of what I’d written? Both Verita and the Mazars have done so. It’s an information source after all. I’m not saying it’s an absolute truth but it presents our experiences and our thoughts and feelings about what happened. This knowledge could have made staff interviews more robust and led to a more coherent, accurate and useful report.
THREE. If a complaint is made about not being listened to and, in the process of making that complaint this point has to be stated more than once for accuracy, and then is inaccurately responded to, what hope is there? A reliance on ‘official’ documentation leaves this OCC investigation riddled with holes. Key things may not form part of documentation (deliberately or through incompetence). It’s naive and foolish to treat such documents as infallible.
FOUR. Who has a duty of care in this context? If, as OCC seem to be claiming here, I wasn’t coping why did they not demonstrate any concern for LB’s wellbeing? He barely features in the report.
FIVE. The report is littered with erroneous ‘althoughs’ and ‘howevers’. This isn’t a comment on the writing style and accuracy for its own sake; but these seem to be used to deliberately mislead the reader, to lead them to biased conclusions, even when evidence doesn’t stack up to support it.

Funnily enough (not funny really), the defence letter we received from OCC’s legal department presents spurious arguments like “this would seem to be an entirely reasonable response given the Council’s very high expectations…” throughout. This makes my internal organs fold in on themselves and turn to liquid.

SIX. Why does everything take so long, and need to be so bad before anyone steps up? It feels like the report paints a picture of failing parent, challenging son, and dedicated and compassionate staff who are constantly rebutted. Why is there no recognition or understanding of what we were experiencing? And why? And why the apparent surprise that we suddenly had LB admitted to STATT? Why did no one involved at the time listen to what we were saying?

SEVEN. What relevance is A4e support to this review? The focus on this in the report  either indicates the independent reviewer’s (mis)understanding of Direct Payments and/or is another attempt to pass the buck away from OCC and paint me in a negative light. My refusal to use their ‘service’ is mentioned in at least three places in the report. In some detail. Why? I’m left wondering if my  refusal to use their ‘service’ was a financial? political? problem. An additional bit of card marking. Adding to the rest.

EIGHT. Verita 1 was clear that discharge planning was not advanced (by any reasonable person’s standards) and yet this review suggests it was almost complete (largely through the efforts of the Care Manager who, as we are told in two places, came back off annual leave in April and got straight on with organising the professionals meeting). Well she didn’t. And I’d probably have felt more disposed towards her if she’d seen LB more than once while he was in the unit and attended more than two of the weekly meetings across the 107 days he was there really. Again, whose truth counts?

NINE. Perhaps the most disturbing element of this report is the undercurrent of parent blame. Implicitly and explicitly blame permeates the report. Well it’s drenched in it. It reads less as an investigation of OCC’s processes and involvement in what happened to LB and more an attempt to paint a picture of a flaky parent who  repeatedly refused countless offers of support and help and forged a resolutely independent (and flawed) path down direct payment alley. In the vein of “there’s always something or other with Mr Neary”.

George commented; “The reference to Direct Payments and choices, pretty much could have been written as ‘Inspector shrugs shoulders and says in a loud disgruntled voice: “Well, they wanted a Direct Payment, they made their bed so let them lie in it”; OCC 1 and OCC 2 hug and all three leave stage right’.”

Possibly (though it’s impossible to really judge given the number of contenders) the most damning statement in the review comes towards the end;

I consider it important to note that this [families choosing to use direct payments] also means that those families then have responsibility for the choices they make.

Ah. It was the mother what done it. In the kitchen. With the direct payment and a full time job.

Classy.

Dealing with this report, from the moment I received it with no warning by email a few weeks ago, to the lengthy and tortuous work today, has been intensely harrowing, time consuming and distressing. How OCC, like Sloven, can continue to extract more from the fragments of our crushed lives, in seedy and self serving attempts to cover their own backs is just barbaric.
He died.

I wasn’t listened to.

Justicequilt-187 Just back from attending the 13th NNDR conference in Bergen, I’ve  picked up the OCC investigation into LB’s death (that came like a hammer blow a few weeks ago).  This is something I naively hoped we could just say ‘Er, please bin it. It’s a pile of (harrowing) shite.’ It turns out we need to detail the inaccuracies in it. An awful, time consuming and beyond unacceptable task.

Tonight the tears started on p5. A summary of the complaint I made to Sloven after LB was admitted to the unit in March 2013. A summary of five of the points that the complaint made and the shonky responses to it. 0cc4 But there weren’t five points. There were six.

12.4.13 My email to the social care director: image On 15.4.13, the Sloven complaints person sent me this email and I responded, the same day, again flagging up the sixth point. image 0cc20 Prophetic words and dripping irony. I wasn’t listened to. The seriousness of the situation was not appreciated. I wasn’t listened to in making the complaint either. Clearly. And OCC deliberately didn’t listen in writing this craphole ‘report’ based on half truths and inaccuracies.

Which bit of ‘our beautiful son is dead because you arrogant, bullying, dismissive bastards refused to listen’ don’t you get? And why the fuck am I having to endure this soul destroying task?

Power, prejudice and indifference

This weekend involves work. ‘Proper’ and campaign work. Part of the latter involved sifting through events of the past 21 months on my blog. I came across this post from a year ago in which I document the seeds of including a request that all deaths in Sloven’s learning disability and mental health provision are investigated in the Connor Manifesto. Our concern was the ease with which Sloven slapped a ‘natural cause death’ on what happened to LB and how it probably wasn’t the first time they’d done this. We met the Real David Nicholson, then CEO, NHS England, a few days later who agreed to commission this review. Days before retiring.

I suspect a few people involved at that point and later probably wrote this commitment off as a tick box exercise to be sorted with a bit of (superficial) number crunching and benchmarking with other Trust data.  A final fling. Or flout on the Real DN’s part. But the Mazars got the gig and ran with it. And gave the task the commitment it both demanded and deserved. The report will be published in the next few months.

At the opposite end to the spectrum of investigation, it turns out that the Sloven staff disciplinary processes led to (certain) staff being disciplined in a robust process (which is good). Clinical staff were, in an apparently equally thorough process with similar external validation, found to be doing all they could be expected to do. No action taken.

This is odd given the referral we made to the GMC last spring remains under investigation.

Power and prejudice. Death by indifference. Dead with indifference. Though I’m beginning to wonder if indifference is the right word.

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Oxfordshire Conty Concil.

Having been a cheerful swearer with vague, unarticulated boundaries (that have raised some eyebrows among some family, friends and colleagues) over the years I’m being pushed into (almost) using language I never dreamed I’d use.

Oxfordshire County Council’s legal department have replied to our concerns about the ‘independent’ investigation into LB’s death that emerged a few weeks ago. (We had no idea this report was being conducted, it’s full of inaccuracies and LB’s health and social care records shouldn’t have been shared with a third party without our knowledge).

The response begins with a rehash of the terms of reference of the ‘investigation’. In a howling example of irony these include; ‘to review the contact between adult social care, LB’s family and school’.

There follows a shedload of rubbish statements. For example:

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What a peculiar statement. An all powerful ‘Council’ doing stuff rather than individuals. OCC senior staff should probably have a quick read of Chris Hatton’s latest post about bureaucracy. OCC (and their ‘independent’ consultant) have a habit of stating what wasn’t the case. Like stating in the report that I wasn’t present at a meeting after detailing who was. Detailing what wasn’t strikes me as a bit of a warning flag in terms of trying to understand what’s going on in both the construction of the report and the subsequent defence of it.

The letter states that the OCC report was commissioned by the Director of Social and Community Services in July 2014 (and then was delayed by the police investigation) before the Verita report was commissioned.  As the tender process for the NHS England review was underway in June 2014 and Verita awarded the contract in July this is simply inaccurate. Post-hoc rationalisation. Wrongness upon wrongness.

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Wow. OCC taking ‘the dog ate my homework’ to new levels. This is just nonsense. Almost laughable but of course it ain’t. In some sort of unacknowledged hinterland (a space occupied by many families I’m sure) we now have two choices. Leave this ‘report’ as a public document inaccurately detailing events, to be potentially used in LB’s inquest and other arenas. Or suck up the emotional distress (and time) of carefully picking through the lengthy document to edit and correct seedy, inaccurate and self serving statements. That seems fair.

The final statement in the letter responds to the confidential status of the report. It sends my brain into a spin, given the context.

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I’m left raging. As always. Well and wondering if OCC really have a legal department or does someone like the independent consultant do a bit of moonlighting.

We are seeking legal advice.

 

Pasta, cheese and epilepsy

I found out this week from an unusually humane ‘official’ source that the Sloven staff disciplinary actions for a chunk of staff were very thorough and a range of actions were taken. Disciplinary actions for another ‘type’ of staff were deemed unnecessary. These staff had done what they could reasonably be expected to do and this had been agreed by an external bod.

‘Mmm.’ I said. ‘Good to hear it was a thorough process, but odd about the latter decision given we referred a member (of favoured staff) and this has been the subject of serious investigation since last spring.’

Nothing like an equal playing field.

The more I read or get told about what happened to LB, the more I despair. Sloven Towers seems to have anti candour armour with Deny, Deceive and Delay stitched throughout. The 3Ds. Allowing no space for remorse, sadness or open reflections about what happened. Reading the various reports/records/FOI documents, there was no epilepsy. No seizure activity.

This is core CIPOLD fodder really. LB was ‘learning disabled’ so his right to any other diagnosis was compromised from the off. He had to wait the best part of two years to get an epilepsy diagnosis (despite two ambulance trips to A&E and various other reported seizures involving paramedics). While the earlier absence type seizures were puzzling the tonic clonic numbers that followed left no doubt.  A tonic clonic seizure is, as anyone who has seen someone experiencing one, clearly an epileptic seizure. A harrowing experience.

LB’s eventual diagnosis was pretty low key. Some 1950s medication prescribed by an A&E doc, an appointed neurologist, but no invitation to attend ‘First Fit’ clinic at the John Radcliffe Hospital. A handwritten note querying this is scrawled on hospital records but notes are notes. Not action. Maybe he’d had too many ‘first fits’ to qualify for entry to that particular club. Or maybe the learning disability label meant such an invitation was inconceivable. Who knows. It didn’t happen.

Soon after LB died someone from Young Epilepsy contacted me about speaking at some school related event about epilepsy. During the telephone conversation, when it became apparent that LB had been at a special school, the invitation was rescinded and the call ended. Wow. I thought. Sitting at work, receiver in hand. Denied epilepsy legitimacy in death as well as life. Wow.

The canyon that separates ‘official’, publicly funded, engagement with what happened and our experience remains immense. One of Tom’s school mates said to him this week that coming round to our house now is kind of like having pasta without cheese.

I so know what he means.

Imagining Sloven or Oxfordshire County Council (and probably other) peeps reading this, I can hear them bleating “There’s no such thing as cheese or pasta. He’s talking rubbish,” without missing a beat.

Because LB didn’t matter.

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