A tale of two reviews (and an inquest)

For anyone managing to keep up with this dense (and often tediously frustrating and jargon laden) tale of trying to get accountability when your child dies a death in NHS ‘care’ (involving a dereliction of such basic care that defies understanding) well done.

To recap. A week or so ago, a second Verita review (V2) was published. This was commissioned in July 2014 to explore broader issues around why LB was admitted to the unit in which he died. A third review, the Mazars death review (M1), examining how Sloven responded to deaths in their learning disability and mental health provision since 2011, was commissioned on our request by David Nicholson shortly before he stepped down as NHS England CEO in March 2014. We thought this needed urgent investigation because of the ease with which Sloven dismissed LB’s death as natural causes. [Weep]. The contract was given to Mazars in November 2014. Another six month contract.

We fully expected both reviews to be published by June/July 2015. With the pesky general election as the big delay factor. But nah, they dragged on. M1 because the findings inevitably generated the need for further investigation. V2 because, er, it could. V2 was eventually circulated for factual accuracy on Aug 21th, M1 a couple of weeks later on Sept 9th.

During LB’s inquest the status of these two reports were continually contested. Sloven were determined to get V2 in front of the jury while chucking M1 into oblivion. We thought the coroner should have sight of M1 because the findings were relevant to a prevention of future deaths report. We found out, during this nasty piece of game playing in open court that V2 was complete. Nothing like being kept informed, sensitively. And then we were informed it wasn’t. What a mess. In a space that you’d kind of hope that the wellbeing of the family would be uppermost in the actions and thoughts of the NHS Trust involved and all related organisations. Family wellbeing? Eh? Nope. It’s all about reputation, reputation, reputation.

In the end, neither report was disclosed to the jury.

A week later, V2 was published. No further delay. Despite both lay reps (George Julian and Bill Love) disputing the findings. M1 continued to be challenged by the Sloves. NHS England took the criticisms of M1 seriously and commissioned an academic review of the methods used. [I know.]

Seems to be that an extra level of rigour is needed because the findings are so controversial. Yep. Make of that what you will. The NHS England plan for moving people out of of Assessment and Treatment Units was published last Friday. This was the subject of some criticism around resources, reach and expectation. To me it seemed to be well thought out, sensible plan particularly given the failures of everything that had gone before in the last 3/4 years (as long as the money followed the patients into the community and remained with them). It strikes me that the delay in the publication of M1 is a strategic move partly relating to last weeks news. We can’t have a report that drips death and darkness casting a shadow over shiny new plans.

The latest M1 delay news (the report of the methodology will take up to Nov 13th) came with the usual teeth jarring statement that NHS England know this will be ‘particularly disappointing for the family’. I don’t think NHS England know what this experience is like for us. I think it’s almost impossible for anyone to understand what it is like to have a child left to drown, alone, in an NHS hospital bath and then be forced to fight for over two years for accountability for his death. Please ditch the trite and meaningless statements.

Here’s a radical thought.You don’t need to wait for a written review on the methodology (you are choosing to). A telephone call with written confirmation to follow would do. Why not put this ‘grieving family’ at the centre of this vile and harrowing process for once and just publish the fucking report?

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.

Justicequilt-4

Ground elder and the #LBBill

Justicequilt-281After years of saying I would, I’ve started doing some gardening again. This is after fab help from family and friends (thank you). The main bit of work left now is the ground elder that’s replaced grass over the past few years. I’ve got into a bit of a rhythm trying to get rid of this. Half an hour here and there. A load of worms and two frogs. And a blue plastic leg. Thunderbirds again I suspect.

Ground elder. Blimey. A beast and a half. The roots go on and on and on. Ending in the tiniest threads with remarkable strength. The more digging, the more there is. So blinking similar to our experiences with both Sloven and Oxfordshire County Council. A rhizomatic happening of roots (power, deceit, twists and turns); the surface giving little hint (to the uninformed observer) of the well established, relentlessly strong, thriving activity below.

I clear a patch apparently thoroughly, move to the next bit and pull on a random root that takes me back to the the cleared patch. Wow. How could I miss a foot long root in a tiny patch of earth?

This week I heard that there were rumblings among official type bods that there was too much focus on LB. That

‘… an awful lot of time is being spent reviewing what happened to one young man.’

There could never be too much focus on what happened to LB for me. Well not until we get some sniff of accountability maybe. And maybe not even then. But #JusticeforLB has never been just about LB. As our ‘made up’ manifesto made clear over a year ago now. I tossed out the ‘denial’ stage of useless grief models on day one. Dead is dead and there ain’t no changing it [howl].

The campaign has always been about trying to get broader change in (a ground elder riddled) health and social care structure and provision. About creatively and doggedly both making visible and trying to remove the deep rooted crap that flourishes in these spaces.

One way to do this is by asking MPs to support our Private Member’s Bill; Disabled People (Community Inclusion) Bill 2015 (‘#LBBill’). A fairly straightforward (though speedy) task of tweeting, emailing or writing to your MP in the next week or so to ask for support.

Justicequilt-282

Fieldwork, ferries and feedback

Justicequilt-194

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.

Justicequilt-195

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.

Justicequilt-169

 

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.

State of ‘play’

Had a twitter rage flurry just now. It happens every so often, coming almost out of nowhere in terms of timing. I appreciate people’s fortitude to suck it up really. It must be off the scale of tedious. Anyway, it reminded me I should update the state of play right now in terms of gaining some sort of accountability for LB’s death. This may be useful to families like Thomas Rawnsley’s, and others who are earlier on in this toxic process.

In no particular order (because there is no particular order):

1. Verita 2. A broader independent review building on Verita’s original report, exploring issues like Sloven leadership, systems, mental capacity and learning disability services in Oxon. Commissioned by NHS England and the Oxfordshire Adult Safeguarding Board.

Six month review started in September 2014 (appointed June time). Completion date? Fuck knows. [Notes: We have a rep on the investigation panel but she is failing to secure information any better than we are. The local NHS England team told us in March 2014 they’d keep us informed of developments but never get in touch unless we contact them.]

2. GMC investigation. A referral by us because of lack of action by Sloven.

Started May 2014.
Due to be completed? Fuck knows. [Notes: We get regular, unsolicited, progress reports from the GMC which is something.]

3. Police investigation.

Started July 2013, re-started around March 2014.
Due to be completed? Fuck knows. [Notes: We got regular updates last year but no news since the pre-inquest meeting January 13.]

4. Health and Safety Executive Investigation. Someone from the HSE sat in our kitchen several months ago. A few HSE leaflets make me think they must have done and we didn’t dream it, but no direct communication from them in any form at any point. Could be figment of imagination.

Started? Fuck knows.
Due to be completed? Fuck knows. [Notes: I just found the business card of the inspector who visited. Someone (not me) has pencilled ‘arse’ above her name.]

5. Sloven staff investigations. The stuff of legend. Almost as extraordinary as 4. above.

Started? Fuck knows.
Due to be completed? Fuck knows. [Notes: Latest communication from Board Chair, Simon Waughpath, is that the delay has been due to factors out of their control. As ever.]

6. Mazar review. Reviewing deaths in Sloven learning disability and mental health provision since 2011, commissioned by NHS England.

Started November 2014 for four months. Due to be completed? Fuck knows. [Notes: As 1. Sloven are reporting a publication date of late Summer.]

Wow. A full house of fuck knows. Impressively off the scale of crap.

I mean what did LB matter really? And our lives? Smashed out of recognition by his death. What do we matter?

State of play sums it up really. A game to all those implicated in some way. Drawing their chunky old salaries while the months go by. Unchecked. And we’re told fuck all.

Stay classy. The lot of you. It is an astonishing spectacle.

Another week that was

What a week. Starting with a speedy East Coast train trip to Scotland and back for work. Interviewing learning disabled mothers about their birth experiences. Spectacular scenery, cheeky photos and enforced work space on the journey.

Justicequilt-78

Justicequilt-84

Got a Stinky Pete response from Sloven Board Chair on Thursday and pre-recorded an interview with Radio 4s You and Yours about Norman Lamb’s No voice unheard, no right ignored Green Paper that afternoon. A bit of an odd situ, sitting alone in a room at BBC Oxford with a set of headphones, bootleg copy of the Green Paper and microphone, waiting to speak to Shari Vahl about LB and the campaign.

Made me feel pretty sad really but it wasn’t as awful as the first time I did it. Back in the day.

The Green Paper was published yesterday with a good set of responses, commentary and media coverage [eg. Community Care, Oxford Mail, BBC and Rights in Reality]. We produced a campaign response in typical Justice Shed type fashion: part tongue in cheek, part cutting (we hope), passion drenched and last minute/skin of the teeth type jobby. Norm, love him, was heartwarming in his recognition of the trouble and toil we’ve* been undertaking. And a complete sob (in a good way) moment for Connor.

Norm

[Update: good summary piece in the Guardian too].

I was working at home. My mum had volunteered to transform the out of control mass of stuff/paperwork in the Justice Shed into order.

This effort was partly to find a missing (seemingly crucial) record in getting #justiceforLB. One of those documents you can’t help thinking really? This is necessary? What is being denied rather than asked here? I worked my way through my usual cone of shame work tasks while my mum cussed about the lack of dates on various letters/documents, efficiently magicking a mountain into three, well ordered, neat boxes. Three? Wow.

The missing record was nowhere to be found. I called the GP surgery to ask if they could provide a replacement copy. Sigh. Not a good call to make. Er, record, yes. Relating to our dead son…

Yes. His name is/was/[howl]. It may be under my name… Thank you.”

I walked to the surgery and picked up the record. Another line in Sloven’s bizarre ‘We completely accept LB’s death was preventable but, at the same time, our legal team will continue to do everything in their power to overturn some stone to get us out of the shit’ approach closed.

Then today. The first day of filming for the LB movie produced by My Life My Choice with Oxford Digital Media, funded by Oxford City Council. Filmed in the Jam Factory. As it probably should be.Justicequilt-80

*For any new readers to this blog, I just want to clarify that #justiceforLB and the #LBBill are collective endeavours. Crowdsourced contributions from all sorts of people (an explosion of diversity, colour, brilliance, cheekiness, humour, passion, commitment, rule breaking, sense, and love).

Those blinking ‘models of disability’ again

I was going to do some work today. I’m on leave till Jan 5th but have a chunklet of work to catch up with. This is something I didn’t really have before. Not because I’m great but because I just did my work. More of an obedience type thing really. These days I have a hell of lot of other stuff to engage/deal with. On top of ‘work’. Another consequence. Another thing on the pile of ‘now life is like this’.

But I didn’t get round to working. I stayed in bed for ages, got up and just didn’t want to. Christmas was a pretty agonising experience. And I felt knackered. This evening I caught up with some reading. Recent disability related articles. This was a bit of a treat really. Some right old tasty morsels. Though a lot of returning to the distinction between medical/social models of disability. [Medical model: disability is an individual, tragic thing to be cured, social model: it’s to do with the organisation/structure of society rather than an individual problem].

I got to thinking about the Verita investigation into LB’s death. This (excellent) report was kind of something and then, in many ways, nothing. It clearly stated that LB’s death was preventable [howl] and carefully laid out the reasons why. But nothing has actually happened as an outcome. And the micro details remain largely unremarked upon.

Ironically, having spent most of my postgraduate learning immersed in disability studies, what happened to LB, and what is detailed in this report, kind of turns the medical/social distinction upside down. The health professionals involved collectively denied that LB was having seizures. Despite his diagnosis of epilepsy and me stating that he was having increasing seizure activity. They kicked out the individual impairment argument.

Why? Why would you do that?

  1. They were simply crap?
  2. They couldn’t give a shit?
  3. They were arrogant enough to make pronouncements based on, er, fuck all?

I don’t know (though I suspect it could have been a combination of the three).

I fail to understand how anyone with (any) medical training, would argue that someone with a history of epilepsy (hard won but ‘granted’ eventually) was not experiencing seizures. Why would you? For what reason? For what outcome?

He died.

Sloven and the CCGs

So here’s a mid-week quizette for you. The review into deaths in Sloven provision is going to have an expert panel to “review all the information and make recommendations on any further action required”.

Do you think this expert panel will include:

(a) Experts in reviewing deaths, particularly those occurring in mental health and learning disability provision?

or

(b) Representatives from Sloven and the two sets of commissioners on their patch (Oxon and Hants)?

Yep.

(b) Sloven and the CCGs. Sounds like a craphole Christmas No. 1.

Needless to say Meeting the Mazars was duly logged in The Little Book of Crap Meetings, under ‘Drenched with Incredulity’.

Rich walked out. After saying exactly what he thought of the death review so far. I caught the train to Glasgow.

Where it pissed down.
Justicequilt-3