Doubters, deniers and belieSHers

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Helter skelter times. With the emergence of the key findings of the Mazars review via the BBC this week. Having banged on relentlessly for over two years now, we feel some relief that a wider set of people may be gaining insight into the improbably inappropriate, incompetent and deeply arrogant actions of Katrina Percy (KP), the CEO of Southern Health NHS Foundation Trust (Sloven), and her merry (board of) wo/men.

Sloven have demonstrated tooth enamel removing disregard for the content of one of the most scandalous reviews to be (almost) published this century. A review that has generated what Graham Shaw has rightly described as ‘a deeply-troubling episode in the history of the NHS’.

As we followed the painfully slow unravelling of the top layers of Sloven ‘leadership’ in the last few days, including a late night statement from KP that made me wonder if some cheeky chapster had hacked the ITV website, doubters and deniers started to appear on twitter. [And in person, as Mark Neary experienced.]

For some reason the Health Service Journal (HSJ) led a paternalistic backlash. Cautioning against anyone paying too much attention to this half baked and strongly challenged review. This may be because the HSJ, like us, had been leaked a copy of the independent review Sloven had commissioned to examine the methodology of the (independent) review into their practices.

[At this stage, you may need a moment or two to;

  1. Scratch your head with incredulity
  2. Laugh hysterically
  3. Get a cold beer from the fridge to cool down your forehead
  4. Weep at the bottomless pit of money Sloven can seemingly throw at wriggling out of ‘tricky situations’
  5. Perform some other action to make this completely inappropriate action somehow digestible…]

Sloven commissioned Professor Mohammed* to do a review focusing largely on the ‘outlier’ question.  He strongly critiqued the Mazars ‘at best unsatisfactory and, at worst, incompetent’ analysis. Cripes. NHS England had already commissioned an academic to review the full methodology. Their review (of the review) asked for a fuller account of the methods used but otherwise gave it a clean bill of health.

The second group, the belieSHers, without knowing the content of Prof M’s review, believe so strongly in Sloven’s credibility (as an NHS Foundation Trust?) that the ITV statement was all they needed. Sloven said the findings were wrong. There. Sorted. And stop this sensationalist reporting without foundation. Tsk.

Overlapping this group were the disbelievers, including Roy Lilley who drew on his own ‘intelligence’ to suggest strongly that only sections of the half finished review had been leaked by a disaffected Sloven employee. Incredulity was also expressed at the commissioning of Mazars by NHS England. An audit company, FFS. I mean why not commission an independent outfit who understand the healthcare world. Like, er, Verita, I assume… The disbelievers were distinct from the belieSHers as they snarled at us to publish the review. They at least seemed prepared to accept that a robust review existed.

Finally, there were the conspiracists. Jezza Hunt had orchestrated the leaking of this review as part of his wider privatisation plot. How could there possibly be so much news coverage and an Urgent Question in the Commons on such an issue, in such a short space of time? Wow. Like Sloven, a complete disregard for the content of the report.

These positions were contradictory, sometimes extreme and ill informed. For once we were able to step back and (almost) park the swearing, rage and frustration we’ve experienced and articulated for over two years since LB died. [Howl]. And calmly reply, over and over and over again;

The review is robust. It is complete. We have a final copy. We don’t know why it still isn’t published.
 

The trouble is, the responses above (including Sloven’s position) make visible the typical excusing and acceptance, even expectation, of shortened lives for some people. They point to accepted processes and practices of a publicly funded health and social care system that consistently discriminates against and excludes certain ‘types’ of people. And when these people die ‘unexpectedly’, a discounting of their deaths.

That there were three days of headline news and sessions in both the House of Commons and Lords on the back of the headline findings of a leaked report, suggests that that the findings of this review are hugely important to the wider public. Outside of the doubters, deniers and belieSHers who, well what do you know… are all firmly embedded within the healthcare world.

The review will be published this week.

*Of Mid Staffs fameimage

 

What a difference a day makes…

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Blimey. A right old trudge across pain filled terrain. Dotted with regular state sanctioned batterings. For over two years. Patches, drops and buckets of brilliance along the way in the shape of #JusticeforLB. Thank goodness.

And then yesterday. The Mazars death review leaked to the BBC. Less than 24 hours later a 35 minute debate in the House of Commons. Heidi Alexander, Shadow Health Minister, putting an Urgent Question to Jeremy Hunt. Love her. He ducked some answers and answered some unasked questions. The review methodology was sorted.

Sloven trended on twitter. Katrina Percy and senior colleagues went into hiding. NHS England left an out of office ‘publication by Christmas’ message. More than a 1000 families left hanging.

We’ve lived with the Mazars findings for a few months now. A report that, once read, leaves you in a space in which sense making is impossible. This is clear from the response to the tiny slice of it offered by Michael Buchanan’s excellent coverage. Debates in both the Commons and Lords earlier today demonstrate remarkable and unusual cross party concern, horror and engagement.

Sloven’s entrenched and ludicrous ‘it wasn’t us guv’ position compounds the seriousness of the findings.

BBC Breakfast coverage this morning included a video clip of LB, aged around 6, tangled up in his duvet. Peeking, cheeking and oozing happiness.

We’ve chatted a lot about what he would think about these latest developments. As we do. He’d have probably found the media coverage and parliamentary debates fascinating and important. Repeatedly (and I mean repeatedly) asking ‘Has the Mazars review been published, mum?’ and ‘Why not, mum?’

I don’t know what I’d have said to him, back in the day. I’d have probably dredged up some explanation/excuse and fobbed him off. Explained the delay away.

Now I’d say ‘Because they can and they do.’

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Slumber, absurdities and a tumbleweed collective

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The independent Mazars death review, just by way of a speedy update, was commissioned by NHS England to examine all deaths in Sloven’s learning disability/mental health provision from 2011-2015. The review is in apparently indefinite quarantine by NHS England under challenge by pretty much everyone and their dog.

[Well apart from Chunky Stan. Who, asleep on my feet is pouring his energies into extreme comfort using an almost winning combo of warm fur, being Chunky Stan and a snooze mechanism involving occasional deep/contented sighing…]

It turns out that Sloven made nearly 300 challenges/criticisms to the original draft of the Mazars (independent) review. Wow. 300 challenges? Unprecedented focus/scrutiny by the Sloves who, a week or so after LB’s death, publicly announced he died of natural causes and circulated a briefing about the risk my blog posed to their reputation…

Sloven

Sloven Board minutes. 23.7.13

[Someone recently said that Sloven made a big error in their early responses to LB’s death. Sort of suggesting the pesky mess our meddling campaign has uncovered could have been left untouched if Sloven had behaved better. I’m not sure how to begin to make sense of this so I’ll stick to what we know for now.]

Publication of the Mazars death review was delayed on the basis of Sloven’s challenge and an academic review into the independent review methodology was commissioned by NHS England. [I know]. NHS England also got an internal dataset expert to review the, er, data. [I know]. Neither reviews of the review have turned up anything changing the findings/recommendations of the original report beyond the odd tweaking.

We found out this morning that Sloven have commissioned their own review into the review. Hahahahahahaha. No. Stoppit. You what?…. Taking marking your own homework in the brave new NHS (fake) world of transparency and candour to unprecedented lows. Really??

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This postcard on our fridge repeatedly catches my eye as I reach for wine milk. We’re in a space of absurdities. A space unrecognised by Sloven, Oxfordshire County Council, NHS England, the Care Quality Commission, Monitor or the Department of Health. Evidenced by silence and in(non)action. A tumbleweed collective.

Erving Goffman talked about how much work is involved in awakening people to their true interests because their sleep is very deep.

Two and a half years since LB’s death and we clearly ain’t disturbing the slumber of anyone with any power to do anything. We can continue to try to ground the absurd though. Ground it in the human.

Here’s LB. Keeping watch on a Scottish holiday. No hint there may be trouble ahead. And why would/should he?
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A review of the review of the review…

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Nothing really to report.
Well other than candour, transparency, decency and humanity are well and truly missing from NHS England.

[Thanks to George Julian for the speech bubble text.]

Report finalisation and the National Death Service

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While writing about Devon days, life, loss and inhumanity yesterday evening, I received this email from NHS England:

Report finalisation:

Following a series of comments regarding the accuracy of methods of reporting to national NHS incident reporting systems, as set out in the Mazars report, Mazars have made some further amendments to their report.
 
Publication:
We have been working towards a date of publication w/c 7th December. However, this is now not possible. There is a meeting being scheduled for the 11th December, with Mazars and NHS England national team to agree publication date and process.
This will include the planning for support for families, who may seek information post publication.
 
ERG will be sent final report ahead of publication, together with the communication handling plan.
 
Kind regards

 

ERG stands for Expert Reference Group.
WTAF stands for What the Actual Fuck?

Er, why has the publication date, process and planning support for families not been organised before now? How can further delay possibly be necessary? The report content was known in the summer. The full version circulated at the beginning of September. Why is a meeting with Mazars necessary to arrange publication date? They were commissioned to write a report. They’ve written it. It’s up to NHS England to decide on a publication date.

NHS England who fell over themselves to publish the (crap) Verita 2 report they also commissioned six weeks ago now. With no scrutiny.  They have pored over the Mazars review with microscopic intensity. Prevaricating, posturing, ignoring the significance of what this report represents and the right of the public to know. To know that our national health service has acted as a national death service for a group of people. In full view.

Scandalous, harrowing. Unforgivable. Sloven may have rushed to buff up their dire practice with a shedful of new processes but the delay in publication allows similar practice in other Trusts to go unchecked. For the deaths to continue. Extraordinary.

The problem is, I think, that these lives (and deaths) are not considered worthy enough for the magnitude of the scandal the Mazars review reveals. Does that make sense? Learning disabled people can’t be allowed to disrupt the complacency of NHS England, Sloven or the CQC. It’s almost an embarrassment. Particularly after the Winterbourne View faux activity. And talk of transforming care. All that handwringing, those national programmes, endless meetings, croissants, and fuck knows how much time, money and the like. While an NHS Trust quietly went about its business burying all the bodies.

I wrote yesterday about not knowing how I would ever get out of bed on Sunday after remembering what life used to be like. Today I’m supposed to go to a meeting in London. But I can’t get out of bed.

I feel ill.

Those husky dogs and Devon days

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“Do you remember those husky dogs we saw running wild a while back, Rich? Loads of them… Where was that?”
“That holiday in Devon. Remember we were walking back from a pub lunch along some trail. The kids went back on the other track…”

This was on Sunday morning. In bed. I lay there in the half dark feeling like my breath had been stolen. Wrenched from me by being unexpectedly pitched into a memory I hadn’t meant to seek out. That long ago? Really?

I remembered the rain, the fresh air, the fun, the boredom, the lack of sun. I remembered us all just being. Chittering, bickering, bantering and loving. Hanging out. Chunky Stan took to swimming in the sea having been resolutely opposed to getting wet until then. I told Rosie off for using my umbrella to collect sea water for a sandcastle she built with Tom in between showers. We had fish and chips in Appledore and chuckled a few years later when we watched a documentary about The Jacksons house hunting there. And we squeezed into the little living room to watch the Olympics when it was simply too wet to go out.

Lying there I felt intense grief. I call it grief but that’s just a label. A word. I felt an intense agony, a feeling impossible to describe. There are no words. I’d forgotten about that pub lunch. About the walk back when we watched the kids running along, in the distance. How they made sure LB kept up. And the huskies that randomly overtook us. Making a bolt for freedom.

I missed LB so much I wondered how I would ever get up again.

I think about him constantly, in a sort of ‘careful’ or maybe self managed way. I have a whole set of (almost) distractions and strategies to make living bearable. This was unguarded thinking. Laying bare the reality of living after the death of a cub. One who died in the careless and relentlessly brutal hands of the state.

Being thrown momentarily back into that space made me realise how I’ve got used to living with pain over the last two and a half years. A pain made so much worse by the actions of Sloven, Oxfordshire County Council and now NHS England. The health, social care, commissioning triumvirate. Taking it in turns to kick the boot in. There’s still no publication date for the Mazars death review. Delay, after delay, after delay. Any talk of candour or transparency, of listening to families, of mortality review functions, of a shiny new independent (NHS) investigative body just makes me want to weep. And rage.

‘Stop talking shit,’ my brain snarls. ‘Just stop making it so much worse.’

I had an email from the police this afternoon. An email that was thoughtful, straightforward and kind. No messing, no prevarication. Just human.

Like those Devon days.

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Bumping into Phil on the way home

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“Hey Sara!”

“Hi Phil. How you doing?”

“Quite good really. I took a case against the DWP and I won.  I was so short of money it was pretty disastrous for a while. But I won. And they even backdated it.”

“Ah. Good for you. That must be a relief.”

“Yeah. How are you all? I hope the ‘victory’ of LB’s inquest is keeping you all.. erm, buoyed in some ways.”

“Mmm. Not great really. We’re waiting for the publication of a report NHS England are sitting on. Giving Sloven wriggle room as usual about their craphole provision.”

“Oh. That’s not good.”

“Nope. Typical establishment bastards. Anyway good to see you and good to hear your news.”

“Yes…. Sara.”

“Yep?”

“We will win one day. We just don’t know when that day will be.”
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Shiny new policies, ducks and ‘learning lessons’

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The ‘learning lessons’ tripe regularly spouted by NHS Trust representatives in the wake of a negative report, inquest or otherwise (typically not in response to the harm caused to a person and their families) really naffs me off. We learn all the time. LB’s death wasn’t a ‘lesson’ to be learned from. He shouldn’t have died. Simple as. A point brilliantly made by AnneMarie Cunningham yesterday in a talk to a group of psychiatrists. To use ‘lessons learned’ in this context trivialises and further dehumanises LB (and everyone else who has died or experienced serious harm). Particularly when crap all is actually learned.

After the first review into LB’s death (Verita 1) was published, back in the day it made several recommendations around epilepsy care. 18 months later, during LB’s inquest, it was clear that Sloven staff members giving evidence had learned little about epilepsy. This didn’t stop Sloven’s Medical Director talking the talk about shiny new epilepsy policies and toolkits at the end of two weeks of harrowing evidence.

Similarly, when Sloven (eventually) realised that they were in a teensy bit of trouble around their response to deaths in their learning disability/mental health provision (a good 16 months after they knew an independent investigation was commissioned by NHS England), they started talking the talk about their mortality policies and processes. The Sept and Oct 2015 board papers include 65 and 70 mentions of SIRIs (Serious Investigations Requiring Investigation) and mortality respectively. There were 8 mentions in the June and July papers.

‘Wow. That’s good. They are taking the Mazars review seriously,’ you may be thinking.

Mmm. They are clearly taking it seriously. But I suspect the it is an unprecedented threat to their reputation. Evidenced by remarkable challenges to the content/publication of this review which remains under wraps somewhere in NHS England. If Sloven can’t bury or somehow influence the review, they will want to line their ducks up to try to distract attention from the brutality of their practice up to now.

Various changes – a central investigation team will now oversee investigation and learning, training and implementation of a new electronic investigation system continues, 50 investigators attended a 2 day investigation training course in November, so on and so on – must be in place and operational by the time the shit hits the fan. [On my more cynical days I can’t help thinking this delay is enabling these ducks to be better placed for buffing and final shiny distraction attempts. Easing the inevitable discomfort felt by pretty much every organisation involved in this scandalous and inhumane tale].

But hey ho. Sloven remain all talk and little real action. The December Board papers record that an inquest into a patient who used their mental health services was adjourned on Nov 11th until January 26th 2016. The quality of the SIRI reports provided by Sloven and Hampshire County Council were [still] not good enough. Another family facing the torture of further delay – across Christmas – caused by Sloven (and local authority) disregard and carelessness.

Their shiny new focus on SIRIs, candour and involving families can be tossed in the nearest skip. It doesn’t translate into action and they don’t give a shit about what really matters.

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That old devil called Mazars again

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Heard this afternoon that there is more delay around the publication of the Mazars death review because now the completeness of the data the investigation team used is being questioned. There has already been an independent academic review of the methodology used but this review didn’t cover the completeness of the data. Ho hum.

Three or four weeks ago I wrote about the completely different treatment NHS England have meted out to the second review they commissioned, Verita 2, which had holes in its methodology you could post a tanker through (and, not surprisingly, uncontroversial conclusions depending on which side of the professional divide you sit). That review was published in a blink with minimal apparent scrutiny.

The Mazars review (unless a whole new set of data is suddenly found in some dark and dusty corner somewhere) has far reaching, harrowing and deeply serious implications and will (or certainly should) lead to swift and urgent action. It shines a light on beyond shameful practices and beyond the walls of the Sloven empire clearly demonstrates how the government response so far to the evidence we have of the premature deaths of a certain group of people is insubstantial frippery. Just tinkering round the edges while people continue to die and are swept aside. Carelessly.

It also shows how buckets full of courage are needed to effectively challenge systemic crap and that Mazars may be that rare beast. An independent organisation conducting truly independent, independent reviews.

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