Experiencing Mazars, fuzzy boundaries and rank closing

Posted on January 17, 2016 by sarasiobhan

I was working through the open docs on my computer yesterday evening and came across a PDF called 2642_001. It was one of the numerous docs we received the week before LB’s inquest began last October last year. At that point (intense stress, distress, fear and anxiety) I skimmed through them.

I couldn’t remember this particular document. Discovered by a Sloven IT bod, buried in the dark and dank basement of the RiO system. RiO, of course, was the focus of many a boring and repetitive moment during LB’s inquest. [I’ve heard on the leak line that Sloven are currently trialling a new version of RiO… How much money, time (and lives) have been lost through such a clunky and craphole piece of software?]

LB was listed as living in Tadley, Hants. In stark contrast to the scrutiny Sloven placed on the Mazars review. Accuracy aint necessary in generating learning disabled patients records. Address? The moon. Diagnosis? Anything and everything to do with early (natural) death inevitable. His discharge date was 4.7.13 and discharge method ‘6-Client deceased’. [Howl].

Someone we’ve not heard of before ‘diagnosed’ LB with various things in this document. The speed of ‘cover up and protect’ activity very apparent here. Like the ‘Mother’s blog briefing‘ circulated within 24 hours of LB’s death.

Astonishing for so many reasons. But not surprising in light of the Mazars findings. Careless reporting of and burying unexpected deaths. Constructing ‘best case scenarios’ (i.e. nothing to see here). The Sloven way. While raking in vast sums of money to ‘provide’ care on a weekly basis. The cost of LB’s stay in STATT was around £3500 per week. PDF 2642_001 details he received 1 of a possible 40 specialist assessments. The Incident Management Assessment (IMA) we eventually received via the coroner [Sloven have right old sticky paws when it comes to disclosing any information] states that LB’s seizures were rare and nocturnal.

Fabrication. Fabrication. Fabrication.

Reputation. Reputation. Reputation.

The Mazars review

There has been no real action taken in response to the Mazars findings. Publication just before Christmas was cynically timed to facilitate deep burial of bad news. There’s no other explanation. The findings clearly present failure at Board level, a carelessness and disregard for particular lives and an unknown number of deaths which could have been prevented if earlier deaths had been investigated. A breach of human rights on an unprecedented scale in NHS provision.

According to the Monitor CEO who I met very briefly with this week if the CQC flag up any issues on their unannounced inspection in the next two weeks [I know] they will consider action. In the meantime they will stick an Improvement Director in Sloven towers. There’s no other information about this Improvement Director.

Sloven meanwhile appointed an ex-Monitor Regional Director to their board this month. Fuzzy boundaries and all that. The stench from sordid and sneaky ‘deals’ seemingly conducted behind closed doors so depressing. I think one of the resounding sadnesses in the Justice shed is how much this experience has exposed (for us) the level of collusion, stitch up and corruption that operates (without check) within these publicly funded bodies.

We received a cheeky copy of Slovens internal briefing about the ‘unannounced’ CQC inspection last week [thank you]. This briefing can be summarised as ‘get the posters up, all hands on deck, persuade staff not to take annual leave till Feb and crank up the quality of death reporting which is still rubbish’. Farcical fakery and nonsense.

We’ve now had 2.5 years of Sloven dealings. Setting aside our personal experiences, documented at length on these pages, Sloven are clearly a ship with shite leadership at the helm. Board member performance (apart from some non execs) at the extraordinary board meeting on Monday was truly excruciating. The CEO, whose only connection to leadership seems to be the number of times she mentions the word, repeatedly deferred to the Chief Operating Officer who cooed beside her awkwardly. When asked directly how he felt about being cosied up with the leadership trinity of Percy, Petter and Grant, he broke into an overly long speech which included the word ‘proud’ so many times I expected the Dambusters film score to burst out from some hidden speaker in the cramped and heated room.

You could argue (and I’m sure that the Monitor/CQC/NHS England trinity have) that being faced with a room full of raging members of the public after publication of an incredibly damning report can only be unsettling. But there’s no evidence of effective Sloven leadership in any setting/context. A focus on expensive nonsense like the ‘Going Viral’ programme; an inability to see that they are spending money on crap consultancy; minutes and quality and annual accounts you can drive an Eddie Stobart truck through; recorded performances online that are unconvincing... The list is endless.

A favourite in the Justice shed – Woman on all Fours – is just one example of this:

Humour aside. It’s clear that people are dying early and unexpectedly in this organisation. Denied the opportunity to lead everyday lives. Doing stuff that other people just do.

Sloven routinely ignore and cover up the deaths of certain people. We know this. And this is apparently acceptable across NHS England, Monitor and the CQC. Perhaps it’s time for some honesty (candour and transparency) across these publicly funded bodies. Either have the guts to say that some lives aren’t important and if these people die early, that’s fine.

Or fucking do something about it.

Explaining #JusticeforLB to a child

Posted on January 6, 2016 by sarasiobhan

Well LB was a bit older than you. He was very funny, loving and loved buses and Eddie Stobart lorries. He got upset and a bit low when he was 18 and ended up in hospital. It was a special sort of hospital. It cost more money each week for LB to stay in that hospital than most people earn in a month. It was run by a bit of the NHS called Sloven. The NHS is supposed to look after everyone in this country when they are unwell.

It turned out that Sloven didn’t really care about patients like LB. Or care about some of their staff. Staff became fed up and some became pretty rubbish at their jobs because of this. They stopped looking after patients properly. LB had a thing called epilepsy which meant he could suddenly pass out. Staff knew this but the doctor in charge told them it wasn’t a problem.

One day LB was in the bath alone (which he shouldn’t have been) and passed out. He went under the water and died. We felt our world had ended. Sloven pretended LB would have died anyway. They said he died of natural causes. But people don’t usually die in the bath (or when they are 18). Instead of being able to feel sad and think about our beautiful boy we had to fight to get Sloven to admit LB died because they didn’t look after him properly.

Sloven refused to do this and the people, like NHS England or Monitor, who were supposed to make sure Sloven did the right thing didn’t. Nobody who should have sorted this out, did anything. Usually when you work you have a boss who makes sure you do your job properly. And your boss has a boss. It turns out, in the NHS, the bosses of bits of it can do whatever they want. The Sloven boss, called Katrina Percy, and her senior team just carried on behaving badly.

We were worried some other people might have died because they weren’t cared for properly like LB. The boss of NHS England agreed to pay for a review into other deaths that happened in Sloven’s care.

Meanwhile, a lot of other people, all sorts of people, joined in the fight to try and get Sloven to take responsibility for LB’s death. They did all sorts of brilliant stuff. Sports stuff, music stuff, they made films, animations, held cake sales, did embroidery, gardening, drew pictures of buses, flew flags, put LB’s name on buses and trucks and all sorts. Lots of people began to know who LB is. There was lots of fun, love and happiness about LB and people like him.

The trouble is, all this fab stuff didn’t stop Sloven behaving badly. They lied to us (and others) and tried to stop us finding out what happened to LB. They spent more money than some people earn in a lifetime on lawyers to do this. Money paid for from people’s taxes. Luckily, some brilliant human rights lawyers and barristers helped us. The inquiry into LB’s death, run by someone called a coroner, found that LB died because he wasn’t looked after properly. He should still be alive.

The report into the other deaths also found that Sloven didn’t care about lots of people like LB. When they died suddenly Sloven said they died of natural causes and didn’t try to find out why they’d died. Sloven were furious about this report. They said it was rubbish and tried to stop people reading it. Then they argued that other bits of the NHS were just the same. Allowing certain people to die early and then say it was natural causes.

We think Sloven don’t really think that LB and people like him are proper people. That’s why they didn’t do anything when they died early. Like a lot of things, they’ve got this completely wrong. We just need to work out what to do about it. Because LB’s death has shown us just how badly some people are treated in this country. And how those people whose job it is to actually do something about this, don’t really care either.

A bunch of pests… and humanity

Posted on December 21, 2015 by sarasiobhan

Chatting with Rosie earlier. She reflected on how, after 2.5 years of (relentless) campaigning, things had really started happening over the last two or three weeks. Various people also sent emails/messages to the Justice shed today, including Andy who wrote…

What a bloody brilliant thing to see front page of The Guardian. So just to reflect – in the space of about 10 days you made front page of The Guardian and The Mirror, loads of lead stories on all the big BBC hitters (and the ITV ones), triggered an urgent parliamentary debate and, most importantly, brought together 337 hand-crafted colourful, brilliant gingerbread men to remind everyone that this is lives we’re talking about, not statistics.

Not too bad for a bunch of pests eh?

guardian front page

Yep. It is bloody brilliant. And we have been relentless. It has been a relentless campaign. Luckily dotted with laughter, spectacular contributions, solidarity, magic and more. At the same time, instead of (hideously, over complicated, inefficient and costly layers of) quality assurance/regulatory processes uncovering this scandal, it took ordinary people to just say ‘Eh. There’s a strong whiff of something wrong here. It needs investigation.’

It’s obscene that we’ve had to fight so hard to get this far. It ain’t our job to do this. Far from it. We should never have had to have spent the countless (countless) hours we have working to get some sort of accountability and justice. None of us. I can’t imagine what the collective salary is of staff in Sloven (and other Trusts), NHS England, the CQC, Monitor and the Department of Health who should have spotted that people were dying way too early, with no investigation into the cause of their deaths. [Howl].

Why didn’t they? The findings of the Confidential Inquiry into the Premature Deaths of Learning Disabled People (CIPOLD) was a pretty big red flag in 2013. The government decided to ignore the key CIPOLD recommendation and didn’t set up a national body to examine these deaths. A cracking decision. Leading to the eggy faces we’ve seen in the last week or so. With plenty more eggs lined up.

Mmm. This was after the public outcry about Winterbourne View and that embarrassingly expensive and ultimately pointless work programme that unfolded, painfully across a few years and then disappeared digitally after the election this year. Ouch. So many organisations/charities signing up to the ‘glory’ back in the day. And little or no public reflection on this collective failure… Astonishing. Meanwhile, people continue to live non lives (or worse) in these hell hole units.

Here in the J-shed we’re pretty battle weary, scarred and totally fucked off by the combination of a lack of integrity and guts, arrogance, dismissal, closing of ranks and suffocating overriding superiority that seems to circulate around the senior levels of the various public sector organisations and government*. The battle to publish the Mazars review just one example of this. Detailed at length on these pages.

For any of these salaried staff, particular those at senior levels, [excluding Katrina Percy and the Sloven Board who clearly ain’t human] there is no mystery here. As Tommy said in The Tale of Laughing Boy, it’s not rocket science. There’s a lack of understanding and recognition that people are just people. And that certain people shouldn’t die (conveniently?) years before other people. Stripped of humanity, dignity, love, respect and value. In both life and death.

The answer? I dunno. A good starting point may be to get over yourselves. Go and hang out with people who ain’t the same as you, your family and your mates. And start to recognise colour, diversity and difference.

L1017157-3

*There are clearly some brilliant people in these roles. Just many more who ain’t.

Doubters, deniers and belieSHers

Posted on December 13, 2015 by sarasiobhan

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;

Scratch your head with incredulity
Laugh hysterically
Get a cold beer from the fridge to cool down your forehead
Weep at the bottomless pit of money Sloven can seemingly throw at wriggling out of ‘tricky situations’
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 fame

What a difference a day makes…

Posted on December 10, 2015 by sarasiobhan

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.’

Slumber, absurdities and a tumbleweed collective

Posted on December 7, 2015 by sarasiobhan

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 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??

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?

A review of the review of the review…

Posted on December 6, 2015 by sarasiobhan

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

Posted on December 4, 2015 by sarasiobhan

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 7^th December. However, this is now not possible. There is a meeting being scheduled for the 11^th 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

Posted on December 3, 2015 by sarasiobhan

“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.