Rich sent me a link to this story this afternoon. The Star Wars production company, Foodles, is being prosecuted on four criminal charges by the HSE for an incident in which Harrison Ford broke his leg. A year after LB died. He died.
[Howl].
Struggled a bit with the thought/context/rational for meeting Jeremy Hunt today, especially after reading Imogen Tyler’s powerful JusticeforLB post this week. The administrative grotesque. Highlighting how rituals like meetings and emails may expose the ridicule of people in power but perversely strengthen the legitimacy of the power holder. Shudder.
Disquiet in the Justice shed.
To meet or not to meet? How many meetings have we attended? What has actually happened? Other than ticking the ‘met the bereaved family/campaigners’ box. Reinforcing the the power of the meeting host while sucking the life out of #JusticeforLB?
Why have none of these NHS/social care meetings happened in spaces convenient to us? Or other families in similar situations? The administrative grotesque could be subverted by the powerful travelling to meet those who experience state atrocities. The brief meeting with the Leader of Oxfordshire County Council. And the impossibly briefer meeting with Monitor would have been a different experience without the six hour journey/cost involved. But nah. Meetings are firmly on the terms of those who wield the power. You make the time and stump up the emotional and financial cost to attend these or you don’t/can’t.
Expectations today were set firmly at low to ground level with that blooming hope light, the light that (remarkably and probably stupidly) hasn’t been fully extinguished, still flickering. He won’t… but he could.. but he won’t… but he could… flutterings of naivety.
Deb Coles, Rich and I met for a pre-pre meeting at the National Gallery café and thrashed out what we hoped to get from the meeting. We met Andrew Smith, our MP, in Portcullis House for a pre-meeting. Formulating more of a plan. And then set off, through the backside of Portcullis House to the Department of Health (or Death if you’re learning disabled).
At this point, spirits were reasonably high. We had a bit of banter from a Dept of Health employee who cheerfully snapped us outside the building. A before pic.
I’ll unorder the story at this point and leap ahead to the debrief after the meeting. Deb and Andrew (who were both superbly supportive and good company throughout the afternoon) offered the following reflections and cheeriness.
The meeting started 15 minutes late with the announcement it would need to finish in 30 minutes because of a voting commitment. Two pre-meetings worth of stuff to cover immediately compromised. Eek. Just how administratively grotesque would this be?
We started. Vaguely focusing on the five points Andrew outlined at the beginning. Pretty soon I felt despair at the futility of the discussion. Sitting in a comfy cream armchair in an office that is the stuff of dreams, with a couple of people doing something silently behind us, Jeremy Hunt listening carefully. When Rich summarised our experience of Sloven shite across 2.5 years I wondered how these words could possibly be spoken without some immediate action; criminal, regulatory, resignatory or otherwise. The brutality of the experience remains extraordinary in the lived experience of it but also the non response to it.
A few hours later, sitting on a train to Cardiff with a lukewarm plastic glass of wine, I’m beginning to make better sense of it. Here’s my half formed thoughts:
JH was firmly in a space of making some innovative and committed changes/approaches to improving patient safety and changing NHS culture around safety. A bit too heavily focused (uncritically) on learning from the aviation industry for my liking but clearly passionate about improvement. The trouble was he subsumed the issues thrown up by the Mazars review into these more generic changes to NHS culture.
We were arguing that the lives and deaths of learning disabled people (and people within mental health settings) in the NHS demanded increased scrutiny particularly given the Mazars findings. If a group of people are consistently dying prematurely some sort of national mortality review board/ independent investigation mechanism is essential (unless we all agree that shit just happens… to, erm, particular people).
The meeting was brief and pretty forthright. The action points JH decided on involved some revisiting to check originally actioned points arising from the Mazars review were as robust as they could be, looking closer at the actions of the Sloven senior team and making sure the CQC inspection regime takes a more holistic view of people’s lives and aspirations.
Was it a good meeting? No comment.
During a departmental meeting today, a colleague gave a talk about a project he is involved with; Human Resources for Healthcare in Africa. Part of this work is focusing on how to reduce the shocking mortality rates of children under 5 in Mali and Uganda.
He talked about the drop in mortality rates that emerged as an outcome of the setting up of the Confidential Enquiry into Maternal Deaths in the UK in 1952. Setting up an enquiry into deaths in Mali and Uganda seems to have, similarly, led to a drop in mortality rates. One reason being that once healthcare professionals knew that these deaths would be investigated, they started paying more attention to the care they provided.
Leaping to this talk from mundane discussion around office moves and desk space left my head spinning.
…once healthcare professionals knew that these deaths would be investigated, they started paying more attention to the care they provided.
As simple as.
Meanwhile, in the UK, talk of setting up national board to look at the premature deaths of learning disabled people after the shocking mortality rates identified by CIPOLD was watered down into a mortality review programme. Seemingly serving a ‘pointing to’ function. ‘Look… Bristol University are doing this.’
…once healthcare professionals knew that these deaths would be investigated, they started paying more attention to the care they provided….
And once health and social care professionals/organisations witnessed the abject lack of any substantive action by the government response to the Mazars findings they all got a symbolic ‘get out of jail free’ card.
No reason to pay any more attention to the care provided.
Business/death as usual.
Lengthy twitter discussions earlier today following on from news of the 80 bed unit planned up in the North East, blogged about by Mark Neary yesterday. The proposed unit is to be run by the same manager of the Lenore Care Home in Whitley Bay which had a pretty positive CQC inspection report in June 2015.
The two sides of the twitter discussion today can be summarised (roughly) as:
This home is well run, ‘residents’ reported good quality of life and the proposed unit could be equally as well run for people to lead independent lives without becoming isolated in the community.
The CQC report findings don’t capture anything approaching a typical home and it ain’t remotely likely that the proposed new unit will be ‘home like’. It represents a return to institutionalisation.
I wrote a post soon after LB died about accepting the unacceptable. Something people, parents, carers, health and social care professionals do. For different reasons. The unacceptable becomes unremarkable and the norm. And we use different criteria to judge the treatment certain people receive.
So let’s have a closer gander at this inspection report. Thinking about what is typical for many/most people. Rather than typical for a few.
The 23 bed ‘care home’ has 21 people, a manager and three staff on during the day, two staff on sleeping over duty at night. I assume there’s a range of different aged people living there. Learning disabled people tend to be lumped together in an ageless way. Which is pretty grim.
The inspection involved observation, interviews and reviewing documents. There are a lot of positive comments; friendly, supportive, well trained, supervised and informed staff. People were clearly supported to attend health appointments and the manager was praised by people. There was a dog that one person looked after to learn about keeping a pet. All good.
A big part of the dispute on twitter revolved around the clear lack of available support to enable people to go out and about. Such a small number of staff meant that, if people weren’t able to take themselves off, they’d be stuck indoors. We don’t know how many people were able to go out without support from the report. An important omission.
Alarm bells rang for several reasons:
You can read into this report that a small bunch of good staff, lead by a thoughtful and competent manager provide a (pretty much safe) and well run outfit. Or you can think about people’s lives. About potential, aspiration, social interaction, fun, work, engagement, holidays and so on. Most of which seem to be absent.
Has everyone got fingerprint access to come and go? Why has no one got their own laptop or tablet, and is there no wifi? Why, if the aim of the home is to prepare people for independent living, is no one involved in shopping, cooking or choosing food to prepare/cook?
Why have none of the 21 people got advocacy support? Surely some would need it?How can the provider be in charge of people’s finances without external scrutiny? How can people never leave their ‘home’ and this not be queried? Does anyone go out in the evening (the emphasis on the buzzer situation suggests people stay in/in their bedrooms)?
How much PRN (which is typically sedative type stuff) is given to people and how often? And why are no social activities recorded other than personal hygiene activities?
Oh, and the biggy. Why are 21 adults living in a ‘care home’ in the 21st century?
Nothing in this report suggests anything approaching what I would describe as home life. Quite the opposite. Which raises the question; how often do CQC inspectors use the unacceptable as the bar for good, or good enough, when it comes to learning disability provision? [And the answer should not involve mention of ‘experts by experience’].
We’re a reasonable bunch in the Justice shed. [Yes, really]. And we pride ourselves on remaining reflective about and engaged with the constant shite we’ve experienced over the past 2.5 years. We’ve absorbed the slurs, the smears, the deceit, the obstructions, the bullying and the wilful refusal by anyone involved to take responsibility for (or even care about) LB’s death and the hundreds of other deaths that happened under Sloven’s watch.
The extent of Sloven failings get worse on a weekly basis. We’ve now seen first hand the utter incompetence of the CEO and Board. A spectacle that continues to make me feel queasy when I think about it. We know that NHS England, the CQC, Monitor, the Department of Health, Oxfordshire County Council and Clinical Commissioning Group lack the guts (individually and as organisations) or interest to do anything substantive. There is no Monitor Improvement Director. We know Mencrap is about as far removed being the ‘voice of learning disability’ as is humanly possible.
We can remember the numerous organisations that rushed to sign up to the… er… [scratches head] Winterbourne Con… Winterbourne Con? Con something. And can only guess at the money the Dept of Health flushed away on this ill thought out and useless endeavour. Followed by other incarnations. And croissants. A resounding fail. Leaving countless people suffering. And dying.
The ‘official’ response to publication of the Mazars review revealed everything we need to know. Certain people simply don’t count. Deaths schmeaths. Transforming care plans in tatters and more news emerging this week of re-institutionalisation by the back door.
So. To stop all this tedious and repetitive talk, wasted resources, increasing breakfast waistlines and empty dialogue with grassroot movements, here’s the first draft of an agreement for Trusts, CCGs, local authorities and the various regulatory organisations, Dept of Health to sign. [Lifted from a cleaning contract template..]
This agreement is made between _________________, [NHS Trust, CCG, local authority, Monitor, CQC, NHS England, Department of health… (hereafter known collectively as the Public Sector) and __________ (hereafter known as the public).
The Public Sector agrees to the following:
1. An acceptance that learning disabled people will die early and their deaths do not warrant investigation unless the circumstances are extraordinary. [There are currently no examples of extraordinary. Please contact the Public Sector for updates on Never Ever Ever Events.]
2. An acceptance that learning disabled people shall continue to be ‘placed’ in ‘living arrangements’ typically at the whim of local authorities/commissioning groups.
3. An acceptance and agreement that these living arrangements should be dictated by budget and efficiency. [The bigger the better the guiding principle here.]
4.The Public Sector shall herewith stop pretending to support and ‘care’ about learning disabled adults.
5. Services to be performed by the Public Sector are to be lowest quality at lowest cost possible. These will typically not include any of the following: going out, encouraging community participation, fun, ambition, delight, encouraging and supporting employment, relationships or a proper home, engagement with families, effective healthcare or investigation in the instance of premature death.
The Public agrees to the following:
6. Sucking up their unrealistic expectations and stop banging on about inadequate, unsafe and poorly funded non care.
7. Either party may terminate this agreement with written notice to the other party.
In witness to their agreement to these terms, the Public Sector and Public affix their signatures below:
_____________________________________
Public Sector signature, date
_________________________________
Public Signature, date
Any additions or amendments to the above welcome. Would be good to get this sorted in time for our meeting with Jeremy Hunt on 3 Feb. He could be the first signatory.
I weep.
I don’t understand how LB is dead. [Dead??]
I fucking despair at the non(sensical) action by Department of Health, Monitor, NHS England, CQC, OCC and the various CCGs.
Before and after LB died.
Before and after publication of the Mazars review.
I despise Sloven’s consistently shite practices, fakery and arrogance.
The pointlessness of Mencap.
I don’t understand how LB is dead. He drowned. In specialist NHS provision. No accountability. Nothing.
I just don’t get it.
News today of another inquest in which the coroner identified failings in the ‘care’ provided to Louise Locke by Sloven. This inquest was delayed a few months ago after the documentation provided by Sloven was incomplete. Classic Sloven incompetence (or worse) that generates more pain. Nothing like having your mum’s inquest bumped to the new year because the Trust who couldn’t look after her in life continue to fail her in death. Nope. Nothing like it.
Anyway, Lesley Stevens was back on inquest duty. I can’t imagine how she gets out of bed of a morning given the awfulness she must sit through and defend on such a regular basis. Still, she gave the typical Sloven corporate speak end of inquest statement about lesson learning and yadiya blah bleurghdy bleurgh stuff. I’ve pulled together a table detailing a selection of these post inquest statements taken from newspaper coverage over the past two years or so. (And it’s probably worth another butchers (and a weep) at Rich Watt’s post about lesson learning from two years ago now.)
Learning lessons
What’s interesting here is both the emphatic insistence that lessons are learned and the immediacy with which Sloven claim to act; Immediately after her death; We have already undertaken a number of actions. Bearing in mind it takes months or typically years for inquests to take place these are strong claims indeedy. I remember Lesley Stevens talking the coroner and jury through the Sloven (apparently already) implemented improvements off the back of LB’s death at the end of his inquest. Fran was sitting at the back of the public gallery gently prevented by loving mates from repeatedly shouting out ‘That ain’t true. That’s not happening…’
What have they learned?
So what have they learned? Clearly very little. You can distill down the various shiny lists produced for the various coroners to a small number of categories; family involvement (red), staff training/risk assessments (blue), record keeping (mauve), care coordination and communication (green), clinical leadership (orange) and better decision making processes (brown). There are no new and dramatic lessons being learned here. Quite the opposite. Tired old non lessons that limply lie next to the dominant and empty vital and immediate action claims.
What will this achieve?
Then finally. The transformation claims. Less evident in the media coverage (thank goodness). If Sloven want a quick win from this brief analysis it’s ditch the big claims of improvement. Awkward. Embarrassing and fallacious.
What does all this mean? A few thoughts:
We’ve started to regularly discuss the futility of repeatedly making this shite visible only for it to be ignored. Busker John called round earlier and Rich said two or three times ‘Hey, tell John about the latest this, that and the other..’ Each strand of telling was worse and worse. Mencap gate. Louise Locke’s inquest.The latest (not yet public) whistleblowing detail. Harrowing stuff.
‘Blimey’, I said. ‘Imagine coming round and us just saying something like ‘Wow. Lovely sunshine outside…’
‘But it never stops,’ replied Busker J. ‘There’s always something new…’
Yep. And nothing ever happens.
I went to Helsinki this weekend. To catch up with my mate Ulla and her cheeky kidlets. The sea was frozen. There was a blizzard. And on the rooftops workers shovelled snow. Protecting pedestrians from risk of ice falls.
It was fun. It was blooming cold. A different landscape. Frozen sea. Frozen sea. Ice bucket lanterns. Life organised in negotiation/engagement with extreme weather conditions.
In a blink I was back on the coach to Oxford. No snow. My phone working again. A text from Agent T alerting me to papers for the Sloven Governors meeting. Over a hundred pages. I half skimmed them, blearily peering out of the window at the passing motorway. Dull. Damp. Dark. No snow.
Among the jargon filled pages was a statement from a Mencap appointed governor. An extraordinary statement that went unchallenged at the time and was published in full in the minutes (p18). We should take comfort from the gap in training LB’s death has made visible and this could be an opportunity for Sloven to fill this gap. Followed by yet another non apology from the Board chair.
On behalf of the Trust, Mike apologised for the failings in care that had led to Connor’s death”.
I don’t know. I don’t know if Sloven are just uber shite or whether this level of unreflective, stupid, ill formed, half arsed minuted (and agreed?) commentary is typical to most Trusts. I hope the former because if it is endemic we are all fucked.
Meanwhile, a hastily (half) convened gaggle of Monitor/CQC bods with clipboards pitched up to vaguely look at the Sloven roof tops after publication of the Mazars review. Half wagging fingers at teetering snow. Empty gesturing. Missing the point. Deliberately missing the point. Which is almost too awful to contemplate…
It really doesn’t matter that certain people die [die?] early.
[Apparently three Sloven governors resigned at their meeting yesterday. And there is more whistleblowing afoot. Thank you].
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.
Warning: upsetting content…
A coroner concluded that 24 year old Sarah Davies died of natural causes due to unknown origin this week. She was found dead in the Tarry Hill ‘care’ ‘home‘. The pathologist originally said she died of SUDEP (sudden death through epilepsy) but changed his mind during the inquest and said her death was unexplained. He admitted he hadn’t sent samples of Sarah’s brain for further analysis as he should have done. Sarah’s family are understandably distraught to not get any answers from her inquest. [Matt O’Donoghue live-tweeted the whole hearing. It’s harrowing reading. And uncannily similar to LB’s inquest.]
When it emerged there were serious omissions on the part of the pathologist at Sarah’s inquest I was pitched straight back to the week after LB’s death. That baking, baking, long, hot summer when our lives were shoved into a black hole of insensible grief, horror, anger and incomprehension.
Charlotte, our newly appointed solicitor, working with INQUEST, advised us to make sure the pathologist followed the guidelines for patients with epilepsy. Unimaginable phone calls. A house full of people. Flowers. Tears. And terrible decisions to be made. He hadn’t. He hadn’t? They were ‘just guidelines’. I still can’t write much about this episode.
Some emails from this time …
The reason I mentioned a second post-mortem is because the current cause of Connor’s death is unascertained and it may be that a different pathologist could assist in providing further clarification, or it could be that Connor’s case is one in which the post-mortem examination itself cannot provide clear answers. I am sorry to be so blunt but I want to be sure that you can make an informed decision. (received 10.7.13)
In terms of a second autopsy, Connor has been moved to the funeral directors and we’re reluctant (though would if it would make a difference) to have a second postmortem. (sent 11.7.13)
I did say to the coroner that the guidelines are written with a view to persuading family members who may be resistant for whatever reasons to the sampling of the brain tissue and we weren’t consulted. (sent 12.7.13)
After a bit of a battle with the coroners office because they were reluctant to do anything, they’ve taken the brain tissue sample and Connor is now back at the funeral directors, thank goodness (my levels of what is ‘good’ are so low after this latest mess up). (sent 12.7.13)
[Howl].
When LB died I’d been blogging about him and we were given advice via twitter about what steps needed to be taken. I’ve not revisited the failed post-mortem thing since. I can’t imagine how Sarah’s family must feel. No answers because essential tests weren’t conducted.
Just because.
Because Sarah and LB’s (and many other) lives simply don’t count. And in death they aren’t worthy of the typical and expected scrutiny applied to others.
It’s inhumane families have to fight to get answers in these circumstances. And, if they ain’t armed with the relevant info, the space to get answers or accountability is severely compromised by (further) crap actions by professionals. We shouldn’t be policing whether post-mortems are conducted properly. Or be consigned to a netherworld of no answers when this well documented process is cocked up by professionals on inflated salaries and no whiff of accountability.
I’ve not got a typical punchy demand some action end bit here. With a hefty swear or two.There doesn’t seem any point. I’ll just end with another email extract from that week.
I think this search for answers/campaign or whatever it is or becomes, is important. (sent 12.7.13)
mydaftlife 