Another day, another delivery
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Category Archives: Laughing boy tales
Wight, wrong and mateyness
I went to the Isle of Wight Adult Safeguarding Board conference this week. Going to speak, meet, or be part of an event, as ‘LB’s mum’ or part of #JusticeforLB tends to be fascinating, depressing or a waste of bloody time. We’ve sort of learned, in the Justice Shed, that these things are typically about pomp and performance (and box ticking). Not substance. The Isle of Wight invite seemed different, the ‘invitee’ clearly seemed to get it and I went.
Graham Enderby kicked off the day. Talking about Harry and ‘the Bournewood Case‘. A remarkable story of (family generated) tenacity, guts and integrity. And wrongness. Leading to ground breaking changes. His story featured an early appearance by one of our favourite barristers. Human rights in action. Simple as. Graham socked it to the audience of 200 or so, health, social care and police bods, housed for the day in an enormous boathouse on the Cowes waterfront. Without artifice, excuse or fudging. The following speakers similarly demonstrated integrity by the bucketful. It was uncomfortable at times. Informative. And reassuring that professionals got it and were prepared to step up and say what needed to be said.
My bit was towards the end. Before showing The Tale of Laughing Boy I carelessly asked how many people had heard about LB or #JusticeforLB. I felt almost apologetic playing the film to such an audience a spit from the home of Sloven. They must have had a constant diet of LB, #JusticeforLB and the Mazars review for months now…
Less than half (easily) of the room put their hands up. One of those cartoon screechy brake moments. Really?
Re-watching the film, made this time last year, was a further bash in the chops. The naivety around the ‘reaching for the stars’ stuff. Back in the day. Pre inquest. Pre Mazars publication. Pre every other atrocity that has happened or continues to happen. In full view.
The lack of response to the Mazars review is scandalous. Jezza Hunt and his merry band of human factor/HSIB peeps are, at best, naive to believe, not care, (or just argue) that creating ‘safe spaces’ and a no blame culture within the NHS will lead to a reduction in the premature deaths of learning disabled people. This is simply absurd. And closes down any scrutiny of the systematic erasure of the lives of people who are clearly perceived to be expendable and burdensome within the NHS (and social care).
I was surprised by how people responded to the film/talk… Genuine distress, discomfort and talking about what action to take. I shouldn’t have been surprised. That low bar kicking in again. This is exactly how people should respond to hearing what happened to LB and the unfolding of events since. Something Jezza, NHS England, Monitor and the CQC have systematically tried to stifle.
I caught the ferry back with Graham. We shared stories, horror, outrage, atrocities and chuckles.
I wish there was similar openness, recognition and engagement from Jezza, CQC, Monitor and NHS England to what is now a clearly documented, evidenced and consistent happening. But what’s a few (hundred/thousand) learning disabled lives between mates?
Mencrap and block
Neil Crowther wrote a post this week in response to the picture of someone buried beneath shopping in a shitty doorway while their Mencrap support worker smoked a fag and chatted on the phone. Among the points he raised was the inappropriateness of Mencrap’s response to this happening. Distancing themselves from what happened, talking instead about “a photo on social media”. At the end of the post he raised a sensible set of questions.
The CEO, Jan Tregelles, responded to his post with an overnight blocking spree. Carnage among #JusticeforLB campaigners.
Dusting ourselves off this morning, we’re not left wondering where the voice of learning disability went so wrong.
The moon on a dick
Dear Moon,
Out of people to write to so thought I’d try the moon. Or a moon. Any moon really. Full or otherwise.
Jezza Hunt, the Secretary of State today made a speech about patient safety. He starts with ‘intelligent transparency’. Word rubbish. ‘Intelligence’ doesn’t mean anything other than fake measures of fake, plumped up fakery. LB scored below zero on ‘intelligence tests’ but beat the pants of most of us for getting stuff. For just being. But ‘intelligence’ carries weight. It’s a sought after marker of summat.
‘Intelligent transparency’ leads to action he tells us. And then goes on to explain how it doesn’t. [I know, just try to hang in there if you can…] Each NHS trust in England has been asked to self report their annual number of avoidable deaths. Yes. Self report. Mark your own homework. I think we can anticipate a chunky zero from at least one trust not 100 miles from here. And, even more absurd… the way in which each trust does this marking varies so there is no ‘national standard’. Across the, er, National Health Service.
Some may use an abacus. Some may use a mix of patient and local roadkill intelligence. Some may use quantitative or qualitative methods. Some may just count how many toenails they can ping into the bin in the corner of their office from their swivel chair. It simply doesn’t matter. It’s action. That comes from intelligent transparency.
What matters is that trusts are, at last, estimating avoidable deaths and being open about it.
There are a few Mikes involved in this new process. Richards and Durkin. A coming together of the Care Quality Commission and NHS England. Richdurk. An integral part of making the NHS the world’s largest learning organisation. [You gotta read some of this stuff for yourself, Moon. Sorry. There are sections that are so full of bullshit I can’t precis them…]
Picking up the speech from ‘A true learning culture must come from the heart … ‘ [not the tagline for a new Sunday night BBC drama but the actual words of the Secretary of State]. He talks about the suffering band of rellies who have cried out to him in frustration about the lack of accountability. Blimey. What a patronising and demeaning load of guff.
And he includes us in this shite with mention of Sloven. That painfully, awkward, 30 minute ‘meeting’ in the same (not safe) space as him allows him to nail us to his suffering family mast. We were forced to listen to him indignantly spout his human factor speak while he completely ignored our concerns that learning disabled people are being effectively erased.
[Families should be given a public health warning after experiencing the catastrophic death of a family member in an NHS setting. Alerting them to this parasitic leeching by public representatives who should actually be doing stuff. Instead of feathering their nests. And furthering their cult like causes.]
Turns out our attempts to get some sort of accountability for LB’s death is misguided. Bad mistakes can be made by good people and a ‘proper study of environment and systems in which mistakes happen’ is needed. And when patients are given an honest account of what happened alongside an apology, the impact is less litigation, lawyers and more rapid closure ‘even when there have been the most terrible tragedies’.
My arse.
The JezzRichDurkBromTit* version of human factors feeding into the new HSIB (Health Safety Investigation Branch) is simply absurd:
Affected patients or their families will need to be involved as part of the safe space protection. And while the findings of investigations will be made public, the details will not be disclosable without a court order or an overriding public interest, with courts being required to take note of the impact on safety of any disclosures they order. This legal change will help start a new era of openness in the NHS’s response to tragic mistakes: families will get the full truth faster; doctors will get support and protection to speak out; and the NHS as a whole will become much better at learning when things go wrong. What patients and families who suffer want more than anything is a guarantee that no-one else will have to re-live their agony. This new legal protection will help us promise them ‘never again’.
Er, sorry Jez, you made a bit of a leap there. Families want accountability. In the same way they want accountability when someone dies outside of the ‘safe space’ of the NHS. And how can you talk about a new era of openness in the same paragraph as court orders? Just barmy. Oh, and HSIB will only look at 30 deaths a year. And Jezza has decreed these will be in maternity services.
Intelligent transparency anyone?
Just boys and their toys.
*Hunt, Richards, Durkin, Bromily, Titcombe
Reservoir guvs and a random key
Still waiting for a reply to the letter I fired off to the Sloven governors at the beginning of the year. (Governors of NHS Trusts hold the non executive directors to account for the performance of the board and represent the interests of the public.) In a brief moment of optimism and with a ‘it’s a new day’ sort of (short lived) feeling. First post of the year in fact. It still took hours, and plenty of tears, to write. Silly me…
There is a complication for the Sloven governors, though. The thorny, triumvirate issue, raised at the extraordinary board meeting in January by a member of the public. He asked the question;
When will this Board purge Southern Health of the pernicious influences of Hampshire Community Healthcare?
There was no answer to the question of course. The board chair is also chair of the governors and one of the pernicious influences referred to. What are the Sloven governors to do? Step up robustly and represent the interests of the public? Or coast along ‘performing’ governorship for an easy life? I dunno. I’ve no idea why people choose to become governors or what the selection process is. Is it CV boosting? Altruistic? Fodder for showing off to family, mates and colleagues? An intention to improve practices?
Whatever, the Sloven bunch are dropping like flies caught behind sun ridden glass with a stinking carcass. Over a third of posts are currently vacant:
Mencap dispute there ever was a Mencap governor but Sloven insist on a Mencap vacancy remaining. Oh, and (at least) one of the Staff Governors has blocked us on twitter. Awkward, awkward, awkward*.
We’re moving offices tomorrow. I spent much of today packing. It was pretty upsetting as I kept coming across stuff about LB. Mostly official stuff; applying for benefits, core assessments from the pre-transition social worker [howl] and some more cheering #107day bits. I came across this envelope which had a key inside. No other info.
I packed it with the rest of the stuff despite strict instructions to downsize for the new building. I’m a bit of a hoarder but couldn’t help thinking we’ve more chance of finding out what door this key fits than answers to anything else relating to LB. It’s all so deeply, deeply wrong.
*For anyone thinking it’s wrong to name and shame the Sloven guv list here, these are public posts. LB died an unspeakable death in unspeakable circumstances. We all know this. I’ve not named (or blamed) staff below consultant level on this blog (not sure I’ve even named consultants but can’t be arsed to check). Until people who take on roles that involve holding people to account actually step up and act, crap all is going to happen. People will keep dying or experiencing barbaric and inhumane lives. I hope to receive a response to my letter from the remaining Sloven governors soon.
In the meantime, if anyone recognises this key and know what it unlocks, let me know.
‘Did you tell them LB had epilepsy?’
The other week I had another interview to do with ‘LB’s case’. He ain’t a case but he’s become ‘a case’. Nearly three years on. Not to us but to officials around us. I don’t think he even qualified as ‘a case’ for Sloven initially. He was less than human. Less than a case. Like the other 330 odd people who died in their ‘learning disability care’ between 2011-15. Tossed aside without consideration. A two bit non human service user with a pain in the arse mother who blogged about her son’s experiences.
The interviewer at one point asked me
‘Did you tell them LB had epilepsy?’
Eh?
‘Did you tell the staff in STATT LB had epilepsy?’
I eventually managed to breathe again, stop the tumbling tears and say, without swearing, that LB took daily medication for his epilepsy which we handed over to staff on his admission. Of course we fucking told them.
[I didn’t bother saying about the time we were phoned to ask if we had additional medication because they had run out, or that day in May when I told them, phoned them and emailed them to say he’d had a seizure they hadn’t recognised. Or that unknown to us, the psychiatrist went on to insist LB wasn’t having seizures…]
So. Yes. We told them… why the fuck are you asking me this?
I was embroiled in twitter exchange yesterday with Human Factor (HF) protagonists. An approach that focuses on learning not blame. I don’t know. I find the HF bunch a bit evangelical. And the whole idea that preventable deaths are ‘golden learning opportunities’ makes me feel ill. Unfortunately our ‘meeting Jezza Hunt’ experience was pretty depressing as he insisted a HF approach would lead to safety improvements across the board. Thereby improving the currently dire mortality rates for learning disabled people. No Jezza. Stop it. Just stop it. But he wouldn’t.
What is astonishing is the focus on protecting staff. Creating a safe space so staff feel they can tell the truth about what happened, about what went wrong. So that ‘golden learning’ can happen to prevent people dying in the future. Meanwhile, parents/families can be implicitly, or explicitly, blamed and crushed by the process.
Talking of which, 12 Angry Women premiered on Friday night at the Brighton Dome, packing a punch or ten. Edana Minghella, one of the writers, wrote a short piece about LB and composed a song; ‘The Mother’s Song’. Just astonishing. In a 10 minute piece, she wove together a combination of blog extracts capturing LB as a quirky, funny and much loved dude and ‘official’ commentary contrasting the brutality of what happened and what followed. It included the mermaids, Afghanistan, slavery, wanking, social media and toxic mothers.
There were three characters each of whom were performed brilliantly by Gem Bennington-Poulter (LB), Leann O’Kasi (me – bit odd saying that) and Richard Attlee (Generic Official Person). The latter was a mix of the coroner, Sloven, NHS England, the CQC, Monitor and Jezza rolled into one. You could hear a pin drop in the packed and boiling auditorium as the story unfolded. Tears. And more tears. And the song is simply beautiful.
Light in the shed
I wrote an ‘opinion’ piece for the Guardian about the latest Bubb stuff this week. Loftier heights than this blog without the swears really. I’m flagging it up here because I’m chuffed they asked and beyond delighted it’s had so many shares and brilliant comments. Learning disability hitting a mainstream groove. About bloody time.
Today we’ve an extended family trip to Brighton. To watch 12 Angry Women at the Brighton Dome. Edana Minghella, one of the 12 commissioned writers/artists, has written a short play and composed a song about LB. Her script and song are simply spine chillingly brilliant. And devastating.
Yesterday, Edana was on BBC Radio Oxford talking about the play. [From 10.48 mins here]. Having walked past an Eddie Stobart lorry on the way to the studio…
Turns out Mark Attlee who plays Kenton in the Archers is the Generic Official Person (GOP). I don’t listen to the Archers. But Edana nails the contrast between the chilling interjections by the GOP (a lukewarm brew of Sloven, NHS England, CQC, Monitor, Oxfordshire County Council, Department of Health, coroner) and the love and humour that is part of many families’ everyday lives.
A photo from rehearsals yesterday.
So LB will be on the stage tonight. Nearly three years to the day he was admitted into the unit. A big old hanky moment. But how blinking cool?
A sordid little fail tale
Back in the day (2011), a staff member wrote a letter to the Sloven CEO raising concerns about various things including safety. She concluded:
The CEO bounced the letter to the Associate Director of Governance who wrote back saying that there were concerns and unfilled vacancies in the governance team including a lack of suitably qualified health and safety leadership. An interim Head of Health, Safety and Security was to be appointed for 4-6 months.
This interim head was Mike Holder. A couple of months later, Holder resigned over concerns about Sloven safety culture. He wrote a report in Feb 2012 detailing these concerns:
At present it is my professional opinion that Health and Safety is considered an adjunct to the Trust’s core business rather and integral element of it. This assumption is based on my experience with the Trust to date, the lack of resourcing applied to the management of health and safety and information governance with regards to the maintenance of statutory records.
Blimey. Warning lights a go go.
But no. By this time the Sloven headlights were on an NHS organisation, the Ridgeway Partnership, 100 miles away in Oxfordshire which included the STATT unit in which LB died. Ridgeway had some chunky land icing to tempt outside Trusts (including Calderstones) to take it over.
The story can be taken up at this point by the shuddery Verita 2 report* which found that after Sloven ‘won’ the Ridgeway in November 2012, the roadshow bolted back to Sloven towers, more senior Sloven staff resigned and the Oxfordshire services were left to fester in a slow cooker of discontent, fear, malaise and isolation from the mothership. Extracts from the Verita report state:
6.42 Difficulties arose soon after the acquisition in ensuring the availability of sufficient senior and experienced divisional managers to take forward vital post-acquisition actions. In particular to progress actions arising from the various quality assessments that had taken place before the acquisition.
6.50 A ‘business as usual’ methodology for a newly acquired service may appear appropriate if the service being acquired is mature and relatively problem-free. This was not the case in the Ridgeway services. Contact Consulting had warned of issues in local leadership; governance of serious incidents, along with particular difficulties about care issues in non-Oxfordshire services. There was also a need to begin dealing with the cultural change required of an established learning disability service joining a large mental health and community trust with a small learning disability service.
The writing on the wall. A baguette crumb trail through the NHS forest of cover up, fakery, denial and self interest. From 2011 to the present day. Evidence, evidence, evidence. Death. And evidence and death.
So where are we at? Two months after publication of the Mazars death review. Almost three years since LB was admitted to what we thought was sharp, specialist unit with a tiny number of patients and a shed load of staff… Five years after the original whistleblowing letter? Hold on to your hats, folks. We’re waiting for Monitor (NHS snooze hounds) to appoint a temporary, er, Head of Health, Safety and Security Improvement Director.
Yes. Really.
*This report really makes your skin crawl in its tortuous weaving through damning evidence to a conclusion that the Sloven board were not connected to LB’s death. The author left Verita straight after it was published.
Goggle box and the Mazzwot review
A student, Andrew, came round on Saturday. From Yorkshire. He’s doing a pre-university diploma in media and is making a short film about what happened to LB for his coursework and to raise awareness among the students at his college. He was sensitive, quiet, thoughtful and careful in setting up his equipment. In conducting the interview. It couldn’t have been an easy task.
Yesterday Liz (who brilliantly maintains a spreadsheet logging all mention of LB and #JusticeforLB, together with easy read/more accessible versions) noticed that the (approved) CQC November board minutes reported that LB died through misadventure. The CQC Trustee she raised this with immediately apologised and said he would make sure the minutes were corrected. (The full jury findings can be read here… [Howl]).
Sloven, as regular blog followers will know, recorded LB’s death as natural causes in their board minutes a few weeks after his death. Minutes that have never been corrected.
Maybe some people reading this will be thinking
Bloody hells bells. Give it a rest, you lot. Banging on about tiny details. Christ. We’ve enough on our plates, trying to do our jobs with less and less dosh. More and more figures to produce, boxes to tick, vanguard type activity to bufferoo. Jeez…
But this stuff is important. It’s deeply important to us how LB’s death is reported/recorded officially. To state he died naturally, or through risks he took voluntarily, is wrong. But it’s of importance, or should be, to all of us. The minuting and approval of inaccuracies by public bodies raises various overlapping questions/concerns.
Most obviously, how? How can such inaccuracies be noted, written, approved and published? Is the detail so inconsequential? Is the process of interminable meetings and equally interminable minutes a hollow, meaningless process? How many people – in the official chain of leading, acting, communicating and doing – are simply slumbering on the job?
Why are the minutes inaccurate? Are they typically riddled with inaccuracies or are these inaccuracies related to particular assumptions/prejudices? The old learning disability goggles filtering out anything to do with certain people as irrelevant. Un-noteworthy. The Mazars review found hundreds of deaths similarly discounted, ignored, brushed aside.
The response to the Mazars review – eh? The what? M? Mazzwot? – further illustrates and underlines this inertia, this disinterest. The lack of care, concern and disregard. Why bother to keep accurate minutes when an independent review of your practices revealing deep rooted failures at board level is brushed aside? There are no consequences.
And what does all this say about the regulatory processes/bods that flit, fancy and dance around NHS Trusts? Clearly knowing they’ve sort of got power that they ain’t ever going to use? A grotesque kind of playground hopscotch where everyone is simultaneously covering their eyes, pocketing the best stones, rubbing the chalk lines away and guffawing over what a great playtime it was in the kids toilets and staff room. Going home to reconstruct the, at best, deep slumber or unsavoury practices they generate, indulge or witness to their loved ones and friends.
Slumbering continues possibly because most people aren’t rendered invisible. And couldn’t imagine being imprisoned in a room, fed through a perspex hatch for nine years, at a cost of £12,600 a week, without the weight of the state sweeping in with the justice batten. They couldn’t imagine having one of their kids drown in a hospital bath. Or locked up for 10 years for no crime other than a lack of appropriate support in the community. But the continued silence around these atrocities is… what? I’m almost out of words.
The mothership, blunt instruments and telling again
I had a phone interview earlier with an investigator investigating Sloven nursing staff on behalf of the Nursing and Midwifery Council (NMC). This has taken so long to happen because Sloven spent an age and a day doing their internal disciplinary investigations [of course] and consistently refusing to say who they were investigating [of course]. We referred a consultant to the General Medical Council (GMC) back in May 2014 after being told by ‘a source’ she’d done a bunk. The nurses weren’t so clear cut.
So today I found out the names of the six referred nurses. Six. And no medics. The Sloven sloven industry as always delivering pure shite. Take over (land lucrative) provision from afar, leave it to sink into a hellhole of discontent, malaise and fear and, when the inevitable shitola happens, make sure no one within a fifty mile radius of the mothership catches any of the fall out. Particularly anyone approaching board or CEO level.
In her opening spiel, the investigator offered me the services of a liaison officer to ‘provide support during this process’. Bit late in the day for that really. It reminded me of the Health and Safety Executive leaving us a booklet about what to do after the unexpected death of a family member. About 18 months after LB died. Learning point 1,345,987 If you come into contact with families some while down the grief and bereavement road to nowhere, perhaps think about the standard bells you typically offer and frame them appropriately…
Next stop was the blog.
‘You, er, write a blog. Could you not write about this, it may disrupt the process…’
Mmm. There wouldn’t be a process if I didn’t write a blog. And despite the ludicrous shrieks of the Dr Crapshite brigade, I’ve not been a name shamer on these pages. (Well not below leadership level… the likes of KP, Petter, Jacko and Hudspeth who I reckon get paid to swallow the pill of possible publicity). I agreed to not mention the content of the interview.
Then we were off.
It was so blinking distressing to go over everything again. Even more distressing, if that’s possible, after experiencing LB’s inquest and hearing the (still not quite) full story of what happened. Layers and layers and layers of wrong that simply scream out. While crap all happens.
‘Can’t you use the context I provided to the GMC?’ I asked after the first question.
‘No, we need to have what happened in your words.’
‘They were my words‘, my brain screamed… like they were for the police. For the coroner… for Verita. Learning point 1,345,988 There is no justification for repeated telling when the telling has already been done in an official capacity unless people want to. Otherwise, agreement with the person/family that they are happy for a cut and paste version to be used from another official telling should do. There is always the option to add or delete bits at the next stage.. [Howl].
Such disconnect among the various arms of the (non) accountability dance. A fresh beating with a blunt instrument on each iteration (I now suspect with even more nails as the futility of the telling becomes more and more apparent). Perhaps 1,345,989 should be a brief note, early on, stating:
Now you’ve experienced the worst thing you could ever (not dare to) imagine, we’re going to spent the next few years or more (well as long as it takes) torturing you in a combination of bureaucratic, thoughtless, deliberate, ignorant and incompetent ways…
Yours,
The State
‘Do you want a break?’ asked the investigator several times during the interview.
My brain seemed to be hosting a particularly absurd but unavoidable horror show that made it difficult to speak. Sitting at work, I drilled the phone into my ear and sort of strangely gargled, cried, caterwauled and clawed my way through the following hour. I didn’t want a break. I just wanted it over.
[Final reflection: I had the odd moment while writing this post that I haven’t had before. Would I somehow jeopardise the NMC investigation. Not by disrupting the process but by simply pissing them off? I don’t know. But we’ll never know anything if things remain secret.]
mydaftlife 