A cull and a shedload of ‘shoulds’

So, the Sloven non-executive directors are no more. The interim Board Chair, Alan Yates, published the news earlier. He had the decency to let us know in advance which we appreciate. He’s also clearly got some sense getting shot of them. Though really you couldn’t get much more of a “fuck me, this bunch of muppets are utterly clueless” situ. Just look at the very potted timeline, the BBC pulled together:

The failings drag back to 2011 when the Trust gained Foundation Trust status, and have been well documented since then. A shedload of public dosh has also been spent on repeatedly reviewing the Trust governance. Simply shameful. Here’s hoping some of the remaining execs follow suit sharpish.

In other news, the National Quality Board guidance, an outcome of the CQC Deaths Review, was published yesterday. More guidance. Drenched in typical ‘guidance’ statements like; To ensure objectivity, case record reviews should wherever possible be conducted by clinicians other than those directly involved in the care of the deceased. 

I should start walking more again and give up booze and chocolate. We should keep the house cleaner. Of course case record reviews shouldn’t include the involved clinician. Seriously. Is this how far we’ve come?

New principles for engaging with bereaved families are included in the review, handily provided in a box on p15. Eight bullet points and 7 ‘shoulds‘. I remain so blinking relieved and delighted that #JusticeforLB has been an explosion of colour, fun, joy, beauty and brilliance. A tonic to offset the utter banality and mediocrity of official responses to scandalous practices… 

As part of the CQC Deaths Review spillage, there’s a swanky ‘Learning from Deaths Day’ arranged next week. In a move that both exemplifies a) the complete lack of understanding (still) of what needs to change by those who should know so much better, and b) the disconnect that exists between the different silos of NHS England, CQC, NHS Improvement and the like, this day was originally closed to families. I know. (Almost) cue the old, eye leaking emoji…

Eh? What was that Jezza? Sorry, stumbling on bullet point One right now. Here’s a reminder in case you’ve forgotten (or not been told): ‘Bereaved families and carers should be treated as equal partners following a bereavement..’ Oh and bullet 8: ‘Bereaved families and carers who have experienced the investigation process should be supported to work in partnership with Trusts‘…” 

You couldn’t make it up really. Just words. Put together in a report like shape. Same old words, same old order. Like browning blossom falling onto the damp ground below. Soon to disappear and be forgotten about until the following spring when new versions of the same appear.

With some agitation by various people, including George Julian and Neil Churchill of NHS England, families were eventually allowed to attend this day which is organised as a typical NHS exercise in heartsink pomp and ceremony. Swerving the opportunity for a humane, passionate, critical, efficient, collective and effective response to a scandal that obviously demands alternative and innovative responses, the same old turgid suspects are lined up to talk the same old, same old talk. Durkin, Richards, Mackey, Hunt and more Durkin. The 7.5 hour gig includes 10 minutes of a family member, an hour of scheduled discussion and 20 mins of Q&A.

 

We could probably write the script of the day now and save £££s. Not only in the laying on of the event but the time taken out of attendees’ everyday lives. I feel so sad that the brilliant and groundbreaking work of the Mazars team is being dragged down into this well trodden, hierarchical, tedious and mediocre NHS furrow. There was a moment, back at the end of 2015, early 2016, when actual change seemed possible.

Instead, it’s business as usual and a shedload more shoulds.

Postscript: Had a timely reminder via Twitter as I pressed publish that we have held the Sloven board to account (a CEO, 3 Board Chairs and 5 NEDs so far.) Yep. We bloody well did. Cracking work #JusticeforLB and continued drops of brilliance.

A jumble of almost deliciousness…

This is going to be a jumble of a post, because it is a jumble. In no particular order…

An email earlier from Rory Toher, a documentary filmmaker/journalist. He attended Connor’s inquest and came for the post-determination (verdict) booze and nosh up round the corner from the coroner’s court. He emailed about the documentary Under Lock and Key which is on Channel 4 at 10pm on Weds this week.

Ali (Millar) and Liz (Byrne) [filmmakers] were in touch with me every day that I was in Oxford, and hung on every update from George’s live tweets; so it’s been a huge help to have the Justice for LB campaign making such a huge noise around the issue of vulnerable people locked away, apart from their families, in uncaring institutions. It was certainly the movement that got this film going, so we’re hugely grateful to you all. 

Wow. And how much do I love the courtesy, thoughtfulness and commitment that has characterised pretty much every interaction we’ve had with journalists over the past few years? They get the importance of what is happening to certain people (still).

David Harling has finished his fourth animation. The first three are embedded here because each one deserves to be watched and then watched again:

The fourth takes things to a whole new level of extraordinary. It’s being launched at the NWTDT conference in Blackpool on Thursday (suspect a shedload of tissues will be needed). And if it doesn’t kick ass some sort of tangible change, I don’t know what will.

On Wednesday, Mark Neary and I are talking on a panel at the ‘Autistic Wellbeing‘ seminar, part of the ESRC Research Seminar Series: Shaping Autism Research organised by Damian Milton and Liz Pellicano. Saturday is an International Women’s Day event at Doughty Street Chambers; What more can the Law do for Women? Again, a packed agenda of brilliance.

Finally, my book (title still being thrashed out) has a provisional publication date of September 17… LB is seriously rocking the the agenda, along with Thomas, Nico, Danny and others. As they blooming well should be.

image-17

 

My son is not a teaching tool…

Been a bit quiet on here as I concentrate on bashing out my book evenings and weekends. I’m trying not to get too angry as I’m determined to produce a good read (the intense rage is in temporary abeyance).  Sadly, the 5.30ish-9pm space I plotted tonight, as I lit the fire and made sure there were some cans of Heineken in the fridge, was blown out of the water by the latest in the (almost farcical but sadly not funny) shit stream blown out of the backside of a Jeremy Hunt, NHS Improvement and CQC combo.

Yesterday, the Expert Reference Group (ERG) for the CQC Deaths Review (published in December) met to look at how the recommendations of the report are being implemented. Rich and I had concerns about this review (reinforced by the final report) but there’s always space for action. Except for when there ain’t, as it transpired.  For some reason, a new set of Department of Health bods (clearly in Jeremy Hunt’s human factor crusader back pocket) are now taking the lead and acting on recommendations. Family involvement? You might as well whistle down the wind.

Today, we were sent a cheeky copy of a letter sent to trusts from the CQC and NHS Improvement, detailing changes to be implemented as an outcome of the death review. A letter not shared  with the ERG yesterday or any of the families who wasted valuable time and emotion contributing to the review.

The full letter can be read here: 17022204-learning-from-deaths.

There is so much wrong with it, I can’t be arsed to identify the Eddie Stobart lorry size holes throughout. There are patches of ‘if only…’ or ‘almost hitting the mark’ but the unnecessarily tentative, non-mandatory, half arsed and convoluted statements obliterate them. The letter is almost unreadable in ‘sense’ terms because of the contortions the authors have gone through to remove any hint of wrong doing, failure, negligence, from it.

Just one early paragraph:

jezErasing the humanity of patients and presenting their deaths as teaching tools is about as offensive as you can get in my book, particularly when it’s dressed up in such benign terms as ‘the care provided’.  Sloven, ironically, excelled at the teaching tool shite three years ago with a training powerpoint that, as far as we know, is still available on their intranet. Our request for confirmation that it has been removed, ignored.

When I think about Sloven’s attempts to not disclose records or publish reports which they dressed up as protecting LB’s ‘confidentiality’ after his death, and look at this powerpoint, another part of me dies. That no one, who should, has done anything about this, makes that rage bounce right back from the abeyance pen… Could you please do something about this?

Someone must be responsible???

powerpoint

Meanwhile, the national Learning from Deaths conference mentioned a couple of times in the letter is arranged for March 21. Leaving ‘open, transparent and collaborative’ at the invite only door:

learning-from-deaths

Nearly four years on, we’re left with:

  • Dead patients treated as teaching fodder in a human/Hunt factor health world.
  • Families ignored, other than in particular, staged and performative (that is, fake) spaces.
  • No change in the lives (or premature deaths) of learning disabled people.

 

It was my dad’s 80th birthday this week and we had a big old lunch on Sunday with family and my parents’ friends of 60 or so years. The swearing and the anger I often express on this blog cropped up chatting with one of his mates. I’m sorry Sid, it wasn’t clear whether (or how much) you disapprove of the swearing (and I completely appreciate and love this ambiguity) but this bunch of fuckingcuntstainwankdrops are clearly incapable of implementing effective change. It couldn’t be clearer.

 

 

 

A whistle stop catch up…

l1026830

Been writing like a batshit from hell since Christmas. Weekends and evenings, just thundering away on the keyboard in the back room. Bess often keeping me company on a cushion by my feet. Sometimes not. The book contract is being thrashed out. I’ve pretty much reached the proposed word count; it’s a question of trying to make a tale that doesn’t typically float many boats, into a page turner that grabs attention and makes the likes of LB (Danny Tozer, Nico Reed, Thomas Rawnsley, and many more) human.

I’m on it, with remarkable support.

Other stuff that has been happening (in random/(reverse) order…)

  • The NMC only communicate gibberish so fuck knows.
  • The GMC tribunal date for Dr M has been set for two weeks in August.
  • The HSE are hoping to share further information in the next few weeks.
  • We’re getting an update from the police on Friday evening.
  • David Harling is in the final stages of his fourth animation… this one will include voices… [howl].
  • Caiolfhionn Gallagher was sworn in as a QC this week. Something so unusually right, something so deserved, and so blooming reassuring in terms of the ways in which she will, undoubtedly, continue to use her ferocious intellect, human rights expertise and extraordinary empathy to fight/right as many wrongs as she can in her waking hours.

cg

Loved by mum and mermaids…

l1027050

Aww… found some school stuff of LB’s I’d not gone through. Such treasure. Including a funky LB Warhol pic (eerily prophetic of Maurizio’s artwork), and a ‘Winter holiday diary’ in which he’d written

Went to the rare breeds farm and let the goats out.

That was so, so blooming hilarious

There was ‘Health and Safety in the Workplace’ work where, in answer to the question ‘Why are these rules important?’, LB replied ‘You need rules to keep safe’.

[Howl].

l1027046

The heirloom

l1026854

Alicia Wood drove from Devon late afternoon yesterday. And pitched up at ours, en route to London, with her longtime friend, Maurizio Anzeri, and the artwork he created from a photo of LB. We’d seen, and loved, photos of this picture, which was recently exhibited in Aviles with the #JusticeforLB quilt and other brilliance, but it’s impossible to capture the delicate, intricate, extraordinary (and precision) golden thread, stitching/embroidery on camera. (Sort of ironically.)

It is completely mesmerising.

I can’t put into words what Maurizio creates with his work. He typically works with ‘anonymous’ vintage photos, creating patterns over faces with embroidery thread. He didn’t do this with LB. He sort of wove the magic with him, through him. For him.

One of the saddest things that haunts me (apart from constantly missing LB) is the gradual loosening/distancing of him from the continued unfolding of our lives. I know it’s kind of inevitable. Christ. We can’t keep banging a ‘remember LB’ drum every other minute, despite how much I want to.  I now understand how much each of us who knew (knew of) and loved LB in our various ways, always will. How could we not? And I’m beginning to develop an encouraging, while patchy, engagement with the ‘he’s always with me, in my heart’ type thinking.

Maurizio has produced something that will always prompt/demand questions, interest and fascination among family and friends. He has created an heirloom. And that is truly magical.

l1026886

Interruptions and the last parents evening…


l1026770-2

Having kept my birthday a sort of ‘secret’ since the beginning of social media, big sis, Agent T, crashed through this unspoken boundary early this morning with a ‘Happy Birthday’ message on Facebook. Haha!! Rich said I was curmudgeonly later in the day when I grimaced when someone said happy birthday to me. He was right. It was lovely to read messages on my timeline. Dunno why I’ve not embraced it before. Maybe because I’m totally shite in getting any birthday type messages to anyone within a six week buffer zone. Or worse. Christmas is always easier because it’s the same day for everyone.

I worked at home and, by mid afternoon, was picking off tasks that have hung over me for months (years even) now. I’m beginning to pick up the pace again on getting articles submitted/co-authoring. Maybe there’s time still for an academic career resurrection. After a (soft) ‘grief’ interruption of 3/4 years.

It was also Tom’s last parents evening this evening. The final one in 20 years or so of parent evenings. Moving from grazing plastic baskets of exercise books of pictures and carefully crafted giant words, while sitting on teeny tiny chairs in primary school, to meticulously unintelligible mark sheets, noise and chaos in a sprawling secondary school. With random and occasional offerings of a doughnut and cuppa to distract from the pandemonium.

Tonight it was held in a new part of the school I hadn’t even known about/noticed was built. More evidence of interruption. Tom rocked it. I nearly cried. Missing LB, time passing, another milestone passed. I felt deeply proud of all the kids. How they’ve taken everything that’s happened, kick assed it in their own (and collective) ways and grown into young people we not only love but also really like.

Not sure I’ll miss parents evenings. [I won’t]. But will remember them with a kind of fondness.

And thank you for the birthday wishes.

 

The solicitor, the student nurse and scholar activism

On Tuesday Katherine Runswick-Cole gave her inaugural  lecture which touched upon numerous highlights of her work over the past 10 years or so. Well worth a catch up if you missed it. One of the things she talked about was #JusticeforLB and the responsibility of academics to be scholar activists.

krc1

The disability studies assemblage certainly did, as she highlighted:

krc3

I particularly loved this comment.

krc2

I remain chilled by the obscene focus of Sloven and Oxfordshire County Council on reputation immediately after LB’s death. And the eight months or so it took before his death made it into national news. That ‘random’ people now know what happened can only be a good thing.

Yesterday, a second year learning disability nursing student left a message on the #JusticeforLB facebook page. He wanted us to know how much of an impact LB’s story was having on his, and other students’, education.

comment1

He went on to say:

Nothing could ever make what happened ok. It will always be a tragedy. But LB is shaping the education nurses receive. He is changing the way people work who have been nurses for years, and most important of all, LB is making the lives of other people safer but ensuring they get the care and support they need.

[Sob]. Spot on. Nothing can make it ok. And I so agree about the impact and change. I’m not surprised in some ways. I mean, remarkable campaign magic has included walking a cardboard bus 100 miles along the Camino de Santiago in memory of LB, Danny Tozer, Thomas Rawnsley and others. In the past few years, we’ve collectively managed to prise open a [new?] space for the scrutiny of, and engagement with, preventable deaths (and, hopefully, non lives) of learning disabled people. l1025096Sadly, this focus is not replicated among relevant health and social care bods. We need no more evidence to know that it’s time to properly address and act on the barbaric and inhumane treatment of certain people in the UK. The CQC swerved from this opportunity with their recent deaths review. There seems little effective action from other parts of the NHS (or social care). Just the inevitable, systemic compromise as always. With nothing inevitable about it.

Anyway, here’s to Prof Runswick-Cole, scholar activism and a new generation of brilliantly enlightened nurses. We salute you.

l1019209

Reclaiming mother blame…

Revisiting the mother blame stuff again this weekend. For a mix of personal and academic reasons. On a fairly superficial first trawl (that is, the stuff immediately to hand) I came up with 17 statements explicitly blaming me in various ways for what happened.

I’m trying to work out some way of presenting these words creatively as the words themselves seem to lose meaning. This has involved some fairly absorbing messing around which is quite empowering. Cut and pasting, drawing pictures, stretching and recreating text. It unexpectedly allows a reclaiming of the statements and some power to subvert them. They are no longer the blunt and unthinking (at best) [cruel] things health and social care professionals have said about me (or so many other mothers/parents).

These things can’t be said about families/patients/people without us appropriating the words. And doing what we want with them. Who knows. This may make it less likely that ‘professionals’ thoughtlessly regurgitate them in future.

Revisiting these statements, the horror remains as raw. The pain and rage they cause untempered. I still cannot understand how anyone involved in LB’s death (and most of these 17 statements were made post publication of the Verita review which clearly stated LB’s death was preventable) can possibly think blaming his mum is, in anyway, acceptable. Even if you’d met me (I’ve met three of the people who made the statements so far uncovered) and I was/am the nightmare portrayed, this has nothing whatsoever to do with the health and social non care provided to LB. Even if I was/am a combo of May and Cameron, with a dose of Farage, Trump, Muntz from UP, Gove and Nasty Nick from vintage Big Brother, LB had a right to good and appropriate health and social care. Simple as…

[I can’t  believe I’m actually typing these words but given the persistence of health and social care inequalities, I just despair when I think of how many other people/families must have fallen foul of arrogant, ignorant, judgemental, incompetent, myopic, point scoring, thoughtless professionals with way too much power in their grubby paws.]

I’m left, on first reflections of this mother blame trawl, partly focusing on who said these things. Sloven and Oxfordshire County Council peeps (and I would assume private providers if relevant). But more importantly, those who didn’t say anything in response to them. These statements are not made in a vacuum. They are shared, agreed and circulated, either by email, in reports, letters and so on. The various Freedom of Information and Subject Access Requests that accompanied them revealed no countering, reflection or challenge. This bile is accepted without challenge. No whiff of this:

incredulity

Mother blame remains live and kicking. I can only think it’s up to us to start reclaiming it.

And for those who should know better but clearly don’t, some baby steps to more humane engagement:

  1. First and foremost, remember that a person has died a preventable death. They have died and they shouldn’t have. [Howl]
  2. Try to imagine (and keep imagining) what this must feel like for those who loved them. [Imagining it happened to someone you love is a very basic step here.]
  3. When you receive any documentation about this person’s death (emails, letters, draft reports, briefings), sitting in meetings when this is discussed, or chatting over the photocopier, keep remembering this is a person. A person who shouldn’t have died [Revisit step 2].
  4. Develop a careful close reading of any health and social care missives about the unexpected or preventable deaths of people in health or social care. Learn to identify/recognise typically defensive, over the top, and cruel blameworthy statements about these deaths and call them out for what they are.
  5. Refuse to be party to the callous, inhumane and brutal annihilation of family concerns.

Basically. Just be human.

Of rage and light…

Overwhelming (and kind of surprising) support in response to remaining angry. For productive rage. That’s cool. Just got to keep up the brilliance stuff too. Luckily this seems to fall over itself. Truly extraordinary… For another week, the #JusticeforLB quilt is on display in Aviles, Northern Spain. With the #JusticeforLB bus and this exquisite piece of artwork by Maurizio Anzero.

No other words.

image1-5

maurizio-pic