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.

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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???

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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:

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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…

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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.

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Loved by mum and mermaids…

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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].

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