The afternoon before the hearing

 

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I spent the afternoon with Tom trying to get photos from an old mac that’s been gathering dust and more upstairs. Eventually, after exemplary focus and persistence by Tom, and a few chuckles along the way (yep, yep, my computer smarts are shite, I’ve a desktop that demands a cone of shame and I’ve not updated anything since about 1749), 451 pics from the (g)olden days are now on my desktop. (A fair few have an alarming luke white question mark but we can save that battle/puzzle for another day).

Above is LB ploughing his own path up a hillside holding tightly onto to his i-summat music player. The gadget he produced myriad playlists on, back in the day. Each with one song on.

It was our last family holiday in 2010. He did what he typically did; stuff (the day out in the Black Mountains with a makeshift picnic) in his own way, own time while breaking nonsensical and meaningless rules along the way. So what if he was far behind? He got there in the end.

Before we got stuck into this task Rich and I walked into town to get a hard drive. On the bus home Julie Dawes, Sloven CEO, rang in response to my email from Friday. Good for her for calling back. I want to present the gist of our conversation here because I think it contains or flags up important elements/ingredients for the relationship between Trust staff and bereaved or harmed families.

The Sloven board apparently made the decision that no board member would attend the Health and Safety Executive hearing at Banbury Magistrates court tomorrow for ‘various reasons’. This was because they decided it would cause us further distress and it was ‘usual’ to send the communications manager to such hearings.

Julie Dawes rang me out of the blue on Friday because she was worried about the distress their planned press release would cause us. We weren’t asked whether the attendance (or non-attendance) of a senior exec at the hearing would cause us distress. This suggests that baby steps of improvement (concern about press release distress) remain coated in relentlessly longstanding concern about Trust reputation. And an accompanying lack of really understanding what is important to families.

You can’t assume distress in one area (attendance at the hearing) while checking it in another (press release content) without raising questions about what is actually ‘important’ here. Our feelings as a family or Sloven comms/reputation.

And when you’ve endured the extraordinary through Trust actions like we, and so many other families, have the ‘usual’ is irrelevant and obscene.

It’s really time to start walking up hills using the example of LB (and others) if you mean business around changing practice. Chuck out the grotesque, the turgid, the meaningless, the offensive and step up. Demonstrate the ‘impact’ a patient’s death has had on your organisation with actions. Not talk. [As an aside, and a frankly unapologetic plug for my book, one of the things I learned from early readers was ‘show don’t tell’.]

Think about the thin arguments you’re making and challenge them yourself. Instead of sending the comms manager ‘as usual’ (I struggle here with what ‘usual’ is in such circumstances), make sure a board member pitches up, even if you anticipate a five minute hearing. LB wasn’t given the chance to live. Don’t show further disrespect or worse by thinking it’s only a ‘five minute hearing’, or because you want to downplay the importance of the hearing.

Stand up publicly and show you fully understand and recognise that your organisation is responsible for the preventable death of a patient. Until you do this, no other fucker is going to.

Julie Dawes said on Friday she wanted to offer any personal help she could. It turns out this was distinct from arrangements around the hearing tomorrow and board decisions about attendance. A revealing comment (which is not to knock the offer of help which we appreciate). For families ‘the personal’ is too often the process. And the obliteration of humanity through that process.

By the end of the conversation I think we were sort of on the same page. I appreciate her sticking her neck out by ringing earlier. I hope productive discussion followed our fraught conversation. And I hope some respect will be shown to our beautiful boy who died in the cross hairs of a greedy, arrogant and failing Trust, local authority and CCG, tomorrow.

He deserved so much more.

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The bleat action continuum

Over two years ago now I was writing about ground elder and the #LBBill. I’ve moved into the front garden recently, leaving the elder battle in kind of easy truce [I failed]. The front garden has tall ‘weeds’ with yellow tops which grow to middling head height every summer, leaving columns of snappable woody stems in the autumn.

Turns out these fuckers are worse than the ground elder. They have incredibly dense interconnected knotted lumps of a main root with shaggy swathes of stringy roots. Each one involves a hefty dig, more digging and almost full body wrestle to remove it from the ground. I can almost hear the earth breathing as they are lobbed into the brown bin.

Today we were due to hear the outcome of the Nursing and Midwifery Council (NMC) investigation into how they could possibly have shared personal details to the six nurses under investigation and their counsel.

Given the General Medical Council (GMC)* tribunal into Dr M’s fitness to practice starts on Monday in Manchester for two weeks and Rich and I are on extreme stress settings, I naively hoped that the NMC would be in touch early on in the day to limit the stress. We’ve had way too many 5-5.30pm Friday disclosures over the last four years.

The day dragged on. I punctuated work tasks with patches of root wrestling. Still nothing from the NMC. By 4pm I drifted onto twitter. It was impossible to concentrate. There was some discussion around what time we might expect to hear from the NMC and recognition that the Friday afternoon ‘disclosure dump’ is clearly modus operandi for public sector organisations with no heart or feeling. I resorted to tweeting the CEO about the cruelty of this delay.

The email pinged into my inbox. At the very outer edges of the allocated time.

Tip: Because you say an investigation is going to take x amount of days doesn’t mean the investigation has to take x amount of days. Focusing more attention on a complete balls-up to reduce the time the investigation takes and the accompanying stress for the family is the least you can do in a situation like this. Particularly if

  1. you had an additional 15 days between discovering the data breach and bothering to contact one of the four people affected.
  2. you have previously and publicly spent £250k redacting documents requested by another bereaved family in a breathtaking self protective act.

One of the numerous shite practices we’ve noticed over the past four years is the tendency for senior public sector staff to bleat ‘It was not our intention to do x, y or z’ despite doing it. Or ‘On reflection we should have done…’ when they didn’t.

What this really means is senior staff act with intent (and speed) when it involves their (organisational or own) reputation/skin and don’t when it doesn’t. The briefing on my blog circulated the day after LB died is an exemplar of this bleat action continuum.

The NMC letter outlined how sorting out the return of our personal data (first shared in November 2016) is shambolic. A mix of returned data, alleged destruction of data and outstanding information about copies made.

About as unreassuring as you could get.

And then, in a move not worthy of being written into a cheesy, made for tv movie, it turns out that after discovering the data breach in July 2017, they re- shared my personal details with three of the nurses. Yes, you read that correctly. Re-shared. Nine months after first carelessly tossing them around. But only [bleat] the same information (minus my bank details) to the same people…

There is nothing like heavy handed, dosh drenched redaction when it ain’t your reputation under threat. Nope. Nothing like it.

Fuckers.

*The GMC have been exemplary in the approach to this: clear, detailed information, communication and organisation.

“Breathe before clicking…”

Three possibly related developments in the last week or so. [One] The Sloven annual report published last week included a paragraph about the ex-CEO and her pay off:

‘Independent capability reviews’ had determined Percy was fit to lead. Blimey. That’s  interesting. What do these reviews say?

Well, a capability review was carried out by YSC for a cheeky £116k excluding VAT last year. A report that has never seen the public light of day despite FOI requests by ex-governor Peter Bell. It apparently gave the board a clean bill of health in the summer of 2016.

One year later, not one executive or non-executive director remains in post.

Now I ain’t no mover or groover in senior NHS circles [cue the eye leaking emoji] but I can’t help thinking that purging a Trust board of every executive and non-executive director is a pretty serious move.

Percy is apparently exonerated by this [secret] capability review while two prosecutions for failings under her watch are pending. Just extraordinary. I mean I can only imagine/hope one prosecution against a Trust is a pretty serious and rare gig. While two…?

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In the same week, I received an email from a journalist scamp with a warning to breathe before clicking. [Two] Percy is back and touting for business  with some toe curling claims. These include inspirational and visionary leadership, creating an open, accessible and energised culture, and successfully delivering a major acquisition of services.

[Three] As the last few Sloven staff transfer over to Oxford Health or limp back to Hampshire, the door is finally closed on the grim and grotesque acquisition process Percy led back in 2012. I think it’s fair and reasonable to say that using the word ‘successful’ in relation to this process and the devastation that followed, is one of those stretches that should never have been a fleeting thought in a careless moment, let alone typed into a Linkedin profile.

I want to flag up here that I have no personal vendetta against Percy. I have no interest in her as an individual outside of what she, her actions and the ‘official responses’ to her actions reveal about the murky of murkiest corners of the NHS.

There are, clearly, serious questions generated by these latest unfoldings which should be of concern to all of us.

Not least, why do the various NHS layers – Jeremy Hunt, the Department of Health, NHS England, NHS Improvement, the CCGs, the Sloven board – allow, enable or facilitate these narratives of delusion and erasure to stand unchallenged, and the continued channelling of scarce dosh into insalubrious pockets and pots?

UPDATE: The PriceWaterhouseCooper audit clearly summarises the failings the bulk of which occurred under Ms Percy’s leadership. Deary, deary me… Something is Stinky Pete around here.

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The Mystery of Loring Hall and the CQC

Ok. This is hugely important. And devastating. I’m going to go through it in some detail because it is so fucking important. And devastating.

Here’s the rub. In November 2015, the CQC inspect Loring Hall, a care home for up to 16 learning disabled adults, run by Oakfields Care. ‘Good’, ‘good’, ‘good’, ‘good’ and ‘good’ on all five domains inspected. A clean bill of health.

The CQC then received concerns around the management of risk to people living at Loring Hall.

On April 28 2016 they reinspect the home focusing on how safe and effective the service was. This produced a remarkably different picture to the November inspection. The re-inspection was conducted by an inspector and specialist advisor with epilepsy expertise. The key findings:

The inspection report reads eerily like the September 2013 inspection report of the unit LB died in. Medicines not stored properly, untrained staff and inadequate risk assessments…

Despite the list of failings identified during this new inspection (including a striking lack of training)…

… the CQC decided not issue any enforcement action:

A last bit of detail on the process of the April 2016 inspection:

On April 13 2016 Elric Eiffert drowned in the bath in Loring Hall. He was 34 and diagnosed with epilepsy and autism.

His family were told about his death on April 30 2016.

Just a few scrambled questions and comments (I can’t make much sense of any of this) largely for the CQC:elric 7

Our son drowned in a bath in a craphole unit, six years after another patient drowned in the same bath.

The first patient’s death was covered up until October 2015 when it was used as a nasty little ‘weapon’ at LB’s inquest.

Nearly three years after LB’s death (and after a Prevention of Future Deaths report was issued by the Coroner), Elric Eiffert  drowned in a bath in a craphole ‘care’ home that five months earlier had received a ‘good’ CQC rating.

No one should drown in a hospital or care home bath in the 21st century. Or die unsupervised of a seizure in a ‘care’ setting. LB, Elric, Edward Hartley, Danny Tozer and countless other people, would all be alive if they had received appropriate care.

This is beginning to look a tiny bit like state supported eugenics. And no one who should appears to give a fucking shit. Still.

The pigeon in the chimney

Nearly two weeks ago now, we had a pigeon in our chimney, in the bedroom. It took ages to come down, bringing years worth of chimney shite with it. The fireplace has one of LB’s bus pictures in front of it and once it landed, the pigeon just calmly poked it’s head round the side of it. Rich was ready with a cloth to catch it and release it out of the window. It did a massive loop around the houses then flew away.

Ten minutes later, the Health and Safety Executive rang. They said they will be prosecuting Sloven under Section 3 of the Health and Safety Act. Tears. The following day, Fran rang. She had been at a meeting with Oxford Health and commissioners where it was confirmed that, after quite a battle, the Slade House site would remain with Oxford Health. She said there were tears. More tears.

Jim Mackey, NHS Improvement, told Andrew Smith, MP:

“Southern Health will not receive a cash consideration and will record a non-operating ‘loss’ item in its accounts.”

I think that’s pretty much it now. Other than a shindig at the Oxford Magistrates court when the prosecution is held.

Thank you. I think we all did a bloody good job, as Connor would totally expect.

Slade House, dude selfies and the stars

An incredibly difficult week for some Oxfordshire families who are living the lack of appropriate support at a knife edge, or so much worse. I’m going to briefly highlight some good stuff that is happening in between the shite.

Oxford Health are taking over from Sloven (in July officially). They have picked up a right old mess but the new learning disability lead seems to be a rare senior NHS professional who has human written all over her. At an extraordinarily tense and distressing meeting this week she got it, she acted and she demonstrated she was a force for good. Fran reminded me this week it was 16 years ago we did a survey of the experiences of families in Oxfordshire. This flagged up the terrible stress families were under. She messaged me; “Looking back we were so naive in our basic hopes and expectations.” [Howl].

Families are working with people like Noelle Blackman, from Respond, and Oxford Health to do their best to create something that actually works for Oxfordshire dudes. What that will be isn’t clear though the expertise families are offering, together with a Trust who listens and seems willing to run with thinking outside of the typical, constraining and soul destroying, is deeply reassuring.

Finally, the Slade House site is not being trousered by Sloven. Our relief that this particular fight has been extinguished is beyond words. Nearly four years now, of campaigning at an intensity that cannot be indefinitely sustained, the prospect of chaining ourselves to the railings filled me with despair. This is a fucking ‘victory’ [not the right word but there are no right words] against injustice.

The deal (not quite signed yet) apparently is if Oxford Health sell the site within 5 years, Sloven get 50% of the dosh. This seems fair. Here’s to some creative planning around how this site can be used. I mean, just imagine if Oxfordshire became a pioneer in actually getting it right? From rock bottom to actually reaching for the stars…?

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.

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.

 

 

 

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.

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The disability studies assemblage certainly did, as she highlighted:

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I particularly loved this comment.

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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.

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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.

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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:

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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.