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

Johnny Rotten and the legitimacy of anger

Rich met me at the bus stop after work yesterday. I was feeling a bit low. We wandered home across the London Road.

“You seem a bit despondent…”
“Yeah. I am. Fed up with raging. And the continued shite that just doesn’t change. Not sure I can bear another year of being so angry... I’m weary of being constantly angry.”
“That’s what happens.”
“What?”
“People get worn out. They stop being angry. But it’s right to be angry. Anger drives a refusal to accept the low bar, the unacceptable. It drives action and critical engagement. Without it, issues are reduced to vague problems too easily dismissed.”
“Hmm…”
“Like Johnny Rotten said, anger is an energy…”

Minutes after getting in, an old mate turned unexpectedly. Her son a year or so older than LB. We had a catch up over mugs of tea and a chunk of Christmas cake. She filled me in on the horror that has been her family’s recent experiences of adult services. Not a pretty story. But it so rarely is. We reflected on the way in which 18+ years of loving and bringing up our kids (along with their sisters/brothers) can be summarily dismissed or problematised by health and social care (with the eye watering irony they offer nothing in its place). The misuse of power and erasure of love and more (the right words don’t exist) too often, just extraordinary.

Before she left, she said;

Do you remember when N and LB were young? And we were so optimistic about the future…

Blimey. I’d forgotten. We were. There was a group of us parents. A right old bunch of budding agitators/activists [just mums really…] All with kids the same sort of age. So utterly convinced we could change what we thought was an already changing world to create rightful space for our kids. To live the lives other people lived. I was shocked to remember this, and that I’d forgotten.

Later, one of LB’s school mates posted two photos on Facebook from years ago. LB was sitting among the small group of kids. He looked so chilled in one and smiling, as he saw the camera, in the other. It was clearly before the fake, fixed cheesy Wallace grin period which lasted a good year or so. Until my relentless photo taking became commonplace again.

Rich is right. Anger is necessary. Or you get sucked into the malaise that is the myriad words/excuses/bullshit/reviews and recommendations that health and social care bods endlessly come up with. Non existent change… what’s about to happen. And never does. At best, a kind of hope soup. That never leaves the kitchen. And feeds no one but the cook.

So 2017. Another year. With anger. And focus on brilliance. The remarkable. And humour. That rightful space is still there, somewhere. We just have to collectively, and persistently, nudge the crap out of the way. And never stop saying this is simply unacceptable.

bindmans

Bindman’s published their first ever annual review today.

Goggles, faeces, pricks and shoes

l1026633

Oh dear. My pre-Crimbo sunshine has gone with the advent of 2017. Waiting for accountability still. Some random thoughts and reflections here. Apologies for any repetition. We’re getting mighty weary waiting. (Actually worse than weary, but there you go.)

First, a brief recap of some very key points:

2017

 

If someone told me back in the day we’d still be waiting for accountability in 2017 I’d have refused to believe it. We’re talking about the NHS, for goodness sake. Of course it wouldn’t take years…

Such naivety.

Like many other families, we’ve been consigned to a half life (at best) since LB’s death. Forced to ferociously police and push for interminably slow, and too often reluctant, processes to grind on. Fun, the small stuff in life, largely shelved. Work a distraction rather than the focus it used to be. Our lives have been transformed/brutalised because LB was not seen as fully human in life or death. And because he died in NHS care.

I was having a twitter exchange about patient safety/bereaved families the other day with a well known and influential GP. S/he refused to listen but tweeted a cloying ‘If you prick us we bleed…‘ Gordon Bennett. I was quite proud I wandered away from that exchange with no whiff of a swear or ten.

The comment sheds a bit of light though… About senior health and social care bods who seem to be pathologically unable to put themselves anywhere near the shoes of bereaved families. People so firmly focused on their own shoes (careers, status and the like) with the coatings of arrogance (and sometimes immaturity?) that seem to come as a perk of these positions.  People with the power to both discredit and further alienate families pushed to extremes through the heady combination of grief and injustice. People who should, really, know better. And do better.

Here’s a thought for the new year. Why not ditch those goggles, park your shoes to one side for a bit and give what happened to LB, and others, proper scrutiny and attention. Read the extraordinary and repeated unwriting of scandals, the limp dicked excuses and half baked non explanations/obfuscation in statements, reports and reviews. Look at the ridiculous time that’s taken to never get anywhere. Stop worrying about pricks and try to imagine what it must be like to endure life after the preventable death of beloved family members in NHS care. A particular hell with no end in sight. It may well be a cathartic experience. You never know.

It certainly can’t hurt.

l1026640-2