We moved this week. After months of sorting. Loft archaeology revealing the mundane, treasure, in between and more (shite). Filling a skip, sneaking bits out. In out, in out, shake it all about. A dance of memories, devastation, detritus and love.
Loft work was nothing compared to saying goodbye to people in a series of planned and impromptu gigs (thank you). A lost Saturday afternoon at the farm where Connor worked with teaching assistants Big Sue and Tina, and Fran. Nosh, drinks, karaoke, walks and hang outs. Family, friends, neighbours, colleagues and ‘strangers’. Boundary smashing in the best possible ways. It was almost too much when Tom’s mate (the half ear on the cover of my book) came round for a shower because their boiler was broken.
Twenty years is a long time in one house.
We met with the paramedic lead who attended the unit on the morning Connor died. He got in touch a while back through a friend of Rosie’s. A decent, clearly brilliant health professional who remains ‘stumped’ by what he and his team experienced. The carelessness and disregard layering that day and everything before it. Overshooting the Slade site entrance with no direction. Banging on the door to be let in. A decorator outside oblivious to unfolding devastation. No answers in response to key questions repeatedly asked around how, when and what? Or why?
A never (ever) event.
[Howl]
We also received the draft tv script about what happened to Connor. I can’t say much more other than reading it felt right. Reference to the London bus tour Connor and I did as not sentimental or perfect but ‘the opposite of sad’ stayed with me. Yep. It was just this.
With belongings in storage, we called into the cemetery. For a bit more sorting and tidying. And headed up north.
Laura Booth’s inquest started this week after four long years. I’m not going to write much here*, I’m too enraged and upset for her parents (and for the families who have had similar experiences). Laura’s death (aged 21) was originally labelled as natural causes. Her inquest came about after Jayne McCubbin intervened.
"We went to hospital with our daughter for an eye operation and came out with a death certificate." Concerns malnutrition contributed to the death of Laura, who had disabilities.@BBCBreakfast shared concerns with a coroner who has now ordered an inquest. #BBCSendpic.twitter.com/2z4K9cwu86
The inquest is being live tweeted by George Julian. Following a now familiar route of a reputation obsessed NHS Trust instructing a well practiced barrister who draws on a bag of grubby tactics (parent/patient blame, witness coaching/discrediting, obfuscation, etc…) with no apparent regard for the devastated family sitting in front of him.
[While revolting, it’s evidence of some change as these deaths were pretty much ignored with no inquest or scrutiny before 2015. A legacy of #JusticeforLB and George’s fortitude, expertise and kindness.]
This week Laura’s parents listened to their daughter reduced to an ‘unstable and complex case’ with ‘a mental age of 18-24 months’. Too complex to feed while an anecdote of noshing a bit of mashed potato and peas was repeatedly shoehorned under the coroner’s nose to try to discredit weighty evidence of malnourishment.
She ate mashed potato and peas.
Ma am, I want to make sure this witness who wasn’t here yesterday is aware evidence has been given she ate mashed potato and peas.
Laura was starving.
So many questions raised by witness testimony carefully obscured by the work of the Trust’s barrister. Double take moments lost in ‘moving on swiftly’ sleight of hand activity. A medic who claimed an abbreviation in medical notes always confused him. A nutrition supplement not stocked by the Trust only sourced a week later despite copious notes that the patient hadn’t eaten for weeks. No feeding charts kept because, because ‘the parents’.
Starving.
We’ve seen across the live tweeted inquests that coroners are often ill-equipped to understand and respond to the deaths they are examining. However well meaning or enlightened they may be (and many aren’t), they face the likes of Paul Spencer (or Peas as he is now in my mind) and other regular state funded barristers. Families don’t have recourse to funded legal representation and don’t know they need to. The years (decades) of work these barristers have in cementing relationships with coroners and the trusts they work for is pervasive. I was struck earlier when Peas told the coroner to make a note about a particular point. Evidence of chummy ease and privilege dripping across the coronial system while Laura’s parents sit traumatised.
Various Trust staff gave evidence this week, meithering about Laura’s lack of nutrition while doing crap all about it. An uncomfortable witnessing of buck passing, of trying to duck out of responsibility, claims of lack of ‘specialist knowledge’ alongside claims that the best care possible ‘in the circumstances’ had been provided.
Laura was starving.
There were drops of sense and brilliance. I remain in awe of these drops of sense and brilliance [I know I shouldn’t]. The piecemeal yet rock solid set of allies. This time Prof Sam Ahmedzai, a retired palliative consultant who became friends with the Booth family, especially Laura with whom he had a lovely relationship. He described how:
Earlier, Dr Patel an expert gastroenterology witness took the stand. A shift in the shape and tone of evidence. Dr P was baffled by illogical evidence. You try and feed patients, he said. The risks involved in not feeding patients are obvious. Staff didn’t engage with these obvious risks and yet there was email discussion about the risks of stopping nutrition. Dr P said no one gets better by continuing to ‘try harder’ which is what the records were suggesting and this emphasis places responsibility on patients to get better. Which is wrong. He said [bleary screen] Laura’s parents had tried as hard as they could to help her. Medical intervention was essential.
Storm clouds must be gathering in Trust towers in the face of this unassailable sense, knowledge and expertise, I thought, reading the tweets. Dr P couldn’t be dismissed as a ‘biased’ family friend.
An adjournment was immediately requested.
Ma’am I’d like to invite you to adjourn to enable me to take instructions from my team here, I’ve received lots of instructions…
I can imagine the maelstrom Dr Patel generated with his openness and honesty. We witnessed it during Connor’s inquest. Footy match type cheers when a witness ‘scored’ for the Trust and agitation/mobile phone activity when sense was spoken. Virtual inquests are different in terms of the visibility of these reactions though the distress experienced by the Booths was obvious as it was mentioned by the coroner.
Cross-examination restarted and the barrister kicked off with a question around how complex Laura was. Previous witnesses had expanded their complexity claims under questioning to the point she was the most complex patient in the whole, wide world. Dr P said, yes, Laura was unique and robustly deflected clunky attempts to place the blame on her (and her parents). Peas immediately turned to the speed with which Dr P had written his expert report.
Reflections
The inquest has been adjourned till Tuesday. Leaving Laura’s parents and family in a liminal space of further brutalisation with more to come. The actions of Trust barristers are deliberate, calculated, cruel, practiced and formulaic. It’s becoming possible to anticipate the direction questioning will take. We’ve faced the same barrister (and colleagues from his chambers) in various proceedings as have other families.
The archive of live tweets George has been creating since 2015 is now a substantial evidence base which enables the identification of similarities and patterns underpinning the preventable deaths of people with learning disabilities, and the practiced response of the state to these deaths. A starter for ten:
Preventabledeaths:
People are denied basic health care and dying of starvation, drowning, scabies, constipation with little comment.
Medical (or even public health) knowledge is erased when health professionals come into contact with patients with learning disabilities.
No one takes responsibility for the patient’s health care. Action is punted into the next week/never never without scrutiny.
There’s a collusion around this abdication of responsibility. An acceptance that doing nothing is fine. No one asks ‘why?’
This, in turn, is underpinned by a belief/acceptance or even desire that the patient will die early.
State funded response:
Protecting the Trust’s reputation is key.
Winning is key. There is no low too low to sink to in terms of winning points.
The patient is non human and therefore irrelevant. Their family are non-human by association.
The coroner is a sitting duck in terms of schmoozing with fake charm and too often oven ready to be swayed by othering techniques.
I hope the Booths are able to find some peace this weekend. And hold onto the moments of the inquest which were about love. Laura, her mum and dad. Prof A. Love and social justice. Dr P. George Julian. Jayne McGubbins. And everyone following, retweeting or engaging with the live coverage.
An overland truck trip in the late 80s. Amersham to Kenya with a bunch of strangers who answered an ad in Time Out. The above thread continued to explain how 12 years ago on holiday in Devon (the yurt gig where Connor thought the farmer was wanted by Interpol) we met a photographer who said that the last Super 8 developer globally was closing that October.
By this time, these two tatty films had travelled across Africa for 6 or so months, been sent home to me in the post (I jumped truck halfway through the trip), and moved house at least 6 times. They featured on this blog during a half arsed decluttering period back in 2011.
I tweeted asking if anyone knew of anywhere that developed this film or if I should finally chuck em. Bruce Bennett, a film studies academic, pointed me at Gauge Films who, in turn, said the Super 8 Reversal Lab in the Netherlands was my best bet. There I ‘met’ Frank.
Frank talked me through the process of getting the films developed by an arm of Canadian Film Rescue International. I had to courier them to him by Dec 17, prepare myself for a Brexit related hike in price [groan] and not expect to hear anything until March this year. The charge was pricey (you had to pay a set fee if there was nothing on the film and more if there was).
Cripes.
It was unlikely there would be anything to see given how much time had passed. Could I really not find out?
I’d pretty much forgotten the whole shebang when Frank emailed this week to say there was footage and the films were being couriered back home. Wow.
It was exciting holding the super smart package earlier. The revisiting, rediscovery even, of a piece of the past. The transformation of yellow ripped covering, of black snappy plastic casing and film into something else. I emptied the carefully wrapped content onto my lap.
What the actual fuck? Noooooooo….. I shook the padded envelope. Just a postcard. And two reels of film.
What do I do with these?! I asked Rich.
Er, find a cine projector…
We both laughed. He laughed more than I did.
I dug out Frank’s email to work out what had gone wrong. There was mention of a download. I emailed him and within seconds had the link. Two files. The first was black and white arial footage of Niagara Falls. [No idea. Rich laughed even more.] The second, 3 minutes of eerie, silent, grainy, washed out, truck trip footage. [40 seconds below]
The significance of holding onto artefacts is something I ponder over. My recent skip experience was a cracking example of a ‘gone schmon’ phenomenon. A mountain of stuff erased. The loft lighter. I’ve one sister who’s a stern custodian of the keys to a life clear of unnecessary stuff. I imagine her baffled, impatient even, by the tale of Frank and the Super 8 movies. Of the holding onto crappy, dusty bits of plastic for decades. Not responding to the random deadline issued on a Devon campsite or bothering to do anything with them before.
My sifting of old stuff has also underlined an unrealisation of anticipatory promise which oddly doesn’t disappoint. You can’t ‘rediscover’ parts of the past because they have passed: the richness and depth of sensations; smells, textures, sounds, feelings; the context, the person you were at that time and those around you. This is fine.
At the same time the capturing [of what and why?], the sharing [with who(m) and why?], the keeping and revisiting is important. The story of my Super 8 film, the brief piece of footage taken across a three month period in the autumn of 1988 by my 23 year old oblivious to white privilege self is (living) social history. The story, the film, has woven new strands involving Frank, Bruce Bennett, Rich, my sis, readers of this post, generating further riches and meaning.
Now I need to find out if my parents ever did a fly past of Niagara Falls. Or let Frank know there’s been a mix up.
I ponder this, often. Time between thinking about Connor stretches or repeatedly collides creating shifting and unexpected shapes. I don’t think about him all the time now. [Howl.] Grief rituals seem to be slowly disappearing. The weekly Thursday morning ‘getting that call’ pain hammer has largely gone. Marking the 107 days Connor spent in the unit has receded. Comic Relief – the start of that unfolding – crept up on me this year.
We’re moving house. After twenty odd years of living here. Eight years after Connor died.
Stuff disturbed. Memories shaken from slumber and disrupted. Revisited in a different space and context. A backdrop of global pandemic. Boxes of stuff. Paperwork. Years of reports, condemnation, reviews, reports and condemnation. The paper, typeface, words, postmark, pre-internet. The careful and meticulous pathologising and marking of a tot who wouldn’t reach adulthood. Because of a lack of care, pathologising and marking.
Should we just chuck it all out?
I brusquely pat my forehead upward with the palm of my hand. Like Connor did when faced with something that bothered him.
Forget about it mum. Yep. Forget about it.
I funnel stuff from the loft into a skip that sits outside our house for weeks. Operating a piecemeal ‘keep or chuck’ operation with the aid of a giant Ikea blue bag and Rich or Tom when necessary. Precariously balancing ungainly and leaking bagfuls of stuff down the loft ladder. Emptying the content into the cold metal container out the front. Lobbing some bits from the front door with a sense of ‘fuck you’ satisfaction and achievement. Squeezing by later, to go to the Co-op or walk Bess, I rummage about and pull stuff back out. Worrying about rain and snow.
Why? I’ll do something with it. What? I dunno. Write about it. Mark it. Like it marked Connor. Marked us.
Marking.
I started playing Candy Crush on Mother’s Day 2013. A week before Connor was admitted to the unit. Rosie told me about it that weekend.
It’s so good Mum, me and Becky haven’t stopped playing it.
I was heading to Manchester that afternoon to see her, see a mate and attend a stupid fucking work meeting on Monday morning.
I left Oxford early, late morning. Rich encouraged me to go. Things were not good at home.
I downloaded Candy Crush on the train.
Days (weeks?) after Connor died, a neighbour stopped and told me her daughter had died some thirty years earlier. In her early 20s. A road accident.
How is this possible? We chatted on this street for more than ten years. I sat in a meeting about primary schools with your daughter-in-law. Your grandson went through school with Rosie. We’ve talked weather, empty niceties for years. What do you mean your daughter died?
She shared kind words of wisdom. I don’t remember the detail. I could not understand how someone could weave the enormity of such loss into their everyday life without it being visible. Tangible even.
I still play Candy Crush.
We’re moving to the Manchester area.
I still don’t understand the ‘hows’ of weaving loss into everyday life though I think we’re doing it.
Another smorgasbord of conversations, chat and happenings over the last few weeks. Leaving me puzzling. Mostly about anger and silencing.
As ever, strands of love, rage, activism, academia, despair and some shite.
A project meeting earlier. Our @OlderAhead project is more than needed. We knew this, the first chunk of work has generated evidence to support it. The lives of older people with learning disabilities and family carers are largely ignored in existing research. A family carer co-applicant, and architect of the Embolden project which directly led to this study, pointed out – slightly tongue in cheek – that the funder should be pleased. Yes. [No.]
I was reminded during the meeting how our dad would come home from work every evening when we were pups and ask ‘Did anything strange or startling happen?’ It never did. Or we simply didn’t recognise if it had. Coated in love, comfort and cosiness.
A Zoom catch up later with friends. Conversation turned unexpectedly from open justice to obedience. And rule breaking.
‘I’m too obedient.’ ‘No you’re not, you’re a rule breaker.’ ‘No I’m not!’ ‘Yes you are, you’re always breaking rules!‘
I chuckled watching this exchange. And puzzled. I don’t think it is about breaking rules, as these rules are rarely written or even articulated. It’s about being bold. Forthright, direct. Uncompromising. Characteristics too often punished and punishable. Especially in women. The loose repackaging of acts as ‘not being nice’. And the silencing that comes with this repackaging.
An old blog post was randomly retweeted during the call. ‘Revisiting Tits and Trolls’. [I dunno, it’s woven through social scientists to ‘revisit’ stuff. Reflect. Agonise. Be curious. Did anything strange or startling happen?] Back in early 2012 I wrote “The trouble is, blocking ‘trolls’ (i.e., people who disagree with you) will lead to twitter becoming a tedious, turgid space where you’re surrounded by similar others, with your views and values protected as kind of cosily superior and untouchable.” Indeedy. Another form of silencing.
A formal complaint about my tweeting was made to my employer a few days before Christmas. A senior academic said I was bringing ‘Oxford University into disrepute’. Quite the allegation. Demonstrating more apparent upset with my tweets about their work than the torture and abuse they were reviewing.
I keep thinking about how angry we should be – as academics, as human rights experts, as journalists, as people – about the abuses we witness? Anger is an appropriate response. How could we not be angry about this stuff?
Yesterday, Bindmans shared news of urgent judicial review proceedings around the appalling situation of a young autistic man with learning disabilities. This isn’t news to many of us and A and his family are not alone in this barbaric situation. And yet this is apparently acceptable. The silence of those professionally involved (across years now) is quite something. A silence that can only act to further silence. How is this enabled or allowed?
During a recent Young Legal Aid Lawyers panel ‘Holding the state to account after a death’, co-panelist and barrister Mira Hammad passionately argued for greater collaboration with activists. She described how much of the training of solicitors and barristers involves learning to be ‘obedient’ [my interpretation]. On Thursday, at an open justice event ‘Does being watched change how justice is done?’ discussion focused on the importance of witnessing and amplifying the content and processes of court hearings. We talked about the micro-violences families experience in court as well oiled barristers defend the state using well worn and often nasty tactics. [I use the term micro-violences here not to diminish the impact of these actions on families, instead to convey how these are often treated as acceptable by the coroner, judge or magistrate.] Louise Tickle who organised the event said this harm underpins why she does the work she does.
I started writing this blog in 2011 as a fun project, naively optimistic about Connor’s future. It has developed into a space bursting with strange and startling. In the last decade we’ve learned, viciously experienced (and documented) how appallingly people with learning disabilities are often treated, how the state response to the death (or serious harm) of marginalised people is often brutal and how many senior, influential people are prepared to talk the talk with zero intention of walking anywhere. We know there is little or no consideration around those people with learning disabilities who live to an older age and little thought around the trauma people absorb across their lifetimes because of the paucity of effective support and a chilling void of imagination. Humanity stripped back to bone and pervading rottenness.
The various means of silencing, big, small, deliberate, incidental which include blocking, censoring, complaining, courtroom tactics, gaslighting and repeated ignoring or dismissal can be powerful tools. And it’s exhausting being depicted or viewed as troublesome, hostile, toxic etc, etc for daring to be angry.
Being angry about injustice, cruelty and worse is important, valid and appropriate. It should concern us, generate engagement and a commitment to both understanding what the anger is about and what we can do to reduce it. Or get shot of it altogether.
Early in the new year, Steve Unwin tweeted a photo of him and his son Joey with a short strapline. This gently humorous pop at the largely ignorant (not in a pejorative sense) world, generated a thread of photos of children, young people and adults doing the stuff they love to do. A virtual slide show of brilliance, joy, fun and laughter. The stuff of love. Steve was invited onto the Radio 4 Today programme on Monday morning to talk about Joey and this celebration.
A moment.
The Maple House Management Suite
Last Saturday, a grey and mizzle-drenched day, I walked to Slade House. I took part in Katherine May’s Wintering podcast a few days before Christmas. During a sensitive and perceptive chat she mentioned how it had emerged at Connor’s inquest (2015) that he’d died in the STATT unit at Slade House. Not later at the John Radcliffe Hospital as we’d thought [howl].
I never went back to the unit after Connor died and was oddly reminded, nudged, bothered about this. Thinking about the place and space where he actually died. Simultaneously within and outside of (anything resembling) an NHS hospital and what this might mean. Words that, even as I type them, generate a mix of sadness and incredulity that continues to defy articulation.
I walked past still familiar landmarks; the Londis (now Best-One); Tim’s Kitchen takeaway; the Corner House pub (now closed); the fire station. My legs and heart slowed at times by quiet dread and sadness. I crossed the road at one point to walk in a different direction. Fuck it, I almost thought, I’ll head off somewhere where the pain is lessened. I barely touched the kerb before crossing back.
I recalled brighter (in light) early and later spring evenings, nearly eight years ago. Driving along this road to visit Connor, returning home without him. Half an hour, longer, shorter, later, earlier trips, with and without family and friends. Sometimes hearing about a trip to Londis to buy coke and crisps. Often hearing little. It always depends on who is on duty.
I reached Slade House. The initial monstrosity of depressing, dark brown brick structures, an unfinished car park, patches of scrubland and cultivated grass areas. I walked past the main office block with meeting rooms and offices where Connor as a pup had occasionally been coaxed to attend appointments. Where, less than four weeks before he died, he was finally paraded in front of a room of who or what? [I still don’t understand.]
On the fence at the far side of the car park was bright new signage pointing towards the STATT unit.
The Maple House Management Suite
The Maple House Management Suite.
There was talk of developing a ‘state of the art’ unit at Slade House a few years back when Oxford Health finally took over from Southern Health. A place to support young people with plenty of space and a shell to work with.
A moment. That became the Maple House Management Suite.
10 years or so ago I was on the slow train home from a long meeting in Whitstable. A mate rang to say Fran’s son J had been sectioned and admitted to a unit in East Anglia. Around 140 miles away. He was 16. I remember crying on that train. Through horror and devastation. Connor…mydaftlife.com
A has (extraordinarily?) remained in this 136 suite since July. He was given notice just before Christmas that he is being turfed out on January 7. In the five months since July (and the months and years before this) no interim space has been found or created locally for him to live while necessary home improvements (a heightened fence) are carried out. Instead, mediocre/failing units in different parts of the country are under discussion. He has a cracking legal team who are working to stop him being moved miles from home. Again.
As staff turn up at the Maple House Management Suite and wider Slade House site tomorrow, A will be finding out where he will spend the next chunk of his increasingly institutionalised life. It could have been so different.
Another moment of utter failure.
Joey and all our children
What Steve, Joey and everyone who contributed to the twitter thread this week did was express, and make visible, what every parent of a disabled children knows, thinks and feels. Our children, like all our children, are loved off the planet.
The moments captured here are well worn, trodden to death (literally) and brilliant. I’ve run out of time to try and present a polished end to this post. I dread to think what will happen to A tomorrow. At the same time I’m left holding onto the power of the disruptive energy which catapulted our children onto a mainstream, flagship news programme. A reminder of the #JusticeforLB campaign and the making of moments.
Joanna Bailey’s inquest finished today. Joanna, 36, died at a private Jeesal Group ‘hospital’, Cawston Park in April 2018. A day after her parents warned staff they thought she was about to have a seizure. ‘We’ll take care of her’ they were told. Joanna wasn’t observed that night, her sleep apnoea machine wasn’t working and when she was found unconscious in the early hours of the morning, four staff members stood by bickering about CPR until the paramedics arrived.
After a week of chilling evidence the coroner this morning told the legal counsels she would direct the jury to determine that Joanna died of natural causes. There was no budging on this. The family’s barrister Oliver Lewis asked if the jury could be shown a photo of Joanna.
The virtual air across the Microsoft Teams court platform became frosty. The coroner talked about this practice happening in criminal courts. It spilled into her courtroom sometimes [‘prison suicides’] and there was apparent agreement between her and the Jeesal Counsel, Mr Walsh, about underhand motives and the emotiveness of photo sharing. The coroner said:
“I really don’t know what purpose there would be unless it’s to register the fact she’s a human and I think the jury know that,”
After a week of being viscerally dissected in front of her family and wider public with a focus on deficit and deceit, fake seizures, allegations of abuse and troublesomeness, this seemed a stretch.
Mr Walsh insisted if the jury had to see the photo [howl], it should be after the jury had delivered their determination. Hmm, that’s not relevant given the jury has just been told exactly what to write. The coroner made this point to him but Mr Walsh would not budge.
“In my submission Ma’am, the usual practice in this court is not to do so. The only concession would be if it’s still required after the jury return to deliver the determination.”
Joanna’s parents were present during this tussle. Witnessing their daughter being treated with the contempt she was treated with in life.
“Could you show us the photo Mr Lewis?” asked the coroner.
A beautiful photo of a young woman appeared on our screens.
“When was this taken?”
“I’m not sure of the exact date Ma’am, it was within the last six months of Joanna’s life.”
The coroner was visibly surprised. Six months? She looks so different. The small photo she had in her bundle was difficult to see but Joanna looked so, so different [from what she’d imagined? Human even?] She decided that the jury could see the photo briefly.
The jury returned. Joanna’s photo was shown on the screen behind the coroner for about 20 seconds.
The blame
The stench of blame is never far from families of people who die in the hands of the state. As consistent and persistent as the production and content of a Big Mac. The photo exchange was horrible to witness. It highlighted the insidious practices of ‘defence’ barriers in dehumanising the dead to serve the agenda of their clients. It further revealed the assumptions and judgements of the coroner which had dripped across the proceedings like a slightly faulty tap. Why the sea change on seeing the photo?
An A4 photo of Connor stood on the coroner’s desk during his inquest. We even swapped it in week two. The coroner’s assistant made sure it was facing the jury daily. Swapping not swaying. We wanted the various, random members of public sitting in witness to our beautiful son’s preventable death to be able to see and hear about him as a person not a composite of revolting records.
As today unfolded and after Joanna’s photo was fleetingly shown, the coroner faced resistance among jury members to her instruction. The jury had asked informed, engaged questions across the week and were rightly puzzled as to why they were suddenly being told exactly what to write. The coroner’s answers were thin and full of holes. When asked why there was a jury, she gave a classic ‘because’ answer. It’s the law.
They eventually produced a list of eleven concerns about the ‘care’ Joanna received and wrote additional detail on the Record of Inquest form. Bloody legends.
A Jeesal medic, Dr Oyefesu, then continued with evidence about improvements the company had made since Joanna’s death. A tough listen in the context of the deaths of a patient both before and after Joanna. During a fantastical account of the glowing Cawston Park focus on health and wellbeing (despite a very recent CQC failing inspection review) Dr Oyefesu mentioned that Joanna’s family had brought her a McDonalds the day before she died.
“Yes… I saw that’, said the coroner.
For some (many?) of us there’s constant rage around these atrocity stories. A rage, deep sadness and despair. Thomas Rawnsley’s inquest also finished this week with a determination of natural causes. His mum, Paula, fighting every step of the way for her son’s rights in life and death while facing brutal resistance. The coroner’s casual and careless apparent agreement with Dr Oyefesu was devastating. The ‘them’ and ‘us’ the discussion had descended into. The worthy and unworthy. The blameworthy and judgemental response in front of Joanna’s parents.
“It’s patient and families fault,” said Oliver Lewis.
Pantomime swiftly ensued. Oh for senior figures to get as angry about the treatment of marginalised people. The coroner and Mr Walsh jostled for position on the outrage stage: “Such an inappropriate comment!” “How very dare you!” “You must apologise to Dr O.” “Mr Lewis you must apologise now!” “I can’t make you apologise Mr Lewis but I certainly invite you to…” The term abuse was even used.
Oliver Lewis apologised if he’d come across as ‘rude and ungracious’ and suggested there was little to be gained from continuing with the evidence.
This evening Joanna’s dad Keith said:
“We have listened in the last five days to a catalogue of mistakes, system problems and poor care provided by Jeesal Group to our vulnerable daughter. We desperately wanted the jury to be able to consider that our daughter’s death was contributed to by neglect because of the gross failure by the Jeesal Group to provide basic medical care. We are disappointed that the coroner refused to permit the jury to consider that Joanna died of SUDEP contributed to by neglect. We are grateful to the jury who took the time and care with the evidence and raised eleven concerns about the services of Jeesal Group which we fully endorse. We have lost our loving, funny and fabulous daughter and, in our opinion, there were so many missed opportunities to avoid her premature death.”
These posts are coming a bit quicker right now. Sign of grim times still. There was an All Party Parliamentary Group (APPG) on Learning Disability meeting yesterday. Barbara Keeley MP tweeted after the meeting clearly laying out the continuing failure to get people out of ATUs. The meeting involved a mother talking about her son’s ongoing inpatient treatment then a load of blather. Helen Whately, Care Minister, was present and again, seemingly excelled in mediocrity.
I don’t know why, nearly 10 years on from Winterbourne View these meetings need to involve the live retelling of atrocity stories. We’ve heard so many now it’s become almost voyeuristic, generating faux horror from a bunch of dusty parliamentarians many of whom couldn’t give a flying fuck outside of that space. It can also be parasitic and draining emotional labour for the storytellers and others present.
The way in which these meetings are organised sustains a narrative of disposable humans and bleak lives while taking time from what should be a clear, focused and strategic discussion on, er, action. It always seems to be the same parents in attendance too. The same small group of cherry picked bods.
This morning on twitter the discussion continued with John Lish dismissing APPGs as a meaningless industry. Five seconds of googling found that it is our old chum Mencrap which organises these meetings. Bit of a giveaway really in calling it ‘Our APPG’ on the website.
Holy macaroni. I tumbled straight back to an underground cafe near the Houses of Parliament where, months after Connor died Rich and I were invited to a meeting at the House of Commons by Mencrap. Not the learning disability APPG I’m now wondering? Surely not… In that dim space, we met other bereaved families and I was given an A4 laminated photo of Connor. Eh?
An hour later, ‘important’ people spoke at the meeting while families sat silently around the edge of the room. Five minutes before the end of the meeting, we were told to stand and hold up our laminated dead.
Seven years on and Mencrap is still laminating the dead. Still following the same revolting template of presenting bereaved or devastated parents to a room of pomp and performance. Nothing has changed. John is right. This is an industry. And further evidence that nothing will change while Mencrap retains the power the organisation has to effectively maintain the status quo in its own self interest.
It’s a funny old time in academia at the mo. COVID-related research funding chucked around at times like sweets at a panto. The typically onerous processes of lengthy, lengthy form filling stripped back to enable speedy knowledge generation and transfer in real time. Action, immediacy, finger clicking are features of a different health and social care research landscape.
In May, the DHSC commissioned Public Health England (PHE) to conduct a review into the deaths of learning disabled people from COVID-19 after concerns were raised about this group. When you die on average 20-30 years before your peers [howl], a focus on how you fare during a pandemic with things like dodgy resuscitation notices, PPE equipment shortages and confusing information, is kind of crucial.
When I’ve more time and I can bear to, I’ll search this blog to see how many times the word ‘Sherlock’ features. A fair few I suspect. I doubt if anyone with (genuine) engagement and involvement in learning disability related stuff could possibly have been surprised by the review findings. Existing evidence, including numerous reviews, which underpins the path to premature death and impoverished lives along the way is now dense.
Less haste and more speed
Unlike the COVID research funding streams, there was no urgency in publishing this review, or even sharing early findings to start the whiff of essential life saving action. As Prof Hatton asks:
Instead a delay of months. I don’t know. Across decades of learning disability related scandals, horror, tears, rage, campaigning, fighting, the preventable death of our beautiful, funny, son and so many other people, this particular delay – during a global pandemic – cuts deep. There was no urgency. No urgency at all.
Senior and other bods in the Department of (Almost always) Health and (Sometimes) Social Care must have known the review findings back in July/August and ignored them. No one cared enough to say ‘Crumbs, we must act now’.
According to the BBC, Social Care Minister Helen Whately ‘has announced a review of the findings’. A review of the review. Pushing action further out of sight.
Scratching below the surface
The outrage the review generated was (for me) unexpected. There’s no guarantee of interest in the findings of any of these reviews. You only have to do a quick google of Winterbourne View and then Whorlton Hall to see the precariousness involved in trying to generate engagement with documented and even visual accounts of torture, abuse and death making (in a so-called civilised society).
Channel 4 News even led with the review in a substantial piece that included an interview with Ciara Lawrence, a self advocate, giving the story the centrality and authenticity it demands.
Sadly much of the response fell down the rabbit hole effectively created by the presentation of the report content and accompanying DHSC press release. It’s never a good look to be caught out effectively culling sections of the population and the press release in particular worked hard to head this off in the following ways:
The inclusion of a handy and superficial ‘get out of jail free’ clause – ‘people with learning disabilities are more likely to have other physical health problems such as obesity and diabetes’. An early marker to place the blame firmly with people, ignoring the core issue of the impact of the systemic and longstanding disadvantage people experience.
Prof John Newton added further fodder to this ‘faulty stock’ narrative with the statement ’It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic. We must do everything possible to prevent this happening again.’ People are made vulnerable by the actions of others, John. You are in a position of power and influence to do so much more than intermittent and ignorant handwringing about this.
A sizeable chunk of the 214 word press release included a deficit laden description of what a learning disability is(n’t) and the Woeful Whately referencing the ‘cruel disease’ trope. Cementing the distance between the review findings and government inaction.
I suspect much of the publication delay was due to comms meithering.
When the swears no longer work
So what are we left with? I don’t know really. The swears have finally (hopefully temporarily) run out. Calls to bung everyone with a learning disability into the shielding category misses the point. Learning disability is not a medical condition and the issues that demand immediate action are (again) long term systemic failings in health and social care support.
The circulation of ‘the most vulnerable group in our society’ narrative is damaging and disempowering. The latest scandal risks using the pandemic to drag us even further back further from meaningful change. The government are complicit in this with the careful othering woven through their press release. For now I’m left with ‘Don’t make me vulnerable, punk’ bouncing around my head.
The wheels of change are grindingly slow in the area of learning disability/autistic support, health and social care. Static really. Talk, so much talk, and little in the way of discernible action. In the last few years, learning disability and autism have inched onto the NHS and social care attention platter which is something. It shouldn’t be noteworthy though given the various stats around life expectancy, employment and wide ranging impoverishment of life which too often extends into death. A blistering letter by Barbara MacArthur in the Guardian last week on the abject failings people continue to experience was widely shared, generating momentary outrage. I did a sort of cry-chuckle when I saw BBC coverage yesterday. Barbara was quoted as saying
“And, of course, I write my silly letters.”
I interviewed Barbara and her son Howard, who are both autistic, 13 years ago when she was 80 and he was 53. She was a veteran letter writer back then.This is what parents do. We act. We do stuff. We try to change stuff. We write silly letters. Meanwhile a new report about research led by Dr Andrew Power at Southampton University underlines the importance of self advocacy, member-led involvement and social interaction in generating good ‘self built’ lives for people with learning disabilities. So important. The report highlights the patchiness of self-advocacy across the UK and I was struck, again, at how My Life My Choice are an exemplar in this area.
The usual suspects
In the last week, the successful bidders for producing the Oliver MacGowan Mandatory Training have been announced. There was a strange moment, a bit like my cry-chuckle, in which despair, fear, bewilderment and resignation rippled across social media platforms.
A bunch of the usual suspects, with a carefully selected token autistic person loosely attached to the National Autistic Society (Autism) and a parent carer loosely to Mencrap, coated with a hefty dose of Positive Behaviour Support (PBS) sprinkles via a third organisation, BILD. PBS can be experienced as an assault by those forced to endure it and yet is readily adopted as acceptable practice. A recent themed review which included 3 clinical trials of the use of PBS found no/negligible evidence it works.
Of the 27 odd groups across England which tendered for this work, it was awarded to the dodgy Mcdodge brigade with next to no involvement of the people whose lives the training will be aimed at improving. A brief foray into the CQC inspection archive (‘It didn’t smell of piss’ TICK) reveals Mencrap and Oughtism really need to get their own houses in order before designing mandatory training for others. The latter has only one domain judged as ‘outstanding’ across it’s entire offer.
Questions instantly started being asked, as they should be, and an odd phenomenon occurred on social media. A bereaved mother (Oliver’s mum who the training is named after) weighed in and held up a grief card calling time on discussion. Odd because any mandatory training needs to start from a position of trust rather silencing. Odd because mandatory training has been a recommendation of various reports over the years and now seems to be ‘owned’ by a member of the public. Odd because it’s 2020 and we know that autistic people and people with learning disabilities should be at the centre of the process yet are barely visible.Odd because the silencing and accompanying blocking was selective. Ian Birrell (above), for example, came off unscathed while various autistic people came a cropper.
The plot thickened later that evening when a parent carer announced he was actually part of the Mencrap training consortium having earlier asked questions of it. His apparent lack of knowledge further highlights the risible public involvement in this process.
The oddness continued yesterday morning when I woke to a message from someone I’ve not come across before who shared a very lengthy DM unexpectedly sent to her. This was a litany of “Sara Ryan does this” “Sara Ryan does that…” “Sara Ryan ridicules the training…”. A cut and paste jobby the kindly tweeter thought and one I had a right to see. Wow. Is this really a thing? Drumming up support (or generating hate) behind the DM wall with grubby missives? [At this point I had a lump of poignancy in my throat thinking back to the joy, transparency and openness of the #JusticeforLB campaign. And how we collectively questioned, shouted, created, critiqued and unexpectedly laughed. I mentally added ‘absence of murk’ to the list of campaign qualities.]
I’m left with sadness about yet another wasted opportunity and more time lost for some people. The awarding of this work to two organisations which cherry pick a small number of heavily stage-managed people to work with, while presiding over failing services, is grim. Both demonstrate a wilful refusal to even start to understand or learn. The involvement of BILD is as chilling. Despite the protestations, it is impossible to believe that the training won’t involve PBS practices. Indeed, BILD have already advertised for a project manager to manage the training and a PBS pilot.
This training has been years in being called for and slow in coming to fruition. It effectively creates a giant empty tick box and a flag for the DHSC and others to wave under the noses of those who raise questions about continuing failings. A bit like the Leder project is described as a world leading investigatory process into the deaths of people with learning disabilities, the new training will be puffed up as something that bears little resemblance to what it actually does.
I hope those involved listen to the concerns raised by many and commit to being open and transparent with their developing work. To those who interpret questions and challenge as ‘bullying’, ‘attack’ and ‘sniping’, I’ll leave you with these words of wisdom from John Lewis.
mydaftlife 