Evidencing indifference, beyond Laughing Boy

Earlier today I published a blog post I wrote trying to capture the experience of attending Laughing Boy, without giving away too many spoilers. This post does not have that luxury because I want to talk about the wider context of Connor’s death, and JusticeforLB’s campaign for justice that followed it.

The horror of what happened to Connor, and to his family is still hard for me to comprehend. Try as I might, despite sitting through numerous investigations, reading copious reports, live tweeting his entire inquest, attending the psychiatrist’s fitness to practice hearing, reporting the HSE criminal prosecution, and thinking about it on and off for a decade, I still can not tell you why Connor died.

I can tell you the mechanics of how, but not all the details surrounding what happened that day. I can share the broader societal context in which learning disabled and autistic people die decades prematurely, but not really explain it.

It is, and I suspect always will be, unfathomable.

Since Connor’s inquest I’ve reported from many more inquests inquiring into the premature, and often preventable, deaths of learning disabled and autistic people. Last month I completed my 26th inquest (you can read all my inquest reporting here). I am currently in touch with 5 more families who have inquests opened into their loved ones deaths. I don’t see any end in sight to the death toll. All of my reporting is crowdfunded and only happens due to the support of many of you, I am eternally grateful.

Two days ago the Infected Blood Inquiry reported. I am always wary of groups or campaigners playing misery top trumps, or trying to use one situation to highlight their own. Having said that, the inquiry reports (which to date I’ve only skimmed) are horrific to read, but contain few surprises, and I wish to draw the parallel between the findings, and what we know, and appear to accept, about the premature deaths of learning disabled and autistic people.

Sir Brian Langstaff, Chair of the Inquiry, concluded 30 thousand people had infections, which he told Sky News’ Sarah-Jane Mee were “life shattering”.

“The scale of what happened is horrifying. The most accurate estimate is that more than 3,000 deaths are attributable to infected blood, blood products and tissue” (Report 1).

He says that deaths keep on happening, week after week. He wishes people to understand this is not something historic, that happened, “it is happening”. He refers to it as a “disaster, which was no accident”.

“It will be astonishing to anyone who reads this Report that these events could have happened in the UK. It may also be surprising that the questions why so many deaths and infections occurred have not had answers before now. Those answers cannot be as complete as they might have been thirty years ago, and I acknowledge that despite the vast number of pages of documents which the Inquiry has examined, some questions must remain unanswered”. (Report 1)

Brian Langstaff says that people put their trust in “doctors” and “the government” to keep them safe, and that trust was betrayed.

“And then the government compounded the agony by repeatedly saying no wrong had been done”.

Brian Langstaff is talking about the Infected Blood Inquiry, but he could be speaking about the premature deaths of learning disabled and autistic people. Except there is no Public Inquiry in to the failure to provide safe care to this group, who have been failed since the NHS’s exception in 1948 (more on that soon when a work project goes live).

Throughout JusticeforLB following Connor’s death, Sara was always staunch in her refusal to be portrayed as a warrior mother, crusading alone and seeking justice for her son. She was relatively unique in *always* situating Connor’s death in a much wider societal failing. It was never just about Connor, it was not about his name, there was no sniff of ego, it was always about the failings that Connor endured, and that so many others endured, and continue to endure. To steal the words of Brian Langstaff, “it is happening”.

It is happening as I write this and you read it.

The most recent LEDER report, published in November 2023 recorded 3,648 deaths of learning disabled and autistic people reported to them, against a backdrop of 12,398 deaths recorded in the three years previously (2018 to 2021). They found 42% of deaths they looked into were avoidable last year, 50% the year before, but we know this is just the tip of the iceberg, not least because reporting deaths is not mandatory.

We know thousands of learning disabled and autistic people are dying avoidable deaths each year.

Laughing Boy brilliantly tells Connor’s story, portraying his family’s love and quest for answers and captures some of the campaign that emerged following his death. (If you wish to see it, you can get tickets for Jermyn Street Theatre London until the end of the month here, and Bath Theatre Royal 4-6 June here).

It situates Connor’s death, within a wider backdrop of many, many others. It is not (solely) the story of one family’s search for answers, it is a universal portrayal of many families experiences in seeking justice when their loved ones die. There is familiarity, and solidarity in shared struggles.

These faces are all people whose inquests I have live tweeted or reported, since Connor’s inquest.

Andrew Marber was a playright, a director and an actor. He was in his mid 50s when he died. His mum, Angela, kept notes of his stay in St Helier hospital, and the failings she witnessed in his care when he was admitted following a heart attack. She represented herself at his inquest, as there is no statutory Legal Aid for bereaved families. Andrew had Noonan’s syndrome and autism.

Chris Nota was a young autistic man with his life ahead of him when he died, aged 19. The coroner found numerous factors contributed to his death, including a “lack of autism-focused approach to the assessment of Chris’s mental health and his care planning” contributed to his death. He also found “inappropriate and unprofessional judgements” were made about his mother.

Coco Bradford loved Justin Bieber, Little Mix and In the Night Garden. Coco was suffering from diarrhoea and vomiting so her parents took her to A&E at Treliske Hospital, they sent her home. The following day Coco was taken to hospital by ambulance and admitted for three days, before deteriorating further and being transferred to Bristol where she later died. The coroner concluded there were a number of failings and missed opportunities to provide Coco with the care she needed. She was just 6 when she died and looking forward to starting school full-time. She was autistic.

Colette McCulloch was a poet and an artist. She was 34 when she died, having received a diagnosis of autism just the year before. The coroner found that Col was “failed by the lack of mental health assessment and by an inadequate regime at Milton Park”, the ‘specialist’ hospital where she was a patient at the time of her death.

Danny Tozer enjoyed travel, playing his piano, and outdoors activities such as running, walking, cycling and horse riding as well as visiting the seaside, pubs and cafes with friends and family. Danny had epilepsy, learning disabilities and autism. He died in the Mencap home where he lived, following an unwitnessed seizure. He was just 36 when he died.

Danny Willgoss was into fitness, he played rugby before injury forced him to stop, then turning to boxing training and Mixed Martial Arts. He was 25 when he died from an overdose of prescription medication. He was autistic and had ASD and post concussion syndrome.

Jared Botham happily lived at home with his mum and siblings for 18 years, but had lived in Supported Living for just two years when he died, aged 20 from a bowel obstruction. It was only chance, because a member of staff who knew Jared well had left something at work and she stopped off to collect it, popped in to check on Jared, and realised he needed to go to hospital, that the decision was made to call an ambulance for him.

Jessie Eastland-Seares was a kind, generous, funny, impulsive, strong, colourful, inspiring, unique and unforgettable activist and young autistic woman. She was 19 when she died. The jury in her inquest found that “systematic failures in Health and Social care led to a series of events, which caused the deceased periods of dysregulation culminating in regular bouts of self-harm, which ultimately ended in death by misadventure.”

Joe Ulleri was a much loved son, brother and friend to many, not least in the L’Arche community where he lived in Manchester. Joe, who had Down Syndrome, was 61 when he died. He went into hospital after a fall at home, initially he was sent home from A&E, but his carers took him back the next day where it was found he’d broken his hip. He was admitted to hospital and the jury at his inquest concluded that failures in his care, amounting to neglect, caused his death. Joe died from malnutrition after staff failed to ensure he was fed, despite his family and carers efforts.

Kristy Saleh was the youngest of three daughters and a much loved family member. She was born in Greece but her family moved to the UK when she was 6. She had learning disabilities, autism and epilepsy. She was 14 when she died, after a 6 day hospital stay due to constipation, which her family believe was not resolved before she was discharged. Her death was as a result of a DVT, due to her immobility in hospital.

Laura Booth loved people, and people loved Laura. She was her parents’ miracle baby. She was admitted to hospital when she was 21 for a routine eye operation. Laura’s potassium levels were too low for the operation, she was admitted to a ward and she died 3.5 weeks later. Her parents consider that she was starved to death. The coroner found her death was contributed to by neglect, and that she was suffering from malnutrition as staff failed to ensure she was fed.

Matthew Copestick had an unwavering devotion to Rochdale, which when combined with his impeccable manners, meant he never left a match early. Matthew was autistic and liked order and structure. Matthew was 21 when he died from sudden and unexpected death in alcohol dependency. Days before he died he told his mum that he wanted to detox before he died. He was discharged from hospital, a decision the coroner ruled should never have happened, adding there was “no adequate assessment” of whether Matthew required an inpatient admission for alcohol detoxification.

Peter Seaby was 63 when he died. He lived happily and healthily in the care of his family for 62 years and was in the care of the State for less than six months before he died. Peter had two inquests after the first was quashed following the coroner misdirecting the jury. At the second inquest the coroner found Peter died from aspiration pneumonia and that inadequate preparation of and supervision of his lunchtime meal in the Priory care home where he lived, possibly contributed to his death.

Richard Handley loved his family, food, his weekly theatre group, Mars bars and diet coke. He enjoyed tickling the toes of people he liked, farting, films, Mr Bean and Saturday night takeaways with his housemates. He had Down Syndrome and lifelong problems with constipation, exacerbated by communication difficulties and medication. Richard was 33 when he died, from aspiration of gastric contents due to a large bowel obstruction and surgery to resolve faecal loading and impaction. The coroner found “gross failures” and “missed opportunities” in the care provided to Richard.

Sally Lewis loved music and dancing, especially to rock and roll, her favourite song was ‘I like it I like it’ by Gerry and the Pacemakers. On Sunday afternoons her family got together, there was regular dancing round the living room and the highlight for Sal was always the party tea where you had to be quick with the fondant fancies or she’d demolish them all. At the time of her death Sally had lived in care homes run by Dimensions for twenty years. The coroner found “Sally died as a result of faecal impaction, caused by chronic constipation. For the ten months prior to her death the medication prescribed to treat her constipation, on an as required basis, had not been given to her”. He found that Sally’s death was contributed to by neglect. Earlier that year Dimensions had successfully had a criminal prosecution brought against them by CQC halted due to a time limit technicality.

Sammy Alban-Stanley was a much loved older brother to his three sisters, and an adored son and grandson. Sammy had a wonderful sense of humour and happy disposition. He was a skilled craftsman making wooden boxes and bird boxes. He was autistic and had Prader-Willi, so wasn’t allowed to attend school in the covid pandemic. His mum begged for help, from anyone who would listen. The coroner found multiple failings in the care provided to Sammy and concluded she was satisfied it was possible, if not probable, that a failure to provide adequate support contributed to Sammy’s death. Sammy was just 14.

Sasha Forster loved butterflies, unicorns and bubbles. She believed you can’t say ‘bubbles’ and be cross at the same time. She loved experimenting with hair colours, platinum blonde, blue, pink, purple. She preferred black nail varnish with extra glitter on her middle finger and loved to be asked why, flipping the bird in response. Sasha had OCD, PTSD and a history of self-harm. She and her family had long believed her to be autistic, the assessment report confirming this was only finalised after her death. The jury at her inquest found Sasha died from suicide, whilst on leave from a mental health hospital. Three Prevention of Future Death reports were issued, one of which was sent to 10 different organisations. She was just 20 when she died.

Thomas Rawnsley grew up as the youngest child in a family with three older sisters. He was compassionate and mischievous. Thomas liked ketchup, gansta music and going to the park. He was autistic and had Down Syndrome and communicated through Makaton. As a teenager his mum asked for more support to keep Thomas at home and instead he was taken into care. Once in care he was abused (a support worker who abused him received a suspended jail sentence), and unsurprisingly Thomas became mistrustful and received no therapy or support to deal with his trauma. Thomas was moved to an Assessment and Treatment Unit where he was heavily medicated and terrified. He was then moved into a service run by Lifeways, his family raised concerns about the care provided to him there. The coroner instructed the jury at Thomas’s inquest to find he died from natural causes, his mum still does not understand how a fit and healthy 20 year old can die from a chest infection.

I wanted to write this post and tell you a little about each of the people projected during Laughing Boy. A reminder, if we need it, that this is happening all too often. That Laughing Boy is Connor’s story, and the story of so many other families.

On the second occasion I saw Laughing Boy I was delighted that family members of Andrew, Col and Sammy were all there, along with Sara. In the Q&A before the performance, Andy and Amanda McCulloch told those present that Sara had “led the way” for so many other bereaved parents, that she was an inspiration to them.

She is remarkable. As are all the family members who seek to find answers in what we now know is all too often a repugnant, divisive and defensive process. To borrow the words of Brian Langstaff again, this is not historic, it is still happening. Something has to change.

One comment on “Evidencing indifference, beyond Laughing Boy”

Rose Thorn says:

Thank you for your post detailing so many lost and beautiful souls. May they all rest in peace.

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