Tag Archives: learning disability

Kicking off the Social Murder Festival, July 6, Manchester Met.

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On July 6 around 60 people gathered at Manchester Met to celebrate the start of the one week Social Murder Festival. Self-advocates, family carers, academics, journalists, artists, third sector organisation representatives came together to discuss the social murder of people with learning disabilities. A day spent in solidarity, urgency, community and action.

George Julian has written a comprehensive summary of the week here with key takeaway points. A beautiful set of photographs were taken by Paul Clarke, and Lil, a filmmaker with TAPE is completing a smasher of a film about the Festival. Becky Whinnerah spent the day sketching.

Here I want to talk about that first day. I’ll write about the remaining days over the next week or so. It’s been much to absorb.

The week was funded by Man Met with additional funding from our Reigniting Debate project led by David Abbott. The Festival was arranged at short notice which meant that the help the organising team of George, Francesca Ribenfors and myself received was very much appreciated. It was an extraordinary experience to have the space, place and funding to be together, talk and make action plans.

It was also extraordinary only three invitees couldn’t come. We wondered if there would be some discomfort about the event name. Instead the term social murder was welcomed as empowering, strangely liberating even, and while it was hard to hear self advocates and family carers talk about the relevance of the term to them, it was good to have language that cuts through the bullshit in this area. People understand it. Angeli, a family carer who chaired the day with self-advocates Beth Richards and Nathaniel Lawford, said her 70 year old dad got it straightaway.

We know and nothing happens.

The term ‘Festival’ was initially questioned by one or two people online which was ironic given social murder was accepted. This discomfort seemed to ease as the week unfolded.

Day 1 was divided into three sections about what we know, don’t know or refuse to know about the preventable deaths of people with learning disabilities. Speakers included the ‘We Can’t Wait’ group, Manchester People First, Michael Brown, Francesca, George, Megan Linton, Saba Salman and Chris Hatton. Everyone smashed their 10 minutes and the discussion time was filled to bursting with powerful contributions. The Festival spill over space where Naomi Jacobs and Georgia Rivers were ready to make zines, crafts and more remained largely empty.

The day ended with a performance from the unapologetic and uncompromising Uncurbed Collective. After a day of so much (unexpected) energy, anger, laughter, discussion, rage and hope, we watched a mesmerising and harrowing performance that was almost too much to bear.

Though of course it wasn’t.

As people headed off to the station and home, we readied ourselves for Day 2.

Without wanting to give any spoilers away before writing about the rest of the week, we produced a strong set of action points to work on over the next few months. I don’t think we could be any more mindful that very little lands in this space with real impact (while acknowledging we now have a Prime Minister prioritising social care with promising words).

Onwards and upwards.

Social murder July 2026

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I’ve followed the inquests of over 30 people with learning disabilities for a decade now through George Julian’s meticulous reporting. These began as live tweets, magnificent threads dripping with horror then shifted to lengthy daily summaries of proceedings. Each inquest, involving a much loved person who was revoltingly failed, is a difficult read, sometimes wincingly so. Daniel Lindsay’s inquest which ended on Friday was near impossible to follow. Daniel was a quiet, gentle 41 year old man who loved playing on his Playstation. George has written a comprehensive commentary about his inquest here.

In my book about social murder I write about a loose collective of people (health and social care professionals, politicians, policymakers, national charity staff, sometimes family members etc) who are implicated in these premature deaths. Loose collective members have varying layers of ignorance which relate to misunderstanding, ignoring or refusing to know what is happening, and where failings lie. The collective is loose because people can move in and out of it. Enlightened people who remove themselves from the collective are probably some of the best allies and activists in this area.

Daniel’s inquest had quite the cast of collective members. The most important being the coroner whose ignorance about people with learning disabilities made the skin on the back of my hands prickle. She insisted Daniel could not communicate despite evidence he was trying to communicate about his throat pain and discomfort over time from various witnesses. She accepted woeful evidence from a range of ‘experts’ who knew nothing about people with learning disabilities all of whom said nothing could have been done to change what happened.

That someone can die from choking because their undiagnosed throat cancer is so advanced is grotesque and can only be a massive red failure flag in terms of the provision of health and social care. The coroner went on to record her ignorance on public record by determining the cause of Daniel’s death as 1a) choking 1b) locally advanced oesophageal cancer and 2) Down syndrome and learning disabilities.

People cannot die from Down Syndrome and learning disabilities. That would be like dying from having curly hair or size 6 feet. Gruelling, unacceptable ignorance which blames Daniel for his death and absolves the myriad failings that led to it.

The government states coroners must ensure relevant facts are fully and fairly investigated and are the subject of public scrutiny during the inquest hearing. Coroners can’t be an expert in everything. That is why they call expert witnesses, to fill gaps with knowledge and experience. The coroner did not call an expert in learning disabilities despite stating she knows little about this area. She is an example of refusing to know which comes with chilling consequences given her role. Daniel’s family are devastated and crucial failings in his care have been left unchallenged.

Yet more evidence in the bulging evidence bank of social murder.

One of the action points of our recent Social Murder Festival is to contact the Chief Coroner about ignorance among coroners which urgently needs addressing. That this inquest unfolded at the same time as the festival speaks to how far we have to go. The festival itself, however, was a force for change, empowerment, hope and anger.

Onwards and upwards.

Accessing health and social care for people with learning disabilities: sense, commitment and passion in the Lords

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A one hour debate in the Lords on Thursday blew some dusty old cobwebs away with blistering contributions from members. The film can be watched here and transcription here. It’s well worth making a brew and having a watch or a read. Personal experiences underpinned the debate with respectful and sensitive acknowledgement of the deaths of Patsy, Myles, David Lodge, Connor and many other people with learning disabilities.

Lord Paul Scriven was the force behind organising the debate and set the tone, stating the current situation is simply not acceptable. “Saying that tweaks will be made to a fundamentally broken system is an acceptance of the status quo that killed Connor a decade ago, and it is the same status quo that killed my nephew.” He referenced social murder arguing “state-sanctioned erasure whereby those very institutions aware of the risks to life choose to maintain the status quo rather than dismantle it”. Carefully dismantling current interventions that are often used to suggests a job is being done well, he listed the safeguards and reasonable adjustments Myles was supposed to have which failed. At Myles’ inquest, the coroner “found a culture stuck in another era where clinicians had only a superficial grasp of regulations and communication was unsafe”.

Why has the machinery of oversight failed so spectacularly, asked Lord S, as he described the CQC as a regulator of process and the Leder review a toothless archive of tragedy. I felt like punching the air as processes, interventions and programmes were punctured with intense sense and clarity. The government is acting in “a startling vacuum of oversight”. We are propping up what is a death making system. “We need a systematic reform of the implementation, accountability and regulatory framework that moves beyond paper policy and puts the actual safety and survival of human beings at the very heart of the system.”

Baroness Ramsey described the woeful health experiences of her sister Patsy while Baroness Hollins focused on the death of David Lodge which was again dense with failings. Digital flags, and patchy annual health checks were discussed with sadness as Baroness Hollins has been a central figure for decades, as a medic and a parent, involved in myriad initiatives while little has changed. “The question is no longer what needs to be done to ensure the safety of people with learning disabilities in health and social care settings, but why is it not being done?”

There is zero accountability.

Subsequent speakers raised the lack of accountability, the presence of interventions with no ‘heft’. As Lord Addington said “it is great having a flag, but what do we do when we see it?” There is some irony that the focus is on ‘flags’ while social murder happens in full view.

Hearing these words spoken in Parliament was refreshing. There was an energy set by Lord Scriven’s refusal to allow white noise to cloud the area, to allow empty words – annual health checks/digital flags/mandatory training/annual death review – to fill space. Human rights breaches are documented, evidenced and seemingly unstoppable. In the room yesterday, broadcast and laid on record, were determined, evidence-based, passionate words. As Lord S beautifully reminded us, Myles is “a citizen, with an inalienable right to safe care and an equal right to long life”.

He is indeedy. Thank you.

Adventures in Zagreb

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In Zagreb with self advocate Beth Richards to talk at the fourth annual Mental Health and Autism conference organised by a small group of reluctant activists/autistic mothers.

We ate štrukli, wandered around the Festival of Lights before the conference was opened by Zagreb mayor, Tomislav Tomašević.

The day was intense. I talked about social murder, flourishing lives and the Laughing Boy production. Beth offered insights into her involvement in various projects. The Lost in the System panel, including Kristina Karlović, Jelena Čupković-Premuš, Ljilja Ivanković, Marko Buljevac and Raphael Bene, talked sense while listening to lengthy impassioned/desperate contributions from parent attendees. Niamh Mellerick offered an unusually plotted request for recognition that well meaning actions in childhood can have long term impacts for autistic children. Matea Begić Alić finished up, talking about her research into autistic people’s lives and support.

Today Beth and I ran a coproduction course at the University of Zagreb for a team of researchers pioneering different ways of doing research in Croatia. A lively and engaging conversation with the sweetest cabbage for lunch.

Contrasts, similarities and moments. Shared atrocity stories, sadness, disbelief and anger spilled into the conference and course. There’s a long way to go to change practices in Croatia though in many ways we’re not much better in the UK. Eighty odd years after the establishment of parent led groups like Mencap, the four organisers worked in the background during the conference. No limelight seeking, egos, photo opps or desire for acknowledgement. They simply want things to be better.

Legacy, the long haul and mixing up the plastics

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Having a major clear out (again). Stuff in the loft in our old house packed up, moved up north (after several months in storage) and stored in a big old cupboard here in Buxton for four more years.

This work is inevitably charged. Small stories fallen into cardboard box cracks, separate from curated childhood memories. Lego pieces, Playmobile accessories, torn ticket stubs, photos that didn’t make the album cut, newspaper cuttings. Unexpected chuckles, breath-stealing sadness.

It needs sorting because the sentimental value of objects, of stuff, doesn’t necessarily translate. Story/memory-making happens around and beyond things, anchoring them in time and places that aren’t always apparent.

A Chatsworth car park ticket. Peak District holiday as pups. Our dad parked on a grass verge next to a ‘No Parking’ sign the size of the house he wanted to film. He took his camera out of the boot and locked the car keys in it. Oh my childhood days. Waiting, waiting, waiting. The day derailed with awkwardness. Handstands and cartwheels. Passing drivers clearly marking the rule breach. A policeman finally pitched up with a biscuit tin of metal car keys to release us. So much more than a parking ticket.

Some stuff does speak for itself. Protest and protests. Reported, repeated dated events.

A Guardian Society piece from 2003. Donal MacIntyre arguing for a home assault law to recognise that ‘the deprivation of social contact, denial of food, medicine and care, and infliction of petty humiliations and degradations can constitute abuse and should be liable to prosecution’. He describes the newly created Commission for Social Care Inspection (CCSI) as ‘the future but unless it determinedly disassociates itself from previous passivity, then little will change’.

Prophet Donal. Pre-CQC, Winterbourne View and so much more.

Letters I’d forgotten writing.

Hey, Anneliese Dodds MP, what’s going on with the woeful progress of the Leder programme? (Always receipts when you throw nothing away). Prof Stephen Powis, NHS England, typed the type here. Delays, failings and always more to do.

Where’s Prof Powis now? Does he remember writing these words, defending the indefensible, and putting his name to them? What remains of the Leder review seven years on is the stuff of dogs dinners.

Finally, our Michael. Michael Edwards. President of My Life My Choice. An article I cut out and kept when Connor was walking on Welsh beaches without an inspectorate, quality, standards commission care in the world.

Michael tells the story about sorting plastics in an Oxford centre.

I marked these sections back in the day before I met Michael and My Life My Choice. Reading about the mixing up of plastics cut me to the core before I had the words or even thoughts to make sense of it. Oddly, rightly, this article was instrumental in me getting in touch with My Life My Choice a few years later when I had my first research job. Eventually developing a relationship of friendships, love, laughter, care, commitment, collaboration and activism. Something I treasure beyond words.

It doesn’t take much to join the dots between these stories plotted from randomly stored stuff. People involved/implicated and then absent. Exposing, reporting, ‘leading’, deflecting with little or no sustained thought for the people and their families harmed by these enduring abuses. People who continue to resist and stand taller than that ‘no parking’ sign from back in the day.

Rethinking and refreshing… a bit of a book update

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The book. Ah the book…. Six months after publication. A kick ass review from Simon Jarrett here (behind a paywall, sorry, though will share some tasters below). 

There’s been a fair bit of interest and invitations to talk about the book. A keynote talk at the Salford University Learning Disability Nurses day in November, a Social Care Institute for Excellence (SCIE) Roundtable on institutional violence in London in January, a Supported Loving seminar last week, a Wolverhampton Council Lunch and Learn session this week. The annual CANDDID conference in March. Pam Bebbington and I have just recorded a Keynote session for the British Institute of Learning Disabilities (BILD) annual conference in Feb. Audiences include people with learning disabilities, public members, support workers, providers, commissioners, social workers, representatives from NHS England, the Dept of Health and Social Care and the CQC, and academics.

I’ve approached these talks with slight hesitation, apologising for the grimness of the content of the book, and its key messages. I’ve made it clear I didn’t set out to write the book it became, and I don’t take any pleasure in relaying such damning arguments. 

The comments, questions and feedback have been almost universally positive at these events. Perhaps those seated quietly at home or in the room have mentally cussed or bristled out of sight. At a very early event the panel chair stated forcefully they weren’t part of the problem and neither were other psychiatrists they knew. Overall, however, there has been a consistency in response; careful listening, retelling of stories and example offerings to add to the bursting evidence base. 

I’m beginning to sense some relief among some audience members. Possibly because the unsayable is now in book form, legitimatising stuff that has long worried, concerned, agonised and itched. There have also been a few comments (including in Simon’s review) along the lines of ‘some of this stuff is familiar to me but when you view it through a lens of erasure and social murder it’s so blinking grim.’

An extract from Simon’s review;

I’m on a train from Bristol to Stockport on Friday afternoon writing this. The train is rammed with the usual scrum over seat bookings and baggings, ever present shitty behaviour. One man was disgruntled someone had taken his booked seat and wouldn’t show his ticket. A young man, on his way to a weekend Hen Party sitting behind me offered his seat. The man declined. This young man during the next 20 mins until Birmingham (when the seat-sitter got off), fetched a drink from the train shop for another passenger sitting next to him with a label pinned to his jumper showing his name and destination. When he got off the train, he scooped up empty cups from the space around Mr Seatless, who is now sitting in his seat playing solitaire on his ipad. Calm, peace and quiet kindness. He said he felt so disrespected by the person refusing to show his ticket.

We’ve really got ourselves into a proper mess over the treatment of people labelled with learning disabilities who should not be living in an extraordinary world. A world replete with disrespect, contempt and worse. We can all do better. In tiny, seemingly inconsequential, or bigger, ways. Listening, offering support and clearing up mess. Repairing disrespect.

I’m not going to apologise for the book any more.

And I’ll end this post with another extract from Simon’s review.

Thinking about Critical Health and Learning Disabilities

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We walk Sid, our scruffy dog, up the road most days to a nature spot called Lightwood. A stunner of a piece of Peak District and the site of Buxton water. A regular and wise wildlife lover, known locally as ‘Mr Lightwood’, was up there on Friday bending over a fence post.

‘Look!’ he said, calling us over. ‘The ladybirds are here.’

Wooden posts with ladybirds. In the middle of winter.

I never knew.

In my book ‘Critical Health and Learning Disabilities’ (including a link to a downloadable plain English summary), I argue people’s impoverished lives and preventable deaths are a form of social murder. We know why and how people die early and nothing is done to ameliorate this. I suggest many are complicit in this, including researchers. Through our work, words, writing, assumptions.

David Abbott’s reflections on reading the book beautifully capture this;

People being denied citizenship, denied life, denied love. Systematically, casually, deliberately. It made me want to cry tears of anger and deep, deep sadness, see my own part in it all and then get on with trying to be a useful ally. That the book is needed is a terrible indictment. The question it leaves me with is what now? It cannot be more of the same.

What now indeedy?

I’ll start with a short series of posts picking over key ideas in the book. Starting with absurdities which remind me of a fridge magnet back in the chaotic and delightfully groaning space when our kids were pups. A Voltaire quote captured in a stark font coated in a neat and snazzy Perspex rectangle fridge magnet accompanied the opening, grabbing and repeated slamming of the fridge door:

Those who can make you believe absurdities can make you commit atrocities.

Absurdities and atrocities. Powerful, important words that seemed at the time to apply to way bigger stuff than us.

Some examples of absurdities from the book…

People with learning disabilities experience baffling levels of surveillance and control across their lives. A chapter on sex and intimacies draws on research documenting open bedroom door policies in supported living effectively inhibiting privacy. A swift snog in a day centre can lead to the removal of one of the loved-up pair. Permanently. There are few opportunities for socialising.

At the same time, around 1 in 4 women with learning disabilities experience sexual abuse. One safeguarding report described how a woman was dressed in ‘high tight knickers’ and locked in her room to keep men away from her. The use of infantile language effectively downgrades consideration of abuse, and resistance to discussing sexual intimacy creates conditions that allow the unspeakable to happen.

There is little support, information or advice to help negotiate relationships leaving people unsure of, or easily persuaded that, intimate relationships and children are not an option. If a woman becomes pregnant she is unlikely to receive appropriate antenatal support and more than likely to have the baby taken from her. Evidence shows family court judges cook the books to ensure this.

Actual evidence.

There is evidence people (a wide range of people) uncritically accept these absurdities without apparent knowledge, sense or clarity. I was a guest with Pam Bebbington on a BBC Access All Areas podcast. The programme ‘The 40 year olds who are in bed by 5pm’ discussed our Growing Older research findings. In relation to 5pm bedtimes, the disabled presenter commented;

But Sara, many of the professional bodies who are looking at the quality of care for older people with learning disabilities might say that the system is working because these people have access to good food, they have access to decent lodgings. I mean, you’ve mentioned many of the problems, but I guess it’s hard for a professional body to say something is wrong if the basic needs are met.

Basic needs met. Nosh, warm home with the cost of a blanket 5pm ‘bedtime’. No whiff of wondering what this might feel like, or what other indignities or worse are inflicted on people who count so little they are systematically denied evening time. Every day.

A final absurdity (for now). The surveillance and control bouncing across people’s lives is meticulously switched off when they unexpectedly die. Mandatory death reporting and investigatory processes do not apply.

The person died of ‘natural causes’, the bedroom door finally closes and those who should be doing or saying something are silent, absent even.

No curiosity. No interest. The recent retraction of the latest, ridiculously delayed Leder report is a classic example of these absurdities in relation to the deaths of people with learning disabilities. No information beyond the retraction and a blanket ignoring* of questions about it from anyone involved (the government, NHS England, three universities and three organisations). Not a dicky bird.

Nothing to see here. Unless you look carefully.

*A caveat to this is the work Paul Scriven has been doing in the Lords to try to gain answers and accountability.

Come again?

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Another day, another inquest. George Julian in court in Woking. Her commitment to shedding light on the horrors embedded within our health and social care systems is extraordinary. This week, it’s 41 year old Daniel. Daniel was living in a 16 ‘bed’ place called Ballater House. He died of choking.

Yesterday the witnesses included two nurses and a support worker. The evidence was woeful. Nobody could say anything about Daniel other than he liked folding clothes and trainers. Trainers were used to bribe him to eat. What was that? To bribe him to eat? Yep. He was told he could see pictures of trainers if he ate his food.

Bribing. Connor was told he could go home if he attended a social group in the unit.

For some months before he died, Daniel made noises at meal times. This definitely was not related to swallowing problems said the clinical lead nurse. Definitely not. Daniel was “nauseating”. And how do you know this, asked the coroner. Because it was nauseating.

Alongside the unusual retching type noises which definitely weren’t swallowing related, Daniel refused to eat anything other than sandwiches for a month before he died. Sandwiches for breakfast, lunch and tea. The nauseating continued and nobody cared enough to really do anything.

Virtual appointments were held with GPs, the hospital phoned the ‘home’ on four separate occasions about Daniel’s health. The calls went to a voice machine in the nurses office and no one bothered to listen back to them.

There was the usual lies and bullshit on show. The lead clinician demonstrated next to no knowledge about diabetes care and said he was not on duty the night Daniel died. He seemed to think he had no responsibility if he wasn’t in sight of Daniel. The absence of healthcare was nothing to do with him. He knew about diabetes from back in the day.

The coroner proved herself to be part of the collective (a loosely defined group of people who contribute to the impoverishment of people’s lives) I write about in my book. She slapped down the family barrister for asking the witnesses questions she’d asked. There were no answers though. No answers at all.

Each question was met with fumbled words generating more questions. More bafflement. More rage and more disgust at the shite that passes for care in this country at such a human cost (well and the ££££s these places charge). Local authorities and commissioners are slumbering or simply do not care. Containment is the name of the game here, as each inquest covered by George reveals. And if that containment is lacking in any basic care, so be it. Disrespect was also in the room. Witness phones ringing and a lack of listening to the questions.

Come again?

This is social murder.

Excuses, delays, death and social murder

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George Julian has taken on the grim task of working her way through responses to Freedom of Information requests she sent to every Integrated Care Board (ICB) in England. [The words ‘integrated care board’ ratchet up my snooze button so I’m trying to stay jiggy writing this, not succumb to the malaise and weariness these terms generate.] George asked them for their latest Leder data and publication plans for their next reports. She was trying to find out the state of play with the data that has been collected by each ICB since the data included in the latest (2023) Leder report (published in Sept). Each ICB feeds its data/reports to the mothership now based at Imperial College under the quiet (silent even) steer of Prof Strydom.

[I took a trip down blog memory lane and found this post about the 2017 Leder review, also published late and covered up. There is form here. Depressing to note the publication of the review generated live national news coverage then. Now it’s as if someone has left the report on the returned book shelves at an unmarked local library.]

So what can we conclude from the ICB responses to the Leder process?

  1. Rumours of changes to the Leder programme.
  2. No dosh to do the work effectively and an associated lack of staff with dedicated time.
  3. Problems with systems, accessing and uploading data. Outages and smoutages.
  4. ICB restructuring has worsened the process. [There’s always a restructure to be had].
  5. Delay, delay, excuses, excuses and a further muddying of report years and deaths reported.

It’s fair to say the Leder process has erased any consideration of the people who died. It’s a clunky, dilapidated conveyor belt of ‘notifications in’, ‘complete reviews’ out and a growing number of unfinished reviews. A dogs dinner. A flawed process which has descended into farce. Hints and whispers of ‘this process is shite’, ‘who cares’, and ‘I don’t want to do this’ foot stamping.

And then chillingly Dorset report: “Approximately 90% of all reviews have identified little or no significant learning in the last year, which raises the question of the value of completing a review for every case.”

Get that sledgehammer out Dorset and smash the remaining bits of humanity, respect and reason for trying to learn from the premature and often avoidable deaths of people with learning disabilities and/or autistic people.

There’s no new learning, people are gonna die cos we ain’t changing shite so let’s just stop reviewing every death.

And there I was, literally a month ago, publishing a book about the social murder of people with learning disabilities.

10 years, 10 points, 10 minutes

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Last night LDN Charity organised an event ‘Spotlight on the abuse of people with learning disabilities’ at the London Canal Museum. The panel, chaired by Simon Jarrett, consisted of Alexis Quinn, George Julian, Amanda Topps and me. Contributions from the audience were as powerful as the panel presentations and the sense of anger and commitment to change in the packed room was palpable. This is what I said:

Last week was the 10-year anniversary of our son Connor’s death in an NHS run ATU. He drowned in the bath while staff did an online Tesco order in the office next door. Ten years has allowed time to think about what unfolded and why, and in doing so different aspects have become more prominent. 

Given we each have 10 minutes to talk it seemed appropriate to produce 10 points of reflection about what happened to Connor (and others) and to think about what the lack of any real shift in the use of ATUs means.  

ONE. Connor was a beautiful, much loved, funny, talented and wonderfully complicated young man. He loved deeply and contributed so much to our family (and wider) that we are left with a chasm in our lives and hearts so full of love I can sometimes barely breathe.  

TWO. The day we had Connor admitted to the assessment and treatment unit (ATU) a mile or so from where we lived, I didn’t know Winterbourne View was an ATU. I didn’t know what an ATU was. I thought we were taking Connor to a specialist NHS hospital unit that would be staffed by uniformed and identifiable health professionals for a few weeks to understand why he had become so distressed and unpredictable. Connor had loved visiting his grandad at the JR hospital just weeks earlier. The locum medic who came to our home to assess Connor beforehand even said there would be a ward round that evening.  

I’m not sure what this not knowing, this ignorance means still. There was so much we didn’t know then. And so much people don’t know now.  

THREE. Connor was admitted on a Tuesday evening. The responsible clinician whose office was in a building across the car park from the unit, didn’t bother to walk across and see him the next day. Wednesday. Or on the Thursday or Friday. On Saturday, she went off on holiday for two weeks. Again, we had no idea. There was no ward round, no crisis specialist intervention, no urgency, information, interest. No nothing. Just our boy catapulted from his family home into a space that defies words. 

And this was apparently fine. 

FOUR. We met the lead paramedic who responded to the call that hot, sunny July morning before we moved from Oxford in May 2021. He was a friend of a friend of one of our children and asked to meet us. He said the ambulance overshot the turn for the unit that morning, There was no one outside directing it in. When they got to the unit, the door was locked and someone was painting the outside windows. He was bewildered by this lack of urgency and the absence of information from those present. He said his team had nothing to work with, nothing to base their treatment decisions on. The unit staff were literally clueless and said nothing. There is no pretence of healthcare, death care or any care in these places.  

And this is apparently fine. 

FIVE. After 2 years of health and local authority records being disclosed and 4 pre-inquest hearings Connor’s inquest was unexpectedly halted in the second week in October 2015. The responsible clinician’s barrister produced evidence that a patient, Henry, had died in the same bath a few years earlier. Photographs of the bathroom taken after Henry’s death were shared with us. Some of the same staff were on duty the day Henry died. The lack of disclosing Henry’s death for over two years is extraordinary. A second psychiatrist, present the day Connor died, looked at Henry and told the coroner by phone he died of natural causes. There was no postmortem and no inquest.  

When Connor’s inquest ended the coroner asked for Henry’s death to be investigated and the police took witness accounts from those present. The student nurse who was with Henry said he was told to leave the bathroom by professional X before the ambulance arrived. Professional X said he arrived at the unit after the ambulance. The coroner said it was long ago and there were bound to be contradictions. He dismissed Henry’s death again. 

And this is apparently fine. 

SIX. A death review commissioned by NHS England on our request was conducted by an international consultancy firm Mazars led by Marie Ann Bruce. It found only 2 out of 327 unexpected deaths of people with learning disabilities in the NHS Trust between 2011-2015 were investigated. Providing unassailable evidence you can punt human rights, regulatory procedures and processes off the nearest bridge when people with learning disabilities are involved. 

SEVEN. We don’t know how many people have died in assessment and treatment units. A Dispatches film by Alison Millar ‘Under Lock and Key’ shown in 2017 included the story of Bill who died in 2011. His parents then in their 70s were given what they called ‘blood money’ after an inquest found he died as an outcome of neglect.  

An early morning round table meeting was organised at Channel 4 the morning after the documentary was aired. An expectation that there would be an outcry Winterbourne View styley. No one really cared. We were coasting downwards by then, slowly and carefully unmaking scandals. I sat next to Bill’s parents who were pretty quiet. I wonder what they were thinking of this early morning shindig in central London that turned to nothing. Other than further evidence of bridge punting. 

EIGHT. There is no doubt that these places deprive people of their freedoms and rights. This deprivation manifests in myriad ways from being restrained, over medicated or secluded to being denied the basic opportunities to walk in nature, experience the wind on your face or have a drink with a mate.  Abuse, disrespect and devaluing profoundly erode wellbeing. We know this. Wiseman and Watson (2021) have written about the complex forms of violence experienced by people with learning disabilities and how these are critical to understanding the significant inequalities in health and wellbeing experienced by this group. And yet the numbers of those incarcerated in these places remain the same. 

NINE. The unmaking of this scandal, the greedy and self-interested actors that have jostled to drink at the fountain of self-serving opportunities and nosh on the plates of croissant crumbs, to line their pockets, seize media opportunities is grotesque. The stuffing of laminated photos of dead loved ones into the hands of bereaved and battered families… There has been no auditing of the money spent, contracts doshed out, time wasted, or individuals rewarded for no success.

We know these places are trauma generating and yet a paper published just this year found that just under 50% of 44 admissions and discharges from two ATUS from February 2019 to March 2022 were delayed. The most prevalent reasons for discharge delays were identification of a new placement, recruitment of care staff and building work (Gibson et al 2023). Two young men close to me have been in and out of ATUs over the past decade. One is currently back in an ATU while the other has been waiting years for the local authority to sort out a home for him. Both families have been the driving force at extraordinary emotional, financial and physical cost to try to get their boys a life worth living. 

This is apparently fine. 

TEN. I was struck by Simon Jarrett mentioning at a conference just yesterday that the exclusion of people with learning disabilities during the industrial revolution when enormous institutions were built was arbitrary, as many people could have worked in factories. There is a direct and remarkably enduring line from then to now where we have people formally incarcerated in ATUs, or in versions of ATUs dressed up as supported living or residential homes where people don’t even know their neighbours and their neighbours don’t know them.

All our lives are impoverished by the exclusion of a proportion of the population, and the way in which we, as a society, are failing people is something we should all take responsibility for. 

None of what we are talking about this evening is fine. None of it. Stop pretending it apparently is. 

Thank you.