Last night I was up in London for an event organised by the Learning Disability Network London. When I was asked to speak I knew I’d struggle to turn down the invitation given the other speakers on the bill, Alexis Quinn, Sara Ryan and Amanda Topps, with chairing by Simon Jarrett.
But before I agreed to speak, I did what I always do and did a little digging into who they were. LDN London are a London wide charity providing support to children and adults with learning disabilities. They run 7 regulated services for learning disabled people, 6 are rated good, and 1 outstanding by CQC.
The event was the first in what I believe will become a series of Spotlight On events and discussions. This first one was titled, Spotlight on the abuse of people with learning disabilities in Assessment and Treatment Units – a scandal in plain sight.
Each speaker had 10-15 minutes to talk to include an introduction an address three questions, what has happened, what is still happening and how might we bring about change.
Simon opened with an introduction to the series of events, what an ATU is and then introduced each speaker in turn. First up was Alexis Quinn. Alexis shared insights from her experience of being detained in a series of ATUs, before escaping overseas. I’ve heard Alexis speak before and I’d listen to her again, and again, and again. Her insight, analysis and compassion affect me each time. If you’ve not read it I highly recommend her book Unbroken: Learning to Live Beyond An Autism Diagnosis (currently out of stock but you can add it to your wishlist).
After Alexis had brought a number of the audience to tears, it was over to Sara Ryan. Sara talked about her gorgeous boy Connor, whose life was prematurely snubbed out by the apathy of staff in a Southern Health NHS FT Assessment and Treatment Unit. It’s just over ten years since Connor drowned in a bath and Sara has written up her talk here. Please go read it if you’ve not seen it, and you can also read Sara’s book about Connor.
I always find it hard to listen to Sara talk about Connor’s death and the carelessness of the non-care he received, and the cover up that followed as his family and friends and outraged randoms off the internet (like myself), formed JusticeforLB to try and get answers and justice. Sara’s points weren’t new to me, but it felt like feeling them over again, I was whisked back to the horror of Connors’ inquest when we learnt about Henry (Sara’s blog explains it all). I struggled to keep it together.
Next up was me, and I was a mess. Simon was introducing me and I already knew I was going to end up crying (not a good look when addressing a room of 130 people, especially when the microphone required you to have it so close to your mouth it was like eating it). I tried to pull myself together and introduce myself.
I explained that in October 2015 I’d live tweeted Connor’s inquest and then an awful thing started happening, and other families and lawyers and other professionals started getting in touch about upcoming inquests and other court cases. At this point I’ve live tweeted and reported over 20 inquests of learning disabled and autistic people. I’ve also reported from the High Court, Magistrates Court, Court of Protection and Criminal Courts, most recently the trial of 9 former support workers from Whorlton Hall.
I’d intended to say that all my reporting work is crowdfunded, done to provide external scrutiny, and always starts from trying to form and communicate an understanding of who the person was and their connection and contribution with family, friends and community. Starting with the human, before getting into the intricacies of their lives and deaths. [I’m not sure whether I got that out due to the sniffles but I would have if I was more composed].
So, what’s happened?
- We’ve known for decades that people are dying premature and preventable deaths, and we know hospitals, especially ATUs, are unsafe for learning disabled people.
- We’ve kidded ourselves and congratulated ourselves that long stay hospitals are closed in this country, but they’re not, their spirit and culture lives on. There are still hundreds of people incarcerated in St Andrews Northampton, Joanna, Ben and Jon died at Cawston Park, we’ve had abuse at Winterbourne View and Whorlton Hall, which only reached an audience due to the tenacious journalism of the BBC Panorama team.
- There’s been a lot of activity, with very little progress. I mentioned a twitter thread on Transforming Care that I’d created/written/crafted (it felt like a labour of love) when preparing for this event. I wanted to just double check I wasn’t being overly cynical and dark hearted, so I tracked what has happened since Winterbourne View.
Over a decade of performative scrutiny and non-action. Over 35 reports and still over two thousand people stuck in ATUs, with revolving doors, a lack of community support and people living in perpetual fear of readmission (as Alexis had so eloquently outlined). I pointed out that people’s human rights are routinely ignored, with people subject to restraint, seclusion and segregation.
I quoted Norman Lamb from a debate to Parliament in July 2018 where he described “a culture of looking at things again and again, but not doing anything about the conclusions that are reached from this. And that is wholly unacceptable”.
What’s happening now?
- I am a total Norman Lamb fangirl, unashamedly, and in that debate he highlighted three perverse incentives, preventing change, which are as relevant today as then, slightly edited into my own words but in my opinion still current:
- Responsible clinicians of containing providers are the ones making decisions about whether people can leave, and they have a vested interest that people don’t. Detained patients are cash cows for providers, especially if they’re just locking people up in empty padded cells and providing no meaningful connection or engagement. In my opinion RCs hold too much power (and all too often when challenged in the coroner’s court or other courts then claim that all decisions are made at MDT meetings and nothing is down to them – I didn’t say this last night but should have done)
- Absolute failure to invest in community provision, regular day to day life and for when people are in crisis
- An extraordinary and wholly unacceptable exclusion of individual’s and their families from decisions about their care
- Second thing here I wanted to talk about was the Whorlton Hall Criminal Trial and what I observed through it, or was reported in the Safeguarding Adults Review:
- closed cultures – we know bad things happen behind closed doors and most ATUs have a culture of secrecy and few people get into them (and rarely beyond a family room)
- the monstering of people that goes on under the pretence of hospital care or treatment, the language used and the way in which people are routinely and regularly dehumanised, until they are seen as not fully human, and that’s reiterated again and again
- power, that is the power given to professionals and the power of the status quo and inertia
- the illusion of advocacy and the way in which advocates were accepting of staff’s narratives
- the commissioning of containment – why are we paying for people to be contained in this way?
- the role of restraint and MAYBO above all else. The support staff at Whorlton Hall received 3 days of MAYBO training, and learnt how to take people to the floor, before they’d set foot in the hospital or met a single person with a learning disability or autism. If you dehumanise people from the off, why are we surprised that abuse happens? Of course there’s a need for people to be safe, patients and staff, but people should not be taught restraint techniques in a vacuum, without also learning about communication, individuals and their preferences, meaningful care and support
- finally, the sidelining, ignoring and deliberate deception of people and their families, which was ripe there, and no doubt still is in much provision.
- Just in case any one was in any doubt about whether or not this is a current problem, I shared some statistics from the latest (March 2023) Learning Disability and Autism Statistics data. When introducing the session Simon said that after Winterbourne View, so at the birth of the Transforming Care industry, there were 2,600 people stuck in ATUs. The March dataset shows that there are 2,580 people who are inpatients in beds designated as for the treatment or care of people with a learning disability, or in beds designated for mental illness treatment or care, for people diagnosed with a learning disability and/or ASD.
This data isn’t perfect, and numbers are rounded up to the nearest 5 so I’m not sure if that figure is absolutely current, but we know the target of 0 people in hospital has been missed, along with every other target of Transforming Care. The same data set showed that of those 2,580 people who were inpatients, 215 had been detained for between 5 and 10 years, and 135 for more than 10 years. More than 10 years.
There were also 650 people who had been restrained within March (again data caveats), which works out at about 1 in 4 of all inpatients in this group. There were 5,535 incidents of restraint recorded (again, rounded data) which if you were to average it out (even though we know that won’t be the actual case) would work out as 8.5 restraints per person restrained.
I said that what is happening now is the same, if not worse, than what had happened in the past. There’s utter apathy, too much performance and a systemic hand wringing. I don’t believe that what happens in ATUs is a scandal in plain sight, I believe the scandal has been unmade, there is no scandal, there is no reaction, there is a total apathy. When Barbara Keeley held a debated in April this year, only 4 MPs attended and spoke. Four.
How might things change?
I am always wary of offering solutions for change, as I often think they sound like platitudes and cliches, but I tried to offer a few.
- People need to keep living, and loving, defiantly. It shouldn’t be necessary but the more the realities of peoples lives, the good, the bad and everything in between, are known and seen and shared, the harder it is for society to say it didn’t know, and for people not to care.
- Commissioners need to stop commissioning, and regulators need to stop regulating these spaces, they’re nothing more than warehouses of containment. There is no assessment or treatment. I’ve grave concern that the industry that exists in the ‘learning disability space’ creates this apathy. That’s care and support providers, large charities, training providers, experts and consultants – there are a whole lot of salaries that rely on the status quo staying as it is. I then mentioned Lankelly Chase, who announced this week that they were going to abolish themselves and redistribute their wealth over the next five years. I shared a quote from one of their trustees, Marai Larasi, who said that their aim was not to “hold the cult of benevolence in place, but to actually dismantle that”. I asked whether the same could be said of the large learning disability and autism charities? Especially those that simultaneously claim to be improving lives, while themselves providing care that is inadequate or requires improvement. I think we’re long overdue an honest conversation about the role that charities are playing in sustaining this apathy.
- Finally for me, I think people need to be in their local communities, from cradle to grave. They need to be known, to be loved, to be educated, to live and work and socialise and exist within their local communities, not shipped off to distant prisons, or when they are shipped off there is an actual outrage and it truly is seen as a scandal. We need better community support and better crisis supports, and we need support for families and unpaid carers.
I think all of those things are needed, to really elevate this to a position of scandal, if we think that will help. Thank you.