Our chance to improve inspections and make services open

The Restraint Reduction Network Closed Cultures Steering Group is helping the Care Quality Commission (CQC) to improve how it inspects assessment and treatment units and inpatient, residential and other services, based on lived experience of them.

The CQC has asked the Restraint Reduction Network to make a specific contribution to improving its inspection process. It wants to find out which places that deliver care are not doing their jobs properly and respecting people’s human rights.

The commission wants to find out about “closed cultures” and put a stop to them. A closed culture is one that is characterised by secrecy and hostility. The CQC says it is a “poor culture in health and social care that increases the risk of harm through abuse and human rights breaches”.

The only way the CQC can improve its process is by speaking to the people it serves. This is our chance to improve how CQC inspections are carried out. We need to hear from you and it is very important that your voice is heard.

Getting involved is easy. You can add your voice by filling out the survey at https://www.surveymonkey.co.uk/r/ Closed-cultures.
Anyone can fill out the survey as long as they have experienced a closed culture. You might have experienced this personally or you might be a parent of someone who has experienced a closed culture.

You may be an advocate or member of staff who has worked in a closed culture. Your voice matters.

Alexis Quinn and Jo Clare
Co-chairs, Restraint Reduction Network
Closed Cultures Steering Group

Terry Smith – a sad loss

Terry Smith, an actor with the Impact Theatre Company who played a role in the long-stay hospital scenes in Netflix series The Crown, died recently.

Terry had the best time filming the Crown and made a great impression on both cast members and crew. It was one of his ambitions to act on TV and we are so grateful that he got to achieve it. Another ambition of Terry’s was to go to Buckingham Palace and meet the Queen. When Impact won the Queen’s Award in 2018, he attended a garden party at the palace (pictured) and, although he didn’t meet the Queen herself, he was absolutely thrilled to be in her house and to see both Charles and Camilla. Terry was one of the first members of
Impact Theatre. He joined in 1999, the year the company started.

I had the privilege of knowing Terry throughout his school and college days and later as a member of Impact Theatre. He grew from a wonderful, cheeky and fun-loving boy into a wonderful, cheeky and fun-loving man – an exceptional artist, dancer, all-round performer and human being. Impact will not be the same without him.

Dance on Terry.
We miss you.

Kim Mughan
Artistic director,
Impact Theatre
Company, London

Vaccine victory…

We are so pleased that everyone with a learning disability who is on a GP register will now be offered the Covid-19 vaccine.

Everyone has worked so hard to make this change happen.

Learning Disability England
@LearningDisEng, via Twitter

… was won by speaking up

It’s often frustrating but, when we have the courage and energy to speak up, sometimes we achieve great things. Well done to all involved!

David Towell
Via Facebook

Easy-read lockdown guides

Mencap have created some easy-read guides about the lockdown in England, shielding and the vaccine. You can download easy-read Covid information at https://tinyurl.com/y9s2x3hp.
Community Living Facebook admins

Children lose out in lockdown

Disabled children deserve better. Our The Longest Lockdown report exposes a huge gap in support, as most disabled children are still missing out on health and therapy appointments.

See: http://bit.ly/DCPLeftinL.

Disabled Children’s Partnership
@DCPcampaign, via Twitter

Farewell, Rose, Community Living founder…

I will miss this lady who in our conversations showed humour, spirit, grace, intelligence and fierce care for those with vulnerabilities of all ages who she fought for even in her own poor health. A light has gone out in the world.

Lou Booth
Via Facebook

… whose wisdom helped families …

’m so shocked and saddened – she was a great help to our family with her wise advice and support. We will miss her greatly.

Eve Smith
Via Facebook

… and who was a lifelong inspiration

Rose was truly inspirational. She was committed to helping people with learning disabilities right up to the very end of her life.

Gill Levy
Via Facebook

A storyline in ITV soap opera Emmerdale has caused outrage in the Down syndrome community and raised some disturbing ethical issues. Máire Lea-Wilson explains why

I was 34 weeks pregnant when I learned that it was likely that my second child would have Down syndrome. had spent an hour lying on an uncomfortable bed, being scanned by two strangers who made it clear that the baby was not developing as expected and they were about to give us “bad news”. We decided against invasive diagnostic testing and instead to have noninvasive prenatal testing to give us a better idea of what lay ahead.

We were given no information about the lived experience of Down syndrome, just a long list of possible medical problems. We were told our “options” repeatedly, in cold medical terms – continue the pregnancy or abort. We were told that abortion is what most couples choose to do. Two weeks later, Aidan was born. He was such a beautiful little baby, with big blue almond-shaped eyes, a tiny button nose and a tuft of dark hair. He was perfect but we were still sad about that extra chromosome, which we were told would make our lives so much more challenging.

As we got to know Aidan and saw more of his wonderful personality, we realised he was not actually very different from any other baby. Aidan and his older brother Tom have become our best teachers. To them, Aidan is just Aidan, with no labels. Aidan is not different in any remarkable way – he is just different in the same way that every person is a unique individual. They have not learned to discriminate.

The fear and uncertainty I felt in those early days lies in such stark contrast from our lived reality. I have often wondered how I was so certain of the difficult and challenging future I imagined, when I had never actually known anyone with Down syndrome. The reality is that we lead a perfectly normal life, full of the usual chaos that comes with having two young children. Where had this unconscious bias come from? The source of the unconscious bias, which is pervasive in society, became abundantly clear during the recent storyline in Emmerdale, where Laurel and Jai choose to terminate their pregnancy following a diagnosis of Down syndrome.

The producers claim that the scripting had been done in a fair and balanced way, drawing on research done with medical professionals, the charity Antenatal Results and Choices and those with lived experience. What they left out was that they had failed to perform research, in any meaningful way, with those with lived experience of Down syndrome. What followed was both extraordinary and devastating to members of the Down syndrome community, as an openly public debate commenced on the very validity of the existence of people with Down syndrome. It became clear that, in the court of public opinion, people with Down syndrome are viewed as burdensome and to be coped with.

People with Down syndrome who spoke out were told they did not understand the storyline. Parents of people with Down syndrome who spoke out were, at best, framed as pro-lifers and, at worst, described as selfish for knowingly bringing such a life into the world. We were told to watch the episodes before we judged. The scripting of the Emmerdale storyline was accurate in some ways, because it did depict some of the turbulent and intense emotions that a couple may feel when a couple receive a prenatal diagnosis. I know this because my husband and I went through the very same thing.

However, that is where the accuracies ended. The storyline drew out many inaccurate old tropes and stereotypes about the syndrome, without any context, that will serve only to perpetuate fear and stigma around it. While the producers of Emmerdale may have had honourable intentions in covering an “emotive topic”, their failure to engage meaningfully with the Down syndrome community meant they skirted over a complex and nuanced debate in a deeply problematic, irresponsible and dangerous way. Their storyline was heavily biased by presenting the reality for expectant parents while failing to represent the reality of people with Down syndrome who live rich, happy, and fulfilled lives.

This begs the question: how have we found ourselves in a position where an entire community can stand up and say this is wrong, this is hurtful and this is discrimination and find themselves at odds with broader society who view the Emmerdale storyline as completely acceptable and perhaps even “brave”? Maybe the answer lies right at the start of life, in our maternity services. When you are pregnant in the UK, you get offered two routine scans during your pregnancy. These are an exciting opportunity to take a sneak peek at the
tiny human growing inside you, a moment that can bring you to tears. During the first scan, at 12 weeks, you will be asked: “Are we doing the combined screening today?”

Around 80% of women in the UK choose to have screening. Screening gives you your chance of having a child with one of three trisomies – Down syndrome, Edward’s syndrome and Patau’s syndrome. If a woman receives a high chance result, she is offered amniocentesis or chorionic villus sampling (CVS), which are diagnostic tests that tell you definitively. Then you are given a choice: do you want to continue the pregnancy or terminate? Our best estimates show us that 90% of pregnancies with a prenatal diagnosis of Down syndrome end in termination. If this diagnosis is made, you can terminate that pregnancy right up to birth whereas the time limit for a typical child is 24 weeks.

These statistics are going only in one direction. With the advent of non-invasive prenatal testing, the number of foetuses detected with Down syndrome will increase and so will the termination rate. Figures released by 26 hospital trusts in England under freedom of information laws show that the number of babies being born with Down syndrome has fallen by 30% in NHS hospitals that have introduced prenatal screening. In 2017, Iceland hit the headlines when it was claimed that through a “successful” screening programme, it had managed to “eradicate” Down syndrome. Eradicate. Think about that word. We aren’t talking about curing a disease here. We are talking about the systematic elimination of a type of a person.

From the moment of conception, women are being subtly – and sometimes overtly – conditioned to view Down syndrome as something to fear and to be avoided. It is demonstrated in the language used – “risk”, “abnormality” and “problems”. It is demonstrated in our laws, which differentiate the time limit for abortion based on genetic difference. It is demonstrated through our media, where a storyline that normalises termination of pregnancy following a Down syndrome diagnosis is perceived as completely
acceptable – regardless of the hurt and offence it has caused a minority community with protected characteristics.

Women are not being given the correct information to make an informed decision. There are websites and support groups out there who can give you the balanced view. But when you are experiencing anguish, resentment, and a sense of loss for the baby you thought you were having, it is so very hard to find this all out for yourself.

Screening: who benefits?

This raises the question; who is really benefiting in this scenario? It certainly is not people with Down syndrome. As fewer people with Down syndrome are born, it will surely decrease their opportunities, in terms of both social acceptance and funding and research into improving their medical, educational, and social prospects.

Does it benefit expectant parents? I shudder to think what could have been had I made a different choice. Instead of having my beautiful, funny and loving boy, what would I have been left with? Does it benefit society at large? As we make further progress in the science of genomics, we will be able to “predict” the future of more and more individuals before they are even born. Screening for other genetic conditions is no longer within the realm of science fiction. The science is outpacing the ethics, and we desperately need a public debate on this, for the benefit of everyone.

We proclaim that as a society we believe that everyone deserves a fair and equal chance at life, regardless of their background – but is this true? As a society, are we comfortable with prenatally deciding what type of a life is a life not worth living?

Educating Emmerdale, the Down syndrome community response, is on Facebook at https://tinyurl.com/y8h7f29q

Máire Lea-Wilson is mother to four year old Tom and 20 month old Aidan, who has Down syndrome

The Crown: the Hereditary Principle
Netflix

The Pursuits of Darleen Fyles
BBC Radio 4/BBC Sounds

As long winter days stretched on, we turned to TV, radio and film to provide relief and distraction from the monotony of lockdown life. Thankfully, two programmes featuring actors with learning disabilities reminded us of the potential and talent that is increasingly being recognised and is waiting in the wings.

The first is an episode of Netflix series The Crown, and the other is the 10th series of award-winning Radio 4 drama The Pursuits of Darleen Fyles. First, The Crown: the fourth season of the fictionalised drama that reimagines some of the key events from the Queen’s reign. The series has garnered accolades for performances and writing. Episode 7, The Hereditary Principle, includes actors with learning disabilities telling a little-known story about the royal family and their history.

The programme sees Princess Margaret attending a therapy session where she admits to depression, and the therapist discusses the Windsor family’s mental health history. She informs Margaret that the princess has two cousins on her mother’s side who were institutionalised, and this sets in motion Margaret’s determination to find out more about the cousins who she had not realised existed.

Katherine and Nerissa Bowes-Lyon were Margaret’s first cousins on her mother’s side and the two sisters, both with learning disabilities, were sent in secret to the Royal Earlswood Institution for Mental Defectives in 1941. Recorded in Burke’s Peerage as having died, the sisters spent all their lives ignored and rejected in the institution.

Although they had been born into the wealth of royalty, Nerissa and Katherine, like many people with learning disabilities during this era, were abandoned. The writer and creator of the series, Peter Morgan, portrays the reason for the secrecy and covering up of their existence as the Queen Mother’s desire to protect the monarchy from her own personal shame.

In the drama, the Queen Mother argues that once she became queen, her family had a bloodline to the monarchy, and the integrity of future heirs to the throne would be jeopardised if people knew about the mental disorder in her family. The shame and stigma attached to this meant that her nieces were never discussed or acknowledged within the royal family.

Key to the success of this episode were the actors with learning disabilities, who gave poignant and moving performances that enhanced the storyline and highlighted the sense of isolation and abandonment that these women and their fellow residents endured. The sisters were played beautifully by Pauline Hendrikson and Trudy Emery, who took the lead roles as Nerissa and Katherine Bowes-Lyon. In a supporting role, Tina Byrne, who had lived at Royal Earlswood, played one of their friends.

Other residents were played by actors from the Impact Theatre Company, based in Ealing. The company offers performing and creative arts activities to adults with learning disabilities, and several of their performers were in this episode – a wonderful opportunity for all of those who were involved.

The episode reaffirmed the importance of continued visibility of people with learning disabilities on screen, which will, hopefully, continue when film and TV production returns.

Funny, warming, everyday life

Another highlight, this time on radio, was the return of The Pursuits of Darleen Fyles on Radio 4. Written by Esther Wilson, this 15-minute drama started life on Woman’s Hour in 2009, and was so successful it was given its own billing.

The series has followed the tribulations of a couple with learning disabilities who cope with falling in love, paying the bills and all the other normalities of everyday life that we take for granted. This current series, the 10th, follows the couple as their daughter Frankie starts school. The first episode reflects the current climate as Darleen experiences nervousness over leaving the home and using a face mask without her glasses steaming up.

The performances of the two lead characters, played by Donna Lavin and Edmund Davies, who themselves have physical and learning disabilities, are the main reasons why this drama has been so successful.

The programme is funny, heart-warming and life affirming – just what we need in these times.

The medical profession’s endemic ethical problems in relation to learning disability have continued to be starkly demonstrated as the coronavirus pandemic continues. As I argued in my last article, these issues are not new – they have been around the profession for more than two centuries and across the NHS since its inception in 1948.

The pandemic, however, has shone a light on these problems and brought them more to public attention than before. As feared, the use of do not resuscitate (DNR) notices against people with learning disabilities has persisted in hospitals throughout the pandemic, as will be confirmed in a forthcoming report from the Care Quality Commission. These orders, formally known as do not attempt cardiopulmonary resuscitation notices, are intended for people who are too frail to benefit from this form of resuscitation. However, they are often imposed on people with learning disabilities simply on the grounds that they have a learning disability, leading to unnecessary and avoidable deaths.

The issue was raised well before coronavirus, and the Department of Health and Social Care has explicitly condemned the blanket imposition of DNR notices against groups of people. Nevertheless, NHS clinicians have continued with the practice throughout the pandemic. Unless a lasting power of attorney for health or an advance directive (also called an advance decision) has been made stating otherwise, any decision to withhold life-sustaining treatment is effectively made on the spot by the lead clinician in charge of a person’s care, once they are deemed to lack mental capacity. The problem is therefore not only an institutional one within the NHS in allowing such practice to occur, but also an individual problem emanating from the clinicians who choose to impose such orders.

A further ethical problem has arisen in the battle to prioritise all people with learning disabilities in the UK Covid vaccination programme. At the time of writing, this programme has been enormously successful and an outstanding example of first-rate public health practice applied to an entire population. It has sought to prioritise those thought to be the most at risk because of age and underlying health conditions. However, people with learning disabilities, despite dying at six times the rate of the rest of the population from Covid (and at 30 times the rate in younger age groups), were not included en masse in the initial prioritisation list. After lobbying from the Down’s Syndrome Association, people with Down syndrome were included from the outset.

After further campaigning, people categorised as having severe or profound disabilities were added to the list. The medical establishment finally caved in on 25 February – three months after the roll-out began – and added the rest of the learning-disabled population to the priority list (around 150,000 people). This happened only after intensive, high-profile lobbying from well-known public figures who have learning-disabled relatives, such as BBC radio DJ Jo Whiley, and campaigning organisations.

It is important to note that, while government ministers are ultimately responsible for the decisions made on their watch, the initial decision to exclude many people with learning disabilities from the top prioritisation categories was made by senior doctors on the Joint Committee on Vaccination and Immunisation (JCVI).

It was not the case in England that Matt Hancock, the health minister, was given a prioritisation list and asked for people with learning disabilities to be removed. The JCVI doctors did not include them on the list in the first place despite the evidence of their own statistics. There is a disturbing parallel between the DNR notices and the initial non-prioritisation in the vaccine programme – in both cases, potential life-saving interventions were withheld from people with learning disabilities.

The irony is that, in the case of DNR notices, treatment is withheld because the learning disability is seen as a vulnerability that makes the person unfit for treatment while, in the case of vaccination, underlying vulnerability is denied.

The shadow of the past

In my previous article, I described how the past casts a long shadow over medical practice in relation to people with learning disabilities today. It was from the time that medical practitioners began to take an interest in learning disability, or idiocy as it was then called in the 19th century, that the exclusion of this previously assimilated group of people began to take place. Medical men – and they were all men – led the asylum system that condemned people to a life behind institutional walls, separated from family and neighbourhoods. There then followed a long line of medically inspired moves to eradicate people with learning disabilities from society altogether. These included the eugenics movement, the Mental Deficiency Act of 1913, campaigns for euthanasia (successful in Nazi Germany), sterilisation and a litany of neglect, abuse and dehumanisation in medically run institutions, which persisted until the end of the 20th century.

Our current medical abuses and exclusions – detention and mistreatment in assessment and treatment units, DNR notices, preventable hospital deaths – are all rooted in this dubious medical heritage. Why does this happen? First, medical practitioners are singularly ill suited to be the arbiters and controllers of the lives of people with learning disabilities. Learning disability is not an illness or a disease, and it cannot be cured or treated. People with learning disabilities are who they are, and no amount of medical intervention will make them into someone different.

This is why, before the 19th century, medical practitioners steered well clear of idiocy. They were paid for curing people and they were not interested in spending time on an incurable, unchanging condition. When medical men were looking for new areas of control and authority in the 19th century, they had to invent a story that “idiots” were a danger to either themselves or others, and that somehow only the medical profession could recognise, control and “treat” these dangers within high-walled asylums. Their choice of language to describe their new patients was revealing – they called them “mental defectives”. If something is defective it is broken. It lacks something. “Defectives” could not be mended; instead, they had to be eased first out of society and then out of existence. Confinement, sterilisation and- eventual institutional death would start to rid society of this group.

The medical profession’s role never was to make people with learning disabilities “better”. It was to remove them from society somehow and to prevent their future existence. The aim was, in short, their extinction. This medical outlook tied in with wider currents of thought. Utilitarian thought dominated 19th century public policy-making and ethics.

It was very much a practical philosophy, applied to everyday life and, by its nature, always loaded heavily against people with learning disabilities, as we shall see.

A seductive, bad idea

We know utilitarianism best by the maxim “the greatest happiness of the greatest number”. Actions are judged by the amount of satisfaction, happiness, improvement or benefits they bring to the greatest number of people possible. Faced with two difficult choices, we choose the one that brings the most benefit or causes the least harm. Like many bad ideas, it is at first sight very seductive and seems to make a lot of sense.

Modern utilitarian thinkers have used what has become known as the “trolley problem” to think though ethical problems. Here, you are standing by a railway line and see a train hurtling towards five people who are tied to the track. You are in a position to change the
points, and can divert the train off on to a spur. However, there is one person tied to the track on the spur, who will die if you switch the points. What do you do? In its basic form for a utilitarian, this dilemma is a no-brainer. You switch the points, even though you are effectively making a decision to kill somebody, because in doing so you are saving five lives while sacrificing one. The numbers tell you this is the right action to take, and you must put aside any squeamishness or moral hesitancy that might cloud your rational judgment.

The trolley problem can be put through all sorts of permutations to tease out the solutions to complex ethical dilemmas. What if the five people were all elderly, with terminal health conditions, while the one person tied to the other track was young and healthy with their whole life ahead of them? Would you switch the trolley then? Or would you not intervene because the one other life was of more utility than or at least equal to the other five put together?

You do not have to jump very far from here to see how utilitarianism is used in current medical ethical thinking. Who gets the ventilator in a Covid ward – the young person more likely to respond or the old person less likely to benefit? Then, what if it is a young person with no health problems against someone of the same age with an underlying health problem? To go back to the trolley problem, what if it is a person without a learning disability tied to the track ahead of you, and a person with a learning disability tied to the spur – do you switch the points? What might the average doctor respond to that?

Utilitarian thinking continues to exert a great influence on medical ethics. The British Medical Association stated in its guidance on ethical issues published shortly after the pandemic began that the aim of the medical profession throughout the crisis would be “delivering the greatest medical benefit to the greatest number of people”. This is a deeply utilitarian statement.

Of course, in medicine there are many terrible dilemmas, and no one would deny that there has to be some sort of framework to assist medical practitioners in such difficult decisions. Most people would probably agree that if you must make a choice between saving an elderly person with a terminal illness and a younger person who is not terminally ill, then you would choose to save the younger person.

Although utilitarianism can appear cold in its rationality, it can be argued that coldness and logic in decision making can be better than raw emotion – do we want a situation where we save people we like and sacrifice people we don’t? disabilities – or “defectives” – as less than full humans who are incapable of true happiness.

In the utilitarian world, where only happiness (or satisfaction or improvement) of as many people as possible matters, this effectively makes you a non-person. John Stuart Mill, the leading utilitarian of the 19th century, famously argued that “it is better to be Socrates dissatisfied than a fool satisfied”. In other words, “fools” did not experience genuine satisfaction or happiness like intelligent people – just mindless pleasure in the stimulation of their senses.

Mill was an advocate of the asylum for the “idiots” of his time. People who could not be properly be made happy or improved through education did not really belong in society and were a drag on the happiness of the majority.

Persistent prejudice

Such thinking persists today, in its most extreme form in the modern utilitarian philosopher Peter Singer. Singer is a leading advocate of animal rights who argues that we should not accord greater privileges to the human species than we accord to non-human species. He calls the practice of human dominance over other species – killing animals for food and clothing, keeping them in farms and zoos – “speciesism”.

To support this idea, he argues that what he calls “retarded infants” have lower abilities and are less capable of happiness than many non-human animals. He calls such infants “human vegetables” and argues that:

“Adult chimpanzees, dogs, pigs, and members of many other species far surpass the brain damaged infant in their ability to relate to others, act independently, be self-aware, and any other capacity that could reasonably be said to give value to life. With the most intensive care possible, some severely retarded infants can never achieve the intelligence level of a dog.” (Animal Liberation, 1975: 18)

Singer calls for the active euthanasia of such infants, and has written extensively throughout his academic career in support of euthanasia against those he calls the “retarded”. Although controversial in the disability world, he remains highly regarded in the world of philosophy and is still considered a guru of the animal liberation movement.

More disturbingly, in a recent article in Prospect magazine, he boasted: “I taught intensive bio-ethics courses for healthcare professionals, including intensive care unit directors and many senior people.” It is difficult to contemplate what might have been taught about people with learning disabilities in such courses. Singer is just one more extremist in a line of intellectuals and distinguished medical practitioners who have waged war over the years against people with learning disabilities (see “The persistent stupidity of intellectuals”, pages 12-13). Nevertheless, he is the very visible crest of a profound wave of thought that dehumanises people with learning disabilities, values them less than other types of human and sees their lives as a tragedy and a burden, best relieved by death.

It is this thinking that sadly, in more subtle forms, stalks the wards of our hospitals and the minds of many who work in medicine. This is not just idle thinking – it results in needless DNR notices, Down syndrome foetuses being aborted at term, people missing out on vaccinations and people being fed through hatches in solitary confinement in assessment and treatment units. We know that, despite all this, there are many good people who work in the healthcare professions – doctors, nurses, psychiatrists and many more – who do not sign up to these assumptions, and who place value on the lives of people with learning disabilities.

It is time for them to come together, to join forces inside and outside their professions, to challenge this dehumanisation and oust it from medicine once and for all. The greatest happiness must belong to us all.

Assessment and treatment units have long been the antithesis of a place of safety, with a high incidence of injury, restraint, abuse and neglect of basic healthcare. Their very model of care  is actively harmful and creates the conditions for human rights abuses, says Jo Clare

The findings of an investigation into assessment and treatment units (ATUs) were shocking, damning – and completely unsurprising.

The research – Less Than the Sum of its Parts – was carried out by support organisation Three Cs for health commissioning groups in London. The findings mirrored exactly the evidence – which is already out there and has been out there for more than 20 years – of perilous and fatal health inequalities. These were highlighted in Mencap’s Treat Me Right in 2004 and Death by Indifference three years later, the review by Mazars into deaths in hospital of people with mental health problems and learning disabilities and the Learning Disabilities Mortality Review (LeDer) reports.

Harrowing individual stories have been relived in Sara Ryan’s Justice for Laughing Boy published in 2015, the Rightfullives exhibition held in 2018 and Alexis Quinn’s Unbroken, published last year. Disturbing stories have been shared daily, with deep anguish and fury, on social media for years. Our study, like the stories out there, was also compelling about how different the lives of adults and children with learning disabilities and/or autism can be if only we do the right things at the right time in the right, personalised way for each individual child or adult and their families.

Controlled, risky culture

The now infamous “closed culture” – a characteristic of abusive settings that is now being targeted by Care Quality Commission inspectors after it learned its lessons from Whorlton Hall – made itself felt from the start. None of the 59 ATUs or inpatient services approached responded to our request to enable patients to take part in the study. This was a stark reminder that providers control patient access and patient evidence.

There was evidence that the system is retaliatory and bullying made it imperative to conceal identities. Speaking out against mistreatment put people at risk of being sectioned again; if families complained about the treatment of a loved one, the psychiatrist might threaten to send the person to a unit hundreds of miles away. And, if you write a research report that names the worst and most litigious offenders, you risk that it will not see the light of day.

Whole system fails

In a nutshell, we concluded that the clinical and moral incoherence of the ATU model actively creates the conditions for human rights abuses.

Paving the way to the ATU door is a whole-system deficit in timely and appropriate support for children and adults with learning disabilities and/or autism – especially at points of life transition and crisis. Underpinning this failure is an outmoded Mental Health Act, an incompetent medical model of care and a hierarchy of expertise in which those with learning disabilities and/or autism – and their families – are firmly at the bottom.

Some former inpatients were already enjoying good, ordinary lives with personalised support and community-based interventions and treatment, giving the lie to the pernicious notion that there was “nowhere else” for them to go. The most populous theme arising from the interviews, and thence the biggest chapter, was “system culture and human rights”. There was significant evidence of breach or risk of breach of six articles under the Human Rights Act.

This included the right to life (article 1) with near misses on overdose, infection and dangerous neglect of known underlying health conditions, including allergy. The precept of no torture, inhumane or degrading treatment (article 2) was challenged with injurious use of physical restraint, resulting in injuries including a broken arm and broken clavicle, solitary confinement in small cells for long periods, disrespect for people’s clothes and possessions, no support for personal care, no privacy when using the toilet, caged transport for a child and concerns about starvation.

A harmful model of care is an inarguable paradox, makes no clinical sense and is unethical. Many ATUs are the antithesis of a place of safety, with an untenably high incidence of distress, injury caused by a combination of detention, seclusion, physical and chemical restraint, abuse and neglect of basic healthcare, the last leading to deaths from manageable conditions such as epilepsy and constipation. Short periods of assessment turn into an average of 5.4 years detention, according to Mencap; for our research cohort, this was an average of two years and nine months.

It is hard to imagine how such a calamitous intervention passes the NHS threshold for funding evidence-based treatment.

Treatment of no therapeutic value

While ATUs are intended to assess and treat people, their primary methods – detention, segregation, seclusion and restraint – have no therapeutic value whatsoever. As well as being liable to cause injury and distress, they deprive patients of the psychosocial aspects of existence (sleeping well, eating well, meaningful activity, exercising and spending time with friends and family) that are known to keep children and adults healthy and mentally well.

Since psychosocial deprivation is known to be among the primary triggers for so-called “challenging behaviour”, it is not surprising that ATUs can cause or intensify the mental health conditions and behaviour they are intended to assess and treat. If communication and understanding patient needs are at the heart of the inpatient experience, then understanding an individual’s experience of autism and their highly persona style of communication is critical.

If this is largely absent, as it was in our study, it explains why patients receive inferior physical healthcare and are at risk of dying from treatable conditions. It also calls into question how mental illness can ever be accurately diagnosed or excluded in this group of patients. Detention with open-ended assessment and no effective treatment was experienced as punishment akin to imprisonment, with seclusion and segregation the equivalent of solitary confinement. This was compounded in some institutions with small prison-like cells, dark airless wards and a complete absence of personalisation and home comforts.

Placing people hundreds of miles away from their friends and families, regularly cancelling family visits and section 17 leave all compromise article 8 – the right to a private and family life.

If people with learning disabilities and/or autism are subjected to detention in such places when they have no treatable mental health conditions, when assessment is obscured by behaviours of concern, when treatment has no therapeutic value, this is surely a state-sponsored subversion of not only article 5 (the right to liberty) but also article 6 (the right to a fair hearing) and article 7 (no punishment without law).

Financial incentives

The second big paradox is economic. The study found cost shunting and funding battles between health and social care were frequently implicated in delays that caused or exacerbated crises, defeated successful discharge and delayed resettlement.

Yet money and repeat funding appear to be no object when someone is in the system. If an ATU charges £13,500 per week, as was the case for one of our witnesses, it is set to bring in £3.8 million per person over the average 5.4 years’ detention. This is money that could so obviously be spent on an ordinary life and more effective treatment in the community, instantly ending the “nowhere else to go” argument.

On this basis, this is potentially a guaranteed £1.4 billion per annum industry for detaining 2,000 people still stranded in inpatient settings at the end of the failed Transforming Care programme. While my back-of-an-envelope financial assumptions may be challenged, the business model is clear: serial sectioning is effectively repeat business and there is a perverse, pecuniary incentive to detain people – and to keep detaining them.

Next time there is a scandal in the private or not-for-profit sector, instead of focusing just on the reprehensible actions of criminal staff, look towards the top of the food chain, at the business model and structure that holds this culture of abuse in place and at a government that appears happy to aid and abet it by its inaction. Better surveillance? Better training? Safer methods of restraint? Such continuous improvement fixes are a shoal of dazzling red herrings, distracting us from the wreck of this model, obscuring the sharks lurking in the murky, mendacious depths below.

Instead, let us shine a light on vested interests like dividends to shareholders, remuneration of executives and non-executives, fees of consultant psychiatrists, lawyers, lobbyists and the whole panoply of defensive and offensive tactics that some providers use to defend their share of this lucrative market.

If ATUs trash the rights and trade in the lives and liberty of children and adults with learning disabilities and/or autism, they must surely be stopped, not improved.

Less than the Sum of its Parts is available at https://tinyurl.com/y42t875y;
the easy read version is at https://tinyurl.com/yawbjcyv

The last year has been quite a year for eugenics.

First there was the news that Andrew Sabinsky, one of Dominic Cummings’ new intake of “weirdos and misfits” to act as government advisers, had claimed that eugenics was about “selecting for good things” and that intelligence is largely inherited”. Then Richard Dawkins, evolutionary biologist and author, popped up on Twitter claiming that since eugenics “works for cows, horses, pigs, dogs and roses”, there was no reason to think it would not “work for humans”.

He conceded there might be grounds for rejecting the practice before claiming, absurdly, that “facts ignore ideology”. It was the distinguished English scientist Francis Galton who, fascinated by his half cousin Charles Darwin’s On the Origin of Species, asked: “Could not the race of men be similarly improved? Could not the undesirables be got rid of and the desirables multiplied?”

In 1883, he coined the term “eugenics” and set out to improve the human race by “better breeding”. His supporters soon linked “undesirables” to a range of social problems and called for government action to improve “biological quality”. In 1907, Galton co-founded the Eugenics Society and, in 1908, Sir James Crichton Brown, in evidence to the Royal Commission on the Care and Control of the Feebleminded, recommended the compulsory sterilisation of the “feeble-minded”, describing them as “social rubbish” who should be “swept up and garnered and utilised as far as possible”.

Darwin’s son Leonard presided over the first eugenics conference in 1912 and lobbied the government to establish squads of scientists, with the power of arrest, who would travel around the country identifying the “unfit” and segregate those so classified in special colonies or have them sterilised. Political supporters included socialist firebrand Will Crooks, who described “mentally defective children” as “absolutely useless”, comparing them to “human vermin” who do “absolutely nothing, except polluting and corrupting everything they touch”.

Meanwhile, Julian Huxley asked plaintively: “What are we going to do? Every defective is an extra body for the nation to feed and clothe but produces little or nothing in return.” A bill for the compulsory sterilisation of certain categories of “mental patient” was proposed, with Labour MP Archibald Church wanting to stop the reproduction of those “who are in every way a burden to their parents, a misery to themselves and in my opinion a menace to the social life of the community”.

Soon, a government committee recommended legislation to ensure the “voluntary” sterilisation of “mentally defective women” – a move welcomed by the Manchester Guardian but, thankfully, never passed into law. Confronted by a “long line of imbeciles”, novelist Virginia Woolf insisted that they should “certainly be killed”. Birth control champions Margaret Sanger and Marie Stopes were both confirmed eugenicists – championing not just contraception but, as Sanger put it, sterilisation for “that grade of population whose progeny is already tainted, or whose inheritance is such that objectionable traits may be transmitted to offspring”.

Some of British socialism’s most celebrated names agreed, including the founders of the Fabian Society, Sidney and Beatrice Webb, along with Harold Laski, later Labour Party chair, who predicted that the time was coming “when society will look upon the production of a weakling as a crime against itself”

These views were echoed by economist John Maynard Keynes and, in 1931, the left-wing New Statesman magazine asserted that “the legitimate claims of eugenics are not inherently incompatible with the outlook of the collectivist movement”.

Lethal suggestion

Philosopher Bertrand Russell proposed colour-coded “procreation tickets” to prevent the elite’s gene pool from being diluted by inferior stock, while George Bernard Shaw insisted that “the only fundamental and possible socialism is the socialisation of the selective breeding of man”, suggesting that defectives could be dealt with in a “lethal chamber”.

Using the same haunting phrase, author writer DH Lawrence declared: “If I had my way, I would build a lethal chamber as big as the Crystal Palace, with a military band playing softly, and a cinematograph working brightly; then I’d go out into the back streets and the main streets and bring them all in, the sick, the halt and the maimed: I would lead them gently, and they would smile me a weary thanks; and the brass band would softly bubble out the Hallelujah Chorus.” He could have been describing a suburban English Treblinka.

It took Nazi Germany and the murder of 250,000 people deemed to be living “lives unworthy of life” to put these fantasies into action. But the unhappy truth is that even after the Second World War, the eugenics agenda in Britain was still current.

Nazi ideas survive the war

On the day in 1943 when his famous report was being debated, William Beveridge, the creator of the welfare state, slipped out of the gallery of the House of Commons to reassure a meeting of the Eugenics Society of his continued support.

AF Tredgold concluded that: “Many of the defectives are utterly helpless, repulsive in appearance and revolting in their manners. Their existence is a perpetual source of sorrow and unhappiness to their parents. In my opinion, it would be an economical and humane procedure were their very existence to be painlessly terminated.

existence to be painlessly terminated.” The Nazis had been defeated but, for a moment, it seemed possible that one of their most repulsive policies might survive. Such views are thankfully rarer today, but a double standard is still in evidence in the way that abusive language is used, with racist and sexist terms being strictly taboo but their learning disabled equivalents – “idiot”, “cretin”, “imbecile” and “retarded” – are all too common, even in supposedly progressive circles.

Representations in drama and art are infrequent and often misguided, emphasising individual tragedy, not the broader social experience. And scholarship is hardly exempt, with moral philosopher Peter Singer dismissing our protection of the profoundly disabled on the grounds of “speciesism” – declaring that their intellectual capacity is less than that of many animals.

One of his followers Jeffrie G Murphy even wrote an article in 1984 entitled Do the Mentally Retarded Have a Right to be Eaten? He insisted this was a philosophical exploration, intended to “raise the issue of rights for the retarded in its hardest context”, adding sternly that “too much well-meaning sentimentality is allowed to pass for thought in the discussion of the retarded, and I want to shock my way through this”.

Dawkins, in response to an enquiry from a woman about what to do if she discovered she was pregnant with a foetus with Down syndrome, replied “abort it and try again. It would be immoral to bring it into the world if you have the choice”.

He denied that he was a “eugenicist” but it is hard to understand what he meant by the word “immoral” in such a context. |His comments that eugenics would work neglect the fact that eugenics has been tried and it failed abysmally: despite the Nazi programme of murder and sterilisation, Germany’s population of disabled people is entirely in line with other countries. It takes an intellectual to come up with such poisonous guff.

Protecting the rights and opportunities of the learning disabled is hard enough; what’s striking is the way that so many otherwise clever people fail to get it.

This article was published in Byline Times in 2020 and is reproduced with permission

Stephen Unwin is a theatre and opera director, founder of the English Touring Theatre and the Rose Theatre, Kingston, author of the play All our Children, which is about the Nazi genocide of disabled people, and father of Joey, a young man with severe learning disabilities