Wrong, dangerous – and deadly?

The latest annual LeDeR report covering 2018-2020 gives what Prof Chris Hatton of Manchester Met Uni describes as “comprehensive, and exceedingly grim” statistics on the deaths of people with learning disabilities. In his twitter thread, Chris describes the shockingly high proportions of people who died who were being given anti-depressants, anti-psychotics, and combinations of powerful drugs of those kinds. Anyone who has worked with people with learning disabilities in health or social care services, will recognise the routine way in which people who have at some point been described as ‘challenging’, ‘complex’ or having ‘behavioural difficulties’ end up on cocktails of powerful drugs, and then more drugs for the side-effects of those drugs (an average of over 6 drugs per person for those who died according to LeDeR). This often goes on for years or decades, with no obvious sense of what the drugs are currently doing for the person, or what would lead to doses being reduced.

Ethnicity, gender and type of disability label all have a bearing on how likely you are to be prescribed various kinds of psycho-active drugs. These statistics of course hide the individual people and lives they analyse, and the Bristol University team who produce the report make a point of starting each annual report with a few stories, like Angela’s:

Angela was funny and had a good sense of humour. She could say a few words and knew a little Makaton. Angela used to enjoy lots of activities including swimming, climbing, bowling and walking but she was less active as she got older. She liked to visit garden centres and listen to classical music.

As we know, “There was a significant increase in the number of deaths at the peak of the COVID-19 pandemic from March – May 2020.” This fact raises many unanswered questions about the extent to which people with learning disabilities were protected and well cared for during the pandemic, and their vital services given all of the safety equipment, support, testing and access to vaccinations which they should have been at an early enough stage. We know that some, perhaps many people with learning disabilities, were wrongly given ‘do not resuscitate’ notices by doctors who believed that they were justified by their disability. The LeDeR report found that 3/4 of those who died had a ‘DNACPR’ notice, with factors such as the person living in a service rather than at home making a big difference to the chances they had one. 6% (up from 4%) of notices for those who died were demonstrably wrong; these will not include incorrect notices put upon people who did not then die.

But it is the correlation between extremely high medication and deaths which Prof Hatton draws out which has been haunting me. As Chris puts it, “Everyone knows this level of medicating people is wrong and dangerous. And it continues.” As NHS England puts it, these drugs, if wrongly administered, can cause not just long term health conditions (such as those associated with weight gain caused by drugs) but other ‘serious’ health problems, yet “every day about 30,000 to 35,000 adults with a learning disability are taking psychotropic medicines, when they do not have the health conditions the medicines are for. Children and young people are also prescribed them.”

The number of things that ‘everyone knows’ are wrong, harmful or downright dangerous, which the NHS, social care systems, and learning disability services and their commissioners carry on doing anyway is a long one. I have argued before that as a public service sector, we have become adept at blaming people who use services for the things we knowingly do wrong: they are problematic, challenging, complex, and we are doing the best we can with limited resources. We are fluent in the language of risk and risk management, but wilfully blind to some of the most important risks (in my book I argue that when we say an organisation is risk averse, we usually mean it’s averse to some risks but stunningly complacent about the risks which matter most to people themselves).

But the implication of the facts set out by LeDeR are that the medicalisation of learning disability and the resulting over-medication of people who if they didn’t have learning disabilities would be treated very differently, could not just be harming, but in some cases, killing people. The NHS and government need to be able to answer that question with certainty, and if it is the case, the response to it cannot just be another ‘improvement’ programme.

Covid can be 30 times more deadly for people with learning disabilities

The Bristol University-led LeDeR review’s latest figures show shocking differences in the rate at which Covid is killing people with learning disabilities: over 6 times higher for all age groups, but 30 times more likely to die than other 18-34 year olds. This is partly explained by the higher rates of obesity and diabetes among people with learning disabilities, as well as Down’s Syndrome’s physical health impacts being a factor. These risks have been known for a while, and should have resulted in the health and weight loss drive which the Prime Minister has championed being made accessible to people with learning disabilities. However, as we noted in the Report of the National advisory group for People with Learning Disabilities and Autistic People there are other, deeply disturbing factors to consider and address.

Firstly, the report also finds that while the number of deaths of white people with learning disabilities was nearly twice as high this year as last year, for black and asian people it was over four times as high. There is no physical or medical reason for that of which I am aware: it suggests a layer of systemic racism on top of the prejudice which we know people with learning disabilities already encounter in the NHS and other public services. As Kevin Marriott says of his brother Nigel, 60, who died of Covid in April, “People with learning disabilities seem to be be swept aside. He wasn’t given the sort of treatment we would have expected…I got the impression that normal patients would have gone on to a ventilator, but he was just allowed to die.” (The Guardian, November 12)

In our report, we quoted a Learning Disability England survey which found that 13 social care organisations saw an increase in blanket “Do not resuscitate” orders (DNACPRs) in March and April. Turning Point challenged 22 during April/May compared to around three per month beforehand^[1].

How many people with learning disabilities were left to die, when others were treated and saved?

In our report, co-produced with people who have lived experience and families, we called for urgent actions to improve the health of people with learning disabilities and autistic people to reduce unnecessary deaths:

• analyse with urgency GP data on causes of death for autistic people and people with learning disabilities
• a campaign to reduce unacceptably high rates of obesity and diabetes, which increase COVID-19 risks
• reduce prescription of psychotropic medication, which may increase COVID-19 risks and urgently review medication for people with multiple prescribed medications which can carry multiple health risks
• outlawing ‘learning disability’ or ‘autism’ being given as a ‘cause’ of death or a reason for a DNACPR notice^[2].
• Working with self-advocacy groups, families and providers to ensure people with learning disabilities and autistic people, and their family carers and support workers, receive flu vaccinations^[3].

We are waiting for a response on all of these suggestions. The LeDeR report should be the spur to real, urgent action.

---

[1] including a partially-sighted man with pneumonia wrongly diagnosed as coronavirus, who was discharged fully recovered from hospital after a brief stay, but found to have a DNACPR decision citing ‘blindness and severe learning disabilities’.

[2] This was a recommendation of LeDeR, who commented in their recent annual report that, “by recording Down’s syndrome for example as an underlying cause of death, it conceals the more specific causal sequence of events leading to the person’s death. This was the case for 655 deaths.”

[3] Three successive Learning Disability Mortality Review (LeDeR) annual reports identify that pneumonia and aspiration pneumonia are the most frequent conditions cited as Cause of Death for people with a learning disability.

Can we escape the invisible asylum?

Since their origins in the Poor Laws, our ideas about helping people have been tangled up with feelings about excluding or punishing them. To become the subject of state support was once to cross a physical threshold: the gates of the workhouse, lunatic asylum or long-stay ‘hospital’ for disabled people. Many of those thresholds have disappeared into folk-memory, but the idea of separating people into those who are citizens of their communities, and those who are wards of the state, remains threaded through our health, care and support services, in ways which have become so familiar they are invisible.

The rules and assumptions of the invisible asylum can be felt in ‘community’ services which feel nothing like community. They start with assessments and means tests which challenge people to prove their level of need, often at the cost of believing in their independence. They are felt in approaches that treat families who have managed on their own for years, as though they are capable only of being ‘difficult’ for the very services which ignored them before they reached crisis point.

This is not to decry the value of our underfunded and undervalued public services. But for our welfare state to survive, we need to be able to see it clearly: the miracles our services can achieve in the operating theatre and their small, devastating failures to see the person underneath the patient’s gown. There was a time when most of us could ignore those failures, hoping that we wouldn’t find ourselves in need of state support, or would need it only for a brief period which we prefer not to think about. But now we live longer lives, with longer periods of ill health, frailty or social isolation. Whether those years – and in many cases decades – in which we need state support will amount to a good life is not solely in the gift of GPs, surgeons or social workers. It depends for most of us on the relationships we have with everyone we rely on: our family and friends, alongside people paid to help us.

So we need models of community support which focus as much on ‘community’ as ‘support’. Working for nearly eight years with the remarkable people involved in Shared Lives and Homeshare has brought into perspective for me the inability of many services to escape the asylums of their origins. I have also witnessed supportive relationships which do not sacrifice the social for the care, which recognise interdependence is as important as independence, and that caring is an emotion before it is an activity.

In my forthcoming book, A new health and care system: escaping the invisible asylum (Policy Press, February 2018) I outline a possible health and care system which would take the ethos and practices of asset-based and community-orientated support models and build a system and a sustainable economics around them. A system which would demand, measure and pay for the goals – wellbeing, resilience, confident households – we all agree we want, but seem to accept we cannot have. The people who currently shape services have proved themselves incapable of designing approaches to achieve those more human goals. They can only be co-designed with the people who make long term use of services, their families and workers. They would offer us more but would only work if we were prepared to have more asked of us in return.

Those services would be organised at a more personal scale, perhaps eventually eschewing the traditional idea of an organisation entirely, so the book focuses as much on what needs scaling down to human size, as on scaling up the innovations of which we need more. It starts with those failures we should see as inexcusable, yet ignore or dismiss, but it is rooted in the belief that we can and do care for each other, and that the only future for our public services is to create spaces in which people with support needs, families and front line workers can have the relationships we would all wish to have.

You can order A new health and care system: escaping the invisible asylum from the Policy Press. The launch at Nesta on 28 Feb, which has done so much to support our work, is here. The Northern launch event with Greater Manchester’s Chief Officer Jon Rouse is at MetroPolis on 20th March.