Avoidable Deaths of People with Learning Disabilities: The Statistics that Shame Our Civilised Society
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My 34-year-old sister is currently more likely to die an avoidable death than at any other stage in her life, according to a shocking new report.
In the latest NHS-funded annual review of deaths among people with learning disabilities, a bleak line graph shows an “odds ratio of avoidable death for age group”, which peaks between the ages of 25 and 49.
Right now, I hasten to add, Raana – who has the learning disability fragile X syndrome – is in good health and is well cared for by her supported living staff in Hampshire.
But the report lays bare how part of our population is less likely to receive good quality health and social care. This makes people like Raana less likely to survive health problems that, for most of us, are preventable and treatable.
Researchers at King’s College London, the University of Central Lancashire and Kingston University London reviewed the deaths of 3,648 people with a learning disability. Overall, almost half died an avoidable death – compared to two in 10 in the general population. The median age of death in was 63 years – around 20 years less than usual.
These terrible facts shame our modern, civilised society, one that on Human Rights Day this Sunday will mark the 75th anniversary of the Universal Declaration of Human Rights Day. The day partly reflects equality 'for all'.
In contrast, the new report highlights a deep inequality. It reflects how learning disabled people from ethnic minority backgrounds are likely to die earlier, as well as those in deprived areas. It also warns of “excess deaths” caused by heatwaves related to climate change.
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The findings are shocking enough, but equally unsettling is the fact that evidence of such premature deaths – and the actions needed to prevent them – are well-established, and have been so for years.
This is the sixth annual report of its kind (the deaths review programme began in 2017), and it is also a quarter of a century since Sheila Hollins, now a crossbench peer, led a report into the increased risk of early death among people with learning disabilities.
In the 25 years since, those original findings have been amplified by a multitude of similarly focused reports and inquiries exposing the significant health inequalities faced by this group of people.
This includes 2013’s Department of Health-funded Confidential Inquiry into the deaths of people with learning disabilities, two reports by Mencap in 2004 and 2007, a Disability Rights Commission study in 2006, and a Department of Health inquiry in 2009.
Just a month ago, an investigation by the watchdog Health Services Safety Investigations Body showed that hospitals put patients with learning disabilities at risk because their need are not met. It found the health and care system “is not always designed to effectively care for people with a learning disability”.
Of course, the investigations and research have laudable aims – to raise awareness, learn from and prevent avoidable deaths, improve care and reduce health inequality. But data alone does not dent entrenched structural inequalities – we need more effort, not just more evidence.
Successive governments – particularly the current one – instead seem content with facilitating and encouraging yet more data alone, while generally turning a blind eye to the recommendations suggested alongside it.
The actions raised by researchers involved in this latest report and previous ones include issues like prioritising people with a learning disability for vaccinations and boosters, a special focus on the health of people from ethnic minority backgrounds, and steps to make medical communication and appointments more accessible.
Yes, there are welcome developments from some with the power to act, mostly in response to campaigners. There is a greater push within some NHS regions for learning disabled people to take up annual health checks or the launch of accessible vaccination clinics, with reasonable adjustments as standard. And there is the roll-out of e-learning for health and care staff through the Oliver McGowan Mandatory Training in learning disability and autism.
But none of this is widespread or proportionate to need.
The hearings in the COVID Inquiry are another reminder that the Government had no plan for disabled people – especially disabled people from black, Asian or ethnic minority backgrounds – despite their higher risk of death in the pandemic.
Alongside the lack of specific action on the health of learning disabled people, the Government is also failing to tackle the wider determinants of wellbeing.
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For example, it dropped long-awaited plans to reform the Mental Health Act, excluding it from the recent King’s Speech. These reforms would have meant fewer people with learning disabilities being detained in secure units (a group that is detained, despite not having mental health issues).
And it gave lip-service to Baroness Hollins’ long-awaited report calling for an end to the long-term segregation of learning disabled people in secure units. More than 2,000 people are still locked away in these inappropriate, restrictive and traumatising places.
More generally, the public sector cuts, lack of funding for social care, and the Government's move to block family members of overseas care workers from coming to the UK, threaten the already fragile support that exists. This further undermines the safety net that keeps people from a healthcare crisis.
No wonder then at the anger, sadness, disappointment and fear expressed by the Kingston University-based Staying Alive and Well Group, an advisory group of 10 people with a learning disability which informed the Learning from Lives and Deaths report.
In a statement and accessible video released as part of the report, the group renamed the study “Spot the Difference” because “we are saying the same things year after year after year… we sometimes feel like we are banging our heads against a brick wall, like nothing has changed”.
It is devastating that the words of this expert group of people with learning disabilities are as accurate and relevant today as they would have been when research in this area began – 25 years ago: “Everyone should be treated equally. Everyone has the right to live and be cared for. People with a learning disability can live well with the right support, but our lives are not valued enough.”
Saba Salman is the editor of 'Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’. She is the chair of the charity Sibs, which supports the siblings of disabled children and adults