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A shocking new report suggests my 34-year-old sister is now more likely to suffer an avoidable death than at any other stage in her life.
In the latest NHS-funded annual study into deaths among people with learning disabilities, a dark line graph shows the “odds ratios of avoidable deaths by age group”, which peaks between 25 and 49 years old.
We should note that Raana, who has Fragile X Syndrome, a learning disability, is currently in good health and is receiving excellent care from Hampshire Supported Living staff.
But the report also highlights that some parts of the country lack access to quality health and social services, meaning people like Raana are unlikely to escape health problems that are preventable and treatable for most of us.
Researchers from King’s College London, the University of Central Lancashire and Kingston University London looked at the deaths of 3,648 people with a learning disability. Overall, almost half were avoidable deaths, compared with two in 10 in the general population. The median age at death was 63, about 20 years younger than normal.
These horrifying facts are a disgrace to our modern civilized society. This Sunday, Human Rights Day marks the 75th anniversary of the Universal Declaration of Human Rights, a day that reflects, in part, equality for “all people.”
In contrast, the new report highlights stark inequalities – reflecting that people from ethnic minority backgrounds, people with learning disabilities and people from deprived areas are more likely to die prematurely – and it also warns of “excess deaths” from heatwaves linked to climate change.
If the narrative is dominated by people who look different and do not share the experiences of minorities, the system will continue to fail, writes Ramandeep Kaur.
Ramandeep Kaur
The findings are shocking, but equally disturbing is the fact that evidence of these premature deaths, and the steps needed to prevent them, have been established for years.
This is the sixth annual report of its kind (the Mortality Review Programme began in 2017) and comes 25 years since now-crossbench MP Sheila Hollins led a report into the increased risk of premature death for people with learning disabilities.
In the 25 years since, these original findings have been expanded by numerous similarly focused reports and studies that highlight the significant health disparities facing this group of people.
These include a confidential inquiry funded by the Department of Health in 2013 into deaths of people with learning disabilities, two reports by Mencap in 2004 and 2007, a Disability Rights Commission inquiry in 2006 and a Department of Health inquiry in 2009.
Just a month ago, an investigation by watchdog the Health Service Safety Inspectorate found that hospitals were putting patients with learning disabilities at risk by failing to meet their needs. The investigation found that the health and care system is “not always designed to care for people with learning disabilities effectively”.
Of course, surveys and research have laudable objectives: to raise awareness, learn from and prevent avoidable deaths, improve care, and reduce health disparities. But data alone cannot disrupt deep-rooted structural inequalities. We need more effort, not just more evidence.
Successive governments, but especially the current one, seem instead content to promote and encourage even more data, while largely turning a blind eye to the recommendations that come with it.
Measures put forward by researchers behind this latest and earlier reports include prioritising people with learning disabilities for vaccinations and booster doses, a special focus on the health of people from ethnic minority backgrounds, and measures to make health communication and appointments more accessible.
Yes, there are welcome developments happening, mainly in response to activist voices, from some powerful quarters. There is greater pressure in some areas of the NHS to ensure that people with learning disabilities have annual health checks, or to set up accessible vaccination clinics with reasonable accommodation as standard. There is also the rollout of e-learning for health and care staff through Oliver McGowan mandatory training in learning disabilities and autism.
However, none of these are widely available or adequate to meet the needs.
The COVID inquiry hearings are a further reminder that the government had no plan for disabled people, particularly those from black, Asian and minority ethnic backgrounds, despite them being at higher risk of death from the pandemic.
Not only is there a lack of specific measures relating to the health of people with learning disabilities, the government is also failing to address the wider determinants of wellbeing.
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For example, the government has withdrawn long-awaited plans for reform of the Mental Health Act and removed it from the recent King’s Speech. These reforms would have reduced the number of people with learning disabilities detained in residential care – a group of people who are detained despite not having any mental health problems.
And the committee gave lip service to Baroness Hollins’ long-awaited report calling for an end to the long-term isolation of people with intellectual disabilities in residential care – with more than 2,000 people still confined to these inappropriate, restrictive and traumatic settings.
More generally, public sector cuts, underfunding of social services and government moves to block families of overseas care workers from entering the UK are threatening already weak existing supports – further weakening the safety net that protects people from health crises.
No wonder then that anger, sadness, disappointment and fear were expressed by the Kingston University-based Staying Alive and Wellbeing Group, an advisory group of 10 people with learning disabilities who helped write the Learning from Living and Dying report.
In a statement released as part of the report and a video available to watch, the group renamed the study “Spot the Difference” because “we’ve been saying the same things for years and years, so sometimes it feels like we’re banging our heads against the wall as if nothing has changed.”
It is striking that the words of a group of experts on learning disabilities are as accurate and relevant today as they were 25 years ago when research in this field began: “Everyone should be treated equally. Everyone has the right to live and to be cared for. People with learning disabilities can live full lives with the right support, but our lives are not valued enough.”
Saba Salman is the editor of Made Possible: success stories of people with learning disabilities – in their own words. She is Chair of Sibs, a charity that supports the siblings of disabled children and adults.