Valuing Lives: Why Listening to People with Learning Disabilities Is a Matter of Survival

The terror that gripped so many as the Covid-19 death toll mounted was amplified for Fiona Walker. “I know from experience they wouldn’t have valued my life,” she states in a new report examining the treatment of people with learning disabilities during the crisis.

There was ample cause for alarm among the 1.5 million people in the UK with learning disabilities and their families. In England, death rates for this group were four to six times higher than the general population. As is now widely acknowledged, the pandemic did not create these inequalities; it laid them bare and intensified them. People with learning disabilities die, on average, 19.5 years earlier than those without, and their deaths are nearly twice as likely to be deemed avoidable.

Learning the necessary lessons requires genuinely listening to people with learning disabilities and their family carers. Walker and others served as commissioners for the new How We Survive and Thrive report, led by Learning Disability England in collaboration with researchers from the University of Birmingham and Manchester Metropolitan University. The report details how families were abandoned by planners during the pandemic, even as carers and communities provided vital support. While care homes faced systemic failures, the needs of those living in family homes or community settings were frequently overlooked entirely.

Recommendations include prioritising patients with learning disabilities and ensuring support is expanded rather than reduced in future crises. However, other improvements would yield immediate benefits alongside long-term resilience: guaranteeing inclusion on the GP learning disability register, providing accessible information, and making reasonable adjustments. Reactions to treatment are often mistaken for a refusal of care, when they actually signal a need for clearer communication or the presence of a carer to explain or advocate for the patient. As Mencap has emphasised, such adjustments can quite literally be the difference between life and death.

While many carers and healthcare professionals provide exceptional support, they are not immune to societal prejudices. The shocking imposition of “do not attempt cardiopulmonary resuscitation” (DNACPR) decisions on people with learning disabilities during the pandemic may have stemmed partly from initial guidance by the National Institute for Health and Care Excellence (NICE). This guidance suggested patients should be assessed as having high “frailty” scores—potentially affecting access to critical care—if they required support with personal care, regardless of the reason. NICE was forced to withdraw it. Testimony from patients and families indicates that dangerous assumptions about quality of life also played a role. Overcoming these biases demands sustained training and robust accountability.

Alarmingly, families and campaigners warn that progress achieved over recent decades is now being reversed. Alongside cuts to social care packages and local support, the healthcare sector faces profound challenges. Vital initiatives such as the Learning from Lives and Deaths (LeDeR) programme—which reviews the care received by people with learning disabilities and autistic people before their deaths—and mandatory training for healthcare staff on treating such patients are under growing financial strain. The number of learning disability nurses has fallen by a third since 2009, and student recruitment is collapsing. This trend must be reversed. A learning disability should not equate to a shorter life.

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