New report: people with learning disabilities were left behind in UK's Covid-19 response

A new report, "How We Survive and Thrive", has examined how people with learning disabilities were treated in the United Kingdom during the Covid-19 pandemic. It was led by the charity Learning Disability England, working with researchers from the University of Birmingham and Manchester Metropolitan University. It shows this group was especially vulnerable during the crisis, while concern is now growing over cuts to health and social support.

The figures

An estimated 1.5 million people in the UK have learning disabilities. In England, their death rates during the pandemic were four to six times higher than average. More generally, such people die on average 19.5 years earlier than those without learning disabilities, and their deaths are almost twice as likely to be classed as avoidable.

What the report found

Fiona Walker, one of the report's commissioners, says she knows from experience that her life would not have been valued. The document describes families being abandoned by planners during the pandemic, even though carers and communities offered support. Care homes were failed, while the needs of people living in family homes or community settings were often simply overlooked.

"Do not attempt cardiopulmonary resuscitation" decisions were imposed on people with learning disabilities. This may partly reflect early guidance from the National Institute for Health and Care Excellence (Nice), which said patients needing help with personal care should be scored as highly "frail", potentially affecting access to critical care. Nice had to withdraw it. Testimony from patients and families also points to dangerous assumptions about their quality of life.

Recommendations

The report recommends prioritising patients with learning disabilities and increasing, rather than reducing, support in a future crisis. Steps that would help now include making sure people are on the GP learning disability register and providing accessible information and reasonable adjustments. The charity Mencap says such adjustments can be the difference between life and death.

Funding concerns

Families and campaigners fear that progress made in recent decades is being reversed. Social care packages and local support are being cut, and the Learning from Lives and Deaths scheme and mandatory staff training face funding pressure. The number of learning-disability nurses has fallen by a third since 2009.