The fear that so many felt as the death toll rose during the Covid pandemic was magnified for Fiona Walker. “I know from experience they wouldn’t have valued my life,” she says, in a new report on the treatment of people with learning disabilities during the crisis.
The 1.5 million people in the UK with learning disabilities, and their families, had reason for concern. Death rates in England were four to six times higher than average for people with learning disabilities. As is now well established, the pandemic did not create inequalities; it exposed and intensified them. People with learning disabilities die on average 19.5 years earlier than people without, and deaths are almost twice as likely to be classed as avoidable.
Learning the lessons means listening to people with learning disabilities and their family carers. Ms Walker and others were commissioners for the new How We Survive and Thrive report led by Learning Disability England, working with researchers from the University of Birmingham and Manchester Metropolitan University. It describes how families were abandoned by planners in the pandemic, though carers and communities gave welcome support. While care homes were failed, the needs of those living in family homes or community settings were often simply overlooked.
Recommendations include prioritising patients with learning disabilities and finding ways to increase rather than decrease support in a future crisis. But other improvements would help now as well as in the next public health emergency: ensuring people are included on the GP learning disability register, and providing accessible information and reasonable adjustments. Reactions to treatment can be wrongly taken as a refusal of care, when they really point to the need for easier to understand information, or the presence of a carer who can explain to or advocate for the patient. As Mencap has pointed out, such adjustments can be the difference between life and death.
While many carers and health workers may provide remarkable support and treatment, professionals are not immune from society’s prejudices. The shocking imposition of “do not attempt cardiopulmonary resuscitation” decisions on people with learning disabilities in the pandemic may have partially reflected initial advice from the National Institute for Health and Care Excellence (Nice). It said that patients should be assessed as scoring high for “frailty” – potentially affecting whether they received critical care – if they needed support with personal care, whatever the reason. Nice had to withdraw it. Testimony from patients with learning disabilities and their families suggests dangerous assumptions about patients’ quality of life also played a role. Those will be overcome only through sustained training and accountability.
Alarmingly, however, families and campaigners fear that progress made in recent decades is now being undone. Alongside cuts to social care packages and local support come profound challenges in healthcare. Important initiatives such as the Learning from Lives and Deaths scheme, examining the care received by people with learning disabilities and autism before their deaths, and mandatory training for healthcare staff on treating such patients, face growing funding pressures. The number of learning-disability nurses has fallen by a third since 2009 and student numbers are collapsing. That must be reversed. Learning disabilities should not mean a shorter life.
