The COVID-19 pandemic exposed and deepened existing inequalities affecting people with learning disabilities, according to a report produced by Learning Disability England with researchers from the universities of Birmingham and Manchester Metropolitan University.
Around 1.5 million people in the UK have learning disabilities. During the pandemic, people in this group in England died at rates four to six times higher than the average. Across the population, they die an average of 19.5 years earlier than people without learning disabilities, while their deaths are almost twice as likely to be classified as avoidable.
The report, How We Survive and Thrive, was commissioned with the involvement of people with learning disabilities and family carers. It describes how families were left out of planning during the health crisis, even though carers and local communities provided important support. The needs of people living in family homes or community settings were frequently overlooked, while care homes also failed to receive adequate support.
Its recommendations include prioritising people with learning disabilities during any future emergency and increasing support rather than reducing it. The report also calls for people to be included on GP learning disability registers, as well as accessible health information and reasonable adjustments to care.
Researchers and campaigners warn that a person’s reaction to treatment can be misinterpreted as a refusal of care. In some cases, patients may instead need clearer information or the involvement of a carer who can explain procedures and advocate on their behalf. Mencap has said that these adjustments can be decisive.
The pandemic also highlighted the danger of assumptions about quality of life. Decisions not to attempt cardiopulmonary resuscitation were imposed on some people with learning disabilities. Initial guidance from the National Institute for Health and Care Excellence suggested that needing help with personal care could contribute to a high frailty assessment, regardless of the reason for that need. The guidance was later withdrawn.
The report argues that lasting progress will require sustained training and accountability among healthcare professionals. Families and campaigners are concerned that advances achieved in recent decades are being reversed by cuts to social care and local services.
Funding pressures are also affecting the Learning from Lives and Deaths programme, which examines care received by people with learning disabilities and autism before their deaths, alongside mandatory training for healthcare staff. The number of learning-disability nurses has fallen by a third since 2009, while student numbers are declining. The report says this trend must be reversed so that learning disabilities do not result in shorter lives.
Sources: The Guardian Science.