People with a learning disability from Black, South Asian and minority ethnic backgrounds face shorter life expectancy, triggered by poorer healthcare access, experience and outcomes.
The average age of death for people with a learning disability who are from an ethnic minority is 34 years – just over half the life expectancy of white counterparts, at 62 years of age.
Of those with a learning disability who die in hospital, 51% from ethnic minority groups have a ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) recommendation, compared to 73% for those who are white.
These and other findings are outlined in the independent NHS Race and Health Observatory new recommendations report that examines two decades of research looking into discriminatory barriers preventing equitable healthcare treatment.
The report, We Deserve Better: Ethnic Minorities with a Learning Disability and Access to Healthcare, is aimed at health and care leaders, policy leads, practitioners and researchers and captures the lack of reasonable adjustments and failure to recognise individual needs.
Chris Hatton, Professor of Social Care at Manchester Met, said: “We hope that this comprehensive report with its practical recommendations is a catalyst for the actions needed to tackle the shocking health inequalities experienced by people with learning disabilities from ethnic minority communities.”
Supported by NHS England, the comprehensive five-part report contains data, personal interviews and analyses undertaken by Manchester Met, alongside lead author University of Central Lancashire, and in collaboration with Learning Disability England and the Race Equality Foundation.
Other obstacles identified include language barriers, cultural and religious insensitivity, a lack of information in easy read format, and a lack of information during transitional care in hospital and home. Authors emphasise the need for healthcare providers to tailor support needs and recognise and record accurate, granular ethnicity data.
While a number of recommendations are primarily for NHS England, the Department for Health and Social Care, and Integrated Care Systems and Boards, the review urgently calls for future research to explore what is driving the lower age at death in ethnic minorities with a learning disability, including avoidable causes of death.
A consistent theme from those with lived experience was a lack of accessible information, contact and support across GP, community, and hospital-based services.
The report’s recommendations include adding ethnicity data to data collected as part of the Health and Social Care of People with Learning Disabilities Dataset, to enable regular and ongoing analyses. It also recommends that medical examiners in England should have specific training and advice on identifying deaths of people with a learning disability and autistic people, and that future research on learning disability should aim to investigate differences in health outcomes by ethnicity.
Dr Habib Naqvi, Chief Executive of the NHS Race and Observatory, said: “The disparities identified by this review are unjustifiable and avoidable. For too long, people with a learning disability from an ethnic minority background have received inequitable care and poor outcomes. We will work with all relevant organisations to help drive further, faster progress in ensuring people with a learning disability from ethnic minority backgrounds receive equitable, high-quality health and social care provision.”
Siraaj Nadat, a Senior Quality of Life Facilitator at Changing Our Lives and part of the review’s working group, added: “They need to see the person first, not the disability or race and work with the person on how best to help them. We need to do more and improve. We need to work with both health and social care. Being a disabled man from a minority ethnic community, I am not only passionate to talk about the health inequalities that these communities face but to see change happen.”
