Campaigners say too little is being done to prevent early deaths of people with learning disabilities

Campaigners, researchers and families say current health services are failing to prevent premature and avoidable deaths among people with learning disabilities, citing official mortality reports and first-hand accounts that point to systemic gaps in care.

Mortality analyses show people with learning disabilities die, on average, around 20 years earlier than the general population and that roughly 39% of deaths in this group are classified as avoidable. The Welsh government said it has an action plan to tackle inequality and reduce avoidable and premature deaths and that it has rolled out learning-disability training across the NHS workforce since 2022.

Sara Pickard, a 41-year-old community councillor and Mencap Cymru worker who has Down's syndrome, described the scale of avoidable deaths and the difference in life expectancy as “shocking.” She said her own encounters with healthcare were generally positive but that many friends with learning disabilities had died prematurely. “One was younger than me. It's really sad to think,” she said, adding that meaningful engagement with people with learning disabilities is lacking.

People with learning disabilities in the UK are entitled to annual health checks through their GP, intended to identify illnesses early. Campaigners and researchers say those checks can become a “tick-box” exercise and that reasonable adjustments—such as liaison nurses and tailored communication—are unevenly available.

Dr Dawn Cavanagh, an academic and campaigner whose 22-year-old son Jack has a severe learning disability, recounted a case she says exemplifies the problem. When Jack became seriously ill, Dr Cavanagh said clinicians initially dismissed her concerns and focused on his behaviour instead of physical symptoms, a phenomenon known as diagnostic overshadowing. By the time he was admitted to hospital, his appendix had burst and he suffered a twisted, blocked bowel. He survived but required a lengthy physical and psychological recovery.

“This is a group of people who are being deeply wronged,” Dr Cavanagh said. She described an “unacceptable indifference” toward the health of people with learning disabilities and said reviews and scandals over the years had not led to adequate accountability or change.

Stuart Todd, a professor of intellectual disability research at the University of South Wales, said improvements in primary care have been made but are insufficient, particularly in emergency and secondary care settings. He noted that research suggests many people with learning disabilities die from conditions not usually regarded as life-threatening in the general population, indicating delayed recognition or treatment of common illnesses.

“What happens in hospitals? What happens when people present in A&E and what adjustments are being made to make that a meaningful and effective interaction for people?” Prof. Todd said, calling for a coordinated strategy to connect primary and secondary care and ensure accessibility across all levels of the health system. He is leading new research into end-of-life care for adults with learning disabilities.

Recent reports cited by advocates found the most common age of death for people with learning disabilities was 67, about two decades younger than the most common age of death in the wider population. A separate report in England estimated 39% of deaths among people with learning disabilities were avoidable, meaning better care could have prolonged lives.

The Welsh government said policy and strategy development had been shaped by people with lived experience who contribute directly to a ministerial advisory group. Officials pointed to the workforce training rollout and other efforts aimed at understanding and supporting the specific health and care needs of people with learning disabilities.

Campaigners welcome training and policy development but say implementation and accountability remain the crucial challenges. They urge stronger mechanisms to ensure annual health checks are comprehensive rather than perfunctory, better diagnostic practices to prevent overshadowing, and system-wide adjustments so that emergency and hospital care respond effectively to the needs of people with learning disabilities.

Families, researchers and advocacy organisations say addressing the disparity requires sustained political will, clearer accountability structures and routine inclusion of people with learning disabilities in policy design and evaluation. They also call for data monitoring to track whether reforms reduce premature and avoidable deaths.

The Welsh government reiterated its commitment to tackling health inequalities and said it remained focused on reducing avoidable and premature deaths among people with learning disabilities. Officials said they would continue to work with people with lived experience to shape policy and improve care pathways.

Advocates say recent steps are welcome but insufficient; until systemic gaps in primary, emergency and hospital care are closed, they warn, many people with learning disabilities will continue to face a heightened risk of avoidable and premature death.