People with learning disabilities must be listened to more closely in health planning after a report found that many families were overlooked during the Covid-19 pandemic, when death rates in England were four to six times higher than average.
The findings are set out in How We Survive and Thrive, a report led by Learning Disability England with researchers from the University of Birmingham and Manchester Metropolitan University. Its conclusions are based on the experiences of people with learning disabilities, their families and carers, and call for their needs to be given greater priority both in routine healthcare and during future public health emergencies.
“I know from experience they wouldn’t have valued my life,”
Fiona Walker, one of the report’s commissioners, said the fear experienced by many people during the pandemic was intensified by her previous experience of healthcare. Her account reflects wider concerns about whether people with learning disabilities were properly recognised in decisions made during the crisis.
Disparities exposed by the pandemic
There are about 1.5 million people with learning disabilities in the UK. The report places the pandemic experience within a much longer pattern of unequal health outcomes. People with learning disabilities die, on average, 19.5 years earlier than people without learning disabilities, while their deaths are nearly twice as likely to be recorded as avoidable.
| Measure | Finding cited in the report |
|---|---|
| People with learning disabilities in the UK | About 1.5 million |
| Average difference in life expectancy | 19.5 years earlier |
| Covid-era death rates in England | Four to six times higher than average |
| Deaths classed as avoidable | Almost twice as likely |
The report argues that Covid did not create these inequalities but made them more visible and severe. Families living with relatives in their own homes or in community settings were often overlooked by planners, while care homes were also described as having been failed. At the same time, family carers and local communities provided important support when formal systems did not meet people’s needs.
Changes urged in everyday care
The authors say lessons from the pandemic should result in practical changes, not only emergency planning. Among the measures identified are:
- giving people with learning disabilities priority in a future public health crisis;
- increasing support rather than reducing it when services come under pressure;
- making sure people are included on their GP’s learning disability register;
- providing information in an accessible form and making reasonable adjustments during care.
These adjustments can include clearer explanations and the involvement of a family carer who can help a patient understand information or speak on their behalf. The report warns that a person’s response to treatment may be misinterpreted as a refusal of care when it may instead indicate that the information is difficult to understand or that additional support is required.
Implications for the NHS
The concerns extend beyond pandemic preparedness. Ensuring that people are recorded on learning disability registers could help health professionals identify patients who may need tailored communication or other assistance. Accessible information and a consistent willingness to make adjustments could also affect whether symptoms are understood, decisions are properly informed and treatment is delivered fairly.
The report’s message is that policy must be shaped with people with learning disabilities and their family carers, rather than designed around assumptions about them. Its recommendations therefore address both the next emergency and the inequalities that remain in ordinary healthcare. The evidence of earlier deaths and the higher proportion considered avoidable means that listening to patients is not simply a matter of consultation: it is central to improving safety and survival.
