Urgent need to improve access to health checks for people with a learning disability

Immediate action should be taken to make it easier for people with a learning disability to get the tailored health checks and preventive care they need to stay well, a think tank has warned today.

A new report from the Nuffield Trust highlights existing data showing a 20-year gap in median age at death between people with and without a learning disability and that two-in-five deaths of people with a learning disability in 2022 were classified as avoidable compared to one-in-five deaths for the general population.

The Nuffield Trust's analysis of the latest NHS data points to a 36-percentage point gap in the screening rate for cervical cancer; that young people aged 18 to 24 with a learning disability have double the prevalence of obesity (31% with a learning disability compared to 16% without); and that 22% of people with a learning disability are being treated with antidepressants compared to 11% of people without a learning disability.

The authors show that people with learning disabilities are missing out on potentially life-saving preventive health care because services are disjointed, information and communication is not well-suited to them, and health care professionals lack knowledge about how to adapt services for people with a learning disability. Currently only one in four people with a learning disability are on the GP learning disability register, which the think tank says is creating significant barriers to many of them accessing preventive care and spotting health problems, like cancer, early.

To turn the tide on this issue, NHS England needs to improve access to and the quality of annual health checks across the country; integrated care boards should organise targeted information campaigns to encourage people to join the learning disability register; and local authorities should provide weight management programmes specifically tailored for people with a learning disability. The number of health and social care staff working in care coordination roles also needs to increase.

Preventing people with a learning disability from dying too young pulls together data across preventive care such as prevention of obesity; cancer screening; addressing mental health problems; annual health checks; and early diagnosis for the first time. It finds clear evidence that this group are not always able to get equitable preventive support:

•              In 2022/23, just over half of people with a learning disability who were eligible for bowel cancer screening had the test compared to two-thirds of eligible people without a learning disability. There has also consistently been a 15-percentage point difference in breast cancer screening rates between people with a learning disability and the rest of the population. Data from 2017-19 also shows that 35% of individuals with a learning disability who died with cancer had their cancer identified at an emergency presentation at hospital.

•              People with a learning disability are more likely to be obese, particularly in teenage years and in young adulthood, and in 2022/23 an average of 7.5% had an active diagnosis of type 2 diabetes compared with 5.1% of people without a learning disability.

•              Despite a higher prevalence of mental health problems in people with a learning disability, they are less likely to be referred for talking therapies than those without a learning disability, and they generally have poorer recovery rates.

•              More than 30,000 adults with a learning disability are taking psychotropic medicines when they do not have a diagnosis of the conditions the medicines are prescribed for. 

Nuffield Trust Fellow Jessica Morris said:

"It’s appalling that so many people with a learning disability are dying too young and from preventable causes, but it doesn't have to be this way.

“We will not begin to improve access to services for people with a learning disability unless access to much-needed preventive health services becomes less disjointed and adjustments are made to make services as accessible as they are for everyone else. Ultimately, people with a learning disability need access to timely and effective health care, where care is well coordinated, and signs and symptoms of illness are picked up early.

“While our research has focused on some major areas of health care for people with learning disabilities, there is much more work to be done to understand and change the inequitable health outcomes they are experiencing.”