Preventing people with a learning disability from dying too young

People with a learning disability need more support to ensure they stay in good health. But there are large inequalities in access to health services for this group compared with the rest of the population.

This report looks at a set of five key health care services in England that people with a learning disability should have access to. We wanted to understand how well these services are working for people with learning disabilities and whether they are able to get the support they need. We looked at obesity, cancer screening, mental health, annual health checks, and early diagnosis. This is the first time that evidence has been brought together on these important measures of prevention for this group of people.

We found clear evidence that people with a learning disability are not always able to get equitable preventive support:

• People with a learning disability are more likely than the rest of the population to be obese, particularly in teenage years and into  young adulthood.
• Over the past five years, there has consistently been a 15 percentage-point difference in breast cancer screening rates and a 36 percentage-point difference in cervical cancer screening rates between people with a learning disability and the rest of the population.
• Cancer is often diagnosed at a later stage for people with a learning disability than for the rest of the population. These late diagnoses are sadly often made in an emergency at the hospital. Cancer rates seem to be lower in people with a learning disability aged 55 and over than in the rest of the population of the same age. This seems to show that cancer diagnoses for people with a learning disability are being missed.
• Only around 26% of people with a learning disability in England are on the learning disability register. If people are not on this register they may not be able to get annual health checks or Covid-19 and flu vaccinations.
• People with a learning disability are more likely to have mental health problems. But access to good mental health treatments is often poor. People with a learning disability are less likely to be referred for talking therapies and more likely to be prescribed psychotropic medicines for psychosis, depression and epilepsy than other people. More than 30,000 adults with a learning disability are taking psychotropic medicines even though they do not have a diagnosis of the conditions the medicines are prescribed for.

Many opportunities for support that could help to stop people with a learning disability from getting health problems are being missed as a result of disjointed care, and information and communication that are not well suited to the people they are being provided to.

Recommendations

We recommend that:

• NHS England should conduct a national review of the quality of annual health checks for people with a learning disability.
• Integrated care boards should use local data to review the number of people on GP learning disability registers and organise targeted information campaigns to encourage people to join the register.
• The number of health and social care staff working in care coordination roles should be increased to improve care coordination for people with a learning disability.
• All providers of NHS and publicly funded social care should deliver training to staff in the use of the ‘Reasonable Adjustment Digital Flag’ .
• All local authorities should provide weight management programmes specifically designed for people with a learning disability. 

Read the full detailed report 

Read the easy read version