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People with a learning disability are missing out on potentially life-saving preventive healthcare because services are disjointed and communication is not well-suited to them, according to a damning new report from the Nuffield Trust.
The report, Preventing people with a learning disability from dying too young, explores preventive healthcare for people with a learning disability and their ability to access effective health and care services across five key areas: prevention of obesity; cancer screening; annual health checks; addressing mental health problems; and early diagnosis.
It found that 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.
It also found that 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 also taking psychotropic medicines when they do not have a diagnosis of the conditions the medicines are prescribed for.
Annual health check for people with a learning disability
The thinktank is calling for immediate action to make it easier for people with a learning disability to get tailored annual health checks. These are available to people aged 14 or over who are on their GP practice’s learning disability register. Currently, only approximately 26% of people with a learning disability in England are on the register. This proportion is likely to be even lower for people from minority ethnic backgrounds.
It says that integrated care boards should organise targeted information campaigns to encourage people to join the learning disability register as evidence suggests that the checks can be beneficial for preventing disease occurring in the first place.
The health check should include a physical check-up, including weight, height and blood pressure, and patients should be asked if they have any health concerns or worries relating to different bodily systems. The health professional should ask about health problems that can be more common in people with a learning disability, such as epilepsy or constipation.
Reasonable adjustments should be considered and there should be a review of medications that the patient is currently taking. The health check should also include discussions about immunisation, screening and health promotion, with advice given about diet, exercise, smoking and more.
Cancer screening and learning disability
Cancer is also often diagnosed at a later stage for people with a learning disability than for the rest of the population. These late diagnoses are often made in an emergency at the hospital. In addition, 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.
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.
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.”