The Health and Care of People with Learning Disabilities dataset: Cancer

  Note: if you want to skip the graphs, go straight to the conclusions for a quick summary...

We've known for a long time about the health inequities experienced by people with learning disabilities. We know these health inequities are big, resulting in much earlier typical ages of death compared to other people, and we know that these health inequities cut across a wide range of health conditions.

This blogpost will summarise some recent information about people with learning disabilities relating to cancer screening and cancer diagnosis - in the data released there is nothing on cancer treatment. 

This blogpost is the fourth of a series going into a lot of detail using information from the 'Health and Care of People with Learning Disabilities' dataset, compiled by NHS England. Every year (going April to March), this has taken information from GP information systems in England to produce statistics about the health and health treatment of just over half of people registered with a GP as a person with learning disabilities, often comparing them to the health and healthcare of people without learning disabilities. The most recent information available covers April 2024 to March 2025.

Cancer screening

In England there are national screening programmes for:

• Breast cancer - in this dataset information is available for 'female' people with and without learning disabilities aged 50-69.
• Cervical cancer screening - in this dataset information is available for female people with and without learning disabilities aged 25-64, in terms of both eligibility for cervical cancer screening and the completion of 'adequate' tests.
• Colorectal cancer screening - in this dataset information is available for all people with and without learning disabilities aged 60-74.

Breast cancer screening. The graph below shows the percentage of female people with and without learning disabilities (the label used in the dataset) aged 50-69 who were screened for breast cancer, from 2017/18 to 2024/25. In 2024/25, less than half of eligible female people with learning disabilities (48.8%) had been screened for breast cancer, compared to 62.6% of eligible female people without learning disabilities. For both groups, the rate of breast cancer screening has reduced slightly from 2017/18.

Cervical cancer screening. The first graph below shows the percentage of female people with and without learning disabilities aged 25-64 who were eligible for cervical cancer screening, by age band. Pretty much everyone in both groups was eligible for cervical cancer screening.

The next graph shows how many people actually had an adequate cervical smear test, from 2017/18 to 2024/25.

In 2024/25, 32% of female people with learning disabilities had had an adequate cervical smear test, around half the percentage of female people without learning disabilities (64.9%). Over time, the percentage of female people with learning disabilities having an adequate cervical smear test increased slightly (from 30.6% in 2017/18) whereas this decreased slightly for female people without learning disabilities (from 67.2% in 2017/18). So while the gap between female people with and without learning disabilities has narrowed over time (from a 36.6% gap in 2017/18 to a 32.9% gap in 2024/25), at this rate of change equality will take 62 years to be achieved.

Colorectal cancer screening. The Health and Care of People with Learning Disabilities provides information on all people with and without learning disabilities aged 60-74 over time, from 2020/21 to 2024/25. 

In 2024/25, 55.1% of people with learning disabilities aged 60-74 had had colorectal cancer screening, compared to 69.7% of other people in the same age range. This has increased faster for people with learning disabilities (from 43.3% of people in 2020/21) than for other people (from 62.7% of people in 2020/21). At these rates of change, equality will be reached in 12 years.

Cancer diagnosis

The graph below shows rates of diagnosed cancer recorded for people with and without learning disabilities over time, from 2017/18 to 2024/25. Overall, in 2024/25 people with learning disabilities were less likely to have a diagnosis of cancer than other people (2.1% vs 3.5%), a figure which has increased at a slower rate for people with learning disabilities (from 1.7% in 2017/18) than for people without learning disabilities (from 2.7% in 2017/18). 

Amongst people with learning disabilities, girls/women are more likely to be diagnosed with cancer (2.7% in 2024/25) than boys/men (1.8% in 2024/25), a larger gap than amongst other people (girls/women 3.8% in 2024/25; boys/men 3.3%).

In terms of age bands, although rates are relatively low up to age 44 they are marginally higher for people with learning disabilities than for other people - as rates increase sharply from the age of 45 onwards they become much higher for people without learning disabilities compared to people with learning disabilities, particularly for men.

Heart failure. In contrast to the figures above for coronary heart disease, in 2024/25 people with learning disabilities were more likely to have a diagnosis of heart failure than other people (1.3% vs 1.1%), a figure which has slowly increased for people with learning disabilities (from 1% in 2017/18) and people without learning disabilities (from 0.9% in 2017/18). 

Amongst people with learning disabilities, girls/women are slightly more likely to be diagnosed with heart failure (1.3% in 2024/25) than boys/men (1.2% in 2024/25), a different pattern than amongst other people (girls/women 0.9% in 2024/25; boys/men 1.3%).

In terms of age bands, rates of heart failure are consistently higher for people with learning disabilities than other people at all ages up to the age of 74.

Chronic Obstructive Pulmonary Disease (COPD). Overall, in 2024/25 people with learning disabilities were less likely to have a diagnosis of COPD than other people (1.3% vs 1.8%), a figure which has slowly increased for people with learning disabilities (from 1.1% in 2017/18) but stayed static for people without learning disabilities (1.8% in 2017/18). 

Amongst people with learning disabilities, in 2024/25 girls/women were slightly more likely to be diagnosed with COPD (1.4%) than boys/men (1.2%), although over time this figure has increased for girls/women with learning disabilities (from 1% in 2017/18) but stayed static for boys/men with learning disabilities (1.2% in 2017/18). Amongst other people, figures are similar for girls/women (1.8% in 2024/25) and boys/men (1.9%).

In terms of age bands, rates of diagnosed COPD are consistently higher for people with learning disabilities than other people at all ages up to the age of 64 - beyond this COPD is more commonly diagnosed amongst people without learning disabilities.

Stroke or transient ischaemic attack (TIA). Overall, in 2024/25 people with learning disabilities were slightly more likely to have a diagnosis of stroke or TIA than other people (1.8% vs 1.7%), a figure which has slowly increased for people with learning disabilities (from 1.6% in 2017/18) and people without learning disabilities (1.6% in 2017/18). 

Amongst people with learning disabilities, in 2024/25 girls/women were more likely to be diagnosed with stroke or TIA (2%) than boys/men (1.6%) - over time this figure has increased for girls/women with learning disabilities (from 1.8% in 2017/18) but stayed static for boys/men with learning disabilities (1.6% in 2017/18). Amongst other people, figures for girls/women (1.6% in 2024/25) are slightly lower than for boys/men (1.8%).

In terms of age bands, rates of diagnosed stroke or TIA are consistently higher for people with learning disabilities than other people at all ages up to the age of 74.

Conclusions

Rates of cancer screening across all screening programmes are much lower for people with learning disabilities than for people without learning disabilities.

With a lot of hard work, in some cancer screening programmes the rate of cancer screening for people with learning disabilities is slowly increasing, but the gap is still very large and won't be closed for many years to come, if at all.

At younger ages (up to age 44), cancer diagnoses are rare, but more common for people with learning disabilities compared to other people.

At older ages (from 45 onwards), when cancer rates start to increase sharply, cancer diagnoses are less common for people with learning disabilities compared to other people.

We now know quite a lot internationally about cancer and people with learning disabilities - the ways that cancer screening programmes don't work well for people with learning disabilities, potential signs of cancer not being noticed early by health professionals, resulting in more emergency referrals to cancer services when people's cancers are already well advanced, and the absence or inadequacy of cancer treatments being provided for people with learning disabilities. Are apparently lower rates of cancer amongst people with learning disabilities because cancers simply aren't noticed by health professionals, and are people with learning disabilities simply less likely to live long enough to develop the most common types of cancer?

As is wearily familiar to those of you wading through this series of blogposts, we know all this, and yet...