The Health and Care of People with Learning Disabilities dataset: Constipation, dysphagia and GORD

  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 three health problems linked to the digestive system - chronic constipation (difficulty pooing), dysphagia (difficulty swallowing), and GORD (gastro-oesophageal reflux disease, when stomach acids leak up into the food pipe). 

This blogpost is the fifth 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.

Chronic constipation

The graph below shows the percentage of people with learning disabilities where there is evidence on GP records that people have been diagnosed with or treated for chronic constipation in the last five years, or where people have been prescribed two constipation medications in the last 12 months (separated by at least 6 months). This is a complicated definition, but it presumably has been designed to only include people where constipation is an ongoing issue for people, rather than a one-off. There is no comparative information in the dataset for people without learning disabilities.

The percentage of people with learning disabilities recognised as experiencing chronic constipation stayed fairly static from 2017/18 (13.3% of people) to 2022/23 (13.5% of people). It dropped sharply in 2023/24 (to 9.5% to people) and was at a similar level in 2024/25 (9.8% of people). Girls/women are consistently reported to be more likely to experience chronic constipation than boys/men (11.6% vs 8.6%).

In terms of age band, in 2024/25 chronic constipation was less likely to be identified/treated in younger adults with learning disabilities (age 18-44) than in younger or older age groups.

Dysphagia

The graph below shows the percentage of people with learning disabilities with a diagnosis of dysphagia over time, from 2017/18 to 2024/25 (no comparative information is available for people without learning disabilities).

The percentage of people with learning disabilities with a diagnosis of dysphagia has increased rapidly every year, from 5% of people in 2017/18 to 13.1% of people in 2024/25. Girls/women with learning disabilities are consistently more likely than boys/men with learning disabilities to have a diagnosis of dysphagia (15.2% vs 11.7% in 2024/25).

In terms of age bands, the graph below shows that people with learning disabilities are more likely to have a diagnosis of dysphagia from young adulthood upwards.

GORD

The graph below shows the percentage of people with learning disabilities diagnosed with GORD over time, from 2017/18 to 2024/25 (there is no comparative information for people without learning disabilities). The percentage of people with learning disabilities with a diagnosis of GORD has steadily increased year-on-year, from 9.8% of people in 2017/18 to 13.9% of people in 2024/25. Again, girls/women with learning disabilities are consistently more likely to be diagnosed with GORD than boys/men with learning disabilities (15.3% vs 13% in 2024/25).

In terms of age bands, there is a similar pattern to dysphagia, with lower percentages of younger adults with learning disabilities (age 18-34) being diagnosed with GORD compared to younger and older age groups.

Conclusions

GP diagnoses of dysphagia and GORD have steadily increased over time for people with learning disabilities. Substantial numbers of people with learning disabilities (dysphagia 9.8%; GORD 13.9% in 2024/25) are now recorded by GPs as experiencing these health issues. This is likely to be because GPs are becoming more aware of these issues over time, although the percentages recorded by GPs are still lower than those suggested by research.

The picture for GP diagnosis/treatment of chronic constipation is different, with the number of people with learning disabilities recorded with chronic constipation dropping in the last couple of years (to 9.8% of people in 2024/25). These are much lower levels than those suggested by research, and are not what you would hope to see given the launch of an NHS England Constipation Campaign in 2023, unless we believe that this campaign led instantly to a reduction in chronic constipation. 

It is also not clear to me why girls/women with learning disabilities are consistently more likely to be diagnosed by GPs with chronic constipation, dysphagia and GORD. This difference has also come up in previous blogposts in this series, and I'm wondering if there something about gender differences in how people are viewed by social care and health professionals that need further examination.

It also seems that for constipation and GORD (but not for dysphagia) there is a dip in the number of people diagnosed in younger adulthood - is this reflecting better general health at these ages or social care and health systems less likely to be looking out for these health issues?

I would also mention that the information we don't have here such as the level of needs of the person and ethnicity are really important, particularly for these health issues.

Constipation, dysphagia and GORD all too often come up in coroners' inquests as features in what I would see as the preventable deaths of people with learning disabilities, even if coroners don't always see it that way. Once again, we see that for some health problems there is increasing recording in health systems, but there is little evidence of these resulting in improvements that matter.