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Reflecting on the work of the LeDeR team during Learning Disability Week

Throughout this Learning Disability Week (16 – 22 June 2025) the King’s LeDeR (Learning from lives and deaths – People with a learning disability and autistic people) team have been sharing some additional insights and deep dives into the findings of their work.

One of the key aspects of LeDeR is identifying and uncovering health inequalities affecting people with a learning disability. Using data from the 2022 LeDeR report (published in 2023), we have been sharing some of our deep dives along with looks at additional research and innovation.

Opportunities for early detection in bowel cancer

People with a learning disability often have health conditions that are known risk factors for bowel cancer yet they are less likely to attend screening than people without a learning disability. LeDeR data show that 15% of bowel cancer deaths in people with a learning disability occur under age 50. However, current screening for bowel cancer starts at 54. We therefore have recommended starting screening at 40 for people with learning disabilities to improve early detection and diagnosis. You can read more about this in our deep dive into bowel cancer here.

Understanding and managing constipation

In a sample of people who had a LeDeR review, over 50% were taking two or more medications that are commonly or very commonly associated with constipation as a side effect.

When we looked into this, we found that 13% of people recorded as having constipation died of a bowel obstruction or perforation. Many people with a learning disability have limited understanding of normal bowel function or have not received appropriate education on normal bowel habits - more details on this can be found here. Better understanding and management of constipation is needed to avoid it going unrecognised and untreated.

You can read more of our deep dive into constipation here.

The benefits of proactive monitoring and early recognition of physical illness

In 2024 we published a deep dive into deaths due to pneumonia in people with a learning disability. Our research found that deaths due to pneumonia are unnecessarily high. People with certain characteristics, such as poor mobility, swallowing difficulties, heart conditions or Down syndrome, are at particular risk.

One of the key things we found was that appropriate training and knowledge for carers in the signs and symptoms of pneumonia is essential to ensure any deterioration in their physical health is identified quickly. This involves increasing overall awareness of the risk factors for pneumonia and reviewing vaccination programmes to ensure optimal coverage. Proactively monitoring these vulnerable groups is key, rather than only responding when the person has become systemically unwell.

More detail can be found in their deep dive into pneumonia found here.

Staying Alive and Well Group Logo by Darren Barnes
As part of LeDeR work, we have worked with the Staying Alive and Well Group. This logo for the group was designed by Darren Barnes

MediChec: what is it and how are the LeDeR team involved?

Beyond our deep dives into specific topics, the team have been involved in the update to MediChec. Developed by NIHR Maudsley Biomedical Research Centre, MediChec helps power people with learning disabilities to manage their medications safely.

MediChec empowers people with learning disability to manage medications safely. The app flags medications with high risk of adverse effects (e.g., constipation, anticholinergic burden), helping clinicians review medication regimens more effectively and reducing the risk of preventable complications.

You can try MediChec here

Want to know more about the King's LeDeR team and their work?

The King’s LeDeR team continue to use LeDeR data to provide evidence and deliver more insights into the health and healthcare of people with a learning disabilities. You can find out more about their work here.

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