Improving Cancer Screening Uptake for People with Learning Disabilities Through Co‑Production

People with learning disabilities can face a range of barriers when it comes to cancer screening. These can include communication difficulties, lower levels of health literacy and limited understanding of the benefits of screening. As a result, uptake can be lower, increasing the risk that cancer is not identified at an early stage. 

To address this, the Trust’s Community Team for Learning Disabilities (CTLD) has worked in partnership with five Experts by Experience (EbEs). These are people with lived experience of learning disabilities, who the CTLD team have worked with to co-design and deliver improvements to screening pathways. By working together as equal partners, they have helped shape services, so they better meet the needs of the local community. 

Learning disability nurses have also worked closely with GP practices and practice nurses to identify individuals who are eligible for screening and support them to attend. This has included promoting screening at community events, attending advocacy groups to explain what happens during appointments, demonstrating equipment to reduce anxiety and working with families and carers where support with decision making is needed. 

The Experts by Experience involved in the project have highlighted the positive impact of being part of the work. One participant, Dawn, explained, “It’s a good opportunity to be part of a group. I want to be able to help and look after other people. I like to listen to people. I am open and honest and happy to give constructive feedback.” 

Another, Graham, shared his experience of supporting cancer screening, saying, “I want to be involved with the project. I do my bowel screening and I think the screenings are important. I like to help others and I have previously supported health professionals.” 

A third Expert by Experience, Anna, reflected on the importance of advocacy, adding, “I want to try a new opportunity. It’s important for people with a learning disability to look after their health. I am good at talking to people and listening. I am open and honest and happy to share my own experiences. I am a good advocate for people with a learning disability as I understand the challenges they face.” 

A key part of the project has been the development of easy read resources for breast, bowel, cervical and lung cancer screening. These materials, along with videos, have been co-produced to ensure they are clear, accessible and easy to understand. 

This approach has led to a significant improvement in screening uptake which has led to patients reporting that they feel more comfortable attending appointments. This can be evidenced in the data, as since the project began, the number of people attending screening has increased across all programmes, with breast screening rising from 0 to 27, bowel screening from 7 to 55, and cervical screening from 2 to 26. 

There has also been key learning along the way, as the project has reinforced the importance of informed choice, recognising that people with capacity have the right to decide whether to attend screening, while ensuring they are supported with the information they need to make that decision. Also, a learning outcome identified was the need for ongoing training and awareness to ensure all professionals use appropriate language and inclusive approaches. The involvement of Experts by Experience has been key to the project’s success, and there is an opportunity to build on this further to reduce health inequalities.