Case study: Learning disability cancer screening project
Specialist support for vital checks
The story so far
Reducing health inequalities is one of Humber and North Yorkshire Cancer Alliance's key objectives. So, when its first ever Cancer Innovation Grants were launched in April 2024, the judges were won over by a joint bid between Humber Teaching NHS Foundation Trust, NHS Humber and North Yorkshire Integrated Care Board (ICB) and the Bridlington Primary Care Network (PCN).
The main objective of the bid was to enable Humber Teaching NHS Foundation Trust to provide specialist support for people with learning disabilities, to improve access and engagement with crucial cancer screening programmes.
Patients with learning disabilities are less likely to attend or take up appointments for vital checks, putting them at greater risk of poor health and negative outcomes. As such, Bridlington and Goole, both in the East Riding of Yorkshire, were identified as areas within the Trust’s geography that suffer from deprivation. Parts of Bridlington rank 45th out of 32,844 areas in England on the Index of Multiple Deprivation, while Goole has a significantly lower level of home ownership than the national average, which is indicative of economic deprivation.
Initially, the grant application focused on improving screening rates to support earlier diagnosis of breast, bowel and cervical cancer. However, it was quickly recognised that there are barriers for people with a learning disability accessing screening.
It was hoped that, with grant funding, this project would mean that Humber Teaching NHS Foundation Trust could:
- employ specialist learning disability nurses
- co-produce, with Experts by Experience, a screening video for breast, cervical and bowel
- increase cancer screening rates
- share the experience of individuals
- understand what people with learning disabilities need during their screening appointments
- ensure a process is in place to ensure decisions around screening are underpinned by legal frameworks
- identify Easy Read information and any missing elements
- provide more support for people with learning disabilities in preparing for and attending screening appointments
- educate administrative, clerical and clinical staff about the needs of patients with learning disabilities, for example information on reasonable adjustments including physical and emotional wellbeing
In August 2024, the project was announced as one of the winners of a Cancer Alliance Cancer Innovation Grant. At the time, Humber and North Yorkshire ICB said: “This grant will allow us to take a significant step forward in addressing some of the health inequalities faced by people with learning disabilities in accessing cancer screening services. By introducing a dedicated Learning Disabilities Nurse and creating paid roles for experts with lived experience, we can ensure that support is specialist and meets the needs of the communities we serve.”
Within a short space of time, the Cancer Innovation Grant was bearing fruit. By May 2025, screening numbers for bowel, breast and cervical cancers had all increased. Specialist Learning Disability Nurses have been appointed, including Lauren Lawler and Sophie Riley from Humber Teaching NHS Foundation Trust.
Lauren said: "I feel privileged to have been appointed as a specialist nurse for the project. I have been involved since November, and we have identified many barriers and health inequalities that our patients with a learning disability are facing when accessing cancer screening.
"Working closely with our Experts by Experience, PCN and ICB we have already been able to make recommendations and suggest reasonable adjustments.
"Education is being rolled out throughout services and provisions, not only being led by ourselves but with support of our Experts by Experience who have proven to be invaluable.
"A video has been commissioned and will be rolled out within services, and we are now exploring next steps around capacity and best interest. The project will continue to support patients within our community for years to come and we are hopeful national changes will be made for our patients in the future to access these important tests."
Sophie said: "It has been a privilege to support and work with individuals with learning disabilities both in the community and on the project as Experts by Experience. They have enabled us to identify where the barriers are for each of the cancer screening programmes. Also, having their personal experiences listened to and then used to educate professionals on how to best support and overcome the barriers they face has been empowering for them all. The small act of listening can make a huge difference to others and may even save lives."
The nurses are working closely with the breast screening department at Castle Hill Hospital in Cottingham, East Riding of Yorkshire, and take part in monthly meetings with the CHCP primary care wellbeing team within Goole PCN.
There is plenty more to come too, including:
- Information packs will be handed out at visits to care homes, where Cancer Champions training will also be rolled out.
- Easy Read leaflets have been developed, plus questionnaires for people with learning disabilities and their families and carers.
- Five Experts by Experience, employed by Humber Teaching NHS Foundation Trust, have lived experience of one of the three cancer screenings. They have worked alongside the learning disability nurses to share their lived experience to identify the barriers that adults with a learning disability face
Jessica Mortimer, Advanced Clinical Practitioner, said: "The project has demonstrated the power and importance of co-production in ensuring we are working to reduce inequalities for individuals with a learning disability.
"A huge amount of work has already been undertaken by the Experts by Experience and nurses to prompt screening, understand barriers people face and in developing information, alongside our PCN and ICB colleagues. They have also begun to develop key recommendations to be taken forward by primary and secondary health services focused on how reasonable adjustments can be put into place to enable screening, and importantly, lifelong screening.
"I am really proud of what everyone involved in the project has achieved so far and will continue to do as we move forward."
Rachel Iveson, Programme Lead for Cancer Innovation, Humber and North Yorkshire Cancer Alliance said "We are so proud to have worked with the team and funded this project to increase screening for people with a learning disability. This fits with our aim to increase diagnosis of cancer at an earlier stage and reduce health inequalities across our region."
