Introduction
What I’d Like to Change: accessible cancer care and screening for disabled and neurodivergent people. This research was led by Rosie Tansley & Katie Munday with support from Involving People, NHS Wessex, Cancer Alliance, and Macmillan Cancer Support.
Involving People are committed to putting people at the centre of the services they use. Cancer care is not equal-disabled and neurodivergent people face unique barriers that too often lead to late diagnoses, inadequate treatment, and overlooked needs. What I Would Like to Change brings together lived experience, creativity, and research to uncover these challenges and co-design practical solutions. By centring the voices of those most affected, this community research project moves us closer to truly inclusive cancer care for everyone.
Objective and aims
To identify and co-create solutions to the barriers disabled and neurodivergent people face in accessing equitable cancer care, using participatory and arts-based research methods.
Amplify the voices of disabled and neurodivergent people to expose the barriers they face in cancer care. By working collaboratively through creative, participatory action research, it seeks to co-design solutions that make services more accessible, inclusive, and responsive to everyone’s needs.
Method
The project used arts-based workshops with four community groups, creating accessible spaces for participants to share experiences and generate Ideas for change. Guided by a community-based participatory action research approach, these methods ensured that disabled and neurodivergent people were equal partners in shaping solutions for inclusive cancer care.
“Scars heal, but the mental ones don’t.”
Results
Our research found that disabled and neurodivergent people face persistent barriers when accessing cancer services, including inaccessible information, poor communication, physical inaccessibility of healthcare settings, and a lack of emotional support. Participants emphasised the need for clearer, simpler information, personalised and holistic care, and greater empathy from healthcare professionals. Good support systems-from family, peers, and healthcare staff – were described as vital, but too often inconsistent or missing. The report highlights that embedding accessibility and empathy throughout cancer care is essential to create services that are inclusive, effective, and affirming for everyone.
“Nobody knows the best way for a service to work than the person who uses it.”
Conclusion
Throughout this project, we have amplified and will continue to amplify the voices and lived experiences of disabled and neurodivergent people. Our research shows that meaningful systemic and cultural change is urgently needed. Grounded in the experiences generously shared with us, our findings offer clear, practical solutions that healthcare providers can use to embed care that is inclusive, personalised, and accessible for all.
“If you miss us, you risk us.”
This research was funded by Macmillan Cancer Support and Wessex Cancer Alliance and led by the Involving People team at Help & Care. Find out how we can help you, and how to contact us.
This poster was shared at the Hampshire and Isle of Wight Integrated Care Partnership Research Assembly on 19th November, 2025. The alt text is shared in full in this blog. Our report (including plain language versions) can be found here.
