Children and young people with cancer often need X-rays, scans and other investigations throughout diagnosis, treatment and follow-up care. For those who also have learning disabilities, autism or additional communication needs, these experiences can be particularly challenging.
In 2023, CCLG: The Children & Young People's Cancer Association was invited to lead a national quality improvement project as part of the NHS England Cancer Experience of Care Improvement Collaborative. Because the number of eligible patients within any individual hospital is very small, we developed an innovative UK-wide collaborative approach involving cancer professionals, learning disability and autism specialists, radiographers, researchers, NHS partners and families with lived experience.
What families told us
Working closely with lived experience partners, we collected and analysed feedback from children, young people and families across cancer services. Families consistently described challenges including:
- uncertainty about what would happen
- communication difficulties
- waiting and delays
- sensory challenges
- unfamiliar environments
- lack of preparation
- needing to repeatedly explain individual needs to different teams.
The most frequently reported challenges related to waiting, uncertainty, unfamiliar environments, communication and sensory triggers.
We also learned that positive experiences were far more likely when healthcare teams took time to understand individual needs, communicate clearly and make reasonable adjustments.
Our project journey
Listen
We listened to families, lived experience partners and professionals to understand the challenges faced by children and young people with cancer and learning disabilities and/or autism.
Learn
We developed a national survey combining experience scoring and empathy mapping to gather both quantitative and qualitative data.
Understand
Analysis identified common themes around communication, preparation, sensory needs, reasonable adjustments and individualised assessment.
Co-produce
Families, healthcare professionals, radiographers, learning disability specialists and autism specialists worked together to develop solutions.
Create
The project developed "This is me! When I visit radiology", a practical communication tool designed to help children, young people and families share information that matters to them.
Share and evaluate
The resources are now being made available nationally through CCLG networks, alongside a 12-month feedback programme to evaluate their impact in real-world use.
What is "This is me! When I visit radiology"?
"This is me! When I visit radiology" is a simple communication tool that helps children, young people and families tell healthcare teams:
- how they prefer to communicate
- what causes distress or anxiety
- what reasonable adjustments help
- mobility or access needs
- what helps when they feel overwhelmed
- what is particularly important on the day.
The resource is available in:
- a standard text version
- a Widgit-supported version
- an accompanying user guide for families and healthcare professionals.
Why this matters
One of the strongest findings from the project was that good experiences were not linked to a particular hospital, age group or service model (e.g. PTC or POSCU, Children’s Hospital or all ages hospital). Instead, they were linked to whether staff understood the individual child or young person's needs and acted on that information.
Parents frequently described acting as advocates, interpreters, planners and coordinators to help their child navigate investigations and procedures. The "This is me!" tool was designed to make it easier for important information to be shared consistently between families and healthcare teams.
Help us learn
This project does not end with publication of the resource.
We want to understand whether the tool makes a difference in practice.
If you use "This is me! When I visit radiology", please complete our feedback survey and tell us about your experience.
Feedback from children, young people, families and healthcare professionals will help us evaluate the resource and guide future developments.
Evaluation period: 2026-2027
Further information
A detailed report describing the project methodology, findings, co-production approach and learning from the improvement journey will be published here once available.
In the meantime, you can find the downloadable resources on the main 'This is me' page.