Saturday 11 October 2025 marks three years since we officially launched our All-Wales Cancer Community in the Senedd, the home of Welsh Government.
We had ambitious plans that our community would help to give those who have been affected by cancer a voice, and a way to have their say on cancer care, services, research and policy here in Wales. We wanted to make sure that those voices were heard by the right people to make positive change.
The All-Wales Cancer Community (AWCC) Three Years In
Membership: We’re really proud that our Community stands at 269 members and includes people from all health boards in Wales and from across all deciles of the Welsh Index of Multiple Deprivation (WIMD).
There’s still work to be done in order for our AWCC membership to be truly representative of Wales. Diversity amongst our membership is one of our focuses going forwards – both in terms of ethnicity and gender.
Impact: We’re really pleased to report that our community is having an impact – and we love hearing outcomes of the opportunities we’ve shared. The following represent just three ways that our members have influenced over our three years:
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In 2024 members helped the National Strategic Clinical Network for Cancer’s project to understand how cancer affects the feelings and emotions of patients, their families and/or carers, and what support was accessed or needed at that time. They were asked to review, provide feedback, and test out a survey to ensure that it was clear, comprehensive and truly reflective of the experiences of those affected by cancer before it was officially launched.
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In 2023 input from our members helped inform a guide to help older people and their families better understand their rights when accessing their GP practice, and the kinds of services and support that should be available. The guide was put together by the Older People’s Commissioner for Wales and has been distributed to every GP practice in Wales.
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Members with rectal cancer experience answered a questionnaire which has led to Health Technology Wales recommending that patients who are suitable for surgery that may result in a temporary or permanent stoma now have the option of electing to have CXB treatment to preserve their bowel. We had the following feedback: “The testimonies from patients on the impacts of a stoma from the questionnaire we conducted with you really helped the committee to understand just how much of an effect it can have on a persons life.”
Some of our members have been brave enough to share their experiences by writing or being involved in articles for our website. Click to view Mike’s, Mal’s and Kate’s articles.
A Little Reflection
We’ve seen lots of changes over the three years – and there will be many more to come. We wanted to take a moment to focus on a couple of them.
Changing attitudes to Patient and Public Involvement (PPI):
Researchers and politicians have become more engaged and committed to hearing from people with real, lived experience.
Members of our Community were amongst the 160 voices that informed the Cancer Improvement Plan for NHS Wales in 2022, setting the direction of cancer service delivery for the next three years.
The 2023 Gynaecological Cancers Inquiry by the Senedd Health and Social Care Committee was ground-breaking. For the first time in the Committee’s history, real women’s voices were shared via video evidence during an inquiry. The Committee’s Chair, Russell George MS had this to say on the impact of the evidence:
