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Thu 22 Feb 2024

Being a member of the All-Wales Cancer Community

Kate was diagnosed with breast cancer in June 2022, and we’re really happy for her that her treatment is now complete.

Kate joined the All-Wales Cancer Community when it was first established in late 2022 when she saw an advert on social media. Although she had experienced lots of examples of good care throughout her cancer journey there were also times when she was waiting too long for treatments to start or for results which she found challenging. She wanted to use her personal experiences to make positive changes for people affected by cancer in Wales.

When Kate receives her monthly opportunities email from us, she scans through to see which opportunities would be suited to her, ignoring any that are related to a different cancer type or simply don’t sound interesting. When she sees one that does interest her, she has a look to see how much time it will take up and whether she feels like she can dedicate the amount of time required, as her job can be demanding. Since joining she has taken part in a number of opportunities, from completing 5-minute surveys to becoming a steering group member.

Our Insight Lead, Maddy Young, caught up with Kate this week to ask her what she enjoys about being a member of the All-Wales Cancer Community.

Why did you join the All-Wales Cancer Community?

Wanting to make changes was the main driver, everyone’s cancer journey is so different its great to be able to share my experiences so that decision makers get the full picture.

What do you enjoy about being part of the All-Wales Cancer Community?

It’s been surprisingly cathartic, both talking about my own experiences and using them to make positive change.

Have you seen changes as a result of the opportunities you’ve taken part in?

It’s a little too early to tell at this point. I have shared my experiences with NHS organisations, Tenovus Cancer Care and other charities too, and I know that there is lots happening to make changes as a result. Taking part has also led to other voluntary opportunities which I very much enjoy.  

I made some comments as part of one opportunity and some changes are being made so I like to think that I’ve had some input!

Do you think patient voices are being taken more seriously?

I get the impression that people working in the NHS and for charities really want to hear about our experiences so that they can make changes to the care or support they provide. Until I had breast cancer, I had no idea how many different types there were, or how many different treatment plans there could be. Of all the women that I’ve met who have had breast cancer, I have not met any who had the same experiences or treatment plan as me, and I think that there is growing recognition that everyone’s experiences are unique and so everyone has something important to say.

What would you like to see done differently in cancer care?

One of the main areas I think could improve would be the information that patients are given when they receive their diagnosis. I was given some broad information about my cancer and treatment, but nothing specific or detailed, nor any information about where I could get financial or emotional support, which meant I had to find a lot out myself. I know that a lot of people don’t want too much information, but for those of us who do, I felt that there wasn’t enough given.

Would you recommend friends with experience of cancer to join the All-Wales Cancer Community?

Yes, I would, I think everyone has something valuable to add, and they can join in as much or as little as they want to, depending on what interests them, and their availability.

Thank you so much Kate, we really appreciate you being such an active member of the All-Wales Cancer Community as well as giving up your time to tell us about your experiences.

If you are interested in joining the All-Wales Cancer Community like Kate, please sign up here.

If you or someone you love has been affected by cancer, our free Support Line is there for you. Just call 0808 808 1010