Meet your new Voices community!

The co-creation of Breast Cancer Voices

Breast Cancer Now and Breast Cancer Care united in 2019 to form one charity for everyone affected by breast cancer. Both charities had networks of people who had signed up to hear about the ways they might be able to use their own experiences of breast cancer to help shape our work and ultimately make an impact in the world of breast cancer.

We wanted to bring together these two amazing networks of people and so we kicked off a project to do just that, and in September 2021, we launched our new Breast Cancer Voices created together with you through focus groups, a survey and our co-creation workshop.

Who we are

We’re excited to let you know that our community is now made up of 712 Voices, 389 of whom have signed up to have a louder voice and hear from us more often with more urgent requests or personal approaches.

Experience of breast cancer: 
We have a good representation across primary and secondary diagnoses, but we would like to increase the number with family history and those who have been informal carers.

Age: 
We have a fairly good spread of ages, although much fewer over 70 compared with the general breast cancer population (10% of Voices are over 70, while 35% of the breast cancer population were diagnosed age 70+). The louder voices tend to be younger, with 40% of this group being 50 or under.

Ethnicity: 
We have lower representation amongst Asian people, compared with the general breast cancer population in England (although our stats are for all four nations). We’re well represented across other ethnicities; however, we’d like to hear from more people across different ethnicities so that their voices don’t get lost, for example in larger surveys.

Gender: 
While 1% of our community identify as male (comparable to the general breast cancer population), only three of these men have had a breast cancer diagnosis themselves. This is an area we’ve been working on and we’re continuing to build strong relationships with men from the Men’s VMU group.

Region/country: 
We’re well represented across the three devolved nations in comparison to the general breast cancer population, and in most areas of the UK. There’s an over-representation in Greater London among louder voices. We’d also like to increase our membership across the devolved nations to ensure we don’t miss their voices.

Our louder Voices

117 louder voices have now completed our “getting to know you survey” and 59 of these have opted in for a follow-up welcome phone call. We’re in the process of interviewing new volunteers who will help call these members and talk to them about key interests and how we can best involve them.

We’ve already used the information in the survey to identify people for several roles, and have undertaken two pilot specialist panels, including our Guest Voices project and Louder Voices project, which we’ll be telling you more about in a future update.

We couldn't do it without you

It’s amazing to work with such a diverse, passionate and dedicated group of people, and we’re excited to collaborate on more projects over the coming year. We really wouldn’t be able to do our work as a charity that is driven by the voice and experience of people affected by breast cancer if it wasn’t for every single one of our members.

Any next steps?

Now that we have a clear idea of the make-up of Breast Cancer Voices, we know what we need to do next to ensure we’re hearing from everyone who might be affected and that every community has a voice and is represented.

We’re keen to hear from you how you feel it’s working and what you’d like to see us do more of (or less of!) and any ideas you have to ensure we’re reaching more people and hearing their voice and experience in our work.