As Voices, we’re the constructive friend giving feedback to make a real difference

Tell us a bit about yourself

I live up in the northeast between Durham and Sunderland in a lovely little old mining village which is really quaint. I've been a member of the Voices community for a few years.

Tell us a bit about your breast cancer experience

Mine was a difficult experience, a totally unexpected diagnosis. It took several months to both be fully investigated and to formulate a treatment plan for.

I was diagnosed with highly aggressive ductal carcinoma in situ (DCIS) in my right breast in March 2018. My active treatment ended in November 2018 with a single mastectomy. 

I then underwent a yearly mammogram until 2023, when I was finally considered to be cancer free.

I felt fully supported throughout the process by my breast cancer team and family and friends. This was so vital during that emotionally charged time, immediately following the initial diagnosis. 

Why did you get involved with Breast Cancer Voices? 

I wanted to be able to give something back through sharing my own cancer experience. 

I believe that empathy and understanding are 2 things that can really help to reduce the trauma of receiving a cancer diagnosis. Especially if it’s from someone who has first-hand knowledge of its devasting impact. 

Being a Voice is the perfect way for me to offer this vital support and advice to someone when they need it most.

What Voices opportunities have you taken part in? 

I’ve taken part in a few different opportunities so far, including helping to develop the Standards of Care of Older People. Often, care for older people can be a checklist exercise that looks good on paper but doesn’t contain any real substance. I really enjoyed being involved in the project and felt like I’d made a valuable difference. 

Breast Cancer Voices gives me the chance to speak about my passion for supporting people who have or are currently going through breast cancer. That's what drives me.

What is the Standards of Care for Older People workshop, and why did you choose to get involved? 

The Standards of Care outlines what older people should expect during and after their treatment. Breast Cancer Now developed the standards with us and healthcare professionals. It’s for people over 70, but chronological age isn’t the same as physical age. So the standards apply to anyone who feels they need this level of care. 

Although I'm under 70, I've got lots of empathy with older people. And I felt it was crucial that we were included in something as important as this. 

I wanted to make sure that these standards related to an older person. The only way really you can try to make that happen is by talking to those people and listening to their answers.

What was it like being part of that focus group?

I found it really interesting. Focus groups bring out lots of diverse opinions. Hearing different views is important because it gives a true picture of what people are feeling. 

There was quite a lot of discussion. People agreed with certain ideas, people disagreed with others, but it was a very open place. It felt like a comfortable space to express your ideas, whether you agreed with something or not. 

I think that was important to give a different perspective that healthcare staff hadn't necessarily thought of themselves. And that can only sometimes come from someone with lived experience. 

We discussed different parts of the standards. We talked about which support networks nurses should signpost people to. And which other support services are helpful that were missing. 

People need to be able to understand the information in the standards quickly without feeling that it’s an extra burden. So we spoke about how the standards should be structured in a way that’s easier to understand. 

How did you feel when you received the final standards and could see where your input was? 

It felt like a huge accomplishment. I felt as if I could see the staff at Breast Cancer Now thinking about what was said at the focus group. I could tell they were really trying to take our feedback and use it to make changes in the standards. That came through quite clearly for me. 

I feel as though I've been part of something really valuable.

What would you say to someone thinking about becoming a Voice? 

It’s so important. We can give staff our own personal heartfelt, valuable feedback. We can make sure that projects and research focus on what's actually important. Not just what staff assume is important. 

We've lived through it. We know what that's like and we'll be truthful about doing that. We might not always agree, or we might confirm that they’re going in the right direction. But we can be that constructive friend, who gives the criticism and the feedback.