Understanding the experiences of people at higher risk of breast cancer

What’s the project about? 

We want to improve the experiences of people who are at higher risk of breast cancer and ensure they’re able to access the services they need.

Our policy and influencing team wants to understand the experiences of people with family history of breast cancer, or who are at higher risk. This will help us to ensure that your priorities and needs guide our work in this area.

We’re holding focus groups for you to share your experiences and support our policy and influencing work.  

Who’s organising it?

Name of project lead: Eleanor Mellor

Job title: Senior Policy Officer

Organisation: Breast Cancer Now

Email address:  policy@breastcancernow.org

Who can take part? 

We would like to hear from people from across the UK who:  

• Were informed that they were at increased risk before their diagnosis  
• Or have never received a diagnosis but are at increased risk

And  

• Received a referral to family history services, clinical genetics or genomics and been categorised as at increased risk, within the last 10 years
• Or experienced family history services or clinical genetics via cascade testing, within the last 10 years 

Why do you want me to be involved?  

By taking part and sharing your experiences, you’ll help us to develop policy and influencing asks aimed at improving services for people at increased risk of cancer.

What will you ask me to do? 

We’d like you to sign up to attend 1 of 2 focus groups.  

The groups will take place on:

• Wednesday 16th April at 12pm and 5.30pm
• Wednesday 23rd April at 08.30am and 7pm 

The group will be held virtually on Microsoft teams and run for 2 hours.

During the focus groups, you’ll be able to talk about your experiences of:

• Being referred into family history services, clinical genetics or genomics  
• Undergoing risk assessments and/or genetic testing
• Accessing risk reducing options (such as surgery or chemoprevention) and enhanced screening

All sessions will be audio visually recorded. We might use quotes or key themes in policy work such as reports, blogs or on social media, but we will make these quotes anonymous.

How do I get involved? 

If you’re interested, please fill in our expression of interest form. The team will be in touch to let you know whether you’ve been selected to take part.  

If you have any questions about the focus groups, you can contact the team at policy@breastcancernow.org. 

To ensure that we can hear the views of as many people as possible, we will have certain eligibility criteria for each group discussion. We’ll use the information you provide in the expression of interest form to help us select participants for the group. We’re sorry that we won’t be able to accept all expressions of interest due to the limited spaces.

When’s the deadline? 

9 April 2025