Last year, we set up a lived experience advisory group to help us explore the best ways to offer more support to more people with secondary breast cancer.
What’s the project about?
At Breast Cancer Now, we want to make sure that everyone with breast cancer gets the support they need to live well.
We wanted to hear from people living with breast cancer about how we can develop the services we offer for people living with secondary breast cancer.
It was important that we created a space where people could be open and honest with us and challenge our thinking.
So, last year, we set up an advisory group made up of people living with secondary breast cancer. The group has helped us think about the support we offer for secondary breast cancer, especially our online support.
How did Breast Cancer Voices get involved?
We held information sessions in August 2024 for people to find out more about the services that we offer and our plans for the future. After that, we invited people to sign up to join the advisory group.
The group was established in September 2024 and has 6 members. It meets online every 6 weeks, and at those meetings, it discusses different topics, such as the online services, video content, and the website.
What’s happened so far?
The group’s insight and expertise has helped us in a number of different ways. With their support, we have:
- Reviewed the online services we offer, and finalised the recommendations for how we develop them
- Agreed to set up a new type of secondary breast cancer service called the Living with Secondary Breast Cancer chat group, which is being piloted for 6 months. The pilot began in March
- Collected feedback to improve the experience of people with secondary breast cancer who are looking for support on our website
In March, 6 months after the group started, we asked the group to give us some feedback on their experience so far.
We were very happy to hear that the group feels they’re meeting the objectives and that they're happy about how it’s run. Most of the group feel they’re able to share their own views and ideas, which is very important to us.
However, some people want more meeting time to share other ideas on improving things for people living with secondary breast cancer. And some people want to hear more feedback about the impact of the group across the charity.
What are the next steps?
The advisory group is running well and has been very valuable to our work for the past 6 months. So, we’ve decided to continue to group for the rest of 2025.
In response to the feedback we've had from the group, we’ll be making some changes to how we run it, including:
- Sharing a ‘you said, we did’ after the next 3 meetings to demonstrate the impact
- Continuing to share insight from the advisory group with other staff and teams across BCN
- Inviting more guest speakers to future meetings
- Agreeing with the members and the involvement team how we can capture their other ideas
We’ll continue to meet every 6 weeks and are likely to cover the following topics:
- Working with volunteers to promote or deliver our secondary breast cancer services
- Improving the website, such as layout and language
- Designing and delivering new projects for developing our secondary breast cancer services. These come from the new Breast Cancer Now strategy
Join the Living with Secondary Breast Cancer chat group
The chat group is a new format of online group for people living with secondary breast cancer.
Each session is facilitated by a qualified counsellor, and you’ll be able chat with others by typing messages without having to turn on your camera or microphone.
We’re trying out this service until September.