How Breast Cancer Voices are shaping the work of our charity

What are specialist panels?

Susanna: ‘As Breast Cancer Now’s Patient Experience Lead, it’s my job to support all my colleagues to involve Voices in their work and get the insights and views they need to make sure everything we do has lived experience at the heart.

Specialist panels are small groups of Voices who work with Breast Cancer Now colleagues on specific projects to do just that – they might be short or long term, and they could include people with very specific relevant experiences or a range of experiences and backgrounds.

Specialist panels can help formulate ideas at the beginning or test the end product, they can provide a sounding board, add insight and ideas, or help with decision-making and direction.’

Can you give me an example?

Susanna: ‘When we co-created the new Voices community, we introduced the concept of louder Voices, who would sign up to hear about more urgent or ad hoc opportunities. Louder Voices share more about themselves through our Getting to Know You survey, so we can reach out to them with specific relevant activities that fit with their interests, experiences and skills.

I recruited a specialist panel to help develop the onboarding process for new louder Voices, including co-creating the Getting to Know You survey questions and how the welcome calls would fit in.

It was really great to get their input on what they wanted out of being a louder Voice and what they would want to share in a survey or call, so we could make it as effective as possible. As a result, we’ve also now recruited Voices volunteers to do those calls which will be starting soon.’

How did you get involved, Anjli?

Anjli: ‘Although I expressed interest in being a Louder Voice, I didn’t really know what to expect other than it seemed like a great opportunity to broaden my volunteering with Breast Cancer Now.  When Susanna asked if I could take part in the onboarding project, my immediate reaction was absolutely, go for it and figure out what the role really means!  I had worked with Susanna before on the Service Pledge and knew we would be well-led.

Building a new process to onboard Louder Voices sounded interesting.  It was similar to my work and study experiences with developing and using surveys for qualitative/quantitative research plus great to also meet other Voices members early on.’

What felt like the challenges and successes to you?

Anjli: ‘I really enjoyed contributing to shaping the Getting to Know You Survey.  Hopefully we have made the data collection relevant plus easy to use in linking staff/volunteers with opportunities and getting a good participation rate.  

Having input on the plan from the ex-patient/now-volunteer perspectives and also using skills from regular life outside of cancer was very satisfying.  It was great to be involved in work where “cancer” is just a part of the whole person and not the main focus.

As a test run of specialist panels, the project did feel a bit disjointed at times and time expectation/next steps weren’t always clear although we did develop a clearer view as the process formed.  What came across clearly is that all Voices are heard and appreciated.  Group discussions were lively, fluid and participation flexible.  

I also learnt that no two projects are the same and there could be some lags in between opportunities.  For me that’s perfect as it’s a bit like being on call with no pressure to actually take part unless the ask fits with what I have going on at the time.  As volunteers we can make the choice of when/how much time to commit, which could vary by project, so it’s very easy to balance.’

And have you seen the benefits of specialist panels, Susanna?

Susanna: ‘It’s really been an incredible process seeing louder Voices take off and the way our colleagues are engaging with them on all kinds of projects.

Louder Voices specialist panels have now supported around 15 projects over the past 9 months. Some of these have been very quick requests for testing and feedback of surveys we’re sending out, and others have involved photoshoots, workshops, committee meetings, providing quotes – a real range of ways that Voices can bring their experiences and ideas into the heart of our work.

I think our colleagues are really growing in their understanding of how Voices can add value in different ways, and the vital importance of getting their input early!’

So what’s next for you both?

Susanna: ‘I really want to see more louder Voices completing the Getting to Know You survey so we can ensure we contact them about relevant panels or similar opportunities that could be relevant to them – there’s so much experience and expertise within the community that we could tap into.

Secondly, I want to make sure that those who’ve taken the time to complete it are being contacted with ways to get involved – part of that is about working more closely with my colleagues to ensure we’re creating new and more varied projects and opportunities.’

Anjli: ‘I love that so far each project has had a creative aspect and staff are wholly engaged plus super friendly.  Even when challenging myself with presenting to BCN staff (which I wouldn’t volunteer for normally, another thing Susanna asked me to do!) everyone was very supportive.  I’m always happy to hear about new opportunities be that through the bulletins, BCN website or staff reaching out on Susanna’s recommendations to match volunteers as best as possible with information collected via the Getting to Know You Survey.  

Currently I’m a member of the Disparities Funding Committee as a patient representative.  It’s a little daunting meeting a group of highly skilled medical professionals and being the layperson although I am confident the patient perspective will be a favourable contribution as the application process gets underway.  
I really enjoy that I can make a difference using varied experiences and collaborate with other people including other volunteers, charity staff and medical teams.  It’s very fulfilling to help on a cause you are passionate about and have some fun along the way.’

If you’re already a Louder Voice but don’t think you’ve completed our Getting to Know You survey – or if you’d like to find out more about being a Louder Voice – just get in touch with the Voices team at voices@breastcancernow.org. We also share some opportunities to get involved in specialist panel projects in our Brest Cancer Voices bulletins, so you won’t miss out if you prefer just to receive our monthly communications.