APPG: Family History of Breast Cancer

Last week, as part of its ongoing inquiry into breast screening, the All-Party Parliamentary Group on Breast Cancer hosted a meeting to discuss the role of family history in screening. It was wonderful to have so many patients and health professionals attend the APPG’s first in-person meeting since the pandemic.

Research suggests that 5-6% of women are at increased risk of breast cancer due to family history. These women should be offered screening earlier and more frequently. However, a lack of national oversight and limited local funding mean that too often we're missing the opportunity to diagnose breast cancer in at-risk women at the earliest opportunity.

This inquiry session explored the challenges and opportunities in supporting women with a family history of breast cancer, and how we can ensure these women can access the screening that is right for them.

The speakers

One of Breast Cancer Now’s amazing volunteers, Janet, opened the session by sharing her own experience navigating the NHS services available to her due to a history of cancer in her immediate family. Janet was grateful for the care and support she received, but she also talked about her difficulties accessing screening and instances where she was given confusing or conflicting information. Janet told attendees that she believes breast screening saved her life, but she had to fight for the support that should have been proactively offered to her.

Suzannah Fitzgerald, a Breast Cancer Family History Lead in Kent, spoke about the huge pressures on family history services in her area, in the absence of any dedicated funding or staffing. Resource limitations are made worse by the lack of routine patient data collection or monitoring, and inadequate support for GPs making referrals into the service. These challenges mean that women at increased risk are not well served by their current system.   

In contrast, Kirtida Patel, a Breast Family History Specialist Practitioner in Leeds, provided an example of what family history services can look like when they are properly resourced. Kirtida explained how real investment has made it possible for her team to offer a high standard of care and support to at-risk women, but also echoed Suzannah’s concerns about workforce shortages and the need to keep pace with the growing demand for family history support.  

We’re extremely grateful to all three of our speakers, and indeed all the meeting attendees, for taking the time to offer their thoughtful and vital contributions.

The Big Picture

What became clear throughout the meeting was the extreme regional variation that exists in the screening offered to both moderate and high-risk women who are not managed through the national breast screening programme. This post code lottery leads to some women being let down in areas where services are underfunded and unable to offer screening at the same standard as the national programme. This fundamental problem must be addressed to ensure all at-risk women have access to the screening and support they need, regardless of where they live.  

What Happens Next?

This was the second of three meetings in the APPG’s informal inquiry into breast screening. The first meeting, back in March, covered issues around the poor uptake and health inequalities seen in the breast screening programme. The next will be focused on the future of breast screening and the role of innovation in the national programme.

Our sincere hope is that we, as Breast Cancer Now, can work with the APPG in using the inquiry’s findings to propose changes that can help deliver the breast screening programme women in this country deserve.

For more information, minutes to November’s APPG meeting can be found here.