Improving support for women at increased risk of breast cancer- one year on

Since then, we have used the insights gathered to write our report Family history, genetics and breast cancer briefing: Improving support for women at increased risk. Read on to hear what our report found, what we’re calling for and what we’ve been doing to take this work forward.

Around 1 in 7 women in the UK will be diagnosed with breast cancer in their lifetime. However, some women due to their genetics or family history are much more likely to get breast cancer at some point in their life.

These women can be classed as at moderate, high or very-high risk of breast cancer.

For these women it’s important that they’re aware of their risk level, and have access to the right support and treatment to manage and potentially reduce their risk.

We used insights gathered through a Freedom of Information request (FOI), which was sent to NHS trusts across England. This requested data on the provision of services, such as enhanced screening, access to risk-reducing treatments such as drugs and preventative mastectomy and holistic support for women at increased risk.

We used this information to map what support is available for women across England and highlight regional variation and inequality in these services.

We also held focus groups and interviews with women at increased risk to understand their experience of risk-assessment and support to reduce their risk.

Across the data analysis and through talking to women we found:

• Women reported difficulty getting a referral for risk assessment

• There are long waits for genetic testing and appointments in familial risk services

• There is significant variation in the support offered to women, based solely on where they live

• Access to enhanced screening is inconsistent

• The support offered is not consistently meeting women’s needs

Claire has a family history of cancer. This led to her being assessed as at moderate risk and getting annual mammography.

After moving she had to undergo another risk assessment. This time, she was told she was not moderate risk and would no longer qualify for annual screening. Despite this, she was invited for a screening in her previous trust and decided to attend. At this screening she was told she had breast cancer. After her diagnosis, Claire was diagnosed with a BRCA2 gene variant.

At the end of October, we presented our work on improving services to women at increased risk to the All Party Parliamentary Group (APPG) on Breast Cancer. Clive Jones MP and Natalie Haskell CEO of CoppaFeel also presented. The meeting was attended by a wide range of people, including MP’s, women at increased risk, charities and clinicians working in increased risk and genetics services.

The meeting was a great opportunity to share our findings and discuss gaps in provision and how we might improve services for women across England. It was great to have so many engaged and passionate people attend.

The UK National Screening Committee is responsible for deciding what national screening programmes are offered and who they are offered too. Every 2 years they have an open call for patient groups, researchers and clinicians to suggest evidence based changes to screening programmes. We submitted a proposal for screening for moderate and high-risk women to be brought within the NBSP and will hear whether it has been selected for review in 2027.

We will also be responding to the National Institute for Clinical Excellence’s (NICE) consultation to update the Family history guidelines. Our response will highlight how important it is that the guidelines find women at increased risk of breast cancer and make sure they can access the support and care needed.