Improving support for women at increased risk of breast cancer

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.

While there are other things that can also increase the risk of breast cancer, additional support is only currently recommended for women with these inherited risk factors.  

What are the issues facing these women?

Once someone is identified as being at increased risk, they should be offered support to manage their risk-level. This includes access to risk-reducing drugs, surgery and lifestyle advice to help reduce their risk. They should also get early or more frequent screening to help find breast cancer early if it does develop.

Over the last year, we’ve been collecting data from England, Scotland, Wales and Northern Ireland on the demand for and access to services for women at increased risk. And we’ve been talking to women from across the UK about their experiences using these services.

This research has uncovered a range of issues and gaps in the support and care for these women. Listening to women affected, they highlighted:

• difficulty getting a referral for risk assessment
• long waits for genetic testing and appointments in familial risk services
• the forms used to collect information of family history can be confusing and unclear
• the support offered is not consistently meeting their needs

The data we collected shows how inconsistent access to risk reducing services is across the UK. For example, screening services for moderate and high-risk women in England are run, ad hoc, through breast units with no dedicated resources in most cases and little oversight or monitoring.

This has led to a lot of variation in what screening is offered to women depending on where they live rather than their risk level. The lack of oversight also means many units do not track how many women they are managing at each level of risk.

Both the data and feedback from women highlighted that information about and access to risk-reducing drugs is limited. Many women are not being given the chance to discuss the risks and benefits of taking drugs and have no support in managing their side effects. 

What are we doing?

We recently held a meeting with specialists, clinicians, policy makers, and patient advocates to discuss the issues affecting people at increased risk in England and how to improve the services supporting them.

Informed by the discussion, we submitted our evidence and recommendations for how these services can be improved to the team at NHS England (NHSE), who are currently developing a 10-year plan for cancer care, due to be published this year.

We also worked with a coalition of cancer charities to advocate for improved data collection and support for people at increased risk of a range of cancers. We hope to see clear action in the cancer plan to improve the care provided to women at increased risk.

We also have plans to work with experts, governments and health systems in Scotland, Wales and Northern Ireland to highlight the challenges faced by women at an increased risk across the UK and to improve access to risk-assessment and care.  

Our asks for government

We’ve established 5 key asks for the UK government that we believe will improve support and services for women at increased risk of breast cancer in England.

In the upcoming cancer plan we want to see the UK government:

1. Integrate all at-risk screening into the national NHS Breast Screening Programme
2. Require formal commissioning, service planning, and resource allocation for services to support women at increased risk
3. Reform the pathway and support available for prescribing risk-reducing drugs
4. Establish a national register to capture and integrate the data of all women at increased risk
5. Enable innovation and more research on how to effectively personalise and risk-stratify breast cancer screening and prevention