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Secondary counts – our secondary breast cancer campaign win

Today, we are excited to announce that we have finally secured a long-overdue secondary breast cancer audit in England, delivering on one of the key calls from our Unsurvivors campaign.

We have secured a long-overdue secondary breast cancer audit in England and Wales, delivering on one of the key calls from our Unsurvivors campaign.

In May 2021 NHS England announced that it would commission an audit on secondary breast cancer, with the Welsh Government confirming in autumn 2021 that the NHS in Wales would also be participating. Without an audit, nobody knows how many people are currently living with secondary breast cancer in the UK. It is estimated to be around 35,000 people, but we don’t have an accurate, up-to-date figure.

That’s why, for the last 15 years, Breast Cancer Now, working alongside our amazing supporters, have been campaigning for data on secondary breast cancer to be collected. Most recently , as part of our secondary campaign, we called for a secondary breast cancer audit, which would give us this missing insight and much-needed information about their experiences and outcomes.

Why is a secondary breast cancer audit so important?

The impact of secondary breast cancer is devastating. It is felt far beyond the person diagnosed; it changes the lives of parents, children, siblings, cousins, wider family and friends.

Yet many people with secondary breast cancer have told us how they frequently feel alone. They feel that their experiences are little understood. For over a decade there have been calls for changes in key areas that would begin to improve the experiences of people with secondary breast cancer.

Progress has been hampered by the lack of data on the number of people living with secondary breast cancer and their unique experiences, with change slow or not forthcoming.

A 15-year fight for an audit

In 2006, we set up the first national secondary breast cancer task force, producing the ‘Stand Up and be Counted’ report which called for UK Governments to make data collection on secondary breast cancer a requirement. Subsequently, the National Cancer Intelligence Network announced that from January 2009, this data would be collected.

By 2010 it had become apparent to us that this was not the case. Our work then led to the 2011 Cancer Strategy acknowledging the need for this data, securing a commitment to a data pilot. And, since 2013 because of this pilot and the subsequent recommendations, it has been compulsory for NHS trusts to collect data on people diagnosed with secondary breast cancer in their trust.  

However, our ‘Secondary. Not Second Rate: Who’s counting’ 2016 report showed that two-thirds of hospital trusts in England were not collecting full data. Most recently, in our 2019 report ‘Unsurvivors: Until Things Change’, we again highlighted the unacceptable inaction in relation to data collection and its vital importance to ensuring effective design and provision of care, going further by calling on all UK Governments to commit to undertake national secondary breast cancer audits covering diagnosis, treatment and access to support.

Over the last 15 years, our amazing supporters have backed our campaigns, raised their voices with us, shared their experiences and been central to showcasing why data on secondary breast cancer must be improved. It is only with their tireless support that we have now made that a reality through a National Secondary Breast Cancer Audit.

What impact will an audit have?

This fantastic achievement securing an audit in England and Wales means that we will no longer need to estimate the number of people living with this disease. We will begin to understand the experiences of people with secondary breast cancer - the outcomes of different care and treatment and the differences across the country.

We hope this will in turn lead to patients living with this disease being better supported and less alone; to cancer services and clinical trials being planned to meet their needs, to the cancer workforce required being known, including the number of specialist secondary breast cancer nurses needed.

Thank you

This breakthrough simply would not have happened without the commitment and determination of our supporters. They have forced this issue to the top of the agenda, highlighting the need and support that has finally delivered a secondary breast cancer audit.

Whether you have supported this campaign since the beginning or got involved with one of our more recent actions, we want to say a massive thank you – this win is down to you!

What’s next?

We will be working with HQIP, NHS England, and the Welsh Government as they plan for the audit. Audits are huge projects and it will take time to set up and collect the data. While data from the audit won’t be available immediately, when it is ready, it will give us information like we’ve never seen before on secondary breast cancer - helping to improve the experiences of people living with this disease across treatment, care, and support.

We are eager to see similar audits implemented in Scotland and Northern Ireland and we will continue to call for this as part of our campaigning.

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