'Count Us In' - 12 months on

In this blog, we’ll update you on the progress we’ve made since then, and where we’ll go next, so please read on to find out more.

We estimate around 61,000 people in the UK live with metastatic breast cancer. But because there’s no comprehensive data collection, we don’t have an accurate, up-to-date figure.

Without proper data, we’re operating in the dark. And that means the needs of people living with metastatic breast cancer can’t been properly planned for, they can’t be sure of getting the right support, and there’s no guarantee that they will be able to get the treatment and care they need. Often, they’re left feeling like they don’t count.

After learning that Australia and Canada were facing many of the same challenges, we all decided to work in partnership to push for urgent action on the issue by launching the ‘Count Us In Advocacy Pledge’.

At the launch event, we hosted a panel discussion with representatives from the other charities, our CEO Claire Rowney, the then Cancer Minister Ashley Dalton, and patient advocate Claire Myerson to explore how stronger data, policy changes and community voices are vital to transforming the experiences of people living with metastatic breast cancer.

The pledge called on governments to:

1. Prioritise secondary breast cancer data collection and reporting
2. Collaborate internationally – allowing researchers and governments to share knowledge and support consistent approaches
3. Integrate secondary breast cancer across global initiatives
4. Ensure people living with secondary breast cancer are visible within health systems

Since then, we’ve continued to push for progress. In December, we brought together patient representatives, clinicians and data experts to develop actionable solutions to improve breast cancer recurrence (including metastatic recurrence) data.

We’re continuing to work with those involved to implement these, and ensure that decision makers are on board with our suggested changes.

After years of campaigning with our supporters, the patient group METUPUK and many others, the government committed in their new National Cancer Plan for England to ‘define and count recurrent cancers, starting with metastatic breast cancer’ in 2026.

In the most recent National Audit of Metastatic Breast Cancer (NaoME) State of the Nation report, it highlighted that there were still glaring gaps in data on metastatic breast cancer, so we believe the commitment made in the National Cancer Plan marks a positive milestone on the way to improving both the data and the insights available.

We’ll now work in partnership with government, clinicians and patient advocates to ensure it is delivered effectively.

We’re committed to improving metastatic data collection across the whole of the UK, and as most health decisions are devolved in Scotland, Wales and Northern Ireland, we’ve also been working hard to improve data collection in those nations too.

With the support of Make 2nds Count, we unveiled an ‘I don’t count’ installation featuring 16 women living with metastatic breast cancer to highlight that women living with the disease are effectively missing in official statistics in Scotland last year.

We’ll be pushing for the new Scottish Government’s next Cancer Action Plan fresh on the heels of the recent election.

Likewise in Wales we’ll be calling on the new government to develop a cancer strategy of its own and include a similar commitment to improve data collection.

In Northern Ireland, we’ve funded a new study to build on the ground-breaking work published by the Northern Ireland Cancer registry last year, which gives estimates on metastatic breast cancer. The study will try to improve our understanding of health inequalities and how to improve support with people living with metastatic breast cancer in Northern Ireland.

Nearly one year on from the launch of the pledge, we went to the UK parliament to share a progress and learnings with MPs. We’ve been working hard to build more evidence and build political will, so we were pleased to share an update at an All Party Parliamentary group (APPGBC) meeting with chair Clive Jones and Ashley Dalton, alongside patient advocate Claire Myerson.

But there’s still much more to do. After the meeting, there was a clear consensus. We need to continue our push for data to be published and to get a credible national estimate on the number of people living with metastatic breast cancer this year.

So we’ll continue to work with patients, clinicians and other charities, at both a global and national level and won’t stop until being counted is the same as being cared for.

To find out how you can support with that work, please sign up for campaign updates.