We’re committed to improving secondary breast cancer data collection across the UK. Read how we’ve been spotlighting this issue in Scotland and holding the Scottish government to account.
What’s the issue?
10 years ago, the Scottish government first committed to improving the collection of data on how many people are living with secondary (metastatic) breast cancer, however they still haven’t.
The current lack of data means thousands of people living with secondary breast cancer are effectively missing. As a result, they are not planned for by NHS Scotland and are not guaranteed to be able to get the treatment and care they need.
Without proper data, we’re operating in the dark. We can’t be sure whose breast cancer comes back and why. We don't know what treatments they’re being given to tackle it, or how many of them could benefit from new ones. And we can’t make sure everyone’s getting the support they need to cope with what they’re going through. This leaves people living with secondary breast cancer feeling like they don’t count.
How we’re holding the Scottish government to account
To bring attention to the issue we unveiled our ‘I don’t count’ installation outside the Scottish parliament. Featuring 16 Scottish women who are living with secondary breast cancer, it shows cut out of images of them doing their everyday activities like yoga and dog walking. Helping to highlight that women living with the incurable disease are effectively missing and not counted in official statistics.
We were joined at the Scottish parliament by some of the women featured in the installation and others living with the disease. They shared with Members of the Scottish Parliament (MSPs), including the Minister for Public Health and Women’s Health, their own experiences of living with secondary breast cancer and the personal impact of feeling like they don’t count.
The installation was revealed on the same day as a debate in the Scottish parliament. Led by Emma Harper MSP and supported by Breast Cancer Now and Make 2nds Count, the debate set out how until accurate data is gathered, people with secondary breast cancer will remain overlooked.MSPs across political parties joined us in calling on the Scottish government to live up to their promise and fulfil their commitment in the Cancer Action Plan 2023-2026 and improve data collection on secondary breast cancer. To show people living with secondary breast cancer that they matter.
We were pleased to hear in the Minister’s closing speech that the Scottish government will agree the best method of data collection by the end of the current Cancer Action Plan in March 2026.
We’re incredibly grateful to all our supporters who helped make the day so impactful by asking their MSPs to come and view the installation, speak to us and attend the debate.
What happens now?
Over the next few months, we’ll be working to make sure that the commitment to collect secondary breast cancer data is on track to be delivered by 2026. We’ll be looking to collaborate with the Scottish government and Public Health Scotland to ensure we can collect the right data, at the right time.
In January, alongside two of our patient advocates, Jen Hardy and Alison Tait, we’ll be meeting with the Cabinet Secretary for Health and Social Care, for an update on progress. We’ll also be calling on the Scottish government to commit, in the next iteration of the Cancer Action Plan, to fully fund and resource the best method of data collection once it is agreed.
Make change happen for people affected by breast cancer
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