Charity demands urgent action to see people with incurable secondary breast cancer ‘counted’

Breast Cancer Now’s ‘I don’t count’ installation features 16 Scottish women who are living with this devastating disease. Depicted doing everyday activities through a series of cut-out images, such as yoga and walking the dog, the installation highlights that women living with incurable secondary breast cancer in Scotland are being overlooked by the health system. 

Almost a decade on from the Scottish Government committing to improving the collection of comprehensive data on how many people are living with secondary breast cancer (in 2016), the tragic reality is that no progress has been made. 

Charity Breast Cancer Now is shining a spotlight on the unacceptable price being paid by the thousands of people  living with this devastating disease  who, as a direct result of the absence of timely and accurate data, are effectively ‘missing’ - meaning they’re not factored into planning by NHS Scotland, and in turn not guaranteed the treatment and care they need.  

The installation has been unveiled to coincide with a parliamentary debate taking place on the topic, sponsored by Emma Harper MSP. Supported by Breast Cancer Now and Make 2nds Count, the debate will set out how until accurate data is gathered, people with secondary breast cancer will remain overlooked, and discuss what datasets needs to be improved to help identify for the first time, how many people are living with the disease.  

Prior to the debate some of the women featured in the installation will be outside the Scottish Parliament to share directly with MSPs their own experiences of living with secondary breast cancer and the personal impact of feeling like they don’t count. 

Breast Cancer Now is calling on the Scottish Government to take urgent action to ensure every person living with secondary breast cancer in Scotland is counted and accounted for – by delivering the commitment in its current Cancer Action Plan (2023 – 2026) to improve data on secondary breast cancer and show patients they count.  

Claire Rowney, chief executive of Breast Cancer Now said: 

“Almost a decade has passed since the Scottish Government promised to ensure comprehensive data was collected on those living with incurable secondary breast cancer in Scotland – yet women living with this devastating disease remain uncounted, their vital treatment and care needs overlooked.  

“These women, who make such hugely valuable contributions to society as well as being the mothers, sisters and daughters of loved ones, are currently left to feel they don’t count with the health system unable to guarantee them the care and support they so desperately need. 

“Through our installation and the parliamentary debate taking place at Holyrood today we’re shining a spotlight on the unacceptable price women with incurable secondary breast cancer in Scotland are currently paying and calling on the Scottish Government to act now and deliver on their promise.  

“Robust data on those living with incurable secondary breast cancer in Scotland is the fundamental foundation which will enable NHS Scotland to provide these women with the best treatment and care. We stand ready to work with the Scottish Government to help them improve this data collection and we won’t stop until this happens.”  

Alison Tait, who features in the installation and was diagnosed with incurable secondary breast cancer in 2016 said:  

“When I was diagnosed with incurable secondary breast cancer nearly 10 years ago, outdated statistics suggested I had a life expectancy of between 3-5 years, and I adjusted my life with this in mind, but here I am many years on.  

“Right now, my story – and that of other women in Scotland living with this incurable disease - isn’t counted. So nobody knows what services and support I need, or how much my ongoing care will cost. There’s no understanding of how many people are living with incurable secondary breast cancer in Scotland. We simply don’t count. 

“Statically we're either cured or dead. People are always compassionate, but action is what’s needed -now and led by the Scottish Government who have a promise to fulfil to capture data so that we and our vital needs are recognised and met. 

“I’m proud to be seen and counted as part of this powerful installation and by sharing my experience on behalf of all the 'missing’ women whose treatment and care needs are currently overlooked.” 

Breast Cancer Now is committed to shifting the dial on secondary breast cancer awareness as part of its bold ambition that by 2050, everyone diagnosed with breast cancer will live and live well. As the Scottish Government’s current Cancer Action Plan concludes in 2026, the charity will continue to hold them to account to finally fulfil their decade-long commitment to improve data collection.