Scottish Government urged to 'deliver promise' to improve data collection on secondary cancers

The Scottish Government must “deliver on their promise” and ensure “robust data” is collected on the number of women living with incurable secondary breast cancer.

The charity Breast Cancer Now said that Scotland lacks “comprehensive data” on cases where breast cancer has spread to other parts of the body.

The Scottish Government committed in 2016 to “improve data collection on secondary and recurrent cancers”.

But Claire Rowney, the chief executive of Breast Cancer Now, said almost a decade on from that “women living with this devastating disease remain uncounted, their vital treatment and care needs overlooked”.

She added: “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.”

To highlight the plight of secondary breast cancer sufferers, Breast Cancer Now is staging a special installation outside Holyrood, titled I Don’t Count, featuring images of 16 women who are living with the condition, doing everyday activities such as yoga or walking the dog.

SNP MSP Emma Harper is also to raise the issue in a member’s debate in the Scottish Parliament on Tuesday.

Ms Rowney said both the installation and the debate were “shining a spotlight on the unacceptable price women with incurable secondary breast cancer in Scotland are currently paying”, adding that the Scottish Government must “act now and deliver on their promise”.

The Breast Cancer Now chief executive stated: “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, one of the women in the installation, has been living with secondary breast cancer since 2016.

She recalled: “When I was diagnosed with incurable secondary breast cancer nearly ten years ago, outdated statistics suggested I had a life expectancy of between three to five years, and I adjusted my life with this in mind, but here I am many years on.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.”

Ms Tait said: “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. ”

She added: “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.”

The Scottish Government has been contacted for comment.