Edinburgh women tell Swinney they have ‘waited long enough’ for breast cancer data
The Scottish Government has been urged to count incurable breast cancer patients
Edinburgh women living with incurable secondary breast cancer have told John Swinney they have “waited long enough” for the Scottish Government to honour a 10-year-old pledge to collect data on the condition.
Alison Tait, 57, and Lorna Main, 46, both from the Capital, are among 16 women living with the disease who have written to the First Minister over a “continued failure” to deliver the promised figures.
Collecting accurate data on the number of patients who have seen their cancer spread to other parts of the body is “vital to informing appropriate care, treatment and support”, the women insisted.
The commitment to do so was first made in the government’s 2016 Beating Cancer: Ambition and Action strategy.
But the women told Mr Swinney it remained “undelivered” despite a pledge for date to be collated and published when the period covered by the most recent cancer action plan came to an end in March 2026.
The women, who met with Mr Swinney during the Wear it Pink breast cancer charity event at Holyrood in September, said it was “encouraging” to hear that the government “intends to deliver this commitment by the end of 2027”.
But they told the SNP leader: “For women living with metastatic breast cancer, another delay is not just another year on a government schedule. It’s another year in which our lives, our experiences and our needs remain inadequately counted. And another year we spend fighting to be seen.”
They added: “We want to see meaningful progress in our lifetime.
“We want to know that the experiences of everyone living with this disease today will help improve care for those diagnosed tomorrow.
“And we want the Scottish government to honour a commitment it made ten years ago.”
The letter comes a year after some of the women stood outside Holyrood as the charity Breast Cancer Now staged a special installation to highlight the plight of women with secondary breast cancer.
Ms Tait took part in that and is one of the women who signed the letter to the First Minister.
The Edinburgh resident, who was told her cancer had spread back in 2016, said that in the years she has been campaigning for data to be collected she had “lost many friends who stood alongside me and fought for this”.
She said it was “heartbreaking” that these women are no longer here and that they and others “were not seen or counted while they were alive”.
Speaking about these women, Ms Tait added: “They have become statistics only after their deaths.
“Their pleas deserved to count when they were here, not simply become numbers once they were gone.”
She hit out and said: “I am tired of hearing the promises of the Scottish Government that never come to fruition.
“How many more women are going to die unnoticed and unsupported because our government simply don’t know they exist.”
Fellow Capital resident Lorna Main has had metastatic breast cancer for four years and 10 months.
She said: “Standing alongside other women like me at Holyrood last year, as part of Breast Cancer Now’s I Don’t Count’ installation, was an incredibly powerful experience.
“Together, we showed the Scottish Government that women living with metastatic breast cancer can no longer be overlooked.
“And yet, a year on from our installation, and ten years after the government first made this commitment, we’re still waiting.”
Ms Main told how she had “shared how important this data collection was to me and women like me with this incurable disease” when she came to Holyrood again for the Wear it Pink event last month.
Calling for action, she said: “I shouldn’t have to still be campaigning for this. I should be using my precious time making memories with my loved ones not asking the government to deliver on its promise.”
Ms Main added: “We owe it to the women who are tragically no longer with us, and to all the women who will be diagnosed in the future, to make sure they are properly counted. No one should have to fight to be seen.”
Frances Logan, the policy and public affairs lead for Scotland at Breast Cancer Now hailed the women for their “powerful letter”.
She insisted: “It’s unacceptable that, a decade after the Scottish Government first committed to improving metastatic cancer data collection, this vital work remains unfulfilled.
“Without accurate data, people living with incurable breast cancer are being overlooked, and NHS Scotland cannot properly plan the care, treatment and support they need.
“Breast Cancer Now is demanding that the next Scottish Cancer Action Plan puts this right by delivering accurate metastatic data, with a firm commitment to deliver this in a timely manner, backed by a clear timeline, funding and resources. ”
The Scottish Government has been contacted for comment.