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The Scottish Government is currently developing a new cancer strategy – a 10 year plan to improve cancer outcomes in Scotland.
The new strategy, which is due to be published next year, will cover early diagnosis, cancer incidence, treatment times and survival rates. To help inform it, they launched a consultation. We encouraged supporters to respond so that the needs of people affected by breast cancer were heard loud and clear by the Scottish Government.
In this blog, we hear from our patient advocate, Alison, about her response, and share some of the recommendations we made to improve the lives of people living with secondary breast cancer.
Alison got involved with Breast Cancer Now to help get a new drug called Kadcyla approved for use on the NHS in Scotland after being diagnosed with secondary breast cancer in August 2016. She then campaigned later on for Perjeta. During the process, she was invited to observe how the Scottish Medicines Consortium approved new medicines and attended meetings at the Scottish Parliament to share the patient experience of breast cancer.
In her response to the strategy, she included four key themes that she believes continue to be relevant to improve breast cancer care across Scotland:
She said, if there was one key message that she could give to the Cabinet Secretary, it would be to, “Listen to patients. Patients are regularly called upon to share their experiences and insights to help inform key decision makers and it feels very deflating to bare your soul and for little notice to be taken.”
When asked why she chose to respond, she said, “I think it's important to use every opportunity available to me to try to raise awareness of secondary breast cancer and the barriers and difficulties that patients experience. I'm hoping that my voice, along with others, will help ensure that these issues are eventually heard and that steps are taken to improve cancer services in Scotland.”
As part of the consultation, we also submitted our own response, calling on the Scottish Government to take action to improve secondary breast cancer data collection by committing to a secondary breast cancer audit.
An audit for secondary breast cancer was already approved in England and Wales last year, after we campaigned for NHS England and the Welsh Government to introduce it. We now hope that Scotland and Northern Ireland will either join this audit or introduce their own, because we know that having accurate, up-to-date data and insight is vital to improving the care, treatment and lives of people with secondary breast cancer.
Additionally, we are calling for patients with secondary breast cancer to receive a timely diagnosis. We hope to do this through supporting GPs to be aware of previous diagnoses of breast cancer in patients, as well as helping them spot the signs and symptoms of secondary breast cancer.
Finally, we want a commitment to ensure that all secondary breast cancer patients have access to a clinical nurse specialist (CNS).
The Scottish Government is planning a series of workshops this summer to gain further insight into consultation responses and hear directly from stakeholders. There will also be a second round of direct engagement in the Autumn to sense check the direction of their strategy and provide another opportunity for feedback.
They plan to develop their long-term strategy alongside a short-term action plan over winter and are aiming for publication early next year.
*Update: The Scottish Government have now announced the dates for their roundtable workshops
6th September 2022, 13.00-15.00, Inverness
14th September 2022, 09.30-11.30, Glasgow
22nd September 2022, 17.00-19.00, online/virtual
The exact locations are to be confirmed but they will be central with easy transport links, and reasonable travel expenses paid by the Scottish Government.
If you’d like to participate, please email the Scottish Government at email@example.com by Wednesday 17th August, stating your with your preferred date from the list above.
We are working hard to improve the lives of people affected by breast cancer, but there is always more to be done. By sharing your experience of breast cancer and campaigning with us, you can help us continue this work.