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The experiences of people living with secondary breast cancer are unique, which is why our secondary breast cancer campaign has been calling for them to be acknowledged and understood.
It's also why we’re excited to have successfully worked with NHS England to make sure the National Cancer Patient Experience Survey (CPES) can better capture the experiences of people living with the disease.
The National Cancer Patient Experience Survey (CPES) monitors patients' experiences of different types of cancers, including breast cancer. It's carried out every year on behalf of NHS England and gives people an important chance to provide feedback and rate aspects of their care, from treatment to nursing.
The survey gives invaluable information to the NHS about the areas of care that need to be improved. It's also vital in developing our work and helps us identify where we need to focus our policy and campaigning efforts.
We know the experiences of people living with secondary breast cancer are not well understood.
This, along with a lack of data around secondary breast cancer in England, makes it extremely difficult for healthcare providers to plan, carry out and improve treatment, care and support for people living with this disease.
This is why we’ve been campaigning for better data collection as part of our secondary breast cancer campaign.
Before 2021, the CPES did not identify whether someone had secondary breast cancer. We’ve worked with NHS England to make sure the next survey will:
Alongside our other recent campaign success – securing a secondary breast cancer audit in England (a huge project that will report in 2023) – the information gained from the CPES will help us improve our understanding of secondary breast cancer.
The new version of the CPES will be sent to patients in November and December 2021 with results expected to be published in Spring 2022.
We're excited NHS England has worked with us to better capture the unique experiences of secondary breast cancer patients. It's a crucial step to ensuring everyone living with the disease gets the best care and treatment possible.
If you want to find out more about our policy and campaigns work and how you can get involved, join our campaign mailing list.
When Hayley was diagnosed with cancer in 2014, it had already spread and become incurable. Now, her husband, Scott, and their two children have been doing what they can to emphasise the importance of secondary research.
Adobea sought medical help four times before her breast cancer was detected, and by then it had already become secondary. She tells us about how factors such as age and race can have an impact on how patients are treated.
When Fran was diagnosed with secondary breast cancer at 25, she was determined to defy the prognosis she’d been given. After surgery, chemotherapy and radiotherapy, she's been declared No Evidence of Disease.