“Never mind cancer outcomes”

It’s painfully obvious that cancer, and particularly metastatic (secondary or stage IV) cancer, is low down the government’s priority list. Metastatic breast cancer is the biggest cancer killer of women under 50 in the UK. And yet the UK government doesn’t even know how many people are currently living with this incurable disease. There is a lack of proper data collection with a third of NHS hospital trusts being unable to say how many secondary breast cancer patients currently in their care (2). To rectify this, the charity Breast Cancer Now have been campaigning for 15 years for a national metastatic breast cancer audit. Our founder Jo Taylor has been highlighting this disparity for over 7 years.  This request was finally granted this year. However, the audit will not begin until 2023 and will then take 3 years to run. With an average life expectancy of 2-3 years, most current secondary breast cancer patients will not live to see the data released.

The experience of secondary breast cancer patients in the UK also varies depending on where they live. There are geographical inequalities in stage at diagnosis and survival rate as well as the choices and support offered to patients (for example, access to a dedicated clinical nurse specialist) (3). We would love to see government effort put into removing these disparities and ‘levelling up’ breast cancer outcomes across the UK. Unfortunately, the pandemic has only made the situation worse with an ever-increasing backlog in treatment and care (4). It is imperative to address this to ensure secondary breast cancer patients receive personalised support and treatment.

If secondary breast cancer patients are not counted, if outcomes are not measured (unlike for primary patients), how do we know whether the NHS is improving our survival and care? How do we know if the drugs from pharmaceutical companies that profit millions from the NHS are effective? How do we know whether patients in different regions in the UK are receiving equal treatment and support?

We wish we were fortunate enough to not have to worry about cancer outcomes. Sadly, secondary breast cancer patients do not have that luxury. We are tired of not being a priority. We are tired of seeing our friends die. So instead, we campaign tirelessly for better secondary breast cancer outcomes in the UK, for better awareness (5), more research and better access to new drugs and treatments.

If you’d like to make a difference to the thousands of people living with secondary breast cancer in the UK, please join our campaign by writing to your MP:

https://metupuk.org.uk/write-to-your-mp-for-metupuk/

We demand change.