METUP was created in America to change the landscape of metastatic cancer through patient advocacy and direct action.
I’d followed one of the founders, Beth Caldwell from Seattle, on social media for a number of years. I was impressed with the work they were doing and believed we needed the same here in the UK. We were being let down and ignored.
I finally met Beth when she visited London in 2016. I asked if we could create a METUP here in the UK and happily, she agreed. METUPUK was born.
Our disease is incurable and the median survival rate is only 2 to 3 years. Beth campaigned tirelessly to improve our outcomes until her death in 2017.
It was a privilege to know her and her passion was inspirational. Her legacy and voice live on.
We are making HERstory
My determination to invoke much-needed change is borne out of the frustration and anger of being in the middle.
I have had treatment and currently have no evidence of active disease. But this doesn’t mean I’m cured.
Metastatic breast cancer can never be cured. Many of us are not actively dying we are #BusyLivingWithMets
At METUPUK we focus on making positive changes for all those with metastatic breast cancer. We are continually growing in strength and numbers as more patients join our group.
We are campaigning for awareness of red flag signs and symptoms, access to drugs and treatments, access to clinical trials, and pushing policy to change for the better.
We are slowly getting there and issues are being addressed.
NHS England signpost to my red flag symptoms infographics for use in their personalized care plans for primary patients. We are also looking at clinical trials to see what we can do to improve access.
In addition, we’re pushing for one database for patients and clinicians where we are counted using data and statistics.
Jo meeting Beth Caldwell in London 2016
Jo Taylor, Founder of METUPUK and www.abcdiagnosis.co.uk