METUPUK is now 6 years old.
In those 6 years our plans have grown from what we set out to do, but we have achieved so much! And we are now in our second year as a registered charity!
Our strategy, aims and objectives are the same as when we started, we knew what direction we were going in but we are now looking to demand more action and accountability for patients.
Who we are!
METUPUK is a group of people living with metastatic breast cancer, primary breast cancer patients and the family members of people who have died from metastatic breast cancer, working together to make change.
All this is voluntary – we earn no money and work very hard.
It started as a small group with Jo leading the way due to the many discussions around the world with other metastatic breast cancer patients, and with her attending conferences and networking, this gave her a wealth of knowledge, connections and ideas.
METUPUK are different to other charities because we don’t focus on fundraising for research. We leave that to other charities because many others do that and we do not want to duplicate work.
Our focus is the passionate DEMAND FOR CHANGE which we have as a group.
We demand more money is ringfenced for research for MBC patients and to address the following:-
- Awareness and education of MBC this is why the infographic is important and why we need a MBC awareness campaign.
- Research and access to drugs – we need effective drugs so we can live longer with good quality of life. We have found that clinical trials and trial design are restrictive and can stop patients accessing them. Collecting data on MBC is important and we know this wouldn’t have been progressed if it wasn’t for the work METUPUK has done on this with stakeholders.
- Patient treatment and care – we support patients with a wealth of information.
We have achieved so much but sadly we have lost many members over the last 6 years.
Our aim is to continue this work to grow stronger as are registered as a Charity which has opened up further doors for us.
We have had many campaigns over the years to raise awareness of MBC:-
- #BreastCancerRealityCheck (two UK and two USA patients who worked together)
- #Metastatic May
- And the brilliant #DarkerPink campaign which has been a huge success and continues to be a success with the campaign travelling the UK. MBC isn’t just a day or a month, we live with it every day.
We are the ONLY patient advocacy group in the UK who are addressing the problems and needs of MBC patients directly.
We work with other advocates, campaigners, policy people, local and national government and those charities who have the foresight to work together to address our problems, and to hopefully create solutions. We want to address transparency that is lacking in areas of research. We strive to downgrade this disease from an incurable one to a chronic one – we want a disease that you can live with for 20+ years instead of being given a 2-3 year median life expectancy.
Please help support METUPUK by sharing our social media messages and if possible to additionally fundraise so we can continue this important work on behalf of all breast cancer patients.