Gillian Nuttall, founder of MelanomaUK, tells how the UK’s largest Melanoma charity was started and what it’s up to today.
Melanoma UK was founded in 2007, and it was a tragic situation which led to the formation of the charity. As the founder of Melanoma UK, I experienced the devastation of of melanoma, when a close family friend, Jon Herron, a young man from Northern Ireland ,was given the news that he was terminally ill. Sadly, Jon died in May 2008, aged just 30.
Before Jon died, we had discussed the lack of support in melanoma: he used to feel quite frustrated that there was no real recognition for melanoma patients. We’d see the coloured cancer ribbons at various points throughout the year, and yet it seemed that melanoma was paid little attention. I decided that I would take on a project to raise some funds for research and some awareness of the disease. I started to do just that and eventually it became apparent that more and more patients were feeling the same: isolated and unsupported. Over time that began to change and after a couple of years we started to talk to more and more patients, clinicians, politicians and opened up dialogue with pharmaceutical companies. Melanoma UK continued to grow and in 2013 I gave up my full time role in law and now work full time in patient advocacy.
Now recognised as one of the leading patient advocate charities, we are founder members of the Parliamentary task force on melanoma, stakeholders with NICE, and sit on several advisory boards. We are often asked for press assistance, and work a lot with the BBC and various newspapers in the UK and overseas.
Melanoma is now the 5th most common cancer in the UK: last year 12,000 new cases were diagnosed and 2,000 people died. It is a brutal disease and as yet, has no cure – only life prolonging treatments. Caught early melanoma can be treated; it’s when the disease reaches advanced stage that it becomes very difficult to treat. If melanoma spreads to vital organs, it can leave the patient in an extremely difficult situation.
We are currently fundraising to provide more melanoma nurses. Patients benefit greatly from having dedicated melanoma nurses. We believe that the money we raise should benefit the patients directly and they are important in our decision making. Everything we do is underpinned by our patients and their needs.
Our days are never the same, ever. We can be talking to a room full of outdoor workers one day about the benefit of protection in the sun, and the next, we might be in Westminster, engaging with politicians about the increase in melanoma in the UK.
For more info on the amazing work of Melanoma UK, check them out at melanomauk.org.uk!