Interview: MelanomaMe

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Kerry Rafferty founded MelanomaMe in April 2017 after being diagnosed with melanoma two years earlier. The group aims to support those diagnosed and their families, as well as raising awareness of the illness

Tell us why you started MelanomaMe?
I started MelanomaMe in April 2017 after my diagnosis with melanoma in 2015. When I was diagnosed, I found that you’re just given a Macmillan pack and sent on your way. Afterwards, I began to wonder where the support was. There was nothing out there for people with melanoma, and I think many people didn’t really understand what the illness was. Even though I’d had counselling, my councillor didn’t seem to understand how it would affect me. I was already a councillor at the time, and thought there really needed to be something out there for the people it affects, including friends and family. 

When did you take it full time?
We thought it was going to be a slow start, but from April to July we had gained about 100 patients on our books – it emphasised how much this service was needed. By July, we were thinking about how we could raise awareness and bring melanoma to the forefront. We began to do workshops and classes and managed to reach around 15,000 people last year. In one of our workshops, we designed a questionnaire to find out what people really knew about it – it seemed to be very little. Our classes aim to teach people how to spot melanoma and how it affects people.

Is MelanomaMe self-funded?
Initially I put a big chunk of money into it to get it off the ground and we’re still living off that at the moment. A lot of people we work with do help us through fundraising, so we get little bits and bobs in from that which helps us to deliver our services. We’ve got 11 members of staff who are all volunteers, so there’s no cost there. 

How many people do you help currently?
We’ve got over 200 families on our books at the moment, who come in for counselling and support, (including Cognitive Behavioural Therapy). We’re trying to get group sessions up and running, and we’ve recently been working with nurses too. Most of our clients hear about us through word of mouth, but recently we’ve been approached by hospitals who want to work with us, so we can now get referrals through them.

Why do you think so many people have such little knowledge?
There’s just not enough information in the public domain. Bob Marley passed away from melanoma, but people still call it liver cancer and brain cancer. He died of melanoma on the brain, liver and lungs, but no-one is really talking about it. We want to get people to understand what it really is – it’s the fifth most common cancer, but it’s heading up towards being number one. What needs to change is people’s attitudes towards sun protection and lifestyle.

Outside of counselling, what else does MelanomaMe do?
In August, we’re going to be working with homeless people on skincare – we’re collaborating with Melanoma UK who have supplied us with sunscreen to give out to homeless people. We’re also looking to work more with men, as they tend to get melanoma on areas they can’t see themselves – such as the scalp, neck and ears. We want to make barbers aware as they’re working with the scalp, so they would be able to spot anything that doesn’t look right. 

How do you see MelanomaMe expanding?
We’re in the middle of registering to become a charity, hopefully our application will be completed by the end of the year. It will be a big help, as people tend to have more trust in an organisation when it’s a registered charity. We’ve had offers for fundmatching, but we can’t do this as we don’t have a charity number. 

What should people look out for?
There is the usual ABCDE rule, however melanoma doesn’t always fit these rules and so it can be dangerous to limit checks to these five categories. Instead, we prefer ABCDEFGS: 
A  for Asymmetry: You would expect both sides of a regular mole to be symmetrical. With melanoma, it wouldn’t be.
B for Border. Melanoma may have blurred or notched borders rather than smooth edges.
C for Colour: Melanoma may have more than one colour – anything from blue to black. A normal mole will have one colour.
D for Diameter: Anything above 6mm is a red flag.
E for Evolution: Anything that grows in size or sensation
F for Firm: If you touch it and it’s firm, it’s a red flag.
G for growth: Melanoma can grow outwards, upwards and inwards. 
S for Sensation: Any sensation is a warning, whether it’s a tingling feeling or itching. 

To find out more about MelanomaMe, visit www.melanoma-me.org.uk/

Published in: July 2018

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