5 Minutes with Melanoma Focus | Your Cancer Services

14 April 2023 — david-allen

Melanoma Focus is a national charity dedicated to providing help and support to the entire melanoma community, including patients, medical professionals, carers and the general public, whilst also raising awareness about melanoma, the 5^th most common cancer in the UK. Ahead of Skin Cancer Awareness Month in May, we spoke to the team to find out more.

Tell us about your organisation? 

Our work can be broken down into these three main areas:

• Patient support and information
• Professional education, resources and research
• Public awareness of melanoma and advocacy

As experts in melanoma, we strive to shape a better future for melanoma patients. We are supported and advised by an expert board of trustees, a patient panel and leading melanoma clinicians.

What services do you offer people living with cancer?

We offer a range of services for people living with melanoma and their family members.

The Melanoma Helpline:

We run the only UK Melanoma Helpline, operated by a team of expert skin cancer nurse specialists. The helpline provides confidential assistance, information and emotional support for patients and their carers in the UK. The helpline has been open since 2017 and in 2020 it was expanded to meet increased demand.

The Melanoma Patient Conference:

From 2023, we now host and organise the annual Melanoma Patient Conference, supporting its Founder and one of our trustee’s Imogen Cheese. This important national two-day event is open to patients and carers and provides updates and information on current treatments, access and support in an environment where individuals can safely interact and be with others in a similar situation.

The Melanoma TrialFinder:

Our Melanoma TrialFinder is a searchable tool that enables patients to find trials based on their location, their type of melanoma or the stage of their melanoma. It also helps them gain a greater understanding of clinical trials and gives them the confidence to ask any further questions to their medical teams. 

Melanoma Stages and Treatment Patient Guide (MPG):

Our Melanoma Stages and Treatment Patient Guide (MPG) is a comprehensive resource covering information from diagnosis to treatment and beyond. The MPG is the product of an expert steering group of clinicians, clinical nurse specialists and most importantly patients. It covers a range of key topics, such as sentinel lymph node biopsy, adjuvant treatments, staging, living with melanoma and aspects of patient’s health- like diet, fertility, exercise, and mental health. The information is presented in variety of forms such as videos, animations, diagrams and guides. 

Rare melanoma guidelines and information

We have worked with our specialist members to produce dedicated information for rare forms of melanoma for patients and carers. This includes specialist patient guides for head and neck mucosal melanoma, ano-uro-genital mucosal melanomas and uveal (ocular) melanoma. 

Do you have a target demographic who use your services?

In contrast to most cancer types, melanoma occurs relatively frequently at younger ages, from 15 upwards, our services are therefore used by individuals from a broad range of ages. We support anyone living with melanoma, their carers and the melanoma healthcare community. 

How are you funded?

As a registered charity we rely on the wonderful generosity of our amazing supporters, fundraisers, grant givers and sponsors who make all our vital work possible. 

In May 2023 our BBC Lifeline appeal will air. This will be a 10-minute video showcasing our work, which will be a great opportunity for us to make a real difference to the melanoma community.

How have things changed for you since COVID-19?

Prior to the first UK lockdown in March 2020, the Melanoma Focus team at the time had worked in an office space in Cambridge. However, like everyone else the Covid-19 pandemic introduced the team to a new remote way of working, which has continued through to the present day. However, we do meet in person at various locations in the UK for our biannual meetings and team away days.

The UK lockdown also meant that we had to adapt our services and activities, our biannual healthcare professional multidisciplinary meetings became virtual. Post Covid we continue with one virtual meeting and one face to face meeting, based on delegate feedback.

In 2021, we were also updating our patient information and planned to hold in person patient feedback sessions, however these also became virtual. In addition, our NICE accredited guidelines groups for rare melanomas became virtual and these have continued to meet virtually. 

During Covid, our Melanoma Helpline service increased 5-fold. This has been maintained and continues to get busier. 

What’s the most rewarding thing about the work you do?

We empower and educate people living with melanoma, helping them feel in control of their diagnosis and decisions. We help ensure that they never feel alone and that there are options and help readily available for them. 

What would you say to those who are considering getting in touch with you but are nervous or apprehensive?

We understand that seeking support, searching for information, and navigating your feelings can all be a very overwhelming and daunting prospect following on from a diagnosis of melanoma. We appreciate that not everyone will feel ready to receive support straight away. Every circumstance is personal and only you will know when you feel ready. Our confidential Melanoma Helpline can be a good place to start, it provides users the freedom to speak to a friendly expert from the comfort of their own home. It is also open during evenings when other services are sometimes closed. The helpline receives calls from repeat users who find the service reassuring, informative and invaluable. 

Remember, our services are available for your family members or friends, they can advocate on your behalf and help you digest information and learn about your diagnosis. 

We are here for you, when you feel ready. 

Do you have testimonials from people that have used your services? 

Yes, we are very fortunate to receive kind testimonials: 

‘This service is a LIFELINE. I can’t thank you enough. On the occasion of calling, I was in despair, anxious and depressed. The helpline nurse was knowledgeable, understanding and quickly into getting to the crux of my problems. They gave me a wonderful sense of comfort. They suggested 3 courses of action which were totally practical and absolutely spot on!  I wished I had phoned before rather than mulling over the anxieties’. (Helpline user)

“This service has given me so much help and information on a rarer form of melanoma at times when there literally seemed nowhere else to go for information.”  (Helpline user) 

“It was a fabulous patient conference, thank you. A lot of knowledge gained, insights learnt and met some very lovely people too.” (Patient conference delegate)

“The conference was wonderful from start to finish, and worth every single minute. It was professional and informative, yet comfortable, warm, friendly and embracing.” (Patient conference delegate)

Who works for you?

We are a team of six individuals: 

• Susanna Daniels, CEO
• Michelle Bridge, Office and Helpline Manager
• Fiona Prakasam, Fundraising Manager
• Olivia Denton, Social Media and Digital Marketing Officer
• Lucy Cowie, Grants Manager
• Nikita Ponda, Research Officer

To find out more about our team, click here.

What are the values of your organisation?

• Clinicians in partnership with patients
• Supporting the melanoma community 
• Campaigning and advocacy 

And finally, can you describe your organisation in 3 words?

• Empowering
• Trusted
• Informative