What we do

As experts in melanoma, we serve the entire melanoma community, including medical professionals, patients, carers and the general public. We strive to shape a better future for melanoma patients.

The purpose of Melanoma Focus is to provide support and information for patients, carers and healthcare professionals while commissioning and funding innovative research. Under this banner, our activities are grouped in three main areas:

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

These are described below.

In May 2023, Melanoma Focus was fortunate to be awarded a BBC Lifeline appeal which showcases some of our work.

Patient receiving treatment from a nurse

Patient Support and Information

Patient support informs every aspect of our work. From someone worried about a mole, to someone who is diagnosed with late-stage melanoma we pride ourselves in being a source of expert and caring information and guidance to accompany someone on their melanoma pathway.

Our Melanoma Helpline, operated by a team of expert skin cancer nurse specialists, provides confidential assistance, information and emotional support to patients, carers and the general public in the UK. In 2020 we expanded the Melanoma Helpline to meet the increased demand and we are constantly reviewing the service.

Our Melanoma Stages and Treatment – Patient Guide is the product of an expert steering group of clinicians, clinical nurse specialists and importantly patients, led by Dr Miranda Payne. It describes the stages of the melanoma together with information on key topics such as sentinel lymph node biopsy, adjuvant treatments, drug therapies and their side effects, as well as other available treatment options. Additionally, we provide general wellbeing information to support patients during and after their melanoma treatment.

Nurse and patient talking

In July 2023, Melanoma Focus received PIF TICK accreditation. The PIF TICK is the UK wide quality mark for trusted health information, achieving this official certification demonstrates our commitment to the provision of high-quality health information.

Click here to read more about our PIF TICK accreditation.

As well as producing accredited information explaining skin (cutaneous) melanomas, we create specific materials on rare melanomas and potential treatments as part of our wider work publishing NICE-accredited clinical guidelines for clinical teams.

The Melanoma TrialFinder was launched in 2022. Clinical trials are medical research studies involving patients, which allow the thorough testing of new treatments. We have created a resource where clinical trials are explained and you can search for potential UK trial options to discuss with the medical team.

From 2023, Melanoma Focus will be supporting Imogen Cheese, Founder of the Melanoma Patient Conference, a national patient conference by hosting and providing the organisation of this important event. This meeting provides a safe space for patients and carers to interact and network while hearing about the latest advances in melanoma medicine.

Professional Education, Resources and Research

Melanoma Focus organises two multidisciplinary CME-accredited melanoma conferences each year. Our Regional Meeting, which takes place in May, is hosted each year by one of the UK’s main melanoma centres, while our Focus Meeting Study Day in October in London is the UK’s principal melanoma event for healthcare professionals, attracting over 250 specialists including dermatologists, surgeons, oncologists, scientists and skin cancer nurses.

We believe that each UK melanoma patient should have access to a skin cancer clinical nurse specialist and in 2022, we published a report describing the pertinent workforce issues and we will continue to advocate for patients and skin cancer nurse specialists.

The charity is also involved in public consultations concerning various aspects of melanoma medicine including the championing of patients’ interests. We routinely provide expert witnesses for NICE technology appraisals and SMC assessments of melanoma treatments.

Paul Lorigan

National Projects

This heading covers the work we do in developing and publishing clinical guidelines including cutaneous and rarer forms of melanoma. These rare melanoma guidelines receive accreditation by The National Institute for Health and Care Excellence (NICE).

In 2022 we were delighted to publish the updated National Clinical Guidelines for Uveal Melanoma (a type of ocular melanoma or melanoma of the eye) chaired by Dr Paul Nathan.

Further guidelines for other rare subset of the disease called mucosal melanomas, using NICE-accredited methods to create National Clinical Guidelines for mucosal melanomas have been published. The guidelines were split into two phases; in 2017 the ano-uro-genital mucosal melanoma guidelines were produced and later published, under the chairmanship of the late Professor Martin Gore CBE. The second phase of this project, addressing sino-nasal and head & neck mucosal melanoma, was chaired by Professor Kevin Harrington reported in 2020 and has been accepted for publication.

Doctor comforting patient

Melanoma Focus also produces consensus documents and guidelines in important areas of interest such a melanoma and pregnancy, sentinel lymph node biopsy and melanoma follow-up guidelines.

Clinical Research

We commission and fund melanoma studies of various types, regularly calling for proposals from melanoma researchers for patient benefit. Our Scientific Committee, led by Professor Samra Turajlic, evaluates the responses and makes recommendations for the research awards.

For more information on the studies we currently support and have supported, please see here.

Additionally, we have developed the UK Melanoma TrialFinder, a searchable database by various terms such as stage, type of melanoma and postcode. Two versions have been created; one for healthcare professionals and one for patients with the formation of lay versions to briefly explain each trial to support discussions.

Each research study furthers the national and international understanding of melanoma.

melanoma researcher

Public Awareness of Melanoma and Advocacy 

Melanoma skin cancer is the 5th most common cancer in the UK with approximately 16,700 new cases diagnosed each year.  Tragically, about 2,500 people die from melanoma annually in the UK.

1 in 36 males and 1 in 47 females will be diagnosed with melanoma in their lifetime and in the 15-44 year age group, melanoma is the 2nd most common cancer in males and the 3rd in females. Yet, 86% of melanomas are preventable.

We are wholly committed to raising public awareness about melanoma as it is a cancer that can be predominantly prevented. Until then, diagnosing melanoma early provides the best opportunity for diagnosis, treatment, and the potential for cure.

Melanoma Focus is calling on the Government to remove the Value Added Tax (VAT) for high-factor (30+) sunscreens to reduce the cost of this vital product for the general population, making it more accessible to those who cannot afford it.

Our 2023 research found that 67% of all respondents would use sunscreen more if it was 20% cheaper and worryingly, 1 in 10 people aren’t wearing sunscreen at all because it is too expensive. People on the very lowest incomes are less likely to wear sunscreen than any other economic group

The unaffordability of sunscreen is therefore a big concern.

Get Involved

How we are Supported

We are largely voluntarily funded and rely to a great extent on the encouragement and participation of our growing band of supporters. Medical professionals, patients, carers and often members of the general public enthusiastically undertake personal challenges, bake cakes, climb, walk, sky dive and generally do amazing things to support us. We thank you …

Funding also is also applied for from Trust and Grant making organisations, pharmaceutical companies and a growing band of interested corporate entities. We are hugely grateful for this support enabling us to undertake some of our core work and specific projects.

We apply for sponsorship for our meetings and these important educational events could not take place without their crucial support. Sponsors have absolutely no involvement in the planning, design or delivery of these programmes.

If you would like to support our work, you will find details of how you can help us reach our aims of shaping a better future for melanoma patients here.