by Simon Rodwell | 12 June 2017 14:50
The purpose of Melanoma Focus is to commission and fund innovative research, while providing support and information for patients, carers and healthcare professionals. Under this banner, our activities are grouped in four main areas: Patient Support, Clinical Research, National Projects and Professional Education. These are described below, together with links to relevant pages on this website.
In January 2017 we set up our Melanoma Helpline, operated by a team of expert skin cancer nurse specialists who provide confidential general assistance, information and emotional support to patients, carers and the general public. In 2020 we expanded the Melanoma Helpline to meet the increased demand.
Our Patient Decision Aid, the product of an expert steering group led by Dr Mark Harries, is designed to help melanoma patients make essential choices about their treatment. It describes the stages of the disease, together with information on key topics such as sentinel lymph node biopsy, drug therapies and their side effects, as well as other available treatment options.
Melanoma Focus produces reference material about melanoma and its prevention and detection, including a booklet Melanoma: What it is and How to Reduce your Risk, which is available to order.
Within the Melanoma Focus Patient Impact Programme, we commission and fund melanoma studies of various types, regularly calling for proposals from melanoma researchers. Our Scientific Committee, led by Dr Samra Turajlic, evaluates the responses and makes recommendations for the grant of awards.
Studies under this scheme are based at the universities of Dundee, Leeds, Newcastle and Stirling. Some of these address complex scientific questions – such as a study looking at how changes in proteins in the skin can predict the risk of melanoma metastasising – while others are aimed at improving public knowledge of melanoma, its risks and prevention. Given the rising incidence of melanoma in young age groups, we are particularly interested in education amongst younger people.
This heading covers the work we do in developing and publishing clinical guidelines including cutaneous and rarer forms of melanoma.
In 2015 our National Clinical Guidelines for Uveal Melanoma (also known as ‘ocular melanoma’ or melanoma of the eye) were completed. This project was chaired by Dr Paul Nathan and published in the European Journal of Cancer. It received accreditation by The National Institute for Health and Care Excellence (NICE). This guideline is currently under review and due to report in 2021.
Further guidelines for another rare subset of the disease called mucosal melanoma, using NICE-accredited methods to create a National Clinical Guidelines for Mucosal Melanoma were 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. Please see the Resources Page giving access to the guideline documents supporting both professionals and patients.
The charity is also involved in public consultation concerning various aspects of melanoma medicine including the championing of patients’ interests. We have recently interceded successfully with Government for access for patients to new drug combinations. We routinely provide expert witnesses for NICE technology appraisals of melanoma treatments.
Melanoma Focus organises two major annual melanoma conferences. 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 up to 250 specialists including clinicians, surgeons, scientists, nurses and students.
As part of the continuing professional development (CPD) programmes run by clinical organisations, these meetings are accredited by the Royal College of Physicians and Royal College of Surgeons; they are endorsed by the Association of Cancer Physicians, the British Association of Dermatologists, the British Association of Plastic, Reconstructive and Aesthetic Surgeons, the British Association of Skin Cancer Specialist Nurses and the National Cancer Research Institute.
How we are Supported
The charity’s activities are directed and supported by our eminent board of eleven Trustees. Funding comes from personal and charitable sources, as well as from pharmaceutical and other corporate and grant-giving organisations. We rely to a great extent on the encouragement and participation of our growing band of supporters representing patients, carers and the general public.
If you would like to support our work, please go to Guide to Fundraising where you will find details of how you can contribute.
Source URL: https://melanomafocus.com/activities/summary-what-we-do/
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