News & Updates

  • October 2021: Updated Skin & Nail Check Leaflet Released

We have released an updated version of our skin check leaflet, now called the Skin & Nail Check Leaflet. In addition to existing information designed to help users monitor changes to their skin, the new leaflet includes additional guidance to help detect possible symptoms of rarer melanomas, such as checking the nails for signs of acral lentiginous melanoma.

Remember to check your skin and nails monthly!

  • October 2021: Consultations and CNS Nurse Census now closed

Consultations for the uveal melanoma guideline update and informing a new draft consensus statement on imaging follow up have now closed. Please check back for updates.

Additionally, data from the Skin Cancer Specialist Nurse Census is now being reviewed. We look forward to sharing the results with you shortly.

  • August 2021: Melanoma Focus hosts Melanoma Patient Conference

Melanoma Focus are hosting the Melanoma Patient Conference 2021. We are delighted to facilitate this online event for the Melanoma Patient Conference and the melanoma patient community.

The conference will be held online and is free to attend.

Click here to register for the Melanoma Patient Conference

  • October 2020: Melanoma patients invited to focus group

We are currently developing our Patient Decision Aid and would like to invite melanoma patients to take part in a focus group (online format) to help us improve this service. The meeting will take no longer than 1.5 hours.

Patients at all stages of diagnosis and treatment are invited, and we are particularly keen to include those who have been newly diagnosed.

Participants can join focus groups on either Tuesday 17th November OR Monday 23rd November.

Click here to register for the patient focus group

  • September 2020: New Staff at Melanoma Focus

A message from our new CEO, Susanna Daniels:

“I am absolutely delighted and excited to be the new CEO of Melanoma Focus as Simon Rodwell retired last week. I have immensely enjoyed working with the charity for over a year and am really keen to lead the charity forward and honour its core values.

Simon Rodwell helped to merge two medical research charities to form Melanoma Focus in 2012 in memory of his wife, Sheila. He and his team have taken Melanoma Focus to where it is today, supporting and pursuing the interests of clinicians and patients alike. The biannual medical meeting, NICE-accredited guidelines for rare forms of melanoma, funding of research studies, the Melanoma Helpline and the Patient Decision Aid are among the charity’s achievements during this time.”

Mark Harries, Chair of Melanoma Focus said “I am absolutely delighted with the appointment of Susanna Daniels as the new chief executive officer of Melanoma Focus. Susanna brings with her a wealth of experience in both the NHS and private sector and I feel extremely privileged that we have appointed her. The charity will be in fabulous hands as we move forward.”

Simon commented: ‘My career has been varied – service in submarines followed by work in aerospace, telecommunications, management consultancy and international trade. But nothing beats my time at Melanoma Focus, in terms of fulfilment and a sense of purpose. This has been made possible only with the help and companionship of so many wonderful, dedicated people. I shall miss them immensely. In handing over to Susanna, ably supported by Michelle, Claire, Fiona and Jen, I am confident Melanoma Focus is in excellent hands.’

Social Media and Digital Officer
Jen Rush commenced with the charity on 9 September 2020 and said: ‘I come to Melanoma Focus from the education industry, where I spent several years working in marketing and digital communications for schools and charities. I’m thrilled to be able to use my professional expertise for a charity whose work I greatly admire and look forward to raising the digital profile of Melanoma Focus.’

Fundraising Manager
Fiona Prakasam joined the charity on 28 September 2020 and added: ‘I am thrilled to be joining the team at Melanoma Focus during this exciting time. My background is in the charity sector and for the past few years I have worked for a healthcare charity. I am really looking forward to getting started and using my experience to make a difference with fundraising at Melanoma Focus.’

As with all charities, fundraising has proved difficult during Covid. If you are interested in fundraising for us, we invite you to take part in our latest virtual fundraiser; Melanoma 1000. For more information, please contact: fundraising@melanomafocus.com

  • April 2020: Head & Neck Mucosal Melanoma Guideline published

A group of clinicians, nurses and patient & carer representatives began work in mid-2018 to produce a national clinical guideline for head & neck mucosal melanoma. The Guideline Development Group (GDG) was led by Professor Kevin Harrington from The Institute of Cancer Research, with project management and methodological support provided by Nancy Turnbull, the Project Manager, and funding by Melanoma Focus. Work on this project is now complete. For further details follow this link and for the guideline documents go to the resources page.

GDG patient representative member Gillian Paterson commented:

‘As a patient who was diagnosed with sino-nasal mucosal melanoma 3 years ago, the new guideline information leaflet for patients and carers would have been so helpful to me and my family, had it been available to us when I was first diagnosed. In particular, it would have provided us with accurate information about this rare condition and would have given me the confidence to ask informed questions about the options for treatment and how my condition should be monitored in the future.’

Professor Kevin Harrington said:

‘Head & Neck Mucosal Melanoma (HNMM) is a rare condition that can be devastating and life-changing for patients, as well as for their families and friends. However information about the disease is scarce and mostly based on experience of melanoma in general, or of the common types of cancer that involve the head and neck. There have been very few randomised controlled trials that involve patients with HNMM when compared with melanoma affecting the skin. Therefore, there is only a small evidence-base with which to work. In the face of these challenges, the GDG was forced to draw on evidence that came almost exclusively from observational studies. In reviewing and evaluating these sources, NICE-accredited methodology in the form of a series of PICO questions was used to impose the necessary scientific rigour on the process.

‘The product of these exhaustive deliberations – the HNMM Guideline – will endure for many years and will be updated regularly under Melanoma Focus auspices. It will help clinicians in the UK and beyond to understand how to diagnose and treat this often deadly disease. These conclusions are also intended for use by patients, with a lay version written in non-scientific language produced to accompany the main document.

‘Especially in a situation where there was a dearth of hard scientific evidence, the skill of the GDG members was paramount – both in interpreting the limited data and in drawing on their own clinical experience of treating people suffering from this disease. The members of the group gave freely of their time in a complex task that took them away from their already busy working lives. They did this generously and on an entirely pro bono basis, aided by valuable input from patient and carer representatives.

‘I wish to record my thanks to all those involved – clinicians, nurses, patients, as well as to the many organisations and individuals who contributed their wisdom and knowledge in reviewing our findings during the consultation process. I also wish to extend my thanks to the team at Melanoma Focus for having the vision to commission these guidelines and for its support in facilitating meetings and during the process of drafting the guideline documents.’

  • March 2020: Further evaluation needed for smartphone-aided skin cancer diagnosis

Skin cancer is one of the most common cancers in the world, and the incidence is increasing. Could skin cancer detection be transformed by innovative technologies such as digital medicine and artificial intelligence? Dr Fiona Walter (Principal Researcher in Primary Care Cancer Research at the University of Cambridge’s Primary Care Unit) suggests a cautious approach is needed before these innovative technologies can be used safely in the community and in primary care, based on a group of recent studies and reviews.

Smartphone apps providing the user with an instant assessment of skin cancer risk are widely available. The latest systematic review, published in the British Medical Journal, showed variable and unreliable test accuracy for all six apps reviewed.

An alternative use for smartphone apps could be to prompt patients to have a timely consultation with their GP. In JAMA Network Open, Dr Walter and colleagues report an NIHR-funded randomised controlled trial of a commercially available smartphone app set in primary care in the East of England. In this trial of 238 participants, the study team found that there were no significant differences in skin consultation rates or measures of skin self-monitoring in the intervention group.

Dr Walter’s Comment in The Lancet Digital Health also explores smartphone-aided detection of skin cancer and concludes that only once validated should these algorithms be incorporated into smartphone apps for patients or clinical decision support for primary care practitioners. Read her blog in full.

  • January 2020: NICE recruiting for melanoma guideline committee

The National Institute for Health and Care Excellence is recruiting committee members for the NICE Guideline Committee on Skin Tumours, including Melanoma: assessment and management. It is seeking people in the following roles:

  • consultant dermatologist
  • consultant histopathologist
  • consultant medical oncologist
  • plastic surgeons
  • maxillofacial or head/neck or general surgeon
  • consultant radiologist
  • 2 clinical nurse specialists
  • GP
  • lay members

plus the following co-opted members to attend a select/smaller number of committee meetings:

  • paediatric & adolescent oncology consultant or paediatric & adolescent CNS
  • pharmacist
  • consultant in palliative care

Please go to the following NICE websites for further information:
Healthcare professionals – https://tinyurl.com/ubetqgg
Lay members – https://tinyurl.com/v77q96o

  • January 2020: Sentinel Node Biopsy Guideline – publication

The sentinel node biopsy (SNB) surgical procedure has been used in the staging of melanoma patients for the many years. However, in the light of fundamental changes in the management of melanoma and the findings of recent clinical trials, it had become clear that there needed to be scrutiny of the role of SNB in patient prognosis and treatment, as well as the benefits or otherwise of completion lymph node dissection (CLND) following a positive biopsy of sentinel lymph nodes.

A group of clinicians, nurses and patient representatives met at the Melanoma Focus office in Cambridge in 2018 to debate the issues and reach a consensus on SNB and related issues. Their report was released later in the year, summarised by 11 recommendations in the form of a Consensus Statement.

The guideline has now been published in The Journal of Plastic, Reconstructive & Aesthetic Surgery (Volume 73, Issue 1, January 2020, Pages 36-42). Follow this link for the online article or this link for the PDF version.

On CLND, the group said this ‘should not be recommended routinely for patients who have a positive sentinel node biopsy. Patients deemed at high risk should be considered for adjuvant therapy. A lymph node dissection should be considered for those patients who subsequently present with node ONLY recurrence having failed first line systemic treatment’.

Follow this link to see further details and download the guideline document.

 

 

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