Formerly known as the Myfanwy Townsend Melanoma Research Fund

Melanoma Patient Conference 2018

 

We are proud to continue our annual sponsorship of the Melanoma Patient Conference, which took place on the 22nd/ 23rd June at the Norton Park Hotel in Winchester. The conference is organised each year by Imogen Cheese – herself a melanoma patient, providing information for everyone affected, on the current systems of care, treatment access and support for melanoma.

The conference aims to provide those touched by the disease with the opportunity to learn more about procedures, treatment options or clinical trial availability and also the new developments and findings in this sector.

It is widely recognised that many newly diagnosed patients in the UK are still not getting the advice they need relating to treatment with on-going issues with diagnosis and discrepancies in standards of care. There are patients who do not get access to drug treatments either because of their stage of diagnosis or funding issues and as a result feel alone, isolated and uncertain. This  is something the conference looks to address.

Supporting the community

We took a stand at the event to showcase our work, specifically our Watch Your Back! campaign to delegates. We sat alongside the teams from Melanoma UK and Melanoma Focus, creating a solid display of how each charity is working hard and smart to work in synergy to deliver their own powerful messages, creating impact on all areas of the community. 

Michelle Baker, Gill Nuttall and Diane Cannon, proving ‘unity is strength’

This was a great opportunity for delegates and charities to catch up, understand concepts, sign up, connect and discuss how their support and charities working together to benefit everyone, from prevention to family support.

The programme – day one

A wide range of medical professionals were invited to take to the stand to discuss these and lots of other issues to help answer questions and improve understanding, all united in the quest for better outcomes.

After an introduction by Imogen Cheese, Dr James Larkin and Dr Paul Nathan kicked off the conference discussing terminology & jargon associated with melanoma and news of the latest trial and trial standards.

Talk around the key topic of trials continued into the afternoon focusing on partnerships, philosophy of trails (decision making) and a very interesting speech by Dr Pippa Corrie on sequencing and treatment breaks.
The conference aimed to be interactive, with lots of panel discussions, a quiz and audience questions creating understanding and acknowledgment for all areas of the melanoma community.

The Melanoma Fund is focused on prevention, protection and early detection, with this being the main objective of our two major campaigns, Watch Your Back! and The Outdoor Kids Sun Safety Code. So interestingly the day concluded with a speech by Prof Julia Newton-Bishop who talked about the inherited risk of melanoma, looking in particular at the redhead gene.

Dr Newton Bishop with melanoma patent delegate, Mel Jones

Due to the interest in this, Prof Newton-Bishop, summarised her words in a post on the delegates Facebook forum.

“I presented evidence that sunburn causes melanoma so the imperative is to avoid sunburn, even just ‘going pink’. That if you or your family have red hair or skin which burns easily, then I see no way of exposing your skin to the sun without a risk of burning and I would say cover up, and wear potent sunblock: particularly those made for children with high SPF and 5 stars UVA protection.

Take modest vitamin D supplements as suggested by the SACN (400IU per day). This dose of vitamin D would need to be adjusted if you started to eat lots of fortified foods eg fortified cereals or fortified yoghurts.

That if the general public or family members who have darker skin, they don’t ever burn, and they don’t have lots of moles, then sun exposure is probably good for them provided that they don’t burn.

That if you have skin which is somewhere in between: skin that has burnt but only on holiday, then there is an argument in favour of slow moderate sun exposure so long as you don’t burn. I said that you have to know your skin is what you need to do.

That sunbathing is associated with melanoma is probably because people expose skin which is not in any way used to the sun, to sudden intense sun exposure which cause profound inflammation which is sunburn. This sunburn damages the DNA in the skin and suppresses immunity and this double whammy is what the evidence suggests might be the problem.The same damage can be done on a bank holiday trip of course and for that reason “vests” which leave shoulders vulnerable so not seem a good idea to me.

I did not say but maybe should have, that occupational sun exposure undoubtedly causes non-melanoma skin cancer even if there is no evidence that it does cause melanoma.I also said that I hoped to be in my garden this weekend wearing a hat and sunscreen on my nose. I did this and had sunscreen on my arms but was outside a long time. I expect that over the summer I will develop a ‘subtle’ tanning of my forearms and lower legs and this I would say is what is likely to be “healthy”.

It is crystal clear here that the message from Prof Newton-Bishop is avoid sunburn.  This is still the most crucial advice and words we mirror in all our campaign work.

After a lively dinner, Imogen presented a Melanoma Awareness video as a gift from us, the supporters of this event, to attendees. This can be found HERE .  A fantastic video that creates a greater understanding of melanoma, designed to be shared by us all.

Day two

Living with melanoma and other forms of cancer presents problems that those unaffected know nothing about. From anxiety, to understanding palliative care, from making big decisions on what treatment or trials to face, to fertility and starting a family after melanoma and treatment. These issues, plus dealing with recurrence and facing uncertainty of what comes next was excellently covered by speakers including Dr Rubeta Matin, Brad Groves Deputy Operational Lead NHS England, Peta Hughes CNS and Rebecca Healey.

The conference concluded with a working group session to discuss the various projects and initiatives taking place in the UK to help raise awareness of melanoma with charities providing  a round up on their current work.

Says Harry Townsend, Founder and Chair of the Melanoma Fund; “Congratulations to Imogen for having organised once again this wonderful annual conference, bringing together people and organisations in raising awareness of melanoma, as well as receiving updates on progress in finding a cure for this terrible disease, from experts in the field.”

We are looking forward to reviewing and sharing the Melanoma Patient Conference 2018 highlights and sharing these with you on this platform.

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