When it comes to brilliant ideas, Imogen Cheese wins first prize with the Melanoma Patient Conference. The event, held on the 17th June in Bristol, was designed to bring patients and medical professionals together to share information on the current systems of care, treatment access and support. At the same time it provided a voice for patients, uniting a community, with melanoma in common.
The Myfanwy Townsend Melanoma Research Fund was proud to be asked by Imogen, a melanoma patient, to join other likeminded charities including; Melanoma UK, S.C.a.R.F, Melanoma Focus and Sckin to support the event. Further to this, our Communication Director Michelle Baker attended the conference, to meet other supporters and patients and report back. What we gained from this event proved unexpected and priceless.
After introductions by Imogen Cheese, the morning started off with a discussion on the current standards of melanoma care, with key speakers including Prof Mark Middleton talking about immunotherapy, and Mr Oliver Cassell explaining the important role of surgery. Prof Julia Newton Bishop, Professor of Dermatology at the University of Leeds, concluded with a presentation on the significance of the latest NICE guidelines.
After a tea break and networking, the subject turned to clinical trials, looking patient experience, issues, discussing the overall lack of information and guidance at time of diagnosis, looking at what information is currently available and how patients can access this.
Key speakers included Nikki Hayward from ECMC who spoke on the importance of trials, in particular NHS and commercial trial procedures, with oncologists; Dr James Larkin, Prof Mark Middleton, Dr Matthew Wheater and Dr C Barlow and Dr Chris Herbert discussing case studies, incorporating live audience participation, via keypad voting.
At the end of this discussion all delegates were given a copy of the current UK Melanoma Trials portfolio before heading off to lunch and time to network with key speakers.
Mr Ewan Wilson began the afternoon with statistics and how these could be better communicated to patients to provide more options. Dr Veronique Poirier (formerly PHE but now at CRUK) presented a talk on melanoma trends, comparing the incidence between men and women in the UK, revealing how men continue to be at a higher risk.
Gillian Nuttall, founder of Melanoma UK discussed how she works with other charities on the Melanoma Taskforce and outlined the Taskforce 2000 plan for action for skin cancer. Dr Ciara Kelly represented GP’s with her reflection on the ideal GP/patient relationship, followed by a great presentation by leading dermatologist, Dr Christian Aldridge, focusing on ‘watching and waiting’ and what this vital aspect of the journey means to patients.
Session four focused on lifestyle, looking at specific changes patients can make that will improve their chances of survival. These included the following key factors:
• The Benefits of supplements – by Prof Julia Newton Bishop
• The importance of exercise – by Dr Clare Stevinson
• Complementary medicine – by Anne-Christine Moenaert
• Living well and the recovery package – Jo Watson
At the end of the day, the audience were given the opportunity to ask their questions to all key speakers in a session chaired by Simon Rodwell from Melanoma Focus. Imogen Cheese then closed the official programme to a rapturous applause!
During dinner supporters were invited to talk about their campaigns and activities, and it was here where Michelle Baker talked about the Outdoor Kids Sun Safety Code, discussing the new OK Champions campaign, the importance of generating habits in childhood and working with coaches to ensure that they lead by example.
After this key patient speakers were invite to share their experiences, all of which were unique, heartfelt and inspiring.
Not only was the conference professionally executed, it was informative, upbeat and engaging, with a great cross-section of relevant professional speakers. It was also honest and as such we have a better understanding of the problems patients face and have faced right from the start, what it is like to be diagnosed with melanoma, the journey of watching and waiting, all clearly and bravely communicated by key patient speakers.
It is evident that The Melanoma Patient Conference should become an annual event. The melanoma community is passionate and determined and to have an opportunity to unite this positive energy is encouraging and well overdue. We shall certainly be working on how to improve our offering following what we have learnt.
Thank you, Imogen Cheese for successfully uniting a community.
To find out more about Imogen Cheese, read her excellent blog; Melanoma Rollercoaster HERE
For further information contact Michelle Baker at firstname.lastname@example.org