On the 17th June I attended the first ever melanoma patient conference to be held in the UK. Most of the attendees arrived the evening before and this gave people a chance to meet up with friends made through the UK based melanomamates support group and of course myself and Marion Heffernan who had travelled to represent melanoma support Ireland.
There was a jam packed schedule for the day of the conference but we all woke to some really exciting breaking news that NICE had approved the combination of Nivo/Ippi for the treatment of advanced melanoma in England this made melanoma the conference and its organiser Imogen Cheese national news so it was perfect timing to highlight treatment needs of melanoma patients. The news of the approval was greeted with joy by many patients attending the conference as they had been awaiting its approval as a treatment option for themselves.
The opening morning session focused on current standards of melanoma care with presentations by Prof Mark Middleton, Mr Oliver Cassell surgeon, Prof Julia Newton Bishop focusing how things have changed from Chemotherapy to newer Immunotherapy treatments, and the importance of the NICE guidelines in treatment protocol.
The second session of the morning centred on the importance of clinical trials there was audience participation with keypad voting on which option we felt was best treatment for patient case studies, I think the professionals were quite surprised at the level of patient knowledge in the room and left them in no doubt that patients are actively involved in researching their treatment options. The case studies which were presented by Dr James Larkin, Prof Middleton, Dr. M Wheater, Dr. C Barlow and Dr. C Herbert gave everyone food for thought about the complexities of decisions regarding treatment. Dr James Larkin chaired a Q&A before he had to rush off to be interviewed by Sky News about the Nivo/ippi approval as he was one of it’s chief trial investigators in the UK.
After lunch the focus was on communication of patient options, melanoma trends, melanoma task force by Gillian Nuttall Melanoma Uk, how patients interact with their GP by Dr Ciara Kelly Ireland, watching and waiting what it means for patients by Dr Christian Aldridge.
The last session of the day was focused on lifestyle can patients make changes to improve their survival chances. This started with a very interesting presentation by Prof Newton Bishop on supplementing Vitamin D in the diet. Dr Clare Stevenson spoke about the importance of exercise in overall health of the patient. Anne-Christine Moenaert of the Anti-cancer fund spoke about the role of complementary therapies in conjunction with proven medical treatments not as an alternative. Jo Watson spoke of the McMillan living well & recovery package to help patients come to terms with their diagnosis and learn to deal with any ongoing problems.
Plater that evening there was a post conference dinner which provided time to mingle and meet new people at the dinner there were also patient experience presentations by six of the attendees which varied from stage 1 to stage 4 diagnosis it takes a lot of guts to get up on stage and tell your story so I really applaude anyone who does it.
The conference was amazingly well organised by Imogen and her team of helpers it was a huge undertaking for a patient and mother of young children who also works full time and writes a blog http://www.melanomarollercoaster.co.uk. We were all very grateful to her and her team and we hope it will become an annual event. 😊