We are proud to say that this week we attended our first meeting of the Melanoma Taskforce at Portcullis House, Westminster. Anna White, on behalf of the Myfanwy Townsend Melanoma Research Fund joined the group, which was set up to look at ways of improving the provision of melanoma care in the NHS.
Says Anna; “It was a pleasure to finally meet Sian James the MP who set up the Taskforce in the beginning. Sian was recovering from an operation and hadn’t been expected. Pauline Latham MP, who had lost her own brother to melanoma several years ago, was going to be taking the chair in Sian’s place.”
When researching the Melanoma Taskforce we were told by Sian’s office that they were initially inspired after noticing streams of teenagers passing their Swansea office and wondering where they were going. It turned out that they were using a coin operated sunbed and although it was illegal for them to use a sunbed there were no controls in place to limit who used them. Seeing all these young people so unaware of the dangers of melanoma was the catalyst for her and the group was set up.
Around the table were a range of people directly involved in melanoma from charities to skin oncology specialists and Bristol Myers Squibb who produce one of the NICE approved melanoma drugs.
We were one of the first to be shown the newly completed Commissioning Toolkit which can be used by healthcare professionals in conjunction with other national guidance materials to improve the delivery of melanoma care on the ground. This will sent out shortly.
Anna informed the group of the changes that we are making here at the Myfanwy Townsend Melanoma Research Fund and briefed them in on our campaigns and focus for the future.
This was then followed by a number of lively discussions including the question of ‘are patients being let down by GPs who are lacking in knowledge and in some cases indifferent to the seriousness of melanoma.’
We would say that some of the patient feedback we have had would suggest that this can be the case. ‘Change your GP’ was the no nonsense advice from Jenny Geh, Plastic Surgeon in Skin Oncology, Guys and St Thomas’. She suggested that you don’t delay if you are being refused a referral for a suspicious mole or lesion, and unless you chose to go privately, you have to get a GP referral.
Another very interesting point was the big increase in medical litigation for misdiagnosis in the case of melanoma. GP’s are being sued in ever increasing numbers, there was talk that we won’t see a serious mind shift in GP training until the insurance companies see a significant volume of law suits, and enforce a training stipulation on GP’s for melanoma.
From a funding perspective Dr James Larkin from the Royal Marsden, expressed continued frustration at the lack of patients enrolling in clinical trials, he suggested that a lack of understanding by patients and a hesitance by clinicians was causing this. Roche and Bristol Myers Squibb both produce drugs widely in circulation for the treatment of advanced melanoma. This inequality in access is not a funding issue but seems to be driven by localised factors.
In terms of looking at areas that are being overlooked it was suggested that men were highlighted as a problem issue because they are less likely to visit their GP, when they do go symptoms are often very advanced and if they are not referred they will often let a condition go too far before someone finally picks up on it, greatly reducing the chance of successful treatment.
And then all too quickly the allotted time was over and the group disbanded. We were particularly keen to talk to the Teenage Cancer Trust as we are launching ‘Outdoor Kids’ our initiative targeted and children and young people. We had a brief chat on the way out and agreed to talk more! The Melanoma Taskforce website will launch in the autumn, and we’ll all look forward to this as another way to help get the message out there.