Last week I had a few days of working on the move, as my daughter was home from France and we were wedding venue hunting etc. In the middle of that week I attended a melanoma advisory board at GSK. It was a very interesting meeting with a good cross section of attendees. On Friday evening we attended an event in Liverpool which was run by “Team Claire”. For anyone who doesn’t know, Team Claire is a group of family and friends of Claire Culbert who sadly passed away in December 2013. Claire’s Auntie Diane is now a fundraiser for Melanoma UK and is working very hard getting Team Claire ready for their cycle ride to Poland in September. The event in Liverpool was to kick start Team Claire and was very well attended.
On Saturday evening, we attended an event in Manchester when Rob Illidge took to the boxing ring in order to fund raise for us. The fight was a draw and Rob is now looking for the next event he can get involved in.
This week, Bank holiday Monday started with an email from a patient who needed some advice regarding a GP. It is still quite astonishing how many family doctors are not treating patients’ concerns about moles and lesions with any real regard. There is not a lot I can say to a patient when I get a message like that: other than to go back and create the biggest song and dance that the surgery has ever seen. No GP should ever dismiss a patient who presents with a suspicious looking mole. We all know that we don’t want to flood dermatology clinics with unnecessary work, but more about that later. The only thing I could say to this patient, was to make a further appointment and make sure a referral to dermatology was done with immediate effect.
Tuesday I had a pile of paperwork to catch up on (oh how I love paper work……) and some updates to sort out on the website. We have several events taking place at the moment, including the Team Melanoma Manchester 10K – we have 15 runners in the Manchester 10K taking place on the 18 May. I am taking part myself (the less said about my training the better), Mike and Andy’s 3 Peaks challenge, to name but a few. I am always incredibly moved by the things that people do for us.
On Wednesday I had a couple of appointments in London. The first one was with a couple of journalists. We are doing some work with a magazine in the coming weeks (can’t really say too much about that right now, otherwise it will spoil the stories – but all will become apparent very soon). There are a number of patients and families who are helping with this and they’ve been brilliant – the journalists have loved working with them. They have had their own eyes opened to a lot of the issues that melanoma patients and families face and I think there are a few people in that office who are now thinking very hard about their behaviour in the sun.
Later that day I went to see James Larkin at the Royal Marsden. James is one of our medical advisers and we are currently speaking with the team at the Marsden regarding the funding of some of their melanoma nurses. We are awaiting information from the team at the Marsden and will be moving forward with this in the next few weeks. We will be looking to fund nurses in other trusts also. James gave me a whistle stop tour of his little bit of the Marsden, including showing me where he leaves his push bike that he uses for work! After my meeting with James ended, I met up with Karla, one of the research nurses. Some patients already know Karla. She loves her work and is delighted that we are able to all work together.
This week I also went to Cardiff to meet with Christian Aldridge, our dermatology adviser. Christian is currently the South Wales Deputy Network Lead for Skin Cancer overseeing strategic decision making processes concerning the management of Skin Cancer in South Wales. He has previously been the Skin Cancer MDT Lead at Cwm Taf NHS Trust for a 4 year tenure and currently operates the Rapid-Access Skin Cancer Clinic at Prince Charles Hospital , Merthyr Tydfil, which incorporates a same-day operating list which excises those skin cancers identified in clinic without delay.
Christian believes that any patient presenting with suspicious moles ought to be taken seriously. I asked him about the issue of flooding dermatology clinics with patients who are worried about lesions that are innocent. Christian takes the view that they should be seen – he has a special interest in melanoma and is concerned that patients might be put off pushing to be seen by dermatology because they might feel they are fussing about nothing. He would far rather see a patient in his clinic that he is happy to send away, than a patient who is presenting with a big problem because they’ve delayed seeking help, or they’ve been loathe to push for a referral. Christian is happy to answer any queries that come to us, so that is well that is worth remembering.
Finally, we made a quick appearance on BBC Radio Manchester, following the ASA decision on the Virgin Holidays ridiculous Tanuary campaign. Some of our patients made a complaint about this and the complaint was upheld which as far as we were concerned, was good news. To actively encourage potential customers to send in photos of their “tan lines” was a step too far for a lot of patients with melanoma. Strangely, no mainstream newspapers appear to have picked up the story, so we will carry on using social media to alert the public!
It would be remiss of me not to mention the many patients and families who support each other and our work here at Melanoma UK. We speak to some fantastic people every week but sadly, there are times when we get bad news and this week was one of those weeks. We never forget them.
So, that is a quick overview of Melanoma UK’s week. Any comments, please let us know.