105. Out of the Loop….

I’ve been sitting on this virtual fence for almost 2 months now.

I felt I couldn’t just write a blog to you to say…hey I’ve been busy with work…or had a head wobble over being unwell over Christmas ..I mean talk about boring & mundane! Significant things happened like; I would loose 2 Melanoma friends in a week, or the issues with funding cropped up & annoyed me…or even the latest political dramas that cause worry for patients and medical professionals all over the globe with basic questions on access to care…but still I didn’t blog…


I couldn’t begin to share stuff because I was sitting on a bubble of irritation. Petty frustration. Like trying to find a place, but feeling out of the loop whilst knowing that I am far from out of the loop – I just want it to be perfect and work the way that I think it should work – all of the time….and let’s face it…I have Melanoma….life simply isn’t perfect.

Almost 16 months ago I went to ECCO in Vienna. It was an inspiring conference & helped to drive forward much of my knowledge about Melanoma…but more importantly talks, sessions or even methods of covering presentations helped me to plan for & create the first UK Melanoma Patient Conference.

The world of clinical trials has dramatically shifted in the last 5 years…& I don’t mean that there are new trials available, or the treatments themselves are better…I mean patients are suddenly valuable.

Writing that seems ludicrous – of course patients are valuable, the treatments are all designed to help us survive….and yet…Value seems to mean different things from different perspectives.

Up until recently patient’s voices didn’t matter. Patients were not welcome at national or international conferences that discussed their care, partly because of elitism or perhaps people didn’t realise that patients actually wanted to be involved, want to be heard. Our opinions were not valuable enough.

Obviously if patients want to be heard we need to be seen – we need to have knowledge – we need to share & talk in an articulate & professional manner rather than shouting from the rooftops to ears that aren’t tuned in to that frequency.

The media were all about how everything is now “patient centric”…patients at the heart of their industry. Trials designed with us in mind. At ESMO (another amazing conference) the voices of patients were at times clearer and more concise than any others….and as both a patient and advocate I was there & felt in the loop.

When I created the concept of the Melanoma Patient Conference, my first thought was that there shouldn’t be a cost for a patient to attend.

Having cancer isn’t cheap…there are systems to claim back money in place for expenses like travel costs & parking….but certainly no reimbursement for attending conferences – You might get a grant to cover travel or accommodation…but don’t eat whilst you are there. If as a patient you want to learn and empower yourself…do it at home online or pay for it yourself was the general message. (mixed simultaneously with…don’t Google…you won’t find facts online!)

So I found a way to make it inclusive to all….as in my opinion it should be.

Where possible (work permitting) I attend other events, and Cancer congresses. If I am there, I am learning and visible at the same time. So, I was, amongst many other friends of mine, really very disappointed to find out that I wasn’t going to go to ECCO2017 this weekend.

I could have gone….I was given “free registration” to attend the 3 day Cancer congress. No grant though…Seemingly patients are valuable…but slightly to costly.

So I am out of the loop.

The recent NHS ruling for Melanoma drugs means that many of the latest options won’t be available to patients if they have already taken part in a clinical trial…so there are trials currently in the UK that have issues recruiting patients.

Never has it been more important for patients voices to be heard….perhaps a couple of dozen more patient grants at a huge EU conference attended by thousands would have been a wise move. Patients can bring very useful things to the table too…after all…our loop is other patients…

Conferences are expensive, drugs are expensive, patients are expensive….lives are expensive…