Opinion:

In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn’t really do that much for me.  Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery.  Read about this here – I even woke up on November 10th after major surgery. 

You’ll note the title of this post is “World Neuroendocrine Cancer Day” and that is because (so called) “NET Cancer Day” is not good awareness. It’s a terrible joining of cancer words and does not make sense as there is no such term as “Neuroendocrine Tumour Cancer”.  And if we use just “NET” then in cancer classification terms, it can be perceived we excluded the Neuroendocrine Carcinoma (NEC) guys who need just as much awareness as we do (perhaps more).

The build-up to these events normally doesn’t start in earnest until around 3 months prior to 10 Nov. On or around this day, people meet up, patient conferences and support meetings are held, thousands of tweets and Facebook posts are published, people make and eat cakes, and money is raised. I suspect awareness of Neuroendocrine Neoplasms benefits, but these things can quickly be forgotten outside the rather small world of patients, specialists, supporters and advocates.  Tick, we had the special day – let’s do it again next year. 

If ‘N’ is equal to the amount of awareness you can physically do, then ‘N + 1’ is the amount of awareness you need. You can never have enough awareness.  For me, one day doesn’t cut it.  Some cancers have a whole month, some cancers less common than ours even have a whole week or month. If we want to get better known in the community, we not only need new and better messages and campaigns, but we also need to do more than one day!

I’m in awe of those advocate organisations who organise these annual events and the patients who gladly join in to help by giving up their time.  There’s a lot of time and effort required.  It may seem rather easy for me as I sit in my chair doing my bit – but nowadays as my social media footprint has spread to almost all the continents. I’m getting more invites to talk to people outside of our community – exactly where we need the awareness. But it’s true to say that most of my work is online, and that’s a big advantage because we now live in a connected world where there is an almost unlimited reach to a broad spectrum of people ranging from politicians to the worried well looking for a diagnosis. They all have something in common though …. they’re all connected to the internet and looking for information, looking for a feed.  Social media is really powerful, but the message needs to be compelling to persuade someone to read my feed repeatedly.  I guess when you are marketing something on a face-to-face basis, it’s a different ball game but the principles of persuading someone to ‘read your feed’ are the same.

Having analysed 10th November activity for the last few years and the week leading up to it, I think it was pretty much like previous years, i.e. the same old tired old clichés and icons, together with out of date and inaccurate information which patients and patient advocate organisations share between each other.

I don’t want that; I want new audiences and ones who will stick with Neuroendocrine Cancer instead of just liking a tweet on November 10th.  This is what the Community needs too. I’m afraid cartoon animals in the most ridiculous scenarios are not going to attract long term support from outside the community. This is not a criticism of any person working for or fund raising for a patient organisation, I know they work very hard, even although their work is not having the right effect.  This is about the out of date and incoherent strategy.  This cult like approach to awareness has even infected some doctors which I find strange and often condescending as a human being.

I’m fed-up seeing comments on my social media telling me the awareness of our condition is non-existent. On the basis that so called “NET Cancer Day” has been running for 13 years, it’s clear that this strategy is a failed one and we need a new paradigm.