Every Day is World NET Day!

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.

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 NETs benefits but these things can quickly be forgotten outside the rather small world of NET patients, specialists, supporters and advocates.

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 but they tend to be the big most common ones. If we want to get better known in the community, we not only need new and better messages and campaigns, we 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’s rather easy for me as I sit in my chair doing my bit – but nowadays as my social media influence spreads, 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 again and again.  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 two 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 want new audiences and ones who will stick with NETs instead of just liking a tweet on November 10th.  This is what the NET 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 NET patient organisation, I know they work very hard.  This is about the out of date and incoherent strategy.

Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD MP in the UK Parliament
Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD (now Sir Desmond Swayne) MP in the UK Parliament

Although I woke up on November 10th after my surgery in 2010, I only really woke up to (so called) NET Cancer Day (the event) in 2014 where I and others met and lobbied our respective Members of Parliament at a NET Patient Foundation sponsored event.  I was also honoured to lobby side by side with my surgeon (Neil Pearce) who at the time was one of the Medial Trustees for the Foundation.  I felt that activity made a real difference and I was so enthused by this event, I decided to step up my own campaigning activity, initially using my blog to push and push for more recognition of our disease. Attracting the notice of politicians is a good awareness tactic as long as the foot remains on gas peddle.

When I consider the PR campaigns of other cancer types, I admit to being a tad envious. For example in the UK, breast, lung, bowel and prostate cancers probably have more awareness ‘value’ in a single week, than NETs get in a single year. However, these are the ‘big 4’ cancers and as a consequence attract a lot of support (and therefore resources) and are backed by government public health campaigns (e.g. in the UK, the ‘be clear on cancer’ campaign covers most of these cancers).  OK, they have a lot of resources but one thing I see across the board in these campaigns is the lack of icon adulation you see in NET awareness – rather they focus on firmly on PEOPLE and I  believe that is part of their success.  

When I suggest to ditch the animal analogies, people say to me “what icon would replace it”. I simply say “why you even need to replace it” as we’re talking about adopting a coherent strategy not find a new symbol for a football team. By the way, name another successful cancer strategy using an animal as their ‘cover page’.  Spoiler alert, there isn’t one.

Because Neuroendocrine Neoplams (Neuroendocrine Tumours and Neuroendocrine Carcinomas) are a less common disease, the necessary ‘clout’ needs to be as wide as possible and this means international efforts to supplement national campaigns, particularly for awareness and recognition.  But the strategy needs to be coherent, effective and up to date. Of course, we need to get patients on board because patient stories are vital, particularly (and accurately ….) in the national news and TV. Resources (people and cash) are always going to be an issue and some high-profile patients or ambassadors would be extremely useful but they tend not to want to get involved.  Read my Human Anatomy blog to understand more about the effects of this issue.

I strongly believe we need new audiences – nationally and internationally.  To be more attractive to the ‘outside’ and new audiences, we also need a convincing and compelling ‘line’.  By ‘line’ I don’t just mean an icon or a phrase, I mean a whole ‘PR’ package. It’s very difficult for rare and less common cancers to get high-profile and continuous publicity (sometimes, to be rare or less common is to be ignored).  Therefore, this ‘line’ needs to be something that captures people’s imaginations and persuades them to be associated with the cause. It also needs to avoid being too ‘introvert’ by using oblique, confusing, outdated, single issue icons conveyed by what are essentially memes and which are only liked and shared by patients.  It also needs to be accurate, for example we have to stop calling Neuroendcorine Neoplasms rare because they are simply no longer rare.  

New audiences means new thinking ….. different thinking.  One of my methods is to increase the audience reach by forming relationships with non-NET organisations including physicians.  Some of this is extremely hard work. For example, the 2016 WEGO Health Awards took a considerable amount of personal effort and time and ditto for 2017 and 2018. However, there’s a lot of new audiences out there now hearing about NETs that had never heard of the disease until I was able to use the platform of these awards.  It’s worth it.  Here’s a statement from the CEO of WEGO Health:

Jack WEGO NETs

My animal free blog site hit one million views in 2019 and I’m a relative newbie.  So perhaps there is another way?

When I set my blog up on 29 Apr 2014, I never imagined for one second it would be anything other than an obscure and niche site getting a couple of hits per day. I’m therefore really grateful to those who are supporting me including my most recent followers. It’s your support that inspires me to write the posts and then offer them up as awareness messages or simply words to help patients. Now, not a day goes by where I have not tweeted or posted something about Neuroendocrine Cancer.

Along with the antique term ‘Carcinoid’ (a huge obstacle to accurate awareness), we also need to ditch “NET Cancer” because “Neuroendocrine Tumour Cancer” is plain wrong and I’m making efforts to adjust my own sites to migrate to something more sensible.

and so on RonnyAllan.NET, Every single day of the year is World NET Day

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

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