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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.
We need real awareness not antiquated 1980s ideas
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 Neuroendocrine Cancer UK (then 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 pedal. Neuroendocrine Cancer UK is one of more progressive foundations in the world along with one or two others.
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 Neuroendocrine Neopasms 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 our awareness – rather they focus on firmly on PEOPLE and I believe that is part of their success.
When I suggest ditching the animal analogies, people say to me “what icon would replace it”. I simply say “why are you focused on the icon” as we’re talking about adopting a coherent strategy not finding a new equally impotent symbol. By the way, name a successful cancer strategy using an animal as their ‘cover page’. Spoiler alert, there isn’t one.
Because Neuroendocrine Neoplasms (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. Even in 2023, doctors are still telling celebrities with a pancreatic NET that they have pancreatic cancer. Doctors are part of our awareness solution, so perhaps they can stop patronising us by calling us zebras and start sorting out this type of issue (i.e. see latest WHO published Classification) which is hugely affecting the ability of patient foundations and charity organisations to collect money for the right cancer (and allowing some to collect for the wrong cancer). As I type, the wife of a well-known TV celebrity is fundraising for a UK Pancreatic Cancer organisation instead of Neuroendocrine Cancer UK.
Sharing pictures of animals within the community is not awareness
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. In fact, as an example of that statement, some doctors are now claiming that around saying NETs are rare is actually slowing down clinical research. Moreover, many doctors, patient organisations are now saying NETs are no longer rare – I’ve been saying it for 8 years and starting to feel vindicated, despite being despised by the ‘cancer culture’ section of our community. Some of it is falling on deaf ears and unfortunately the ‘zoology’ section of our community continues to take one step forward two steps back. Neuroendocrine Neoplasms are not rare!
We need something that captures people’s imaginations and persuades them to be associated with the cause
Therefore, this new ‘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 fairly stupid internet memes and which are only liked and shared by patients. It also needs to be accurate, for example we have to stop calling Neuroendocrine Neoplasms rare because they are simply no longer rare.
New audiences mean new thinking ….. different thinking. One of my methods is to increase the audience reach by forming relationships with other cancer and healthcare organisations including physicians. I accept 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 and 2021. However, there’s a lot of new audiences out there now hearing about Neuroendocrine Neoplasms that had never heard of the disease until I was able to use the platform of these awards. It was worth it. WEGO Health is now incorporated into an even bigger patient leader network called Health Union (there is no bigger network of patient leaders in the world). Here’s a statement from then CEO of WEGO Health, now Health Union Chief Innovation Officer:
My animal free blog site hit one million views in 2019, 2 million views in 2022 and am on the way to 3 million as I type. 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’ve made efforts to adjust my own sites to migrate to something more sensible.
……and so, on RonnyAllan.NET and associated social media accounts ……… Every single day of the year is World Neuroendocrine Cancer Day
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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