Story on the news about NDPH

Actually, this is something I was thinking about too - especially as this is the decade of pain and the WHO named next year as the Year of Pain, with a focus on women (I know men get this too, but I'm thinking of possible angles). I was handling book publicity in my job, and I could easily get some advice from my PR friends on how to go about getting a bit more notice taken of us.

NDPH may need to be slipped in 'under the radar' as it were, because it's a relatively rare condition and that makes it harder to get publicity since it affects fewer people, but I think the biggest potential campaign (and most likely to work to create public feeling ebhind it) is to focus on an aspect of health interest to the general public ie. medication overuse (and there are articles on this, but there should be more, there should be information on the leaflet in the package in big bold letters - everyone should know that you can get more headaches if you take too many painkillers! I didn't until I got this and I'm educated to degree level, read a newspaper every day, and read incredibly widely - how did I not know this? This is surely wrong!)

The aspect for us as NDPH sufferers may be that leading headache specialists (Silberstein in the US, Goadsby in the UK) talk in their articles about the role of medication overuse having a significant effect on the chronic headache disorders - this is why my doctor won't let me have any painkillers, it's to eliminate any shred of rebound headache. In the article I read yesterday, Silberstein said "NDPH may or may not be associated with medication overuse".

I know the daily or near-daily headache affects only 3-5% of the world's population, which is a tiny amount, and I'm not for a moment suggesting that this constant headache is definitely or probably or possibly caused by all of us having popped too many Neurofen previous to it coming on (or even during if your doctor is letting you have painkillers).

What I'm saying is, for the purposes of publicity, one (and there are others) potential campaign strategy could be to say 'Did you know that if you take painkillers more than two or three times a week, some of your headaches could actually be caused by your taking so many painkillers? And further, did you know that there's 3-5% of the world's population who are busy having their lives ruined with a constant headache - yes, constant, that's 24/7, and yes, they have a headache now - and that leading headache specialists say it may or may not be associated with medication overuse? We just don't know yet because there's no research - hint, hint - and these poor people have to try drug after drug - anti-epileptics, anti-psychotics, not meant for their condition - some of them for years and years... Now imagine if this was you!

OK, ok - it might scare some people (but into what, not mindlessly popping painkillers but thinking about it instead? Maybe taking fewer? How's that a bad thing?) but if it scares them into saying - "Hey, I don't want this to happen to me. Governments, allot some funding, do the research." - then the object is accomplished entirely. And if the only result is a little extra awareness of rebound headaches, that's no bad thing. And it might even scare up some NDPH success stories, which would make us all feel a bit more positive.

The real stumbling block, as far as I can see, is that as patients in a forum, we have very little authority to do something like a press release - the papers will say "Who are you? A group of patients whining that no-one is feeling sorry enough for you? Well, we're respectable journalists and we don't just print anything". If we could get the WHO or the World Headache Alliance or similar to mount the campaign and put their weight behind it it could be done. I don't know how you go about getting them to do that - for all I know this idea of mine is exactly the plan the WHO have and the articles I've seen about rebound headaches have all been placed by PR people working for the World Headache Alliance

Anyway, what do you think? Any PR people among our number that can shed light here? I'll probably come up with ideas for smaller campaigns and other angles as well.

Post edited by: BritChick, at: 12/07/2007 09:59

jz1993@gmail.com

Thanks Mary, but don't get too excited, remember this is a local news feature (though I agree it is exciting and I think JZ has done brilliantly to think of it and get it on there) - it would be good to get the piece on YouTube though, put it on eg. Facebook pages if members have them, try and use this piece as much as possible. Then it's not _just_ a local news feature...