What's the story?

[Andrew-NRAS]

A little over a month has gone by since I took on the role of PR chap at the National Rheumatoid Arthritis Society and I think I’m finally starting to get a better understanding of what rheumatoid arthritis actually is. Although in all honesty my knowledge to begin with was basically zero so even just learning to spell rheumatoid constitutes a better understanding. Still lots to learn!

I certainly don’t think I was alone in having a limited knowledge. I might be wrong but I suspect it was no worse than the vast bulk of the population. When I told people I was joining NRAS, many of my friends assumed I was joining the National Rifle Association (possibly some linkage there from my old MoD days). These issues combined are perhaps the biggest challenge we face – very few people know what RA really is or who NRAS are. We need to raise the awareness of both, so hopefully a bit of effective PR can help achieve that.

But what exactly is PR?

If you are looking to buy a new car and the dealer tells you that the nice shiny red car in front of you is the car of your dreams, that is advertising. Advertising is what you say about yourself and the service you provide.

If the dealer tells you that based on your profile you need a nice shiny red car and the one in front of you is the very car, that is marketing. Marketing is looking at what people want or need and then satisfying that desire.

If you walk into the dealership and tell the dealer that you’ve heard he has the nicest, shiniest, reddest car and you must have it, that is the result of public relations. While advertising relates to what you say about yourself, public relations is managing what other people say about you. Okay, so to be more accurate public relations is ‘trying’ to manage what others are saying, of course there are no guarantees.

The purpose of PR is to inform, educate, persuade and encourage discussion.

It was great to see so many NRAS volunteers at the Coordinators Conference and although I didn’t speak to everyone I did get to hear a lot of individual stories that are filled with inspiration and encouragement. We have some amazing stories to tell; stories that will inform, educate, persuade and encourage discussion. Unfortunately it seems that many of these stories often go unheard.

Hopefully this is something we can change soon.

In the meantime the big story is that our intrepid adventurer is fast approaching the end of his journey. After nearly 100 days covering 2600 miles, Dr Martin Lee will be paddling into the Surrey Docks Watersports Centre (London, SE16 7SX) on Friday 6th July at 2pm. Do come along and support him if you are available. You can be kept up-to-date on his travels by visiting his website at martinkayaking.co.uk.

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Hi Andrew - I hope you manage to do a really good PR job for those of us with RA. It is rather daunting when so few people know what it actually entails. I find it easier to tell people I have Rheumatoid Autoimmune Disease now (if I'm walking with a stick or have splints on and they ask me) because otherwise they just make comments about how I look too young to have arthritis.

If it's hard for me at the age of 49 then what must it be like for the young ones with RA? I'm amazed at how much coverage other diseases get compared to the inflammatory arthritis's and I think it helps to emphasise the systemic nature of this condition, and how for some it affects the organs and blood too. It seems important to educate people to know how painful and disabling it can be and also about how powerful and potentially toxic the medication that most of us take actually is. If more people knew what a diagnosis of RA actually means then there would be so much less trouble in the workplace for sufferers and also for friends and family to take on board the implications.

I was trying to explain about RA, Lupus and AS to someone from my local BBC radio station who has covered cancer, diabetes and national falls awareness week as well as Crohn's and MS. He asked if there's a special week for arthritis? - I'm sure there is probably but not sure that enough people know about it or that inflammatory arthritis gets enough coverage compared to Osteoarthritis and the elderly?

Anyway good luck! TildaT

[Andrew-NRAS]

I think you've raised some important issues there. A lot of people I've spoken to don't like to use the word 'arthritis' as people just assume they have this old person's disease brought on by wear and tear. Also there is clearly a lot of frustration when people try to explain what pain they are going through with RA and get the response "oh I get a bit of that in the morning too."

World Arthritis Day is on the 12th October and we can use this to help promote our cause, although there is the likelihood that RA may yet again get overshadowed by OA.

[LuckysJoy in reply to Andrew-NRAS]

Hi Andrew, I may only suggest to read our blogs, they represent the daily life and struggle with such an awful disease, and you may be able to empathize with our conditions, and how it affects u daily, we do share on the site health unlocked. also if you look at my recent questions and blogs, I am attempting a pro active support group in my local Penwith Area, and am welcoming assistance from other members on the site as well as Maime on the NRAS site, If you would care to read my recent questions and blog, or anyones for that matter, I am sure you will get plenty of Ideas and understanding, Best of Luck in your new position, and Please keep the Fight alive ((HUGS)) Cyber

Lisa

[Andrew-NRAS in reply to LuckysJoy]

Many thanks for that and I do make sure I keep an eye on Health Unlocked just to see what people are saying, what the concerns are (as well as the positive stuff) and what we can do to help.

Good luck with your support group and I'm glad NRAS and Maimie have been able to join the site members in assisting you with it.

[allanah]

Hi Andrew

Well you have already started your PR job very well as you have informed and educated me on the differences surrounding marketing, advertising and PR, I thought they were all the same!!

Also one thing you will find on this site, is us persuading and discussing topics surrounding autoimmune disease and RA in particular, so you sound like the right guy for the job!!!

It would be great if you achieve your goal to inform the general public about RA and that it is not just arthritis affecting our joints, its the tiredness and fatigue also. I also feel there is a huge consensus of opinion among RA sufferers that changing the disease name would be more realistic. I recently visited a consultant about spinal problems and had to tell him about RA as he really had no idea why I was using crutches and hand splints. He was honest and told me he didn't know RA could be so severe. So I am sure your learning curve will be as steep as the consultants.. as you started at zero!

Great to have such a good team working on our behalf and good luck.

Axx