Helloooo everyone and Happy New Year!

Lots of responses since I was last here.....

I do think the path to take is educating people about the condition, educating them that it is not just part of the aging process, educating them that while the damp/cold/heat can affect it, it doesn't cause it.

People have for many, many years thought of arthritis as something you get as you get older... when they get a few aches and pains in the winter they'll comment that they probably have a touch of rheumatism...

If you change the name, people will always ask questions and will always need educating... and as previous posts have said I think the money would be better spent on educating..

Arthritis comes from the Greek word arthritides (arthro-, joint + -itis, inflammation; plural:) Even if I describe it as stills disease or rheumatoid... it is still a form of arthritis... after all there are over 200 types of arthritis...

I've worked with various charities from about the age of 6.. firstly it was ARC and while their main criteria is research, it is also to highlight how it can affect different groups of people.... My parents were involved in that side and I remember going with them to give talks and quite a few people were surprised that it was me that had the arthritis. Next it was Arthritis Care and over the years they have published books like CHAT (Children Have Arthritis Too) and A Day With Sam.. all aimed at raising the profile that arthritis can affect children

The downfall there was the book was only really made available to parents of children with arthritis... I don't recall it being sent to schools, or being made part of a curriculum/school library

Leaflets etc can be sent to hospitals, doctors surgerys, clinics but the amount of literature they get sent from various organisations.. it doesn't always get put on show... Some hospitals now have a patient resource and information centre where patients, families and friends can get information on a number of conditions and this is the place to build connections with, not just the rheumatology team...

Through Arthritis Care, information days were held at hospitals, working with the rheumatology team and the information centre. This then extended to shopping centres, fetes etc when a mobile information unit was acquired and proved very popular. However due to lack of funding and volunteers this venture only lasted a year.

Education can work, and it may seem like its taking forever but my own personal opinion is that some projects seem to be sporadic and not enough publicity is given. I only heard of NRAS through a friend but even then I didn't see a great deal of info around...


Ooh and ETA - have thought of some celebrities with arthritis.....

Kathleen Turner (actress) has RA and has raised the profile in both USA and UK

Matt Iseman (american comedian, actor & host) was diagnosed with RA when he was 31 and recently appeared on the cover of Arthritis Day, raising the profile that arthritis affects men as well

Bob Mortimer (as already discussed) has RA and Iritis

Dave Prowse (actor who famously played the physical role of Darth Vader in Star Wars and also Green Cross Code Man) has had arthritis since he was 13

Alice Peterson (author) diagnosed with RA when 18 and campaigns on behalf of NRAS

Louise Clifford (as already discussed) was diagnosed with JRA when she was 6

Lola Garth (daughter to actress Jennie Garth) was diagnosed with JRA just after her 5th birthday

Claire King (actress - Emmerdale & Bad Girls) diagnosed with RA

As I said before, IMO its not a change of name that's needed but raising the awareness of RA and how it affects all aspects of a person's life.

Distributing printed material to GP Surgeries and Hospitals IMO wouldn't go far enough. Ok, it might generate a few more NRAS members and raise a small amount for funds, but GP Surgeries may only have 1 or 2 RA patients on their records and RA patients attending Rheumatology Departments in Hospitals are probably going to know the basics about RA anyway. Limited space is available in these places, that's probably why cancer, heart disease, strokes, diabetes etc. literature gets priority.

Being a not for profit making Charity, NRAS maybe can't afford to spend too much on printing and postage (the Trustees are accountable for what they spend), only to have some recipients throw the stuff in the bin.

IMO a much wider, national awareness campaign is what's needed, using a high profile celeb with RA. Similar to Fiona Phillips campaigning for better treatment for Alzheimer's patients. Maybe TV and Radio, National newspapers and magazines, bill boards, London Underground etc. could be used??

I've just had the e-news from NRAS.
There is an NRAS appeal going out on Sunday on radio 4 by Pearl from Last of The Summer Wine.
I think it was 7.55am but is repeated about 9pm.
I'll check the details and let you know.

Doreen xx

Funding would be a challenge, but it shouldn't be viewed as an obstacle. Other Charities do similar and so can NRAS, if committed enough.

Charities are sometimes given reduced rates (tax incentives for companies) or given goods/services free and gratis. If a celeb got behind the campaign, maybe they could donate, reduce their tax bill and not charge a fee.

Does NRAS have a press officer, or someone in a similar role? There must be someone who deals with advertising/promotion etc. Other Charities may be able to offer advice on this aspect.

I noticed on TV last night Barbara Windsor is the voice behind children with Muscular Dystrophy, Tesco's Charity. Maybe RA could be Tesco's Charity next year?

Waitrose in Beckenham have 3 chariy boxes about 4 foot high made of clear plastic. They give their customers tokens and then you can elect to chose a charity of your choice. though I think the charities are local ones.

NRAS must have someone dealing with the PR and getting funding - all charities do. After all they have organised the radio 4 appeal. Getting funding I believe can be quite involved some charities just have someone doing this filling in all the forms for 1,000 quid here 500 quic there. Tell you what I am going to dig out my NRAS magazines and have a good read cos probably theres a lot of stuff there about events and news involving NRAS/RA.


Dont forget to give us a plug Carol if you are on telly with Gwok!

Hey Helly,

Pretty good information. I think we should have a thread or section that we can post all these things that promote RA locally and nationally. I think this will help us and our cause. BTW I noticed we have a fundraising thread maybe that can be renamed Awareness and fundrasing and we can set up a thread there? what do you think?

.... but does he have a heart beat Stewart?

Hi Alisha,

thanks for posting your prespective. Theres been a couple of threads on this and we do realise that NRAS is busy raising awareness. I suppose its just that we come across this problem on a daily basis dealing with people from all walks of life. I think that we realise that changing the name isnt the answer but we would like to help NRAS and ourselves by posting whats going on in our area so we can beef up the limited resources of NRAS.

So can we get the Fundraising folder renamed to Fundraising and Awareness so we can start posting what we are doing whats going on in our area and bring any attention to what NRAS is doing as we do bypass the homepage and come straight to the forum.

Many thanks

Mari

Good Idea Helly I started another thread under charities.

Thanks so much for your input, Ailsa.

Maybe if we all make a concerted effort to get literature out to local hspitals (pay them a visit - not stuff in the post), chat to local GP's and get ourselves on hospital forums, we can help NRAS to raise awareness. As Mari said - there is nothing to stop us having a thread to note down our ideas and what we are doing in this regard.

Love Jeanxx