I do have some concerns about the effect working for a change of name would have on NRAS. If they became involved in any campaign, it would, of necessity, take them away from the work of raising the profile of suffers, campaigning on our behalf and all the other wonderful things Ailsa and the team do for us. All their work is planned to obtain better services and treatment for us, whereas a change of name wouldn't advance that one iota. Other people (non medics etc) would possibly gain a better understanding of the disease, but would it actually benefit us treatment wise if people stopped telling us their granny had a touch in her big toe. Don't want to be awkward but for me the most important thing is better treatment, more clued up GP's, more consultant appointments etc and not what we call the disease. OK, so I do get a bit mad if peple say stupid thing, but at the end of the day, it's my treatment that matters and not what friends, or relatives for that matter, think.

I also think there are a lot of aspects of this that haven't been thought through - Who would decide what the new name would be - not us patients, I am sure, and how many committees and how much money would be expended on that aspect alone which could be spent on better treatment? Just some thoughts.

Love Jeanxxxxx

What an interesting thread this is.....
Thank you for that article Amanda xx
I must say I'm now definitely agreeing with Jean - i think the focus has to be on raising further awareness, developing more improved services and generally "bigging up" the profile........
I think NRAS has done SO much good work - already raising so much awareness - that a total name change could be detrimental for financial and marketing reasons and could undo some of the good work already in place.
For example, from my personal experience - the NRAS booklets for employees and employers have each been SO helpful for me - enabling massive improvements to my workplace experience as an employee with a disability and supporting effective development of awareness for my employers re: rights and responsibilities & how it actually is in the workplace for workers with RA.....
i've also have been thinking how very useful this thread has been, its got a lot of people thinking - & hopefully someone from NRAS will be taking an overview..... especially with regards to the comments about getting even more high profile supporters involved to highlight this disease and further develop the already excellent support the NRAS provides....

which leaves me just to say....

Dear Mr Clifford xx
If you do happen to read this if you could perhaps pass on Sophie's and my NRAS fundraising details http://www.virginmoneygiving.com/LIZBUCKLEY to a couple of your contacts we would be ever so grateful... xxxxx

Brilliant Amanda (have pm'd you). The more people who go into GP surgeries, hospital clinics etc with leaflets and NRAS posters, the better.

I know we can get posters and leaflets to give to our surgeries and hospitals but why haven't NRAS already done this?
Surely they should be sending them out to hospitals and health centres without us having to ask for them.
I only found NRAS through a web search after I'd had RA for 7 years, before that I didn't have computer access but I had never seen any posters or leaflets either.

Doreen xx

Hi Corinne, i read the 60 sec guide to RA, its from rheumatoidarthritisguy.com
I loved it

jenny
xxxx

Hi
I know guys st thomases has nras booklets,leaflets,phone line everything its where i heard about it,mentioned to rheumy nurse pleased id joined and go also new about it very pleased also.ive also seen arc at local libary,gp surgery aswell.
il take look re nras at gp.
been spreading news about nras with church close friends first then upwards next.

yes raise awareness best,changing name confusing to those who maybe starting to hear or RA.
melly

They don't seem to throw the ARC stuff in the bin though do they?
You see that everywhere.

Doreen xx

Hello,


I have to agree with all thats being said, Instead of reinventing the wheel we would be best served to help ourselves by working with NRAS to get all this good stuff of highering the profile of RA as well as raising money cos with all the cuts you would imagine they are suffering too in this climate. Yes people dont understand fully and we really cant blame them as they havent much experience of RA if they or a loved one dont have it.

NRAS spent time and money organising a meeting for us last year to help us fight out corner with the PCTs to get the right type of treatment from swimming lessons to supportive footwear and feedback on our care.

I second this local club business as that can give us organisaiton and strategy and we can roll this up then to a national level.

I have to say that my two nearest clubs are charring x and sidcup. I have gone to charring x when theres been a talk but I feel a bit hesitant to go to these meetings but probably feel less so if there was something organised but not too organised (if you get my drift).

I am sure NRAS would be keen where there is an need that a local club is created to fll that need. There must be a list on the website somewhere with all our local clubs listed. Though I think perhaps someone could possible suggest to NRAS re Max Cliffords' daughter incase they have/ havent already been in contact with the.

Regards

Mari

Hi all, I tend to agree with raising the profile of RA and circulating information through hospitals and surgeries/health centres etc. I also believe that NRAS should remain independent from research bodies, which are usually backed by drug companies, and are likely to have conditions attached to receiving grants from them.

Love,

Barbara
XXXXXX

On the main NRAS website, click on "Help for You" and then "Regional Groups". They are all listed here.

Thanks Jean didnt know that going to have a look now

corinne x