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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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I know we've had discussions around raising awareness of rheumatoid and I've had a couple of ideas... They're still in my head and not yet down on paper, and to get to that I need to find out what peoples perceptions are when they hear the word 'arthritis' This is where you come in, and I wondered what questions you would ask..... Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland Read my blog - Helly Copeland
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Which person has Rheumatoid arthritis?
a) Amy who is 16, just doing her GCSEs
b) June, aged 66, going on a cruise.
c) John, aged 46, going to work in the car.
d) Sadie, aged 35 with 2 children under 5.
e) Jamie aged 21, in the middle of his university course.
ANSWER- They all do....
What is the most common age to develop rheumatoid arthritis?
Can you tell by looking at someone that they have Rheumatoid Arthritis? If so- how?
What do you think most people with Rheumatoid suffer the most with? Why?
Did you knew that rheumatoid arthritis was an immune system disease that has life threatening complications?
Did you know that early diagnosis and treatment can slow the progress of joint destruction in RA patients?
Do you know someone with rheumatoid arthritis?
At your local hospital the wait to see the rheumatology consultant is 9 months is this a) acceptable b) not !
Would it be helpful to know that rheumatoid came under serious immune diseases rather than the same category as osteo (wear and tear) arthritis?
We are starting a campaign to have rehab beds and inpatient short term treatment beds re opened this year- can we count on your support?how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Stooped old lady with nobbly hands and walking stick...
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Did you know that RA is a cinderella service?
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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Oooh thanks for those... I've just got 2 questions left on the survey.... What do you mean by cinderella service priory? Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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If you are elderly, would you expect a young looking person to give their seat up for you without knowing if they had a 'hidden' disability? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
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IS it curable?
Is it to do with the immune system?
Is it catching then?
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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I've put together a short survey for anyone to complete.... I'm basing it on them not having any true knowledge of rheumatoid... Have a look and tell me what you think..... http://www.esurveyspro.com/Survey.aspx?id=f4043af4-a0b5-476f-b570-d6c811c0aeb3Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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I like it Helly. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 235
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Its very good!! 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Helly, this is fantastic!!! BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Brilliant
Can you get all members of the Government to complete this please?......... and the people that say yes or no to DLA........ and GP's............ and all personnel departments of every business in the UK ........... and that person last week who said "Rheumatoid arthritis? oh but you look so well, anyway did you hear about ........................... I'm sure all of the above would fail miserably in answering the questions.
Good for you for trying to raise awareness.
Jackie
xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 335
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having a nine year old i agree with a lot cause people think you kidding when they ask what they got they just assume it an old persons illness
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Very good! May I ask a question? Why did you omit the word rheumatoid for questions 1,2 and 4? Just wondering!
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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On 1 & 2 the main thing was finding out what experience of arthritis, of any kind, people had... whether they have it or know someone with it. For question 4, I think I simply forgot to add it but I think the overall outcome, and going by the results, is that people see arthritis of any form as an old persons condition. The image types that are coming up will certainly help in trying to dispel 'myths' I know some of you are interested into why I am doing this..... It was an idea that popped into my head because we don't often see adverts about RA and who it affects. There isn't enough funding to commission one and to honest, I'd prefer funding to go towards supporting other people who have RA. So I thought I would create a short advert that will show pictures of people of all age groups. The advert will ask what they have in common... and then it will reveal they all have RA before giving a few facts on RA. It will be a simple advert but hopefully getting the message across and raising awareness. I'm hoping a couple of my lovely contacts will give me some advice and direction. Once I've put it together I want to share it with you all for feedback and then it will just start off on my youtube page. The survey is to simply gage peoples perceptions.. for example one response was the image they had of RA was a rusty deformed joint. Its those perceptions I want to quash. Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I agree that the survey is good BUT I really do wonder who would bother to either answer it or take a close look at the advert on youtube? Most people are turned off by the very mention of arthritis, rheumatoid or not. It's such a huge problem and I applaud you for "having a go". In addition to any surveys etc, I still think that word of mouth is an excellent way to communicate - so how about (as I said before) getting into hospitals, asking if you can speak to the patients group forum at your local surgeries, or even taking Helly's survey into hospital clinics? Get onto your local PCT forum (it's wonderful how you can influence Chief Execs etc by doing this - I know from experience) and keep on and on until you get some response - both in regard to treatment and spreading the word!
Love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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I think it's definitely worth a go on You tube.
The most bizarre things can really take off on there.
I'd say go for it Helly!
Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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jeanb wrote:Most people are turned off by the very mention of arthritis, rheumatoid or not. The very reason why things need to change.... I've worked with PCT's, charities, media etc... arthritis is not considered glamorous or sexy as the media so lovingly put it. The mere fact that media get the likes of Aged Concern on to discuss the heat or eat option when we're hit by a cold snap says it all. Word of mouth is brilliant when it works... but people are soon put off when they try to explain arthritis and are met with the usual you don't look old enough to have that, or my nan has that. There are so many different types of media available nowadays that it makes sense to utilise them. Facebook, Twitter, YouTube... It reaches corners of the world that other ways don't. It may not reach the same standards as Susan Boyle mania did but its a media I'm familiar with hence why I'm researching peoples perceptions. I can but try...... que sera, sera Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopelandRead my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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You're right Helly.
It's the people who don't have RA that need educating and not many of those people will see posters or leaflets in a hospital waiting room.
Younger people could get the message from You tube, facebook etc and grow up with a better image of RA from finding facts on there.
It could also help with fundraising as people will give more generously to a cause they know something about.
Doreen xx
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