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Paula-C
#1 Posted : Monday, April 22, 2013 4:33:40 PM Quote
Rank: Advanced Member


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Joined: 12/3/2009
Posts: 838
Location: Nottinghamshire
Just thought I'd tell you what I'm going to do.

My Specialist Nurse asked me if I wanted my name to be put forward for the Patients Group at the hospital. It's a small group of RA patients that meet a few times each year and put forward and then discuss ideas that they think could help the Rheumatology Department run better from a patients point of view........needless to say, she didn't have to ask me twice.

I went along to the last meeting, not knowing what to expect and a little nervous. There was only about six of us there and we talked about various things. Towards the end of the meeting two of the Specialist Nurses came to join us and we then told them what we had talked about. Well, we explored the idea of having some sort of Buddy scheme for newly diagnosed patients, the nurses are looking into that, but the main outcome was to have some sort of display, running in the out patients department for awareness of RA and what it really is.

It's been decided that we we are going to do it week commencing 20th May, for five mornings, very near the doorway into the clinic waiting room. We share the clinic waiting area with orthopedics, it is on the main wide area that services all of the out patients clinics, in fact it is the first clinic you pass, so we should hopefully catch all the passing people going to various clinics.

I've phone NRAS up and they are kindly putting together things to send to me for the display I thank them very much for this and hope that this will be a good platform for patients to be more aware of their existence.

Because the illness is thought to be an old person illness I want to share the following stories. I have managed to just get the article, without the advertising and Daily Mail heading on to A4 paper, going to see about getting them laminated, all of this of course to be vetted by the Specialist nurses, I can understand that, but what do you think?

http://www.dailymail.co....ug-halts-arthritis.html

http://www.dailymail.co....nful-ARTHRITIS-two.html

Hopefully it may help to stop putting us in the "it's only *arthritis*..... you get that when you get old......just take the pain killers".... box.

I've copied a few bits from the NRAS web site and I'm also taking all of the NRAS magazines that I've got, for people to look at (there mine), but NRAS are going to send me some copies of the last magazine for people to take away. The hospital have various leaflets and booklets for us to have.

I also want to do some sort of awareness display during Rheumatoid Awareness Week, it's the last week in June, but the Chairman or should I say woman, wants to get this one out of the way first, which I can understand.

Paula x
Sheila-R
#2 Posted : Monday, April 22, 2013 9:35:47 PM Quote
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Joined: 1/29/2010
Posts: 264
Brilliant Paula both the buddy scheme for those who want it and the awareness stall are great ideas, I wish there had been something like that when I was diagnosed, I spent all my time reading the worst from the internet before I heard abot NRAS.
Hope it all goes well
Sheila
Dorothy-W
#3 Posted : Tuesday, April 23, 2013 6:50:39 AM Quote
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Joined: 9/13/2010
Posts: 786
Location: east anglia
ditto on that,best of luck,dorothy
Kathleen_C
#4 Posted : Tuesday, April 23, 2013 2:20:15 PM Quote
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Joined: 12/3/2009
Posts: 1,689
Location: Durham
Great stuff Paula - hope it all goes from strength to strength!

Kathleen x

Merielpb
#5 Posted : Tuesday, April 23, 2013 2:37:58 PM Quote
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Joined: 10/13/2011
Posts: 62
Location: Cirencester
Yes, I think the buddy idea is fantastic.

The support you receive from everybody on this forum is wonderful & has helped me greatly in some dark times (and I thank you all) but I have to admit occasionally I have thought it would be nice to actually talk to a real life human being!!
Jane.
#6 Posted : Tuesday, April 23, 2013 8:16:49 PM Quote
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Joined: 5/2/2012
Posts: 670
Location: where the sun always shines :o
Smile Good thinking Paula
Turning ra experience/journey into a positive buddy scheme.

Fabulous idea.

When I see my rheumy nurse I enquire to see if I can help. When I was planning to have a baby with ra - they asked similar ladies but no one wanted to come forward and chat to me.

Nras - can you do a piece in your magazine about Paula buddy scheme?
I'm sure I read somewhere nras do a volunteer scheme? I shall have a look on the website.

Jane
Xxx
Maria_R
#7 Posted : Thursday, April 25, 2013 12:38:11 PM Quote
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Joined: 12/4/2009
Posts: 856
What a fantastic opportunity Paula- I hope my hospital will do something similar.

Good luck with it all

Maria
smith-j
#8 Posted : Friday, April 26, 2013 8:04:13 PM Quote
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Joined: 12/3/2009
Posts: 714
Paula

What an absolute wonderful thing for you to be involved in. You can spread the word and put the facts right. There is no one better than a suffered of RA who has been through the onset of symptoms, the diagnosis, treatment and outcome.

Wishing you all the best and I hope my local authority are as forwarding thinking as yours is.

Jackie
xx
Paula-C
#9 Posted : Saturday, April 27, 2013 3:23:31 PM Quote
Rank: Advanced Member


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Joined: 12/3/2009
Posts: 838
Location: Nottinghamshire
Hello

I've got all my bits and bobs in place to take to the hospital, I'm going to email the nurse who's in charge of it all over the weekend to explain to her what I've got and then drop the box off sometime next week at the clinic reception. I've got a 9am appointment on the Wednesday when they are doing the event, so that's going to be my session there, I've also said that I am willing to do another morning if needed. I live only a few minutes away from the hospital and I know that some of the ladies live a long way away. You also have to take into consideration that someone may not be well enough to do it with RA striking us like it does. I am now *cured*, (well, you know what I mean), so I don't mind stepping in at the last moment.

The things have arrived from NRAS....thankyou.....so that's all in the box. I've copied things off the internet so I've got a variety of things to offer. They may not use it all but then again they may. I know the hospital is contributing leaflets and things, so I hope it will be a good display.

I'm not sure if the buddy scheme will get off the ground, the nurses said that they would look into it. It's all the stupid patient confidentiality thing, stupid really if both parties are willing, but we will have to wait and see what happens there, I will keep you informed of developments.

Jayne.....NRAS do have a telephone network of volunteers who will ring you up for a chat about RA. A lady called Helen phoned me when I was first diagnosed with RA. It was nice to talk to someone with RA, someone that understood.

Paula x
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