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Services for people with rheumatoid arthritis

Self management

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Transcript

SPEAKER 1:

I have had a number of flare-ups in the last 12 or 18 months; my immediate reaction has been to deal with it through pain management but I have had a couple of flare-ups where that just hasn’t taken the edge off it and it has taken me back to a place of struggling with work and it’s at that point that I’ve made contact with the rheumatology clinic and the difference there has been finding a rheumatology nurse that I can connect with, who now knows me; I’m not just a number, I’m not just a name waiting for the rheumatologist but I can have a conversation with her and she knows a little bit more about me and can give me some guidance.

SPEAKER 2:

I often have flare-ups, it’s more of a daily basis that it happens but no, I’ve tried to contact my rheumatologist nurse – as I say, they often ring back 2 or 3 days later, which is not very effective. Trying to get an appointment with the GP; she actually said ‘you’d best contact your nurse at the hospital’ but they’re not forthcoming quite quickly, so I often just lay in bed and just cry, that’s what I do, there’s nothing I can do.

SPEAKER 1:

Having now had my rheumatoid arthritis for 20 years I feel I’ve got a lot better at self managing and being able to cope with my flares and increase and decrease my pain medication as necessary but that has taken a long time to get to that point. Despite my training as a nurse it’s still very difficult when it’s on a personal level and there are many times when I’ve left it longer than I should have before going and getting professional help - so it does take an awful long time to come to terms with.

SPEAKER 3:

I wish I had got more education about my disease; if I’m more informed I can manage it better and I would not be so frightened with the disease and it would help me to manage my daily life and yes, I wish I had been better informed.

SPEAKER 4:

Last September I went on a pilot scheme; the RA Self Management Programme; it was a course of about 6 weeks, where you met other people with RA, which I found fantastic because I’d never met anyone with it (although there is a lot of us!) and it was really comforting to find people who had the same problems as me. I learnt an awful lot on the programme and especially a lot about how to handle my pain. On the course it was led by a health professional and somebody who actually had RA, which was very helpful to, I think, everybody in the room because you had professional advice and things from a professional point of view but you also had somebody who knew what it was like to have such a horrible/horrible illness to have to cope with. Since being on the programme I feel much more confident and I certainly know a lot more about the drugs and about the treatments you can get and actually how to get the best out of the Health Service for yourself and I think it’s good for people to be much more proactive with their illness.

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