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Services for people with rheumatoid arthritis

Support and information

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Transcript

SPEAKER 1:

Having got a tentative diagnosis of rheumatoid arthritis, I went home, bizarrely with a degree of relief, because actually somebody had named what might be going on for me and in a sense that gives you some partial closure because you’re kind of thinking ‘at least there’s something wrong with me; I’m not going mad!’ but beyond that I actually hadn’t got a clue and my immediate reaction was to go on to the internet, to find out more, research, read some books, read some materials but it was very much driven by me (rather than the rheumatologist or anybody else saying ‘if you want to know more about what this might mean, you should look at x’). On that first visit when I saw the rheumatologist, apart from giving me a tentative diagnosis, I didn't receive anything else from him; I didn't get any support materials or otherwise. What would have been absolutely fantastic at that point would have been a point in some direction and for me, something like ‘you should have a look at NRAS [for example] because if it is rheumatoid arthritis there’s a lot of information on their website and they have support groups that might be able to help you’. To have that kind of initial support, where I could talk to somebody just about my symptoms, that suggested I wasn’t going mad, I wasn’t a moaning-minnie, that there was something genuinely wrong with me, would have been absolutely fantastic and that just wasn’t there.

SPEAKER 2:

When I do experience a lot of pain there’s no-one I can turn to. The only time I find the staff are very helpful is at the point of contact, when I go to my consultation, both the nurses, who I have a regular visit every 3 months, as well as the consultant, I experience a lot of pain and I don't know who to turn to and when you’re in pain, all you want to do is just to get some sort of help, you’re not in a thinking motion at all. I often live on my own, I live with my mother at the moment but when I was living on my own you don’t want to phone your friends or anything, there’s no-one to phone, there’s no-one.

SPEAKER 3:

The most helpful person out of my health care team has definitely been the rheumatology nurse, she’s an absolute godsend and without her I don't know what I’d do; she helps me whenever she can and she’s only a phone call away and she really is a wonderful person to me. I find that the rheumatology nurse helps me in every way; if I’m depressed or stressed she can really help to relax me and find ways around any problems I have. I went for a long time without having one (at a different hospital) and I’ve got to say that the change in me and the help I’m getting is fantastic now, so I think everybody should have one. When I first found out that I had RA I didn't know anything and the hospital really wanted to just prescribe the drugs and get you out of the door as quickly as possible; I understood they had a lot of people to see but there just was nowhere there that I could find out any information whatsoever.

SPEAKER 4:

I was just left really, I was just alone, I didn't have a helpline to phone, I didn't have a rheumatology nurse, my appointments were months and months apart and I would always have a letter saying ‘oh, it’s been necessary to cancel, your appointment has been put back to [this month]’, so I felt completely alone and just taking lots of drugs which weren’t working. I don’t feel like I was given enough information about the drugs I was taking and I was prescribed steroids and I wasn’t given any bone protection and now because of that I’ve got osteopenia.

SPEAKER 5:

Once I’d actually been referred and seen by a rheumatology consultant the support that I’ve got from my local hospital has been very good over the years. It’s improved as time’s gone on because when I was first diagnosed we didn't have access to a rheumatology nurse specialist or a rheumatology occupational therapist, which we now have at my local hospital.

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