Rheumatoid Arthritis

Messages to health care professionals

People with rheumatoid arthritis (RA) had important messages that they wanted to convey to doctors, nurses, and other health workers:

Don't neglect the special needs of young people with RA
Be aware of 'the person behind the patient' and take a holistic approach to disease management
Remember that people are all different
Don't treat patients as numbers
Don't describe patients as 'rheumatoids'
Give patients plenty of information, explaining medications and procedures about to be performed (see 'Finding information about RA')
Don't use jargon that patients don't understand
Listen to your patients and involve them in decisions at every stage
Understand that continuity of care is very important to patients with RA
Talk to your patients about sex after being diagnosed with RA. This is an important and much neglected subject and patients need your advice and support.

Patients should be involved in treatment decisions at every stage and continuity of care is important.

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Age at interview: 53

Sex: Female

Age at diagnosis: 30

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But what I would ask an expert would be, 'Why don't you involve patients in your decision making at every stage? Why don't you ask patients what they want and what they feel they need because the patient is the expert in their own disease?' Because absolutely every patient is a complete individual and there are no two patients that match each other completely. And I think doctors could learn a huge amount by listening more to patients, mmm.

I find that, quite often problems arise because um there's poor continuity I've had this disease now for 22 plus years and in that time there has been an incredible turnover over all these health professionals, the only one who I remember from back then is, is my then registrar now Prof. of rheumatology so you know he, he was able to act recently upon information that he's accumulated from knowing me all those years, well what better way is there of serving a patients than by knowing them over a long period of time? And now that has to be true of every health professional now if you see a different occupational therapist every time you go, it's exhausting, exasperating.

I feel almost like being rude, it's so exasperating to explain to, you know, a 19 year old who's never met me before. But of course it's not her fault. She's just going through things I've seen a hundred times before and they're not telling me anything new, not asking me anything new. Nurses in hospitals have been sometimes wonderful, sometimes abominable and all stations in between.

Pearl thinks that the issue of sex after being diagnosed with RA can affect relationships and...

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Age at interview: 60

Sex: Female

Age at diagnosis: 40

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I think they should know that it does affect you socially and it does affect you mentally. You know, you do get depressed. It’s not just a pain. I think there’s those options to it. I don’t think a lot of doctors realise that it affects your life. It does affect your life. It’s not just you’ve got a sore leg or arm it does affect the whole of your life and relationships with your family and such, even with your husband, you know.

In which ways?

You know, do you know what I mean without. You know the nurse would say to me, ‘Take two panadol if you think you are going to have a relationship with your husband’. You know things like that, it does affect that way because you can’t, you can’t move. You know you’re restricted and there’s that sort of aspect to it as well which I don’t think a lot of people understand, you know. Yeah.

And how have you managed that situation I mean?

That’s what I do. I take two panadol [laugh].

[Laugh] That’s good advice.

And you just laugh about it [laugh]. Yeah, yeah.

And as you said there is an extra strain put on a relationship?

Yeah, yeah.

I mean and how do you go about it apart from just talking about the situation?

Well it was when. I’ve had it for a while so it’s when you’re younger as well you find all this out but it is, it’s talking about it. Saying that you are not able to do things because of what you feel. You’ve got this or you’ve got that and you can’t do it. And it is talking about it. You’ve got to talk about it because they don’t know if you don’t. You’ve got to, yeah.

Did you receive any advice regarding this particular problem?

No, nothing, nothing, no.

So it’s not mentioned?

No, no it’s not mentioned. That’s why I think it should be, you know, brought up. Yeah. I think you would find it is a big, a major thing in people’s lives and couples, you know.

Yeah because it affects your sexual relationship?

Yeah, yeah because it’s not just for older people. You get young people with it don’t you? So it must be a big thing for the younger people, yeah.

How old were you, 40?

I was 40 yeah, yeah.

And what did they discuss at that point regarding, because you were put on methotrexate and were you also using contraception at that time?

No, no I wasn’t because [my husband] had had a vasectomy anyway so I wasn’t using anything like that. Yeah but nothing was spoken about. They didn’t speak about anything. It was just that you were going on methotrexate and it would help your arthritis and that was it.

But what about a woman of 40 who can still get pregnant?

They did, sorry they did say when I went on the methotrexate about that but I was aware of that but other than that there was nothing said. I was aware you couldn’t get pregnant if you were taking it but…

The part on how you get pregnant wasn’t discussed?

Wasn’t discussed at all, no.

Remember that patients may forget what they have been told. It is useful to have the phone number of a nurse to call

Patients may forget what they have been told so it helps to have the phone number of a nurse to...

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Age at interview: 63

Sex: Female

Age at diagnosis: 36

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What I think is not always taken into consideration is that people are very anxious when they go to a rheumatology clinic or whatever, and however hard you try to listen, I think people forget what they've been told sometimes. And recently I've been to a hospital, which I was extremely impressed by, because on my initial consultation with a surgeon, I was given the name and a telephone number and hours that I could contact a member of his team, a nurse on his team. So that when I got home, and I thought to myself, what did he say about that? How long was it? What would I be doing after I'd had the operation? I had a, a name and a telephone number and days that this person worked and the hours that I could ring and I thought that was fantastic. I don't, for me I probably wouldn't need it, but there are lots of people that I think need that sort of service 'cos you're obviously anxious when you go.

Tender loving care is important
Don't be too rough when examining patients

Health workers need to be gentle and to allow plenty of time for the consultation.

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Age at interview: 21

Sex: Female

Age at diagnosis: 12

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Don't pull people around so much. They, I know it sounds silly but my left knee was hurting quite badly and my consultant, as lovely as she is, really pulled around with it and it hurt so much more for months afterwards. It took a long time to get it to feel better after that. And I think they don't necessarily realise that they pull people around a lot especially when you're being checked over by the physio. These days they're not so bad but when I was a child they pulled me around something rotten and made me cry, it was that bad.

Just trying to find out where my boundaries were. And I thought, 'That's not fair, you can't just'' Somebody that I don't know just starts grabbing me and pulling me about, pulling my head this way and my leg that way and I think sometimes they need to realise that it's it's not an ordinary person they're dealing with, it's not somebody who isn't feeling any pain, it's somebody who does feel pain and feels pain quite easily and quite sensitively. And I've got very sensitive skin anyway. You could sort of touch me anywhere and it would hurt a little bit. I think that's the way I've always been. And they do need to realise that sometimes.

And also realise that a few minutes in each consultant, the consultation isn't enough. I know they're busy and very busy but listening is very important I think. I, I'm lucky with that, my consultant I can spend quite a lot of time with her and she listens to me quite well. But I can't imagine what it would be like if I only got 5 minutes to see her. Nothing would ever happen. I wouldn't ever get anywhere.

Don't rush the consultation - allow enough time for each patient
Tell patients about the social support and financial benefits that are available
Be truthful and tell patients that there isn't a cure for RA though much can be done to help to control the condition and make it more manageable
Try not to frighten them with worst case scenarios
If a clinic is running late give patients information and apologise for delays
Increase public awareness of RA and keep people informed through the media on research and developments in treatment
Involve patients in NHS decisions on how services are provided

Last reviewed August 2016.

Last updated March 2012.