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 theres 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 hes accumulated from knowing me all those years, well what better way is there o; 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. Shes just going through things I’ve seen a hundred times before and they’re not telling me anything new, not asking me anything new. Nurse; in hospitals have been sometimes wonderful, sometimes abominable and all stations in between.

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.
&

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;

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.