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 justrdquo; 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 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.

For a patient to really understand and get into you know; when you’re diagnosed with a long term illness you can’t just say, "Hello my name is," and walk out. You need to sit there and support someone. You need to explain what is going to happen to them. What their future is going to be like, you know, give them a bit of background details, someven if it’s your statistics, you know, anything like that, anything that you can offer a child or person. Any information that you may have would benefit, you know, a patient drastically. What you might think is irrelevant might make a patient feel, you know, better or might make a patient accept it more. So I mean just being there and know, it’s a professionally paid job but going that extra mile in a sense, that’s what makes you a great doctor, that’s what makes your patients respect and appreciate you. I’ve had doctors in the past where, I mean they’re just doctors who’ve treated me whereas when I speak with my GP or my consultant I speak very warmly about them, I’m very respectful about them and I know that they have made the difference in my life. And doctors usually get into the profession because they want to change, they want to have the difference and help people and if that is the case you need, you can’t just do what you’ve learnt in medical school, you need to go the extra mile.

Yeah I think it should especially if a patient’s young. I don’t know about; it would probably feel quite patronising if you’re eighteen and you know, things like that but when you’re eighteen and you’re in a hospital and you’re scared because you don’t know where, you know, you’re going be walking like this, you know, shuffling eighty year old at you know, twenty seven. ‘Oh my god,’ you know, it’s kind of like, ‘aaah,’ you know. I think you need a level of friendship because otherwise well I would panic and I’ve; there were moments, lots of moments of panic so I encourage it. I don’t like the, you know, I’ve, there are, there are other nurses that I’ve had appointments with when said nurse hasn’t been around, it’s not been as good and I’ve not felt like I’ve got anything from it. And I like to go to an appointment and feel, well maybe not some at the moment because my arthritis is on like an even keel and there’s not really much to say, but when things were bad it was, I preferred having something to aim for like more, we’ll do more hydrotherapy or we’ll do this or maybe have you thought about another joint injection as much as I hate them and they’re bloody awful I don’t recommend them to anyone but I do recommend them to anyone. Yeah it’s always nice to have the kind of friend, a friendly ear to make you, you less scared. Because you know a rheumatology ward is not like going to a children’s ward. You know it’s maybe, you know, there’s rheumatology clinics for people that are under eighteen and you know and they’re classed as a child but when you’re eighteen the NHS instantly sees you as an adult so you have to go to you know, scary wards you know and I got admitted to hospital last year for a kidney infection and I ended up on you know, a ward full of old people because you know, they don’t group eighteen to twenty four year olds together. So yes it’s quite, yeah, there’s not really that kind middle of the road gap for young people in the NHS so it’s nice to have nurses and it helps that this nurse is quite young and she’s, she’s got teenagers herself and I think she’s quite relatable and that you know, she, she’d worry about her kids if they were, you know, going through the same thing and it’s nice that she’s got a level of understanding.

Okay I think the main thing is you know you must see the person, don’t automatically see the condition. don’t see a body but see the person. Like I said earlier about you know if my consultant treated me by my blood results I’d be in hospital. So you know look at the individual. You know I mean too many times people are you know, I mean clinics these days it’s like a cattle market now. Going in there’s one out, there’s one in, there’s on out, you know. And the consultant sees, you know he might see 20 different people in a morning. But each of those people will be different and have different needs, and they’ll be on different medication probably and be of different ages. They all must be treated individually.

And if that means different information, more relevant information to them, more relevant course of treatments, and it could be anything. But that’s my big, big critique in today 2012, is that people don’t see the patient. They just see you know they just see a body part or a head, you know treat the individual.

I think you shouldn’t be afraid to dumb it down. Because for me without sounding big headed I’m quite clever, so when, when I was 14 and I first went to the children’s hospital I found that they were dumbing it down a bit too much. And that annoyed me because well I don’t like things dumbed down for me, I’d rather know as much detail as I can, and if I don’t understand something I’ll ask for it. I ask what it means. So it’s never a problem with being too detailed.

I think give us as much information as the person wants. And if they say it’s too much then maybe you could simplify it. Well maybe suit it to their age range more. Cos I think whilst I was at the children’s hospital it, I did feel more a child. I know it is a children’s hospital but it was a young person’s clinic, but that was for about 11 to 18, or 16. So I was always towards the upper end of that, and I’m quite clever as well so I always felt that it was a little bit dumbed down for me.

Sometimes when, when the kid says I’m OK, just double check because they can, pride is probably a big thing with kids with arthritis. Like we you know we don’t want to show we’re suffering, we’d like to, you know, just want to feel that we’re in control and then sometimes we’re not in control but we still want to appear that we are and you know, it’s difficult because we just, it does depend on the child but sometimes we just want to, you know, do it ourselves even though we really can’t. We want our independence, we love our pride and you know, it’s just sometimes, just you know, just ask, just you know, just to double check that we are OK because you know it happens to me all the time. Like I say I’m OK and I’m really not but you know my Mum would turn round with me and like, "Jas are you sure because in your face you look like you’re in pain?"

It’s like, you know sometimes we just, we just don’t want to admit that sometimes we’re in pain and you know admit that we want some help because you know especially when you’re a teenager you want your own independence and you want to do things yourself and you know sometimes we do need a helping hand even though we really don’t want it but yeah you know just, just sometimes just, if, get to know the patient you know the person with arthritis and everything and you know get the little, little tell-tale signs that they’re not OK because it does depend on the patient. With me sometimes I just like just you know talk a little bit less than I actually do because I talk a lot, so it’s you know, it does take time to know the patient but obviously it’s a real, a long period that you will be with that person and throughout their life so yeah just get to know them and then you know, if they say they’re OK you say, "I’m sure," they’ll get a little bit annoyed but be like if they, you know, ask them again but you know, they maybe like if you like say, "Are you sure?" it’ll be like, "Oh well there was this one time," and then they might you know, tell that there’s actually something wrong.

I remember seeing different consultants which I found really hard, because as a young person you’ve got to trust someone and it’s really hard to trust someone when you’re in and out with different consultants. You build up a relationship but then you, you know that consultant might not be there the next time that you’re there, and it’s just how much does that other consultant know about you. Not your diagnosis, but as you as an individual, you know? Do they know that you’re, you know the reason you’re not exercising is not because you’re lazy but it’s because you physically can’t do it? Do they know that you’re as much; you know more pain than you were last time? Because you know what can a note sort of transfer into someone’s mind. They were amazing consultants but I think that, that was, I found that quite hard, whereas I also got introduced to my consultant in my local area because obviously he’d be taking over when I think I was sort of like 19 or 20 (they kept me on for quite a while) when I transferred across, and I was lucky that I’d been seeing him every six months, so he was in constant sort of liaison, knowing what was going on at the other hospital. So that was good, that was a good handover sort of for the period that they done that.

So it’s really frustrating. Especially when, with the first specialist because it wasn’t making any difference what they were doing with the different medications and then I got all the side effects with the Methotrexate and things like that. But it wasn’t making any difference to my knee, though I would have been fine to carry on with that like if they said, like you might lose your hair, but it will always grow back when you stop taking the methotrexate. But I didn’t care it was like if it works, I will go with it, I will not have hair. I don’t care if it gets rid of that.

But I started getting all the side effects and it wasn’t helping. It made no difference to my knee whatsoever. And then I went back to her to them and she then decided to take me off that and put me back on the original medication, but I’d said that obviously it’s really frustrating that it’s not making a difference, and I don’t know if they were just a bit blasé about it, and it was sort of like a, Oh right, okay well that’s not working. Let’s go back to plan And try that again

And it was like yeah fair enough but what about me, what about the fact that I haven’t been able to do what I want to do for the last three years, and you haven’t made any progress with it. Which I think was my breaking point with the first specialist cos I was like, No, I’m not happy with this. You’re just treating me as bad really and it sounds bad but it was like cos she sees people with the same problems every day it was like you were a number or a folder on the side. And it was all just a bit blasé and it was obviously, and cos I’m so young so when you’re in the waiting room and everybody else there is 50, 60 years old and you’re there with the same problems, and then the doctor doesn’t understand and treats you the same, and just expects you to get on with it, it’s really frustrating and really hard to, it’s yeah.

PART B
Do you feel that now you’ve changed consultants that you’re taken more seriously?

Yes definitely. Cos the specialist I’m seeing now also has, from what I’ve seen has another patient about my age. I’ve only ever seen one, cos I was there at the same time sort of thing, but he could have more but I feel a lot more taken seriously in the things I say, they actually go, Right okay, well if that happens do this. Make sure you’re eating a lot of oily fish. A lot of things like that and keep your iron up cos I’m slightly anaemic as well, so like, Keep your iron up cos if your iron’s low then your blood cells are going to be low and that’ll affect the medication

So they’re actually like you need to do this and this, and we’re gonna do this and this. If that doesn’t work you can look at instead of taking the methotrexate in a pill form, if I start to get the side effects again they were like well we can stop that and you could have it injected instead. Which should stop the side effects because you’re not digesting it. And things like that.

And it’s like right obviously that sulfasalazine level didn’t work so we’ll up that, if that doesn’t work we’ll look at taking a different route with different medication and things like that. And also looking to put me on a physio course to try, even though I’ve got restricted use of my knee, to try and build up the muscle in it cos that will help. So they’re a lot more informative and a lot more helpful as it were.