OK so rheumatology clinics again, there’ll be a wide variation and again paediatric rheumatology clinics will tend to be somewhat different to adult rheumatology clinics. One of the big differences is in paediatrics we have a lot more time to spend with the patients and there will be a lot fewer patients in one clinic. And it is one thing that young people find sometimes difficult as they move into adult services is that there is less time, there are more people etc. The argument obviously for more time in paediatric clinics is that these are young people who are growing and developing and not yet adult and as well as monitoring their arthritis and their treatment is monitoring their growth and development. As young people get older there is alsowhereas in the younger children we see the family together, as they grow older we give them the opportunity to be seen on their own for part of the visit and then the family comes in at the end, so it’s almost like two clinics for the price of one but again that is a longer clinic, a clinic appointment. The, again it will vary from place to place but in paediatric and adolescent rheumatology clinics it does tend to be a multi-disciplinary clinic so in my young persons’ clinic there’ll be the nurse, the occupational therapist, the physiotherapist, the transition co-ordinator and then the doctors, and the young people will usually mostly, see the doctor but then a variety of the other professionals depending on their needs and some time will be spent with the doctors, some time with the nurse if necessary and so it will vary again from area to area. It is important, again in young people’s clinic whenever they are still growing, young people will be seen regularly to monitor that growth as when young people are adults, there’s less change – they’re not fully grown and therefore don’t need to be seen as much. But most young people in our clinics will be seen somewhere between every three to six months, those on more of the stronger drugs, they will be seen more often. Those who are well will be seen less often but with the understanding that if they ran into problems they contact us and we’ll bring their appointment forward.

When young peopleobviously I see children from a young age and as they grow up and as they enter the teenage years we recognise the need for the young person to be, have some privacy and some time that they can ask their own questions. And one of theso we would encourage young people to consider coming in on their own for part of the visit and in the whole most young people appreciate that time. Many parents find it very difficult to let go and what I tend to say is that the clinics are safe places for young people to practice talking to professionals. This is a good skill to learn for the world of work when they go for job interviews and that confidence about talking to professionals. Now some young people bring their friends, some young people bring their boyfriend/girlfriend. Some bring their parent in because they want them to be there as long as the young person is the person who is choosing and sometimes from a doctor point of view it’s difficult to know who’s actually choosing to be in the room. When it comes to then discussing some of the more sensitive issues, so sexual health, alcohol etc, that can be quite challenging to talk when the parents are around because as a doctor I don’t know the, always the relationship and sometimes young people will not disclose important health related issues if the parents are in the room. So we always give them the opportunity and most young people do take it and we support the parents in adjusting to it and; but one of the important things for both young people and their parents to know is the rights for confidentiality and that is irrespective of age and they have the right to confidentiality. Whatever is said in the room is kept in the room with the exception that if the young person says something that they will harm themselves, are being harmed by someone or the young person is going to harm somebody. Those are the three times that I would have to break confidentiality but I would always tell the young person first and I would say who I was telling, when, etc because many young people worry that the health professionals go behind their back and won’t tell them andbut that explanation must happen with all young people and with their parents so the parents know that theythat that is respected because some parents do think that they should be told everything that is said within the room and that isn’t the case. And I certainly find that only until that is the confidentiality is assured will then some young people start opening up and it’s often the young people who need it the most who either aren’t getting on with their parents or are struggling with sort of health risky behaviours, need that time to open up.

Well, you just sign in and then you wait and then they’ll have one thing where they check your height and weight. Then you’ll go back in the waiting room for a bit and the real, the proper visit they’ll call you in and you go in and they ask you how you’ve been, how your arthritis is at the moment and any trouble with it and they’ll examine you. They’ll ask you to wear loose clothing so you can like roll up to your knees or you don’t you don’t want to go in skinny jeans, as fashionable as they’re not very practical for one of those visits. But I did wear skinny jeans once. It wasn’t good. I had to like, it was proper tight around my knee. I’ve never worn them since but and yeah, you’ve got to do more practicals I suppose and then in clothes and they might get you to like lift your top up at the back if you’ve been having back problems. But they just examine you really and they go, all right and then they’re like wash their hands and then they’ll sit back down and then they’ll give you the results. And they’ll be like, Well, you don’t seem that bad Or, You’ve got quite a lot of fluid there Or they’ll just tell you what’s happened and then they’ll discuss treatment with you or they’ll say, We think you’re all right. If you want to try this a little bit longer and if it isn’t working come back I know their lines for them.

So each time you go to the hospital what happens?

I get weighed; blood pressure, then I have to fill in a questionnaire on how I’ve been over the past month. Then my pain over the past month and then my pain, what it is today. It’d be, say if I was, what my pain is today. And then I’d, it’s on the scale of 0 to 10, 10 very painful, 0 not painful. 5 in the middle onwards. And then you go in, you talk about it, and the questions are like, How, it’s not much, very much, much difficulty, difficult and that’s how they do it, and it would be, Wash and groom myself and then it would be like, Lift a bag of potatoes above my head. From above my head down. Unscrew a jam jar open and stuff like that. Them type of questions just so they can see how you’re getting on.

And then we’d go in, talk about that. They’d assess your joints, feel your joints, see if anything’s inflamed, if you jump then obviously they’ll examine that a bit more, and they talk to you as well, just to see, well my one, my doctor actually, she talks to me, asks how I’ve been emotionally, asks how school is. Basically cover all areas of what’s going on in your life. Ask how home life is. When my parents come in at the end, ask how they’re getting on, and if they’re coping. And that’s it really.

Well it’s made easier for me sort of as time’s gone on to sort of come up with some rules with the nurse. So like what I would do is I would be in my room, even when the doorbell goes I’ll stay in the room, as soon as she’s ready she’ll have the spray in her hand, like the cold spray to numb the area, and the needle in the other hand. I’ll run downstairs, sit down, say, Go as quickly as you can Put my arm out, done. And I do the same for my injections as well cause it’s less stressful and it can be over with more quickly and, and that’s it for another week or six weeks in terms of blood tests.

So the blood tests are in your home, here?

Yes and my methotrexate injections too.

And is it easier to have blood taken here or at the hospital?

I think it is easier taken here because you can just do your own thing, when the doorbell goes, go down, that’s it, carry on, don’t have to wait about really cause you’ve got stuff to get, I’ve got stuff to be getting on with anyway, and, and Mum doesn’t want to have to drive up to the hospital, sit and wait, come home, she could be doing dinner or watching the telly. There’s so much more you could be doing rather than sitting in a hospital and waiting for a two second thing.

Okay and in terms of the methotrexate, does a nurse give that to you? Is that a nurse that comes over?

Yeah, Community District Nurses. Yeah.

I’ve had blood tests since I can remember. Like every month but I’ve recently stopped them because I think I went on them because I was on my methotrexate, and it was like to monitor if it was working or if it was playing up with my body and stuff. But I really miss them because they were so nice, like I used to see them every month and I haven’t seen them in ages now.

You are the first person to say you miss a blood test. Could you explain again why you miss, why you miss them?

I haven’t really got a clue. But like they were so friendly and they were, you could, I know they’re not doctors or nurses, but you feel like you could talk to them about anything. You could talk to them about like your school life, your home life, anything. And it didn’t hurt. It was only the person that jabbed me in the thumb to do it that I don’t like.

I’ve never heard of people taking blood from a thumb.

Cos some people don’t like it having from the arm so they jab you in the thumb to do it. It kills.

Did you have, what did you do?

She did it right under the nail

Ow.

Just jabbed it. I was like What are you doing? I have it in my arm.

Oh.

I was not impressed.

Did it really hurt?

Yeah.

Did you cry?

It was the first time that I cried.

Oh. And she didn’t explain what was going on?

No she just did it because she thought that’s how I had it done.

How old were you?

Oh I must have been about 7 or 8 or something.

With the blood tests then what are they monitoring?

I think it was monitoring how the methotrexate was affecting me.

Do you know how that works?

I haven’t got a clue.

Cos some people

I don’t ask.

Are you quite often like that, or is it just

Yeah I’m just like You wanna do that? Go for it.

Yeah.

They know what’s best for me so, and that’s why I let them do what they want.

OK and when you go for those ultrasounds how do you feel?

I feel a bit depressed because I’m scared what the results going to be. Like when I went up I think it was three weeks ago I didn’t know I had it in my neck and they were asking me to move side to side and obviously, you know, like during the day as you’re moving your neck you’d notice but I didn’t notice and then , and then I knew my hip was bad and they checked it and they’re going to inject it now and about three or two years ago I got an x-ray of my jaw and this one’s nearly gone, like worn away and it locks because it’s not properly in the socket and they went to take x-rays three weeks ago but they thought they were doing this jaw wrong because they didn’t say anything and I started laughing and they were just like, “What are you laughing at now?” and I just goes , “It’s just the way it is,” and they went, “Right OK,” and she’s going to inject my jaw as well but the specialist once told me that he could replace it but I don’t know if like I want to get cut open and get like a fake jaw, be weird and plus they only last like four years anyway.

Basically, when I go for me scan they’ll call me in. You remove any metal objects and then they’ll lay you on the bed and a scanner will slowly go over your body and it’ll just check all of your joints and your bones. And then once it’s done, they just set you off and you and you can go and then if they find any issues, they’ll call you up to go back in and see your doctor.

How long does the scan take?

Fifteen, twenty minutes usually.

Oh, is that it?

Yeah. It doesn’t take very long.

And are you in machine or is it a hand held sort of thing?

You you’re laid on a bed with a scanner that moves over your body.

And do you have to wear one of these hospital gowns when it’s happening?

It depends what you’re wearing on the time on the day. If you’ve got anything plastic or metal then they’ll put you in a gown but if you’re just going just trousers and a t-shirt, you’re fine.

Does the metal buttons on your jeans, for instance, set it off?

No, I think it just shows up on the picture of what they see.

Okay. So you have these every year. Have you had these for quite a few years in a row?

Yeah, I have. I can’t remember how long I’ve been doing it now but it used to be more regular. It used to be every couple of month, then it were every six month but now that at the moment everything is stable, they’ve just said once a year unless I’ve got any issues.

What’s it like only going in once a year? Is that a good thing or a bad thing?

Well, it’s fine. It doesn’t take long so I don’t mind. They let me know when in advance so I know when to go in.

Who does the scan?

it’s an NHS hospital. I think it’s just a couple of nurses that do it.

Okay so there’s consultant with a scan or
No. You only see a consultant if they find any problems.

another difference between juvenile arthritis and adult arthritis is an association with the eye. In adult arthritis they get eye problems where they get a painful eye. In juvenile idiopathic arthritis they get a painless eye problem. So it’s more difficult to diagnose because they don’t feel anything, it doesn’t look red, but they can start getting reduced vision. Now usually by the time teenage years kick in the teenagers are aware that their vision isn’t so good. It’s more of a concern in the little children who aren’t aware and they lose a lot of vision before it’s caught. But some young people do get this problem and it’s called chronic anterior uveitis and they may need biologic treatment to treat their uveitis as well as their arthritis. The problem with the uveitis is that it can go on into adulthood and need regular check-ups with the eye specialist, so it is important for both young people

if they have had eye problems in the past, they notice something with their vision, to just have a low threshold of getting it checked out because these conditions can be treated but the problems are whenever they’re left untreated and then more problems set in. And again there’s many more effective treatments we have for the eye disease compared to not that long ago, but it is a difference between the types of arthritis because the adult arthritis tend to have painful eye problems whereas the juvenile have painless.

And what’s the eye doctor looking for?

He is looking for cells in my eyes which are an indication of inflammation. I’m not 100% clear on it anymore because it’s such a long time they explained it to me but it can cause inflammation in my eye and lead to blindness. So I have to keep an eye on it, if, if it swell up, if it goes red, if, if vision gets funny, I have to make an emergency appointment because they have to treat it with steroids very quickly. But it’s always been quite yes, it’s been fine.

He always says that, I can’t see many cells in there; I can see one or two cells So obviously the amount of cells indicates the amount of trouble you’ve got going on in there. But that’s just to keep a check on it really and that’s [uh] once a year. Because they check on it once a year and no more than that because it’s one of those things that if it happens, it happens and you have to go in straight away. So any more than a year it’s just a waste of their resources. But yeah, I’m sort of roped in with all the other people that take ages in there because they have to have loads of stuff done, so.

And then I read out the chart as well and they compare to see how my eyes are getting on. Which is quite handy because I do wear glasses. So they can check on my eye progress, see if one eye’s getting worse which, I think one of my eyes is worse than the other but I think now the other one’s catching up a little bit. So they might even out someday.

Just some small pieces of advice I think to young people when they come to clinic , just to start practising, asking their own questions because all of us when we go to a clinic or something it all, you know, it sort of goes in one ear and out the other and you forget what you were going to ask and you’re out the door and then you think, ‘Oh I didn’t remember,’ is to write things down, particularly when young people are coming in on their own for the first time. I usually encourage them to write their own questions and the parents to write their questions but for the young person to ask the questions or queries. And that can be anything and you know the questions will range from disease specific to ‘can I have a tattoo?’ or something. But it’s encouraging them to take part and ask questions, so I would encourage young people to have a little list or think of the questions before; when they’re coming in on the train or the car, to write it down. When young people come in on their own and their parents come in after, a useful thing I find to do is to get the young person to tell the parent the plan of what’s happening next. That way I know that they’ve understood what I’ve talked about but also it’s that practising skill of discussing what’s going to happen next and demonstrating to the parent that they are competent in coming in on their own and are taking responsibility etc. So again there’s just some of those little skills that are useful for young people I think to practise.

Once I was moved to the children’s hospital and I was kept there for quite a while, like months wise, I felt that I could just ask anything I wanted at any time. I mean the doctors just said, Here’s my e-mail, any questions just e-mail me and I’ll get back to you very quickly Which they always did which was great.

I mean I had my Duke of Edinburgh expeditions and like I’d say I’ve suddenly got a bit worse can I have a joint injection before I do it? And they’d say, Yeah no problem, here’s a joint injection appointment for one week And I was like, Wow. That’s quick, thank.

Gosh no that’s wonderful stuff, wow.

Yeah it was incredible. I mean it was such a good service there, going from, I think that was the worst part of going from a children’s hospital to a regular hospital is that you’re suddenly not so special and treated so nicely. You’ve suddenly become one of a few more people so you can’t get everything done straightaway. But they still accommodate you as much as they can.

That’s good news, good to hear.

Yeah.

Do you think that’ll be the case is that the case now?

Yeah that’s

That is the case now?

That is the case now.

Yes.

Yeah I can still e-mail my nurse any time I want, I say my nurse but I always see her and she always sees me, so
Okay.

I can just e-mail her with any questions I have and she’ll get back to me very quickly.

Does a nurse give you your injections?

No. At, at the children’s hospital it was the doctor that did it, or a doctor, whoever was available really. But once I moved to the regular hospital I’ve a doctor that I see and a nurse who I see more often, because the doctor is generally quite busy. But I still, it doesn’t really matter that much unless I’ve some sort of a great big news about how I’ve got horribly worse, I don’t need to see the doctor so it’s, its fine that way. But in regards to the joint injections, you just get an appointment and then I turn up at the required time, I go into the room and then there’s just a man who does joint injections. I mean you’re in a queue with like old people and various other people, and you just go in one by one, and they just check where you’ve got to have injected and he’ll inject it. And that’s it. And I don’t know if he actually is part of the rheumatology team or if he just does joint injections for anything, for, they seem to have an afternoon where they just do joint injections. Yeah, come along.

And can you contact your healthcare team whenever you like?

It takes about half an hour to get through to them because like the doctors are obviously on call, and it takes like ten minutes to track em down. And then it takes them like five minutes to find a phone to phone back. Or if they’re busy like doing something that they do what they want to do, and then find time to speak to you.

Cos I remember being on the phone for about an hour waiting on hold just to speak to a nurse which was just despicable. But I have a yellow card which is when, if I feel like really rubbish I can just go straight to A&E and they go straight through like to take me up to the rheumatology department, which is good when I’m that low, but I wish that could be like give like a little code before you start speaking on the phone and then they put you straight through, like to the consultant or something like that. So it should be like straight on instead of waiting for half an hour just to speak to someone.

Have you gone into hospital much using that system of yellow cards?

Once. And that was when the, all the other treatments failed that I was getting to that point where you need to be like going in, so we just went in there and showed them like, it’s not really, it’s not even yellow, it’s pink. it’s like a form saying this is what he’s got and this is what treatment, and this is what would be, what you would be doing, as in the, to the doctors who are at, in A&E, they say Ahh, right yeah, let’s go and do this for you. Let go put a cannula in and put you in, on the morphine straight away, and then we’ll move you up into the child’s ward, or the Rheumatology ward

And was that when it got really bad? That was before you went in for your six month stretch.

Yeah, That was, no that was the start of the yeah.

And so that was the kind of, the way in which that system was set up you thought was a good idea?

Yeah.

And it was efficient? You just went straight through?

Not straight through. I had to wait for my turn. And then it took a while to find a nurse to cannulate me, and I was like, There’s the stuff, I could do it myself I’ve seen it so many times. And then it was like trying to find a porter to go up there and do that. So it was just those little like little bit’s that they could be like all coming together and say listen to like the yellow card, read it out, and then they go and get the stuff that I need and then do it there and then. And then phone the porter. I don’t mind waiting for a porter cos I’ll be all sorted with the morphine and the treatment is already going in so, yeah, it just takes a little bit of time to find the right people.

If symptoms get worse at any time, I think again it’s important for the young person know how to contact their clinic. Now inall clinics will be different and it might be contacting a helpline, it might be contacting the nurse specialist but how do you get advice from that particular clinic. So most clinics in young people will tend to be that’s a natural thing of telling them how to do that, and getting advice and it may be advice over the phone, it may need a review appointment, but it is important to seek help if they think their arthritis is beginning to flare because it may need, you know, increasing the treatment, it may need a different treatment etc. Sometimes some of the symptoms are more ill-defined. Symptoms maybeit might be due to something else, they may have a virus infection, they may haveand it may not be anything to do with losing control of the arthritis, so important to get it checked out.

OK and it’s straight to the rheumatology team, not to the GP if they think it’s

Again that will vary as to at what stage the young person is at. If they’re newly diagnosed they may not know which is my arthritis, which is a virus, which is
whatever; and going to the GP and then the GP can decide, you know help them decide which is the case. In somebody who has had arthritis for a few years they usually are very good experts to work out is it the arthritis flaring and then , you know, if it is the arthritis flaring then definitely go straight to the rheumatologist. But again it is difficult to generalise because all the clinics will be slightly different but important for young people to ask that very question, ‘What do I do if my arthritis gets worse? Do I contact you or who do I contact?’ and usually the clinic then will give that local advice.

We went there, my husband came too, so the, we toddled along and I can’t remember how long we had to wait for a first appointment, I don’t think it was too bad. We went along and there were, I can’t remember how many adults were in the room but there must’ve been seven or eight whereas before we’d only ever seen a consultant and his nurse, and this time there was the consultant, there was the senior reg or whatever you call them, and there was an OT and a Physiotherapist. And there was the social worker and there was the nurse specialist and I think there was a student probably, and somebody else.

And they were very good. They were very proactive. And within a week they had Ellen in hospital for a week to get a good look at her and she had, I think she had a couple of steroid injections and something else. And then she had a lot of hydrotherapy and physiotherapy and splints made. I mean it was absolutely astounding, you wouldn’t think they were all treating the same illness. It was very good but they were very upbeat about it, very positive and very, I mean Ellen was fine with it, because there were things for her to do, play, I don’t think she was scared by it. So it was quite different.

It sounds very different?

It was very different, well it was, as my husband said it was proactive, so it was like, Okay, well yeah, but let’s get on with it. Let’s do something Not, Oh we’ve got to live with what you’ve got It was, Let’s get on with it and make life better

Can you give me an example of the kind of things that they were proactive about?

Well it was, well for a start getting her into hospital and taking it seriously was proactive. And, and giving her hydrotherapy, showing her how to do the exercises. Showing her you know the splints, showing us how to that kind of thing. So I don’t think at that stage they got involved with the school cos she was still at junior school. No, not at that stage. But it was just a general interest and the quite positive thing about, Well we, you know we will be able to make life better really

Okay.

It was good. Very positive. And the other thing they said, I do remember this, they said, Ten years ago you would have seen children in wheelchairs here and all the time we went to that hospital I think only once did we see a child in a wheelchair with arthritis. And they were saying that that’s because actually we do stuff now, we don’t just say, you know treatments changed. And treatment had changed. I mean the drugs have changed yeah, so they were very positive. I hope it’s even better now, I don’t know.

I was in a few studies that my consultant runs and you know, about the steroids because they don’t have anything for to protect, you know, to protect children’s bones when you take steroids because they thin your bones. And what happens then is she gave us calcium and vitamin D and we went on all these she calls it a ‘pop study’ which is trying to find a way to protect a child’s bones from the steroids. An adult you can just give them Vitamin D and calcium that’ll work perfectly but they aren’t sure how to help with children so eventually that’ll lead to osteoporosis. I’m quite lucky in the fact that we, you know, we, you know, we were constantly very careful, we monitored it and there may be thinning in my bones but it’s not anything as bad as it could have been.

Not to say that she’s come up with any results but it’s definitely she’s, she’s one of these people who are constantly working, she’s constantly trying to find a different answer and trying to show you different ways and what she can, you know, go through things. So and then Enbrel injections hildren are very lucky in the fact that they can be put on them straight away. As soon as she feels a need for these anti-TNF drugs she will prescribe them. I’m on the injections and there are no side effects of them at all. Well at least that they know about now, they’re quite new so they’re not sure about the long term effect of them which is quite scary because I’m not sure how I’m going to be in twenty years now. It’s, my future’s kind of shady in that sense but I mean other, you know, than the initial prick of the injection there’s nothing really too bad about them. I’ve been on them for almost two years now and they are, they’re a wonder drug, same with methotrexate, they’re a wonder drug.

I’ve still got questions about the drugs but before I kind of mention them I was interested in whether or not, you can sort of say no to this but did the quality of care change once you were put on any studies? Did things change?

Yes. In a sense when I get put on studies it’s like I’m on, in private care, anything I want. Although my doctor when I’m; if I phone up my doctor I can get an appointment whenever I want and she’ll talk to me whenever I want but that’s not the way it’s supposed to be. That’s just something she’s taken upon herself whereas in the pop studies I get extra scans, to go to the nurse if I need something at any time, any time of night I can phone up. I get seen after the clinic, I don’t get seen during the busyness, I get seen after on my own individually. It’s kind of like private, going private. It’s not with everybody else so there are advantages to doing it. But at the same time I’m lucky enough to be with a consultant who is always there for, you know, any, any kind of question I have, any illness I come with, you know anything that happens to me, you know, I can phone up, phone up the nurse and have an appointment within a week or two.

I felt once she went on the [tocilizumab] trial, she’s been very well looked after. She had her own nurses, the trial nurses and they take her to every department, we don’t have to wait, we don’t have to queue. We, you almost feel like you’re queue jumping, you go to the x-ray department, you queue jump, you just go in and have your x-ray, you go to, because she, she volunteered to go on a, a little extra bit on the trial where she had to have regular x-rays done. Also when she has her bloods taken, somebody from the lab comes up and he takes the blood and puts it in the different tubes and so on and he’s the man in charge of the lab, you know. You just feel that you’re getting care and better retention and not having to wait the same and the; on the, on the ward she didn’t have to wait on the ward, as soon as we got there, they’d take her and they’d do all the different observations that they have to do – record all the different data and then they’d get her a chair straight away. Apparently we’re coming off the trial now. She’s been on it now for two years so she’s finished the trial and this next time that we go is the first time as a normal patient and we’ve already been sent back to a normal ward. We’re not on the trial ward anymore and they’ve basically warned us that you’ll probably have to wait because you’re; you’re just like anybody else now so I suspect that the care will change a little bit.