Transition: Moving to adolescent or adult services for arthritis

The process of moving from child to adolescent or adult services is called transition. The age at which people transition from a children’s (paediatric) rheumatology clinic varies a lot and the process is different in different hospitals.

In some places, young people first move to an adolescent rheumatology clinic, and in others they transfer to an adult rheumatology department. Not everyone with arthritis will have the same experiences of transitioning from one clinic to another, and sometimes people only have access to adult clinics.

When Joseph was 10 he went to an adult clinic. He later went to a children’s hospital and found…

Age at interview 17

Gender Male

Age at diagnosis 7

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When I went to [city] it was just that I’d been in such a, a small clinic in [town] with all the old people and they didn’t. Although I was ill and in pain I didn’t feel that I was really ill because when I was going to a children’s hospital in [city] I thought it’s a children’s hospital. It’s going to be, you know, you see on the TV all these really, really ill children and I didn’t associate myself with being like that. Obviously I was but I didn’t feel like that because I’d never been aware of how ill I was. Although I was in pain and everything and I just didn’t feel that I was one of those ill people that you see in the children’s hospital.

There are two things that I wanted to ask. One is you just mentioned you were in a small clinic and there were a lot of old people…

It was an all-adult clinic.

How did you find it?

It was not very, I don’t know what the word is, pleasant. I remember once I went to the desk and said, It’s Joseph [surname] in. My mum’s just parking the car. And he said, Oh is it your mum that’s seeing the doctor? And I said, No it’s me. And I remember thinking that was a bit strange cause I was the patient but they thought that my mum was the one that was the patient. And being with old people when you’re 10 you don’t really think it’s, you know, they don’t think it’s you. Doesn’t feel quite right.

So you were staying on the ward when you checked in to?

I was in a children’s ward but the after clinics were all-adult, rheumatology clinics. So I was a rarity.

And how did it feel to go to a children’s hospital when you saw people more of your own age?

It was, it was strange cause I’d never seen anyone else with arthritis so it was a completely new experience meeting people. And I went on the weekend organised by the CCAA, the charity for children with arthritis, meeting all these other people and talking to them. And it was strange because I’d never met anyone or talked to anyone. And realising there was people going through the same thing as you was, a relief in a way because you didn’t think, oh it’s just me. Cause you had all these other people that had been through the same thing and, and come through the other side so it was a relief to meet people that were in a similar condition.

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The people we spoke to who were preparing for transition, or who had already moved from children’s services to adolescent or adult services, described different ages when transition took place. Some moved to adolescent or adult services between the ages of 14 and 16, whilst others didn’t move until they were in their twenties. For example, Deni moved to adult services when she was 14, whilst Catherine was still going to adolescent clinic when she was 24.

Dean thought it was embarrassing to be in paediatric services at 19 years old. However, he was…

Age at interview 19

Gender Male

Age at diagnosis 2

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But when you were initially diagnosed you were thirteen you were sort of paediatrics services at the hospital?

Yeah

And then you’ve moved on to adolescent or adult services?

No

No you’re still in paediatric services?

How embarrassing.

Do you feel that’s embarrassing?

Yeah, because I’ll be the oldest one now.

Right and I mean when you go are there other small children or young people?

Yeah, but I’d like it like that because they’d be looking up to me and then I’ll be telling them it will be alright and everything.

So do you kind of support other people when you go to your appointments?

When I was there, when I was staying there I would.

What? Sorry say it again.

Well I used to stay in the hospital for the procedures and then I’d like talk to wee ones or whatever.

And what kind of things do they ask you?

They’re just feel like, they’d only be like wee innocent things, they wouldn’t know anything really but then I’d just like talk to them and be like, "No it’ll be fine," and ask them if they’re OK and just, you know, just general stuff.

Did anyone do that for you in your early days?

Yeah, yeah.

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Cat was diagnosed at 14 and mainly saw an adult rheumatologist. She never went through transition…

Age at interview 24

Gender Female

Age at diagnosis 14

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Didn’t really happen for me because although I was diagnosed as a child I saw a paediatrician I think twice and then I saw an adult rheumatologist and I’ve always been treated by an adult rheumatologist so I never really had a transition but the only thing I really feel I missed out on is that I’ve noticed that children with JIA seem to have a lot more care basically so if they’re poorly they’ll get hospital, they’ll get admitted to hospital and although it might seem a silly thing to say that I want to be admitted to hospital, when I’m really poorly and I can’t look after myself I feel safe in a hospital because I feel like people can at least try and do something for me and I’m not trying to look after myself and all that kind of thing but as an adult with RA that rarely, if ever, now happens where you’re actually hospitalised because of the disease itself. Obviously complications say with my stomach and everything I’d be in hospital but never directly because of the disease and I think as a child you kind of get that much more hands on care I think, that’s the impression I got anyway. I never really had that but I never, I never went through a transition because I never was treated by a paediatrician so I don’t know what a transition through adolescence would be like because it never happened to me so.

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The transfer could also depend on how flexible doctors could be. Sometimes people had to leave once they reached a certain age. Michelle moved on when she turned 16. But for others it depended on personal circumstances, such as whether or not they had been put on new treatment, how ready they felt, or whether or not they were in full-time education. Jenna took part in a clinical trial and wouldn’t move to adult services until the trial was over; David Y’s doctor felt he was too poorly to move at 19 so waited until he was older; Chantelle was going to move at 18 but was in the middle of a flare so doctors waited.

Karen felt that her daughter, Jenna, didn’t need to transfer to adult services until she left…

Age at interview 49

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The next section then is on transition and I remember speaking to Jenna about this and am I right in thinking that the view was that it’s unlikely that Jenna would need to make the transition to adult services?

We asked the question and they said that they would keep her at [name of hospital deleted] which is a children’s hospital until she leaves full time education probably. If she stays in full time education she can stay there but once; they said it has been known that sometimes they will stay with them till sort of twenty one best case scenario but other than that if she got a job, she would have to go, I presume our local hospital where I go to.

That’s interesting, a lot changes. So it’s not on necessarily needs, it’s to do with the employment status?

Yes

OK

That’s how I understood it. If they are in education, then they can keep them but once they get a job, so if she left school at sixteen presumably and then went out and got a job, I think she would have to go to the, the normal hospital.

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Thoughts about moving to adolescent and adult services

Different people felt differently about moving from paediatric to adolescent or adult services. Some didn’t have strong feelings about moving. Jenna hadn’t given the transition much thought, and Tom said he hadn’t been treated by his paediatric team long enough to be too attached.

Some were pleased about the move because they felt they were too old to go to paediatrics. Elizabeth said she was too old to watch Disney DVDs and play with Duplo.

Transferring to an adult clinic at a different hospital could make the practicalities of getting to appointments easier. For Sabrina and Jenna the adult hospital was much closer to home than the children’s hospital. Sabrina was pleased that she didn’t have to rely on her dad for a lift to the hospital, whereas Jenna’s mum was happy because it meant Jenna didn’t have to miss so much of school. Jazmin’s mum was “excited” and felt that this meant she was becoming independent. Charlotte Z was happy because the new hospital had an excellent reputation. Being able to make more decisions by yourself was also seen as important to those we talked to.

The thought of moving from paediatrics could be “worrying” and “scary” when people had been in the same clinic for so long and developed emotional bonds with the staff. Some said they would be upset because they had known the health professionals for many years and would miss them. Sometimes people worried about how they would get on with their new doctor or what a new hospital would be like.
It could be just the unknown that concerned people, such as going to a new hospital. David Y pointed out that some people “don’t like change”. People wondered if they would have different tests or new treatments. They also worried about the new staff not having enough information about a person’s medical history.
Bradley had a phobia of needles and didn’t want to have blood tests when he went to his new hospital.

Some parents were also worried. They thought that adult rheumatologists could be less friendly, less personal and more serious or that they would have less time in the clinic.

Karen felt that seeing older people with arthritis who had limited movement be “alarming” for young people and a possible reminder that “that’s your future.”

Treatment has improved so much over the last 5–10 years that it’s now rare to see young people in wheelchairs because of their arthritis.

People also pointed out that in paediatrics they could access treatments quickly and flexibly and worried about possibly longer waiting times in adult services.

Preparing for transition

The people we spoke to described the ways in which rheumatology staff helped prepare them for transition. Some were given lots of information such as leaflets or staff explained what to expect. People were sometimes taken to their new clinic and introduced to staff that would care for them in the future.

Tom visited the adult clinic before being transferred there. He felt more in control after…

Age at interview 18

Gender Male

Age at diagnosis 14

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Well when I transferred from the children’s hospital to the adult clinic they did a transition period where they asked me to go and see the doctors on my own, just to get me ready for it. And I can see why they’d do that, to make you more independent. But for me I didn’t think it was that useful because nobody really likes going to the hospital on their own anyway, so even my parents would go together. But I think it did help. It made me feel more in control of my own condition.

And it’s really sad leaving everybody cos they’re like a family there. it’s so great to go and you can just walk through the waiting room and say, Hi, hallo, how are you to people that remember you on sight, which is really nice to feel like that.

They prepared me. They made me see the doctor on my own. So that was one step. Another thing that they encourage was me coming to hospital completely on my own, rather than just leaving my Mum in the waiting room, which I did a couple of times when I came from college, went on the bus all the way to the children’s hospital. That was an adventure. I wasn’t late thankfully cos I’m normally late for everything.

Apart from that they took me, they had a little day when they took me to the clinic that I’d be moving to this transition nurse from the children’s hospital came with me to my current hospital and she just showed me round and said, This is where this will happen. This is probably where you’ll be, there are the nurses you’ll probably see and introduced me to them And it was really nice. I mean it helped me settle in a bit I think, just getting an idea of what the place would be like before I actually went there.

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Doctors reassured young people that they would be in good hands when they moved on. Occasionally people saw both their paediatric consultant and their new consultant together for a while. They said this helped introduce the new consultant to their needs.
Those young people who were moving to university sometimes had to choose if they would like to transfer to a new hospital in their home town or to one in their university town.
One aim of the transition process was to help people become as independent as possible. For example, they were encouraged to come along to appointments by themselves. They were also encouraged to speak up more during appointments and write questions down so they didn’t forget when they saw the doctor alone. Parents could play a role during the transition by encouraging their children to rely on their own initiative and develop confidence to do things independently. Parents participated less and less during the consultations, saw the doctor after their child saw the doctor, or didn’t go in at all. This helped build young people’s confidence to be independent.

Paul encouraged his daughter’s independence by encouraging her to think about what she wanted out…

Age at interview 49

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Do you think parents play a role in that transition?

I think the transition as well as Right well you can, you can go there, I’ll sit outside perhaps I’ll drive the car but I’m only the driver. And just taking less of a role in each of the interviews, starting from 14 or even earlier than that. Less of a role. Talk about what you want out of out of a visit, a consultation, what are we here for? We’re not here just to be guinea pigs to be looked at, prodded. We’re here because we want to know something, we want to get to somewhere. We want a hip replacement. We want to train the doctor to think about something. You know introduce a new topic. And sometimes you, it might take a year for the doctor to sort of like cotton on and even if it, after a year the doctors thinks, Well that’s a, that’s a good idea of mine yeah let him think it’s a, like you’ve introduced it two years before. So it’s about, it’s about letting the child take more ownership, more and more and more, until you sit in the corner and you open the door and let, and you, and that’s it. And I think it’s perfect, you’ve achieved, if you don’t have to say anything, they just say Thank you, thank you, bye You have achieved it. Because then that child or young adult is then ready to face adult services. Yeah.

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Sometimes these changes took months and people were given lots of time to adjust. But few of the people we spoke to didn’t have any transitional period and were thrown “straight into the deep end”. Both young people and parents recommended that young people should have time to plan and prepare for transition rather than “dive straight in”.

After transition

The people who had already transferred to an adolescent or adult rheumatology clinic said lots of positive things. Some were surprised at how friendly health professionals were and realised that there wasn’t anything to be worried about. They sometimes felt that they had more say in treatment options and were pleased with how quickly health professionals got to know them and how arthritis affected them. David Y said his adult rheumatology team “hit the ground running”.

Since Elly has been attending the adult clinic she has had more access to her consultant and…

Age at interview 21

Gender Female

Age at diagnosis 9

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I find almost that now that I’m in the adult clinic it’s simpler. And I know that probably should be the other way around but I always feel like my doctor will happily explain anything. Whereas some doctors I’ve seen, I don’t know if it’s because when they’re , this is going to sound really harsh, but when they’re a paediatric specialist there are so few of them that they’re much more important in their field, which doesn’t sound nice in what I’m trying to say. But if so they don’t, and so you see more registrars than you do sometimes consultants.

Yeah so I’m not really sure, like I don’t remember, I think if it isn’t adolescent clinic, whatever it was, the one before the adult clinic they, the actual consultant wouldn’t talk to me as much as the registrars would, if I can remember correctly. Yeah. That is, but one difference is that now I always actually see my consultant which is really nice to actually always see the same person. And so she will always remember you, I’m sure the fact that you know they’ve only got a handful of young people helps, but I find that because you always see the same person it is much easier to tell them what is wrong, whereas when you’re younger you see different people even if it’s meant to be the same doctor. I think that is a big difference for me you know yeah.

Is it different on a personal level?

Yeah I feel like I know the doctor much better now than I ever used to again that may well be because they only see a few younger people, and so yeah I do definitely feel much more personal relationship with the doctor. I feel like she knows me you know even though I don’t know if she’d ever remembers me or if she just looks and says, Oh yeah that one Which, whatever, they know and the nurse, it’s always the same nurse as well and she remembers me and they’re always like, Ah, Mum or blah blah blah, and I never really remember feeling that when I was in the younger clinics. Probably because yeah as I said they only see children, whereas now it’s not like that. So I think that I have a better relationship with the doctor now than I did when I was younger. Maybe that’s because I’m doing it all by myself as well. So it’s more up to me to make a relationship.

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Catherine thought the adult rheumatology team would be impersonal but this wasn’t the case. The…

Age at interview 24

Gender Female

Age at diagnosis 4

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Well I was always kind of told that when you go to the adult centre it’s more, it’s not so personal. You just walk in and they don’t really know you so well and it’s more, they won’t, you know, when you’re little they take time about everything to make sure, especially if they’re doing joint injections or injections or anything, they’ll make sure you’re OK first and things whereas when; I was told when you’re older that’s it, they’ll just shove a needle in and then you’ll be out the door. But it hasn’t been like that I suppose from, because of going to the adolescent services rather than straight to adult and it’s like; they’ve pretty much been the same. I think when I was younger I probably had, I probably knew the doc, the consultant more and like the staff more just because I was there more frequently and I was going to a lot more services there whereas now it’s literally every six months that I’ll see my consultant but again like I say I’ve been lucky, she still knows me when I go in there and she always asks me questions about myself and we get on really well so I’ve been lucky in that sense, I haven’t just been shoved from sort of really friendly doctors to the adult services. I’m sure there’s of friendly doctors there but
Did you receive any information about the transition?

Yeah I remember I was told quite a lot about it before I moved over actually and I had, it was sort of like a slow move thing, it wasn’t like a, they were like, Right you’ve got to go now kind of thing. They sort of told me a lot about it at the time and then I got to meet the consultant first and it was sort of, when I first started as well it was, you could go and meet like other adolescents there, they all sort of all had their appointment at the same time as well so it was quite good in that sense.

Was there a difference in the kind, even like the reception or, or the clinicians office, was there a difference there that you noticed?

I suppose in, yeah, when you’re in the children’s services, I suppose everyone’s a lot more friendly and like will talk to you and spend time talking to you whereas it’s just, I think it’s just that busy to be honest in like, like the adult services that people don’t have as much time to just, but you know everyone’s been lovely and it’s still the same but I suppose not quite as, not quite as friendly and as much time as you had in the children’s services. I suppose appointments lasted a lot longer, you were there a lot more and things.

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Some of the people we spoke to said that they kept seeing some of the same health professionals after the transition. They were pleased to see some of them but were sad to see others go.

Some of Gemma’s doctors remained the same when she moved from paediatric to adolescent services…

Age at interview 15

Gender Female

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I just like, for the Paediatric to Adolescent like it wasn’t that much different cos I’m still seeing some of the doctors that I saw in Paediatric in my Adolescent one. it’s just a different time and a different place.

And that’s literally all that happens?

That’s literally all that happens for the Paediatric one, but from Adolescent to Adult it’s a bit different because I’ve got to go from one hospital to another, like one team to another. And because I’ve gotten to know them so well, and because I trust them so much it’s gonna be weird going through to a different hospital and a different team. Like for my eyes as well it’s the same but I’m gonna stay, like for my eyes it’s a bit different because my eyes I’m staying with the same doctor, cos I’ve followed him since I got diagnosed, we’ve followed him to every single hospital that he’s been to, and we’re following him again, little stalkers.

But I got kicked out of the children’s hospital eyes at 16, like the day, like there’s no, even if my eyes were flared up it would be, Tough, you’re out of that door But with Rheumatology it’s between 16 and 18. So it’s a bit of a longer transition period but I still don’t wanna leave because it’s like a security blanket for me. it’s a bit weird knowing that in a few years time I won’t be going there anymore.

Yeah, yeah.

So I’m a bit worried about it but I know that the new doctors will look after me cos everyone, the one that I’ve chosen to go to, that sounds really good and most people go there.

So it’s kind of making me feel a bit better.

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If the young people didn’t feel comfortable with talking about the details of their arthritis in the clinic, their parents could join them. However, people found that going alone to an adolescent or adult clinic meant that the doctor communicated directly with them rather than with their parents. Jessica’s mum used to go into the clinic with her after she was transferred. She noticed that, unlike before, the doctor spoke directly to Jessica and made less eye contact with her mum. Sometimes it was hard for parents to “let go”.

Jazmin found that her doctor spoke more to her than her mum when she moved from paediatrics to…

Age at interview 20

Gender Female

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Well obviously paediatrics your parent was there in the room with you and obviously mainly the doctor would talk to your parent more than you. Obviously I would ask questions so obviously the doctor would talk to me about that and like I remember when I’ve had x-rays and like, "What’s that?" sort of thing and then the doctor would point it out to me. But obviously when you translate into adolescence and into the adult clinic you want to be more independent and obviously the doctors and your parents, or even though the parents would reluctantly want to but they encourage you to like go to the clinic yourself. It was like, it first started off like a, when I was a teenager like my Mum would come with me but she would sit outside and I would be there with my doctor and we would just, it was like just as if my Mum was there but she was just like talking to me and like everything more like that and you just like; you built up your independence and everything and then obviously as I got older and obviously when I learnt to drive and everything it was just more easier that I went by myself and everything because obviously Mum was busy and everything so.

Yeah obviously then you, I think I remember the first time it was a little bit scary for me going into hospitals like telling them I’d got an appointment with my doctor and I got pointed to the ward even though I remember where the ward is for my hundredth time but it was a little bit scary at first but then as soon as I was in the room I felt relaxed because I like know my doctor, I know who it is sort of thing so. It’s a bit scary at first obviously walking into hospital by yourself but once you’re in that room you just like, you’re in a familiar environment you would say and obviously it greatly helps your independence and also as you are, it was terrible when I had to go into the adult clinic because I didn’t want to go because like I’d be seeing the same doctor and everything but I wouldn’t see my paediatric therapist I got along really well with and I was like, "Oh I won’t see you anymore." It’s just that it was really hard with that but it was fine. It’s like, I just went to a different clinic but it was still the same doctor and it was just, I don’t know it’s just finally transcending into taking matters into your own hands, with your own illness and everything and obviously with my Mum like, "Oh how did the appointment go?" obviously when we go back home but it’s more, you’re more in control and you have more of the power I would say when you’re like transcend into, like going to clinic by yourself and then going into the adult clinic, you know and… the only difference in the adult clinic is there’s older people sitting next to you, that’s about it really.

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Transition helped young people become increasingly independent in managing their conditions. For example, they began to order medications and went to blood tests by themselves. Some wrote down the results so they could remember what was said and pass it on to parents if they wanted to know too.

Staying fit and healthy with arthritis

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