Long term health conditions (young people)
Transition from children's to adult services/clinics
Some of the young people we talked to have lived with their condition all their lives while others were diagnosed as a child or teenager. Most of them had a great deal of experience of using the National Health Service. Some have attended children's clinics and adult clinics, and a smaller number have used adolescent clinics. In this section young people talk about their experiences in different clinics, their concerns and what needs to be improved. They also offer advice to medical teams about what to expect when treating adolescents.
Most young people said that their clinic team knew them well and talked to them about their lives in general and not just their health condition. Some said that they're on friendly terms with the staff and this made them feel more confident. It was clear that some medical staff really made an effort to understand what it feels like to be a teenager living with a long-term condition (see also 'Dealing with feelings and emotions'). Young people who said they were unhappy with a clinic usually described a bad experience with a particular member of staff, or complained that the consultant spoke to their parents, not to them. (Also see 'Talking to doctors and nurses' and 'Getting on with your health care team'.)
Her first children's consultant talked to her mother and not to her. Her adult consultant is nice...
Her first children's consultant talked to her mother and not to her. Her adult consultant is nice...
Yes.
Okay. Can you tell me how was that experience?
Good. I mean he was a really good consultant. He - I mean the first consultant I didn't get on with at all. I had to change because I didn't get on with him. He spoke to my mum only and because I am not, well I felt I am not really, I wasn't kind of a child at that age, I was a teenager, I wanted to be spoken to, not my mum and because it was me with the problem. So [laughs] I wanted to be moved. I hated him [giggles] Yes [giggles]. So yes, the second one he was nice. He spoke to me [giggles]. And he got me involved and yes, he spoke to me more and though, even though because I am unconscious when I have my fits I don't remember everything and of course I can't really get involved with the conversation so' but he spoke to me, even though it was my mum doing the talking for me. Does that make sense?
Yes.
So he was looking at me and he was talking.
I think that was great. I mean he is' because we have just finished the pass over session from the children's to the adult's kind of hospital. He just sent a final letter saying, hope you are all right, and' So I thought that was really nice, just to say you know, if you do want any help in the future, I am always here [laughs].
Oh that was nice. That was very nice. Tell me when you changed clinic you went from the children's to which type of clinic. A transition clinic or an adult clinic?
An adult clinic in neurosciences.
Can you tell me a little bit about how was that change from a children's to an adult's. What were the main differences?
Well from the children's you have of course got loads of like two year olds running around and you feel a bit awkward sitting in there because you are like 17, 18 [laughs]. Slightly awkward with all the bright colours [laughs] and you kind of want it dulled down slightly and then in the adult one you feel a bit depressed because you have got all the sad faces and it well. [hospital name] needs a bit of a boost really. I think it does need to be knocked down even though there are all petitions saying it doesn't really. It should do really because yes ' [laughs] It is a bit depressing really but I have got a really nice consultant and she is really good.
Children's clinics
Several young people who were still attending children's clinics said that they were happy with their care. Some said they didn't feel ready to move on, or had mixed feelings about the prospect of leaving the children's clinic. They liked the casual atmosphere and friendliness of the staff and didn't want to change to the adult clinic. The children's clinic was a good place to meet and befriend other children with similar conditions and talk to them about issues to do with their condition. Many young people told us that it is quite scary learning to talk to medical staff and finding out about treatment and medication. Often it was their parents who dealt with the health professionals and organised the treatment.
As they got older some felt it really was time to move on to an adult clinic where there wouldn't be small children running around and not so many bright colours! It could still be a difficult break to make though and, as a result, some young people greatly appreciated being able to stay in touch with their old consultant after they transferred to an adult clinic.
Felt unsure about being transferred to the adult clinic at the age of fifteen. Found it a...
Felt unsure about being transferred to the adult clinic at the age of fifteen. Found it a...
And it was actually when when I was a child that I really just sat there and it was the adults doing all the talking and they would sometimes ask me how I felt. You know maybe just emotionally or just in general. But it was very much my parents who were very much in control. So you know, it was very much of a shock when eventually I went to the adult clinic which I actually transferred there quite early. I think I was, I'd just turned 15 and I was a bit of a trouble-maker. It's when I just started to go through my trouble phase. And I don't think that the paediatric team felt they could cope with me anymore and they went, just shipped me off and said, 'Right off you go'.
You know and I remember feeling really sort of scared because I was like, 'Oh gosh I'm going to'. They were saying things like, 'Oh you've got to start talking to the doctors now. You've got to answer all the questions.' And I was, you know, thinking, 'Well I'm going to have to go home and you know, revise all the tablets I'm on because I don't even know what I'm on'. You know, I just take them. You know I haven't actually looked at labels. And they were asking me, you know, 'Are you on acidic acid???' And I'm thinking, 'I've never even heard of, you know, acidic acid???' But it turns out I was on it and had been on it for some time. It's just that as a child my parents had completely been in control of my regime and suddenly they were allowing me to do it on my own. And I remember, also remember feeling that very grown up because I felt that I was in control and in a way it was the next step to adulthood and I did feel. When you're a teenager you constantly want to prove to everybody that you're grown up and that you can take responsibility for yourself and you know, 'Oh just stop treating me like a kid' is, you know, typical, typical saying.
And in a way at first I felt scared but then I felt a bit excited because I was like, 'Oh well you know, if I don't want to take my treatment I don't have to'. And if I don't want to do my physio, ooh I can, instead of watching Coronation Street doing my physio I can just sit and watch it on the sofa and not do my physio.' And I thought that was great. And that was rather [laugh] silly of me but I did feel as well that the doctors I was, I just felt I was a bit too young at 15. I didn't know what to say. I didn't know how to present myself. I mean I just felt really embarrassed when they asked me. I mean I, I thought I was embarrassed when they were asking my parents about it but when they were asking me about my stools it was even worse because I would have to answer. And what I found really annoying about some doctors that were maybe training like medical students were that they were actually embarrassed as well to ask the question which makes, makes you feel even. You know it makes you feel so awkward because you're like, 'Well you're the doctor'.
Compares being at adult and adolescent clinics. Developed a good relationship with his team....
Compares being at adult and adolescent clinics. Developed a good relationship with his team....
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 [laugh]. Doesn't feel quite right [laugh].
And how did it feel to go to a children's hospital when you saw people more of your own age?
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, come through the other side so it was a, a relief to meet people that were in a similar condition.
I assume it was a positive experience?
That was very positive 'cause you know, it's just nice to be normal [laugh] in a sense you didn't feel the odd one out [laugh].
Where will the clinic be in the university town or here?
They haven't decided yet. Obviously 'cause it's not definite where I'm going. But it's likely that I'll keep a base in, [city] because I'm transferring my care there to the adult clinic. And it's possible that if I go to [city] it's the [city] campus that they've got a contact in the town so I'll have a base there and a base back in [city].
Ok. Have you seen the consultant here, the adult consultant?
Not yet I'm just waiting for my first consultation appointment which will be around March time. And I've got a back-up appointment booked in [city] for the summer just in case there's any issues with the consultant in [city] where I'm not happy. I've always got back in [city] that appointment but I don't have to go to it. It's just a back-up.
Ok so does it mean that you have a say whether you sort of if you feel comfortable with it?
Yeah if I, if I'd go and I completely don't get on with the doctor in [city] and I don't feel comfortable with them I can go back to [city] and address the issues. And hopefully resolve it [ha ha].
I always had a really good relationship with Dr. [name] and Dr [name] And it was quite casual and
In the adult clinic you are in control and it is a quicker and more relaxed service than in the...
In the adult clinic you are in control and it is a quicker and more relaxed service than in the...
And in the children's clinic?
In the children's clinic, I mean, I used to know a lot of people. I mean from the age of sort of 11 to 16 you could go to clinic and you would see people that you know. So even though you wouldn't maybe talk to them at least there was someone there who is in the same position as you. And when I was younger I used to go to hydrotherapy every Wednesday, that was at a different hospital, but again you met people, there was people there your age, only about six or seven a week, but now you don't get to hydrotherapy.
In which way is it important or was it important for you to see younger people around you?
I think back then it was quite important, you know, because as I was growing up, you know, I mean, I went to school where there was disabled people, but it was a mainstream school, but there wasn't anybody, you know, with the same condition as me. So the only time I got to see people was at the hospital. So that was okay. I mean nowadays I wouldn't mind seeing a few more people but there again I have got other friends, you know. So the friends I have got now are perfect and you know I have met from university, so in a way I don't need that contact with the arthritis but I am just saying, you know, just occasionally it would be nice. But I don't. I haven't seen anybody for ages.
Moving from the children's to adult clinics
Some young people said that their experience of transition (moving) from the children's to the adult clinic had been very good. If their children's consultant established a good rapport with them and not just with their parents they grew accustomed to dealing with medical staff and asking questions. Those who were slowly introduced to the adult's clinics got to know their new consultant and other members of the team but were also able to go to their children's clinic until they were ready for the change. One young woman with cystic fibrosis explained that her transition process started when she was sixteen and didn't complete until after she was nineteen years of age. She said 'I'd grown so attached to them, and it is quite hard and so, I didn't want to fly away from the nest'. Several young people said that the adult clinic was less formal and better because they felt they had more control over their condition and treatment.
Nurses from the adult clinic visited her at her paediatric clinic and at home before she...
Nurses from the adult clinic visited her at her paediatric clinic and at home before she...
And although I was quite apprehensive and thinking I didn't really want to move, right from the first appointment I knew that I was going to be absolutely fine. I was shown round the clinic and explained everything. And I had my first appointment with Professor [name]. And they, like I'm really, really happy with the care I receive there. And I settled in quite well. And now it's just like it was before. I just, it's just like kind of being at the paediatric centre but it's a bit different. So yeah everything kind of is, is. Although I was quite worried about it I, I do feel like I receive excellent care there and I, I'm like happy there. And it's also quite near to where I'm at university. So when I have clinic appointments I can literally just get the bus there which is quite handy. So that's good.
She didn't feel prepared for what would happen at the adult clinic, and was especially shocked at...
She didn't feel prepared for what would happen at the adult clinic, and was especially shocked at...
Well, I used to go to [hospital], and they used to take me, to go every six weeks, and , they would just do like my SATS, my blood pressure, lung function, I'd go and see a dietician, and then I would see my consultant who would just do a general physical examination, and it is pretty similar at the [hospital] where I go now, they do the same sort of things, you know height, weight, I get a physical exam again, my lung function they make you do, but it's a lot less frequent, and it's a lot, it's freer because you're not sort of made to go, it's sort of there for you if you need it. It's sort of an open clinic a lot of the time, so it is quite an easy going process.
So you went from the children's to the adult clinic?
Yeah.
Okay. How long ago?
Quite recently actually, like I went when I was 16, I went up to the adult clinic, but it was quite a lot out of the way, it was a bit of a, it was a little bit of a shock for us, you know, compared to seeing young children who you know you talk to and you get to know, and you get to know the team, the nurses, the doctors, and then its like a bit of a, a shock when you go into a different environment and there's adults and people with like pulmonary disease and it is a bit of a shock when you're 16 and you've never really had to deal with it. So, I made an arrangement where it would be easier for us to go somewhere, you know, ten minutes down the road, straight across the road from my school, and, you know, I knew everybody, I was comfortable, and then just as time progressed I slowly, I slowly sort of progressed up to the [hospital], now I just stay at the [hospital] full time now.
So to begin with the adult one was a scary place?
Yeah it was a little bit sort of, it was, they didn't really type of brief, they didn't brief us to tell us like what would happen, like, a lot, where I used to go in [hospital] they used to like the lung function tests and the height and weight and everything was done in a separate room, and then when I went to this, the first time I went to the clinic I had to do my lung function in sort of a communal room and there was five or six, and there was a young woman next to me who had like a white string vest on and like her lungs were all swollen out of her back and she was all ribs and bones, and it was just sort of a shock to the system, and you know I came out and I was, I was really shocked and my mum was shocked as well, so, it just was something that I thought, 'You know I don't need to see that right now.' I would prefer it to be a private clinic and me do it in, in private quarters, there wasn't even curtains dividing each person, so it was quite, you know, a bit of a shock, and then.
So my old consultant contacted the RVI and told them of my, like explained my concerns and says that you know, she's not happy about going back, she wants, you know, she'd rather do it in like private and, but he basically sort of said, well they can't change the process, so when I eventually had to go to the [hospital], I didn't really have a choice, when I went to the [hospital], the second time, it was a little bit different, you know it was really quiet and there was sort of curtains, there was two women at the time and there was curtains separating them, and although you know I am a lot older now, so, you know I have, I've been on forums, you know and I've contacted people with CF so I know a lot more about it now, than I did when I was 16 so, it was less of a shock for us, and it was a lot easier, it was, you know everybo
Several young people said that medical staff need to understand that, for young people, the transition from child to adult clinic is not just about 'medical' matters. As teenagers grow up they start to need information and advice about education, relationships and sex. They stressed the need for staff to be prepared to address these issues in an appropriate and sensitive manner. One young man interviewed has been very involved in training medical professionals on how to relate to young people. A young woman said that the transition from the children's to the adult clinic has been one of the biggest problems she's had to face. Some clinics have staff (sometimes a nurse or social worker) who talks to young people about teenage issues. One girl said that her clinic asked her to fill in a questionnaire about family relationships, education, sex and so forth.
His gradual transfer built up his confidence. Suggests what needs to be done to make sure that...
His gradual transfer built up his confidence. Suggests what needs to be done to make sure that...
Okay. Well in my experiences, you know my transition is actually quite good I think. It was one of the best from what I have heard. Basically when you are transferred it is not a case of just going from the children's clinic bye and never see you again you are thrown into the adult based clinics. You see at the adult based clinics you are by yourself, you don't have your parents in the adult based clinics. So you have your parents in the child clinics and they are in control. So what I would say is what I had when I was about 14 I was allowed to see the doctor by myself first and then my parents came in afterwards and so that allowed me at least to build up a bit of confidence and to ask my own questions. To take a bit of control. I mean I didn't have full control. My parents still were there, but you know I could at least get an idea of what it would be like. I mean you can't possibly go from a child based clinic where your parents are just to be thrown into the adult based clinic and expect to be able to know what to do. You know regarding asking questions, regarding managing medication, regarding appointments. You know you need to be able to plan, you know to get it right in your mind what it is going to be like. So I would say no it starts right from when you are 11, 12, you know not just when you are 14, 15, because some people leave when they are 16 the adult based' you know for different illnesses it is different. Like for arthritis I didn't leave until 18 which was quite late that was. But for a lot of illnesses you get moved on when you are 16. So you have to be ready for that. So I would say start when you are 11, 12, 13, 14 you know.
At least if you have started earlier so you can plan, move on and it is not just about the you know your condition, but it is also about everything a teenager needs to know about school, about sex, relationships, anything like that, you know it is about growing up. I mean the teenage years are probably the hardest of your life so it is not just about the illness but I would say the team need to know about everything as just opposed to just about the illness and you need help with that. So it is not just about the illness you need everything and that needs to be transferred to when you are a young adult as well. Like me, I mean, you know, I still need advice on many other aspects of life. So it is not just a case of purely about the illness.
On which aspects for example?
Well if you are at school and you need advice about school, about friends, about relationships, you know, you know, growing up, you know, I mean in your teenage years you are growing up aren't. So you are turning into an adult, so you need that support as well.
Did you have much of that support?
I think I did. I mean I have always had the back up at school from the hospital. If I have ever needed anything, then they have always been there to provide it for me and you know, the hospital, they got involved with the school. It is the same with any other person, anything you need you can get and the hospital have always backed me up in that respect you know, but I guess you know I am quite a private person. I have never really asked for the emotional support as such. I would say as well as your illness there is the emotional side of that illness, which is just as important. I say it is being able to cope with it is just as important as managing your illness.
She was unprepared for her transition and found it hard. As a teenager there were other things...
She was unprepared for her transition and found it hard. As a teenager there were other things...
But I do feel that the transition process could have been easier. I mean the steps now that they take that are so much better in preparing people for transition. I don't know or if not that makes it any easier I only have experience of what, what you know, what I had to deal with. But I think that with transition there are so many other things going on. You've got your GCSEs are maybe coming up. You've got life-changing decisions as I've just discussed about, you know, career and things. And you know then you've got all the worries of I haven't got a boyfriend or, you know, or I fancy so and so and all the usual teenage problems on top of that. And it [ha], in the meantime you're actually trying to take your medication and you're thinking. You're trying to please your parents.
And I think that transition can be very hard. If I was going to say that any point of my life so far has been difficult I mean university was, you know, pretty difficult but I would say transition was the hardest part because it, it's at an age. It's, it's just that age where you've got so much going on. And your priorities are not necessarily your health but everybody expects you to put your health first and that's a really hard decision to make. And I wouldn't blame anybody for you know, let it, sometimes let, letting their treatment slip because it's so hard to keep all those balls juggling. And I think that maybe there needs to be a more real appreciation of that in, you know, the medical world and maybe needs to be a bit more support for patients and. I mean if they don't get it again ask, go look for it.
See if there's somebody that can maybe help out and help you prioritise. Even if it's just to, to look at where you're going and the types of treatment, assess your treatment if you're feeling it's too much. You know.
The different way that adult clinics were organised was confusing for some people, especially if they hadn't been prepared for it. One young person wondered why they always seem to wait for over an hour at adult clinics.
Many of the young people we talked to have had to spend time in hospital for treatments or when feeling ill. When they were under sixteen most said that their hospital stays were usually good and that the nurses are 'brilliant' and very friendly. But many said that when they are over sixteen they have been placed in adult hospital wards and found that experience depressing and even frightening. Young people who had been in adult wards felt very strongly that there is a need to create 'young people's' wards where they could be amongst other people their own age and feel better cared for and more protected. (Also see 'Surgery and hospital treatment'.)
Being on an adult ward was like being put in 'an old people's home'. She says that staff do not...
Being on an adult ward was like being put in 'an old people's home'. She says that staff do not...
Ok. So it's more kind of the environment that it depressing.
Yeah definitely the environment yeah is very depressing.
That they don't have a ward for young people and so on?
Yeah. Every time I've been to the hospital I've been with just old people, really old, like it's been like I've been put in an old people's home [laugh]. And it's not nice, you know. And I think there should be a ward for teenagers, not that it's, it's not meant to be a social club but you feel a bit kind of like, oh does this mean that I'm dying because I'm ill with these old people, you know. So it's like oh you know you just want to go home. You just want to get out [laugh].
Well what about the doctors and nurses? How do you relate to them or how do they relate to you?
It's alright. I mean sometimes you can get really horrible nurses and horrible doctors but sometimes you can get, you know, nice nurses and doctors.
What do you mean horrible?
Not horrible but they just don't listen to you. I think sometimes when say for example when I used to live in [city] I was really the only person with sickle cell in [city]. If there was another person they would be from overseas or something or. So I've had the doctors there since I was little but like when I moved to [city] obviously they don't know me and I think because the doctors have studied medicine they think they know more than you know. And I'm not saying I know more than a doctor but I know my body more than anybody else knows my body. So I know what medicines I, I should take or what medicines I like to take or medicines that make me feel really gross that make me throw up and what medicines don't. And sometimes they don't want to hear that. Or you know, or like when you go to, if I go to hospital by an ambulance even if I'm in a lot of pain I can say, 'I've got sickle cell you need to give me some morphine really' [laugh]. And sometimes they just don't want to hear that. They want to do all these tests on you. Then they want to get the doctor and they want to waste all this time and then they go, 'Ok you've got sickle cell you need morphine', And you're like, 'Well I told you that when I first came in'. So sometimes they don't want to hear it from you.
Children's wards feel safer and nurses are more supportive than in adult wards. His bed, in an...
Children's wards feel safer and nurses are more supportive than in adult wards. His bed, in an...
I didn't like it, it's not the same as like a children's ward. In the adult ward they out me next to just different people. There was a man he was homeless for around twelve years and he had different problems and I was next 'he was basically next to me and I didn't like that at all. And you know they didn't really care. They just they didn't really pay attention to you as much as they would to children. So I don't really like it but.
So you were sixteen years old and you ended up next to someone you didn't feel very comfortable with?
Yeah.
Yeah. I think hospitals should just put different age groups in different wards and also the serious conditions, they should put in one ward. And you know the not so serious I can't say not so serious but those who you know that just don't suffer that much I should say in another ward. But apart from that it's ' apart from the wards it's the nurses as well they don't ' they need to you know some some of them they don't really pay attention to the patients but '
No?
When I was there they didn't pay attention. But.
Can you give me an example of what happened?
Like for instance if I'm in a children's ward and you know I needed assistance, they would probably come straight way. But when I was in the adult ward, you know, you would call, you would call and they wouldn't do nothing, they wouldn't respond so that got really amazed. And you know just the fact that they put me next to a ' I know that you know everyone should share a ward and everything but this man you know, he wasn't hygienic. He wasn't you know enough ' he wasn't clean. He's been homeless for twelve years. And he'd just come into mine you know, come into my space and I just didn't like it, that's all so.
Last reviewed July 2017.
Last updated February 2012.
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