Presumably when you were first diagnosed you went to a children’s clinic.

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.

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.

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

The hospital that I go to now, and the adult based clinic is in my opinion far better than the children’s services. When you are at the children’s you know, you haven’t got any control, because your parents are there and obviously that is not your fault you are just not old enough, but you have to be – any decisions often get taken out of your hands. But now I am in full control, you know and it is totally up to me. But I like the adult base it is more informal and you can talk better to the doctor. The clinic where I go to isn’t busy as such. So you know you feel more relaxed whereas at the children’s, I mean, you can turn up, you now – at 10 oclock in the morning and you won’t leave until 3 oclock in the afternoon and it is absolutely packed and when you go in to see the doctor you will have that many people in there, you think, I will be sitting here. You will have your parents there and you could have about five doctors there and it looks quite scary from that respect. So nowadays, at the adult based centres I can’t really fault the service I get now. And if I have got any problems I can just phone them up and I can go you know the next day even, you know, so I can’t fault that in any respect. What I would fault now is in the adult based clinics there is only doctors. I see nurses but there is no physio or occupational therapy whereas you get all that at the children’s hospital and like the surgery you get a wide range, but I suppose as an adult you are supposed to take more of a control of your illness, so you don’t need that as much, but I think I would like, because I am only young still you know. The fact that when I go to the hospital I don’t see that many people my age at the hospital when I go now, you know, obviously I am only 23, I wouldn’t mind meeting people that are more my age but when I go, I am not being rude here, but there are a lot of people that are older and so their experiences of the same illness as me, arthritis, they haven’t got a clue. So I would like to see, you know, more more people my age in the clinics. I mean I don’t hardly know anybody with arthritis that is now an older person in their sixties, seventies.

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.

Yeah I was really happy and really settled at my paediatric centre. I know, I knew all the staff there. I got on really well with my consultant and my physio and I felt. I just felt like really happy there and when we started talking about moving and I was like, ‘Oh do I have to go? Do I have to go?’ And they were like, ‘Well yes, you are an adult now. And it was a gradual process. Like we talked about it with my CF consultant at my paediatric centre and then we had a, we actually had a visit by two of the CF nurses from the adult centre. They came to see me at my hospital in one of my clinics. And then they actually came to visit me at my home as well and showed me some pictures of the hospital and told me what the set up was there. Like what the appointments are, the different medical staff that work there, what was likely to happen. And then I had my first appointment in the September just before I, just before I started at university.

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.

When you go to the doctor, the hospital, which, what tests do you need done?

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

What do you think it needs to be improved?

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.

I just don’t think hospitals are very nice places, not when you’re growing up and then you get put on a ward with really old people that seem to be dying. I’ve been on a ward where someone has died before. It’s just not a nice environment to be in. So I prefer being at home.

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.

How was that?

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.