Diabetes type 1 (young people)

They are so helpful. I tell you. If I didn't have them I don't think that I'd be alive today to be quite honest with you I think that I would have been. Because it's like they, they tell me something but they don't just tell me something as if to stand over you. You've got to do this. You've got to do that. They stand and they tell me that [name] if you don't do this, this is going to happen. You need to start doing it. It is for your own health and they befriend you, so to speak. They want to be your friend. The want to make sure you're alright and they, they help a hell of a lot. They tell me everything that I need to know.

So you have responded to that?

I have a lot of respect for them yeah.

When you go to the clinic you go on your own or you go with one of your parents or?

I used to go with my mum and dad before I turned 16. I used to go with either my mum or my dad. Now I'm more confident about it. I'll go on my own and they'll tell me stuff that I need to know and stuff that I need for myself. I mean before I wanted my mum there because she likes to remind me a lot [laugh] and stuff. But now I feel confident enough to go on my own.

When I first became a diabetic I was going to this place and they, they were helping me and that but now I've started college I can only go. I've only got the option of going two days a week. And the diabetic people will only go to certain places at certain times and certain days. So I've had to go over to [hospital name] now which is where I met you.

And you go there every three months?

About every three months yeah.

And the relationship with the nurses there and the doctor is? How do you find that?

Well I've only just started there. I've only had one appointment with there at, there at the moment. But when I was going to my other one I had a great relationship with them actually. They, they seemed to remember me. I remembered them. And, and it didn't, it didn't so much feel like they were an authority figure, figure. Do you know what I mean like when you're in school you've got all those authority figures standing over you having a moan and stuff like that. They felt like they were my friends, they like they knew me like I knew them. We had a discussion about their kids. One of them was pregnant and I had a discussion with her about her baby and stuff.

They're very open people. They like to have a chat and to tell you what their life's like and for you to tell you, them what your life's like. I mean they knew most of my girlfriends because I'd had, I talked to them about her. And I respected them and they, I think, respected me and we were all friends. It just felt as if it was a friendly environment.
 

As, as far as care goes, I mean, the clinic, the, the child clinic when I first started and the, and the diabetic nurses I think, [name], they were really nice. The children's clinic was cool. Apart from one nurse who couldn't, like, try taking a blood test from me couldn't do it and she attempted, like, eight times. You know, it was just like she was new so in the end, I didn't like her after that. She's left now, but generally speaking the child clinic was really good, like they were really nice. They're down at [hospital] And now I go to the one, the adult one. They're alright, I mean I'm not going to say anything too bad about them, but when I, when I had the fit in the summer I went to see a lady in [city] and she was much better, if I'm honest, than the ones in [hospital].

In which way?

Well, she just seemed, she had like ideas. I mean, she got me on the Metformin tablets because I was fat and to help me lose some weight. And then she seemed more, kind of, she knew what she was talking about more than, okay, well, I get the impression at [hospital] they don't really care, to be honest with you. They can, the guy I usually see, I don't know, I just get the impression - he told me when I had the fit in the summer you, you can't wake up from a fit and that's it, you die unless someone finds you, sort of thing, and you don't, you know what I mean, wake up afterwards because whatever it is affects your liver or something, makes, makes you send sugar. So, I don't know, really, I don't know, but there again it's close and I haven't got a car at the moment, so, it's, you know.

Honestly, I get the impression, I don't know, I, they just kind of see me, yeah, yeah, blah-de-blah, and then you go, to be honest. I don't feel I get any positive help. Like this lady, I mean, they could've offered me the pills at [hospital] if they, if they wanted to, I mean, just like what you said about the fit and it was wrong, I mean, that's the impression I got, it may be it's, I don't know, but compared to the two, this lady in London seemed much better. But, it's just too far to go, I don't want to go to London every time I want to go to the clinic, so'

Much better in terms of the information she gave you?

She seemed more knowledgeable, yeah, about the information, the pills that she offered me. She just seemed, she had, like, she seemed to have answers for the sort of problems I had instead of just not. I mean, I've been going to [hospital] for ages and no one ever mentioned those pills to me, and they could have done, you know.

No. Yes, they knew I was fat, but they, but they didn't tell me, like they didn't say, 'You've put a bit of weight on,' they never, they didn't mentioned it before. You know, I don't think they mentioned it at all. But she turned round to me in London and said, 'You're overweight, you're fat, you're clinically obese, 28 per cent, 38, 28 per cent body fat and you need to lose it.' So she put me on this diet and give me the pills. Whereas [hospital] didn't do anything. They didn't say, 'You've put a bit of weight on and you need to lose it.'

Okay. 

But they don't give you, didn't give you any [sniff] positive - you know, what I mean, ways to sort it out they just kind of tell you bugger off you're fat. That's the impression I got but obviously they don't say it like that but, you know, it's just kind of like - sort of, I just can't, I don't really like going to them, I go because I have to otherwise I get hassled, so I go, and then that's it really. 

I think, generally speaking, I think it's good t

When you were in the children's clinic was something different?

Yeah, they were different - they were more pushy, because I had a nurse that forced the injection in my leg when I didn't really want it in my leg. He made me hold his hand and he pushed it in my leg and he sort of - it sort of weren't the right, the right way to go about it. I think that knocked me a bit as well. They were a good team, but used different tactics to the adult clinic, which I'm pleased I am with them now. So they weren't really that supportive in that way, so they just thought I was a baby still, relying on my parents to do it for me, but they didn't realise I had an actual block, a fear which the counsellor helped me, help me unlocked really.

Can you describe to me again what happened with this nurse?

Yeah, there was a nurse I had since I've been diagnosed really and he always used to - like my mum used to ask him to come round sometimes at home, because I did need the help but it just - it weren't round at the time, so he'd come round and my parents were there, and I sort of had the injection in my leg, and he sort of like, pushed his hand and pushed it in my leg, with me holding it when I didn't really always feel comfortable. But he just thought that was the only way and he was sort of more, not as easy to help me do it as - same as like when I went back there they used to laugh and make jokes, 'Oh, your parents will be doing it till you're married'. It weren't really stuff you wanted to hear. Like, I could have easily I got easily despondent, to be quite honest. They thought - they didn't realise what they were doing really.

So it hurt?

Yeah, because deep down I always wanted to do it but it was just the help that I needed to help me do it but they weren't really helping whatsoever, so I'm really glad where I'm today, like the adult clinic, they turned it around really.

So, how old were you when you went there?

Sixteen, the adult clinic, so from when I was diagnosed till when I was sixteen I was with the children's unit. They were good like for my whole diabetes because my blood tests have always been good. They were good at advising me and stuff like that, but when it got down to the injections I wouldn't really say they were all that good. They just made it uneasy. 
 

Well we lived in [city] when I was diagnosed so I was in the children's department at [city] and then we moved over here and we decided that I was missing too much school to go, through going over to [city] so I moved to [city] Well I was under the [city] branch. Went to [city] for a little bit and then they said, oh there's a clinic at [city] you can go to. They moved me up into the adult clinic which I didn't like at all. So they moved me back down into the children's clinic. And it was decided before I went to university, because I'm going [name] University is where I'm going. And I thought [city] it's in between home and where I'll be at uni. I know what it is like. They've got a brand new diabetes care centre there and they've got a specific teenage section, teenage clinic which is fantastic because they understand teenage lives, all the hormones, all the changes and how to deal with you which is brilliant. It's a lot better and I feel at lot comfier there because I just felt I was too old to be in a children's one, too young to be in an adult's one. So this is a really, really good balance and it really is perfect for what I need and the doctors know how to treat me. So it, I'm, I like it there. I really do and the care team is fantastic. And all the facilities and all, just the diabetic clinic at [city] Hospital is amazing. It's lovely.

Why do you like this new diabetes care team so much. You say they are fantastic in which way?

It's the understanding that they have of my lifestyle. They know that as a teenager I'm going to be going out to the pub. I'm going to be drinking alcohol. I'm going to be staying up all night. I'm going to be doing, they know me that I do lots of sport. They know that my hormones are going wild at the age I am and they know, they just understand it a lot better. They don't. If you go in and say, oh. If you went in with a hangover they wouldn't look down on you. As if you went into the child's clinic obviously you'd be completely out of place but if you went into the adult's clinic I found that the adult doctor that I saw when I was at [city] he was very. Again you will do this, you shouldn't be doing this, you'll do as I say whether you like it or not. Well just, the teenage care team it, it is. They just understand teenagers. They make you feel comfortable. They cater for your needs to make it as easy as possible because they know that you want to get on with your life and they know that. 

The adult care team was the one that was the least understanding. They didn't want to understand what. Well that's the impression I got that they didn't want to understand what I was doing. I think they were used to adults that had the time to sort of make sure they did everything right as in prepare their lunch and prepare their evening meal. As I'm always on the go it's. I make sure I eat properly definitely and my mum always prepares fantastic well-balanced evening meals but on my lunchtime it's a case of well it's either a sandwich or a jacket potato or whatever I fancy. And they were like, no you should make and you should know exactly what you're eating. And you should make time. You should make, you should fit yourself around your diabetes was the impression that I got. I wasn't, I do not live by that rule. It fits around me all the time. I do what I want to do and it does what I'm doing. So [laugh] I make sure it's, I'm controlling it. It doesn't have a choice. It does as I say.

Yeah I mean the child care team, you can tell the definite difference. They're mildly in with your HbA1C when say you're a child it can go a little bit higher because they know that it's difficult but also you get, in the child clinic, when they find it a bit more difficult to sort of compensate for the hormones and ever

When I was moved on to a more flexible regime, I was on, previously I'd been on two injections of long-term and short-term acting insulin mixed together, the Mixtard. Which, you did your injection, it lasted over so long. But obviously when your sugars dropped at, at different times of the day, when your hormones were what they were, that's when you had to eat and that's why you had to have, you know, set meals. But the insulin regime I went on was, it was ActRapid, which was a short-term insulin. I was also on a long-term background insulin, which I can't remember the name of, because I got terrible memory. 

But basically it was a background insulin which stayed in the body throughout the day. And then when you wanted to eat something you did a booster injection. So you did a fast-acting injection before you ate, to allow you to eat. And that's why you could more or less eat when you wanted. Because you just had the background insulin, you had insulin on board all the time, which kept your sugars level. And then when you wanted to eat you just boost your su-, you inject the insulin into you to lower your sugar levels so that you could eat. So you could eat when you were hungry basically, and eat as little or as much as you wanted within certain, you had to be very well controlled to be able to do that. And so obviously had to be very well controlled in the first place to be able to that and know what you were doing with your insulin. Which I was, because I'd been very well controlled all my life. 

So that, that was more or less it. And obviously when, when I started to have my eating disorder I was missing injections. Like I'd miss my breakfast. So I wouldn't do my breakfast ActRapid. But my sugar was still all right because I had the background insulin. Or I'd miss my lunch. And my sugars would still be all right because I had the background insulin. If I wanted to eat a lot more, I'd just inject a lot more ActRapid for the carbohydrate. And that's how it worked. And I guess because I was on such a strict regime before, there was no question, I just did it. Whereas with this, it just gave me a, it just gave me a lic-, a, you know, a licence of freedom that I'd never had before. Which I started to abuse. Because I'd never had it before it was like a whole new experience. And it's letting, it's like letting a child loose in a sweet shop, you know. It's like all these new wonderful ways that I could experience. And I could eat late and I could go out for meals and not worry. And it was just fantastic. So obviously I ended up abusing it, you know.

How old were you?

I was 14 when I was put on that new regime.

With hindsight, what would you have needed? What do you think they should have given you? More information?

With hindsight, I should have had a lot more information about the insulin. I should have had a lot, I should have had a lot more of a watch on me. Because in actual fact I was good, and I did, when it came to my diabetes appointments or diabetes check-ups I was, I was always very good. And they should have really monitored me a lot more closely, and asked me how I was getting on with it, and maybe talked about certain situations that I might be in as a teenager. Because being a teenager is just, it's like, it's a, a whole alien concept. It's like a whole different life that you need to learn about. And there's nothing in the middle. There's, it's kind of, there's a lot of things there for adults and whatever and you get spoken to like an adult and things and you get spoken when you are a child and told what to do but' 

You were talking about teenagers?
 

Yeah, they're - my diabetes team is generally very good. They've got - they have a dietician there, and specialists in diabetes, and there's a nurse that does all the HbA1Cs and weighing, and she keeps that all up to date, and they do inform you if you ask anything, then they'll like 'what's my weight today' and they will show you little charts and stuff. I'm still at the paediatric one, so, the children's one, because I just feel more comfortable there. I will have to move to an adult one, but not until I want to.

You don't want to go yet?

No. [laughs] Because I'm quite comfortable there, because I know the people, but when I go away next year I probably will have to move, because I'll be in, I won't be in [city] anymore. Yeah, they're quite friendly. A lot of the time, if I don't understand anything, they'll actually get down and draw photos, draw photos - draw pictures - and graphs, and they explain it very well. And if you want anything, they'll try and help for you, and try and get it. Blood tests and stuff, they just have them lying around, so yeah. Their information is very useful, because you get a more general overview of what's happening with everyone and if something's not going well for you they can suggest, like a parallel case, like this girl the other day - she also had this, she was also going low at this time. She did this and I wonder if it'll work for you. So they can apply their knowledge and experience. It's just sort of, I don't know, I suppose it's like getting tips as you go along. Because obviously you learn a lot yourself, and you know everyone's different, and you go there and you get, like, a new sort of way of dealing with different things. And the dietician does help too, although I don't see her as frequently. She was the one who mentioned the counting carbohydrate scheme, and it's just tied in really well.

Yeah, easy language would be good [laughs]. Most - because my clinic's very good, and they do use it, I suppose, my clinic's never patronised me, but if they did I think I'd hate it'

I can't really say much about it, because I've got such a good team.

You have been with them for five years. So when you go to university you will need to go to another?

Yeah, maybe, depends on how far I go. I went to the adult one once and it felt really detached, like - well obviously they didn't know me, but I don't know, I'm not sure if there's a lack of [pause] expertise?

What do you mean detached? Impersonal?

Yeah, they were impersonal. They sort of had a process, it felt like. You do this, this and this when we see you. It wasn't about - because I've just talked to my clinic people it wasn't about just sitting in there and talking away, because that something they want you to do and when you talk away that's when you usually find, oh you're doing this' yeah they had processes like we're going to do this now, we'll talk about breakfast here, breakfast here, and feel if you've got any lumps and bumps' I just didn't like it much.

So you found the consultation more prescriptive?

Yeah, it was very structured. At the paediatrics one they do have structures, I suppose they used to dealing with little children where you have to make it fun, but they, it wasn't so rigid. You can like you can talk about something totally obscure, that's slightly applicable, whereas I felt that I had to talk about, well I do this in the morning, I eat this then, when I was at the adult one, whereas I can relate yeah I went to town, a and were you walking around the town eatin

What is different again with this clinic compared to the Children's Clinic?

I think they try and talk to you a lot more, and get you to take control of the diabetes more than your parents. And they said, they actually said it that, they want to sort of make sure that you're in control of your life more than your parents of been in control, and so you're more responsible as well.

How does it make, made you feel when they told you that?

Text inserted by respondent' 'Good because my parents would have to listen to doctors; they didn't seem to believe me when I said I could take care of myself.'

And for how long have you been in this clinic?

At sort of I've only had about two or three appointments there.

So and the appointments are every six months?

Three months for me.

I think it's okay, because they know who I am and, pretty much everyone on the team would know who you are though, because they read the notes and I think they have discussions between themselves. But I usually see like the nurse and the dietician, then sometimes the doctor.

So you don't have to introduce yourself to a new face every time then?

No.

What would you improve regarding the consultation?

I think it's okay the way it is, the way things are running, 'cause they try and get you more than, more involved than your parents, I think that's a good thing, 'cause they talk to you more or less like you're an adult yourself, and I think, yeah you do get to be more in control of your diabetes.

I think the biggest thing was how they talked more to me than to my mum, but apart from that no, like level of treatment and how they look after you is pretty much the same.

Are you able to contact your diabetes care team for advice in person or by phone?

I don't usually feel the need to do that, usually it'll be my mum to ring up 'cause I'm at school, so during the day my mum will call. But I think you can reach them after office hours as well, or leave a message and they'll get back to you, but my mum has all the numbers of everyone that she needs.

Interviewee 1' The diabetic nurses and specialists at the hospital. They've been very helpful and they gave us all this information that we have now. We've recently moved to the adult clinic and that's about 10 times better than the children's ward that we were at.

Interviewee 2' Yeah, it's much faster. Definitely. And they understand that, you know, going off to university and, there's no screaming kids, it's much better. 

Interviewee 1' Definitely. 

Interviewee 2' A much nicer building. And they understand, you know, we're going off to university, so we might have to may, probably not being able to meet some appointment dates, that kind of thing. We will be given priority when we come back. If someone's been booked in but that's the only date that we can make it they'll be moved so we can, so we can make it.

So you're not going to change'?

Interviewee 2' Clinics, no.

Interviewee 1' No.

Interviewee 2' No we might have to, when we go to university'

Interviewee 1' General practitioners' clinic '

Interviewee 2' Yeah but when we go to university we might have to meet some GPs there. Temporarily.

Hmm.

Interviewee 2' But when we come back, that will be our main clinic.

Interviewee 1' Yeah, and just check up with the GPs in whichever university we're going to, just once a month or once every two months, just to check we're still OK, but when we come back here then we'll still be going to the adult clinic that we do now.

Interviewee 2' Oh right in the paediatric clinic it was a lot more they tell you'

Interviewee 1' This is how it's going to be.

Interviewee 2' What you're going to do.

Interviewee 1' Or your parents would go in with you and they'd talk to your parents and you'd just sit there and go, 'Yeah'. But in the adult clinic you'

Interviewee 2' You go in one at a time. It's, I go in, [my brother] goes in. You're not in with each other. And then you discuss it with the doctors or the nurses and they say, 'What do you think about this?' It's much, much better.

Interviewee 1' You've got a lot more'

Interviewee 2' Interaction.

Interviewee 1' Yeah, they're always, they were always there when we were in the paediatric clinic. 

Interviewee 2' Hmm

And you were seen, both of you together?

Interviewee 1 & Interviewee 2' Yeah.

Int

How does it feel sort of to change from one clinic to another? What have you noticed that is different?

I was really worried about it at first because I was so used to my consultant at home and my diabetes nurse at home and like the way they did things. And I was kind of worried coming here that I wouldn't get on with the people, that it would be completely different and that they wouldn't kind of understand me and like how my diabetes works. But, yes, I mean I've only been to the diabetes clinic here twice, and both times it's been a positive experience. And...

Positive, what do you mean by positive?

I got on well with the consultant and felt that they listened to me and understood what I was saying. And like I also noticed kind of the difference between like being in the children's clinic and being in the young adults' clinic. Because even though my consultant at home didn't like treat me like a child, obviously he was more used to dealing with young children. So that obviously had an input on how like he treated me. Whereas here they're used to treating young adults. At first I, like the first appointment I found that really strange, because it was like left kind of like more up to me and I had more kind of say. And the consultant didn't kind of sit there and tell me like what I should be doing. He kind of asked me what I felt I should be doing and how things were going and'

Was it a bit frightening to start with or not?

Yes, it was. I mean I was also like quite scared about it because of what was going on with my eating disorder and my diabetes being totally out of control. And I was really worried that like they were going to just be really mad at me. And I don't know really what I was worried about other than, yes.

What was their attitude towards you?

Well, they already knew, because it had been my psychiatrist that had like organised for me to transfer to the diabetes clinic up here. So, yes, the consultant knew what was going on and he knew that I was in a bad place. And so that really helped because I felt that I didn't have to explain everything from the beginning. And like as I spoke to him it was clear that he'd obviously like taken the time to really read my notes and to talk to the other people involved in my care.

So that was nice?

Yes.

You found that quite reassuring?

Yes.
 

Have you moved hospitals recently or just before the pump was suggested to you?

I had a contact with a different nurse with the pump but I've also recently moved to the adult diabetic clinic from the children's diabetic clinic. And I've had two appointments with that clinic at a different hospital. And I've found so far that the sort of experience of that is nowhere near as helpful as it was at the children's clinic.

In which terms can you elaborate more?

I mean I got on well with my previous consultant and I just found that the doctor that I had with the adult clinic first of all I didn't see him for anywhere near as long as I would have been able to speak to my previous consultant. You, you'd go into the room and there'd be somebody else there that would take all your details and have a quick talk to you. Then it seemed like doctor would just pop in for a few minutes and you get five minutes or so and then he'd be off. And I didn't, haven't found it anywhere near as useful as with the previous consultant. And obviously what I really like about the time with him is that he pushed for the insulin pump before I actually moved to the adult clinic. So I was very grateful that he that he got all that sorted out because it wasn't as simple as just, if you wanted an insulin pump you could have one. I'd known that I'd been interested in the insulin pump for maybe a year or so beforehand. 

So with your previous consultant there was more time for consultation?

Yeah.

And he already knew you for several years?

Yeah.

So now one of the problems with the new team that you are being looked after is that there is a lack of time for consultation?

Yeah.

Or very little time?

Yeah.

Can you explain more in terms of sort of if there are differences between the children's clinic and the young adult, and the adult clinic in terms of communication?

There's no big difference in terms of just communicating with the doctor. I can still talk to him the same kind of way I talked to my previous consultant. But it just doesn't. I mean it almost just doesn't feel as friendly. And it's just, he's, he would kind of prompt me, the previous consultant but the new guy didn't seem to be as forthcoming with'

He doesn't ask questions?

Yeah that's kind of the way it, yeah.

So basically it is how have you been or things like that?

Yeah, yeah it would be sort of something basic like that but not as in depth. And it get, it comes down to time I think, he, not to really get talking about it. Also I would be able to communicate with my children's diabetes team. I had a, you know, a mobile telephone number for them which I could call at any time even over the weekends I could get through to one of them as one of them would have it. But I've got nothing like that with the new adult clinic. The only time I've got contact is when I go in for the six-monthly appointments. 

And the adults clinic is not a young adults clinic. It's an adults clinic?

Yes. It's an adults clinic, yeah. 
 

What was different in terms of sort of from the children's to the transition?

It's a lot quicker at the, [laugh] the young adults. I'm there for less than an hour whereas at the, at the children's I could have been there for a couple of hours because it's a lot busier. I don't know I mean [interrupt] initially I really did not get on with the doctor at the young adults. I mean I, we really did not get on at all. And that's because initially I felt that I was treated more as an adult at the children's clinic than I was at the young adults. I found, I thought you know his approach to me was quite condescending actually if I'm truthful. But we seem to be ok now as soon as we passed that. And I guess maybe that was just to do with settling in or it was different but you know it's fine.

No I don't think so. Obviously they, they will, will now talk about alcohol and things like that which they wouldn't talk to children about. But you know I think that's probably the only, the only thing.

And ok so that is the main difference that you find?

[mmm] And also you have a blood test every time you go to the young adult's whereas at the children's one you only had it once a year [laugh].

You said something during the course of the interview about that you felt that the children's team treated you more like a young adult than initially when you went to the young people's clinic, in which way was that?

Just because I suppose once you get to the young adults clinic that's when they speak more obviously about alcohol and I was at university then so. And I didn't like how things were, how things were put to me because I knew what the risks. I know, you know, lots, risks of alcohol. You know I think most people my age do. And I just think the way, the manner in which it was said was (a) condescending because I knew some of it anyway. And also I suppose maybe they might look at it on the fact that the doctor might have looked on it and, that I'd revert, I might have reverted more back to a child because at university people, people might see sort of the things that students do as being, you know it may be a step back to how they were, you know, a few years before so. Maybe that's why they did it but I think it's just important to you know, to treat people with respect and you know give them the information they need but don't say it in a manner that you know comes across as aggressive or, you know, or very negative.