A-Z

Diabetes type 1 (young people)

Children, transition and young adult clinics

Young people talked to us about diabetic clinics and what it was they valued about their treatment. Their experiences of diabetic clinics varied because some had attended children's clinics and others had more experience of clinics for young adults. Clinics can also vary from place to place and do not necessarily all offer the same range of expertise and services. Most young people said that they highly rated clinics that helped them keep 'good control' of their diabetes and which have friendly, approachable and skilled staff.

 

Katie had an appointment with both, her paediatric and adult consultants. Both advised her about diabetes control at university and asked how ‘she’ was doing.

Katie had an appointment with both, her paediatric and adult consultants. Both advised her about diabetes control at university and asked how ‘she’ was doing.

Age at interview: 19
Sex: Female
Age at diagnosis: 14
SHOW TEXT VERSION
PRINT TRANSCRIPT
I stayed with the same hospital and so I just moved up to their adult department. The transfer was pretty good because they did my first appointments with my adult consultant and with my paediatric consultant. So they’d both meet at the same time as well as having me in the appointments to make the transfer a lot more smooth than if I was to just jump up.

What were the main issues?

They talked about the treatment that I was currently on so that the new consultant could get a picture of what I’d been using as my treatment. They also spoke about things that I did to monitor my diabetes and also sport, moving to university and next steps that I could take to make sure that I kept it in control. They talked about quite a lot of things to make sure that I’m ok not just with my diabetes but make sure that I’m ok in myself as well. And they start off the sessions like that rather than going straight into the diabetes which is good.

Ok with yourself, what do you mean?

Just in general like my life whether I’m going out, doing stuff with friends, sports that I’m playing, activities that I’m doing, things like that, whether my general health is good. So if I’ve been to my own GP what I’ve discussed with them, all things like that to make sure that everyone within my medical world is together.

Ok so that they have a full?

So they have a full picture of my medical

Ok, ok. And how do you feel about that? How?

I like that because it means that they’re actually taking an interest in my whole health rather than just my diabetes. I’d say it’s quite nice to make sure they are actually getting a full picture of my health rather than just…

Do you remember what they said specifically about you moving away from home and coming to uni and what type of support you might need or?

I don’t remember specifically. I do know that they tell me that I’ve got their numbers and if anything is wrong I can always call them and they make sure that I have regular appointments back home so that when I have got a break from university I do still have appointments to make sure that they are on top of it as well. Obviously they talk about diabetes and alcohol and the different effects of how that can change your blood sugar quite a lot which is good cos they know that university you are going to do things differently to when you are at home. They obviously talk about food because you’re cooking for yourself for the first time really and then they make sure that you’re not just going to eat trash. So it’s quite nice [ha ha].
Feelings about healthcare staff

Overall most young people said it was important that health professionals in the clinic get to know them as people. They appreciated doctors and nurses who remembered them from previous visits and who talked to them about their lives and not just their diabetes. Some said that they enjoyed being on friendly terms with staff in the clinics and that it helped them feel confident if the relationship was more than medical. Several said that they knew medical staff had to point out their problems but they also wanted them to be positive about what could be done to help.
 

He developed huge respect for his diabetes team because he was well cared for and also because...

He developed huge respect for his diabetes team because he was well cared for and also because...

Age at interview: 17
Sex: Male
Age at diagnosis: 14
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
 
 

Talks about the young adult clinic and the nurses' approach to his weight problem. He knew he...

Talks about the young adult clinic and the nurses' approach to his weight problem. He knew he...

Age at interview: 23
Sex: Male
Age at diagnosis: 7
SHOW TEXT VERSION
PRINT TRANSCRIPT
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 young people felt dissatisfied with a clinic, it was often because they had been through a bad experience with a particular member of staff who came across as bossy, critical or patronising. Many young people said they didn't like being told off for not doing enough blood glucose tests and for forgetting to record their test results. Several young people wondered if medical staff should have encouraged them to do more for themselves.
 

She attended a children's clinic until she was 16 and says that one of the nurses took too much...

She attended a children's clinic until she was 16 and says that one of the nurses took too much...

Age at interview: 17
Sex: Female
Age at diagnosis: 3
SHOW TEXT VERSION
PRINT TRANSCRIPT
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. 

Feelings about how clinics are run

Many young people talked about how their diabetes seemed harder to control when they became teenagers and for some having good access to a range of health professional including dieticians and psychologists was important. (See also 'What happens at the diabetes clinic' and 'What makes a good consultation with the care team?'.)

 

She compares the treatment she received at a children's clinic with that of the adolescent clinic...

Text only
Read below

She compares the treatment she received at a children's clinic with that of the adolescent clinic...

Age at interview: 20
Sex: Female
Age at diagnosis: 3
HIDE TEXT
PRINT TRANSCRIPT
Tell me about diabetes care when you were young, when you were little?

I don't really remember, remember but I know I changed, I moved hospitals. I was in one hospital and it was and I think I was around twelve or something and my mother was very upset with the care there. There was no help from any other people. It was just there was one doctor. We went there. He was like, how is your blood sugars and I'd show him. This, that and that was it. You go home, see you in three months. There was no diet, you know, dietary people. There was no psychology. There was no nurses there that you can call anytime and speak to. The nurse I have now. I'd call her anytime. I e-mail her and there's. It is more close. You know they're more like family you can speak to them whenever and ask questions and they're more, much more helpful.

This was your first hospital was a non-university hospital?

Yes. Yeah.

Now in the hospital, you have been at the present hospital since the age of twelve?

I think around, maybe a bit later, thirteen or something but yeah. 

So you are attending a young people's clinic since the age of thirteen?

Yeah

What about the communication with your doctor?

It's very good.

Yeah?

[mm huh]

In which ways?

My, I don't really communicate with him I more communicate with the nurses. So he's. He's a very doctor and you know I come there for appointments to see him but if like I'm at home or when I was away in the States or something I would always e-mail my nurse about, you know, what can I do and, you know, things like that. And she was always, you know, always replied and always, you know. She was always there so that was really nice.

What was their attitude when you were not controlling [laugh] your diabetes that well? When you were not doing your blood sugars tests?

I think once I moved to the Adolescent Unit I think that's when I started to, you know. It was uphill from then. You know, it started from one blood test a week to two blood tests a week, you know. We started from that so I think from, when I moved to the Adolescent Unit it was like a whole team. They were like, you know, you are here now and you have to get here so we're going to help you. You know. So it was always uphill from there.

Ok so you had this support?

Yeah. From what I remember, from what I think is in the other hospital there was no, you know, there was, they weren't trying to make me do more. They weren't trying to, you know, give me any responsibility, you know. In, in the hospital I am now they said listen it's your life. You have to take care of yourself. You have to, you know, you have to be in charge of what you have and take care of it. So that's what I am doing.

Young people said that ideally medical staff should have an understanding of what it felt like to be a teenager and how this affected how they felt about having diabetes. Some people were on a treatment regime where they had to wait for staff to change things for them, and they felt that staff should check-up on them afterwards and see how they were coping. Many said they wanted to be able to contact someone from the clinic after hours and appreciated nurses who responded to emails and text messages.
 

She went to an adult diabetes clinic which was wrong for her but says the teenage clinic has been...

She went to an adult diabetes clinic which was wrong for her but says the teenage clinic has been...

Age at interview: 17
Sex: Female
Age at diagnosis: 3
SHOW TEXT VERSION
PRINT TRANSCRIPT
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
 

Feels she needed more supervision from her clinic when she became a teenager and her life changed...

Feels she needed more supervision from her clinic when she became a teenager and her life changed...

Age at interview: 27
Sex: Female
Age at diagnosis: 7
SHOW TEXT VERSION
PRINT TRANSCRIPT
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?

Children's clinics

Many young people who were attending children's clinics said they were happy with their care. They liked the informality and friendliness of the staff, and didn't want members of their diabetes team to change. Several young people said they didn't feel ready to leave the children's clinic.

 

She isn't ready to leave the children's clinic yet because it suits her life at the moment and...

She isn't ready to leave the children's clinic yet because it suits her life at the moment and...

Age at interview: 17
Sex: Female
Age at diagnosis: 12
SHOW TEXT VERSION
PRINT TRANSCRIPT
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
Moving from the children's to the young adults' clinic

Young people said that the main difference they noticed when they moved from the children's to the young adults' clinic was how doctors and nurses made more of talking directly to them rather than to their parents. The transition from one to the other meant taking more responsibility for their own care at a pace that suited them which was much appreciated by many young people.

 

Finds that the young adult clinic is encouraging her to take more responsibility and that she's...

Finds that the young adult clinic is encouraging her to take more responsibility and that she's...

Age at interview: 16
Sex: Female
Age at diagnosis: 7
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
 

They like the young adult clinic because they get individual consultations and the clinic seems...

They like the young adult clinic because they get individual consultations and the clinic seems...

Age at interview: 18
Sex: Male
Age at diagnosis: 9
SHOW TEXT VERSION
PRINT TRANSCRIPT
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
 

Though she was worried about leaving her original clinic, she was reassured by her new consultant...

Though she was worried about leaving her original clinic, she was reassured by her new consultant...

Age at interview: 20
Sex: Female
Age at diagnosis: 2
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.

 

Lewis and his parents explain how the adolescent clinic is preparing him for when he is older and start attending consultation on his own.

Lewis and his parents explain how the adolescent clinic is preparing him for when he is older and start attending consultation on his own.

Age at interview: 12
Sex: Male
Age at diagnosis: 4
SHOW TEXT VERSION
PRINT TRANSCRIPT
Mother: They do everything so. He goes, he’s in the adolescent. They split it up to paediatrics and adolescent. So he is in the adolescent clinic. And so they try and encourage for say Lewis to go in by himself with the consultant first and then as he gets older that will, that time alone will become more and more. We go in as well but we give him the opportunity first.

Lewis: What they do as well is they also give me the opportunity to tell many things that I wouldn’t like to tell you and they tell you so I won’t have to say it face to face.

Mother: Exactly yeah you’ve got to get used to going to these yeah

Father: Helps prepare doesn’t it as well for that eventual period of time where mum and dad won’t be coming at all and, you know That day will come so obviously they spend a good few years at the clinic he goes preparing children and young people for that event. Which I think is good because I mean there’s a lot of clinics around the country where you’ll be seeing your regular team one visit then that’s it. It’s almost over and you’re off into the scary world of adult clinics.

Yeah.

Father: I think it’s a fantastic idea to make transitional arrangements.

And do you feel that they are interested in you not just in your diabetes and how you are managing.

Lewis: Yeah they are, they sort of bond with you a bit at the sort of like have a joke around and get to know you a bit before they start talking about diabetes and even when they do talk about diabetes they actually listen to you. They don’t go with what their opinions are they listen to you and go, “What’s been happening?” So that they can’t just judge off the graphs. They see what you are feeling as well which your opinion would help which I think is a good thing.
Many young people said that they valued making decisions about their own treatment in the young adult clinics because they wanted to have more responsibility and control of their diabetes. For some young people, the transition to a new clinic was not easy and they took time to adjust and develop a good relationship with medical staff. Levels of care satisfaction with the adult services varied, and while some felt that little had changed, others talked of having the number of hospital appointments reduced or experiencing more cancellations of appointments.
 

He's recently moved to an adult diabetic clinic & feels they don't know him, don't take an...

He's recently moved to an adult diabetic clinic & feels they don't know him, don't take an...

Age at interview: 19
Sex: Male
Age at diagnosis: 13
SHOW TEXT VERSION
PRINT TRANSCRIPT
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. 

 

Explains how it took a while for him to feel comfortable in the young adult clinic. At first he...

Explains how it took a while for him to feel comfortable in the young adult clinic. At first he...

Age at interview: 20
Sex: Male
Age at diagnosis: 10
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.

But for some young people like Sophie, seeing a different consultant in the same adult clinic turned out to be an informative and more positive experience. 

Getting treatment from the GP

One young man said he had not attended a clinic for three years and that he gets his insulin and everything else he needs from his GP because it suits him better. He used to go to a hospital nearby but after it closed he was transferred to another hospital far from his home.

Last reviewed December 2017.

Last updated December 2017.

donate
Previous Page
Next Page