Interview 07

Age at interview: 20

Age at diagnosis: 11

Brief Outline:

Diagnosed age eleven and put on two insulin injections a day of Mixtard 30. Now she is on one injection of Lantus in the evening and three injections of Humalog with each meal. She took part in the Insight programme which provides training on adjusting insulin dosages for healthy eating. She recommends such training sessions to everyone.

Background:

Full-time student; in a long-term relationship, until recently living in student accommodation but is moving back with her parents and will commute to university.

She feels there's enough general information available, for instance about alcohol, and wants more specific advice for her own needs.

I don't know really that there's any information that I ever thought 'Oh I wish someone had told me that' because I think I was kind of aware of you know most things I suppose that teenagers would come across like you know. But actually one thing would be no one ever tells you is how like drugs and stuff would affect your diabetes. And like you know a lot of young people try things like cannabis or whatever and they never sort of' they never tell you what effect that might have. There's all this talk about alcohol but then you know' I think that you know cannabis is quite common amongst sort of sixteen, seventeen year olds, that kind of thing and no one ever sort of thinks to bring that up. And obviously you're not going to go and ask someone are you [laughs].

So but I never really sort of thought, 'Oh I wish someone had told me' but maybe some people might, maybe you know they have a concern about that. And then there's no point pretending that people don't you know do things like that so it would be better if perhaps you know people were may be told about it or whatever. But I never, there was never really anything that I sort of thought oh well someone should have told me this or someone should have told me that or anything I suppose. Just generally a bit more I don't know a bit, I suppose a bit more in the clinics that people actually kind of take a bit more time to actually work out. But I don't think that's specific to teenagers anyway just working out actually what your situation is and what your diabetes is doing rather than drawing assumptions from kind of you know the kind of general or average situation I suppose. But I don't think that's specific to teenagers, I think that's just the way it is with the clinics, because you know it's a short time every now and then and it's not enough to really go in-depth into a specific person's diabetes.
 

She was seven when diagnosed and started to inject herself.

Do you remember much about it?

I don't know, I can't remember how I felt about it really, I don't think I was sort of distraught or anything, I wasn't you know after the initial shock I just kind of got on with it and they sort of, I went there and they, they sort of told me about it and they, I wasn't on a drip or anything like that because I think some people have to be on a drip and stuff but I think they caught it early enough that they just sort of started giving me insulin and sort of, and I was injecting myself straight away. They made me inject it into an orange first and stuff but then they, I did it myself straight away. I think I preferred to do it myself than to have someone else doing it because I like to be the one sort of in control of it sort of thing, I didn't like to have someone else doing it. It's one thing if you're putting a needle in yourself but I don't like it when other people are doing it [laughs]. But they made, they made my mum do it because, in case you know I was ill or for some reason I couldn't inject myself and I wasn't very happy about that and nor was she [laughs]. But they said it had to be done just in case you know there was ever a time when I couldn't do it myself. But I did it for myself straight away and I've always done it myself really.

Okay and so you had no problem with injections and needles or?

Not really because they, well I think, I don't think, I think I was quite pleased by how small they were [laughs] because they're, you know they're quite sort of fine and small and it wasn't, it didn't really, the first time I did it I remember I was shocked because it didn't hurt at all. I think I was quite lucky because sometimes it hurts a bit and other times it doesn't hurt but that first time it didn't hurt at all so I think you know because that first time it didn't really hurt it kind of, I sort of thought oh that can't be that bad. So, so no it was, it was alright. And my, the kind of you know, I don't know it was generally okay really.

Until recently she was seeing different doctors every time she went to the diabetic clinic and she does not know who her nurse is.

So you used to know in the transition clinic or in this clinic?

I think probably it would be in the paediatric or transition one I think, so I don't know, may be they don't do nurses in the [laughs] in this clinic. I used to see, when I was first diagnosed I always used to see the same nurse and the same doctor so obviously yeah he knew you know more about me and about my diabetes and what was going right and what was going wrong and that kind of thing. And I knew who they were and I knew I could phone the nurse if I had a problem or whatever or my mum could because I was younger then you know that sort of thing. Whereas now I think the last two times I've seen the same doctor but there was a period where, I don't know if it's because I was going from clinic to clinic but I didn't see the same doctor for you know ages so you know you kind of, you tell one person one, you see one doctor once and then the next time you go it's a completely different doctor and they know you know even less than the other one did about you [laughs]. So it's just a bit silly because you know you might as well have stayed at home really because you knew better what to do than some complete stranger to you, even if they've got the medical knowledge they don't, they can't really apply that medical knowledge if they don't know your situation sort of thing. So, so yeah I think, but now I've seen the same once twice, the past two times so it's a bit better because at least you feel that you know you're seeing the same person and obviously they don't know you very well but at least they, you've seen them before and kind of talked to them before so you feel like you've got a bit more of a basis to build on kind of thing, a bit more kind of an understanding about, they've got more of an understanding about you and stuff and the things that you know you want to talk about or you want to deal with kind of thing I suppose.

Any other suggestions on how to improve, on how to improve the service?

I think it might be a bit better if they kind of had slightly more accessible advice in between the clinic times. Because you go to the clinic and they go have you got any problems with anything? You think well I did three months ago but my appointment wasn't till now and I've sorted it out now [laughs] so it would be nice if you kind of could get more advice in between. Like you know I don't know if I have a specialist nurse or even who she is or any, I wouldn't know who to contact if I had a problem or if I had a query or something I wasn't sure about, I wouldn't really know who to contact about it. And a friend of mine who wanted to change from the two injections to the four who, you know he had huge problems about actually trying to get someone, because the doctors said they can't do it has to be the nurse and he had a huge problem with actually getting a nurse who, first getting in touch with one and then finding a time that she can actually come and talk to him about it and stuff. And so you know that kind of thing I think it's not, you know it's a bit, I don't know may be they need more nurses or something I don't know. Or at least to tell you you know if you have a nurse and who she is and whatever. Because I used to, I used to know who she was and whatnot but I've no idea now [laughs].
 

Says that her HbA1c is alright but that as a student she has other responsibilities and that she doesn't intend to make diabetes control the main focus of her life.

I suppose, because I don't sort of, it doesn't really, it's not really a big deal I suppose, I'm used to it so I just kind of get on with it so you know in terms of actually managing it it's alright, it could be a bit better but you know it's alright, it's not terrible, you know I don't feel like I'm completely out of control with it and I've not got a clue how to put it right or anything. And in terms of like generally the way it affects my life I'm kind of used to it so it doesn't really, you know I don't go about thinking oh you know what a hassle, you know kind of and getting worked up about it because it's just sort of used to it really, can't really remember, I cant barely remember back to when I was diagnosed let alone before that so [laughs] it's just kind of like you know it doesn't, I don't know it's not really a big problem I suppose, I just kind of got used to it and got on with it.

What does alright mean, control it alright?

Well I suppose controlling it really well would be if I had an HbA1C of under 7, then I'd be like oh yeah I've got it you know really good. But er my HbA1Cs are normally may be 8, around the kind of 8, 8.5 mark, so that's alright. I mean it's not perfect, it's not brilliant but it's not you know 10, 11 or anything like that either so that to me is kind of alright. With all the, you know because it's quite difficult as well when you've got lots of other things going on like you know if you've got a big bit of course work or you've got exams or you know things like that you don't have a huge amount of time to sort of devote to thinking oh you know how am I going to get it below 7? But as long as it's not going really, really high or anything then kind of I'm not, not you know pleased about the fact that it's above 7 but I can accept it because I don't want it to be the sole purpose of my life to get my you know HbA1C under 7 [laughs] you know so'
 

Says that as a teenager you might find diabetes more difficult to live with than it actually is...

I think we were probably arguing about it and things you know [laughs] like teenagers and parents do and so you know she kind of thought well you know you're old enough now so'

Can you remember what you were arguing about?

Probably that she didn't think I was controlling it well enough. But it's easy to say that from an outside perspective you know. When you're, it's different when you're the one who's actually you know got the diabetes and you know it's all very well from outside perspective. You know all the things that you're supposed to do but when you know when you've got it it's a different matter so probably that kind of thing [laughs].

Well I think when, probably when I was younger I, you know my sort of HBA1Cs were coming out a bit lower than [laughs] than perhaps they were you know while I was a teenager and but I mean they were always saying, 'Oh you know when you're a teenager it's too be expected, they will go up a bit.' But now I think I'm trying to bring them back down again, kind of get them a bit, I mean they've not been terrible, kind of in the 8s, 8.5s that kind of thing whereas before they were may be more around 6. But I didn't notice any sort of, may be because I didn't pay enough attention to it but I didn't, I didn't sort of sit there trawling through the you know where I'd written down my blood sugars and thinks oh no you know I'm not getting very good control. Because I think if it had been really bad I would've noticed but because it was kind of probably fairly average, you know it wasn't terrible so I didn't really, you know I didn't really find it that difficult to manage it I suppose.

Did your mum, was looking at your records and being horrified?

Yeah, 'It was much better when I was, you know looking after you, you know [laughs] since I left you to do it yourself they've gone a lot higher,' [laughs]. But you know it was, I suppose it's easier to, when you're younger and you've got your mum kind of telling you what to do than kind of, but when you know it's like when you're a teenager you kind of I don't know you'

How did you accept the criticism?

Probably not very well [laughs], but I, she's probably right it was better when I was younger and I don't know whether that's due to the fact that you know I was more careful then or you know I had more guidance from my mum or just because when you're a teenager you know things are a bit crazy and a bit more difficult and so I don't know really what the reason for it is but they probably were a bit better when I was a bit younger. But you know I think that now that I've sort of finished with my teenage years I am paying, because you know since I did the Insight course and stuff I'm kind of trying a bit harder to, without becoming obsessive about it, without kind of making it into a big deal but trying a bit harder to watch what's going on a bit better and you know actually actively try and bring my HBA1C down a little bit rather than kind of going,' 'Oh well it's a bit high but it's alright you know.'

Might be that people see it as more of a hassle and more of a difficulty than it actually is and so may be that's what's kind of you know making it difficult for people, I don't know. And also I suppose it is quite difficult because when you're a teenager you have lots of arguments with your parents so that might be something, another thing that you would argue about and things like that. So, and if your parents are nagging you then you just think I don't want to do it, just be quiet and leave me alone and so I suppose that can be a factor may be in some people. So, but I don't know re

She feels that if she talks about her diabetes it will make it seem a bigger thing in her life though she has told her close friends.

Okay and what about forming a new peer group and friends in terms of did you tell them that you had diabetes?

Eventually. I can't remember how it came about really I probably did tell them straight away because it's not the sort of thing 'Hi I'm [name], I've got diabetes,' [laughs] you know I probably did tell you know a couple of friends or whatever after a time and probably you know but I can't really remember to be honest how it came about that I told them. But I remember when in the first year that I was at my new school one of my friends was going out with somebody who had diabetes so she kind of talked to me a bit about it then. But other than that I just, it wasn't really, it's not something that I really tend to talk about with my friends you know I suppose they know, although I think they quite often forget [laughs] you know I know I've told friends before and then you know I kind of bring it up for whatever reason and they're like 'What?' And I'm like 'You know I have told you,' and they're like 'No you didn't.' I'm like 'Yeah I did.' 'Oh I forgot.' So it's kind of, it's a background thing really it's not like a big deal that you know I sort of talk about all the time or anything, they know but it's not very important kind of thing.