Interview Section : YouthHealthtalk

Interview 15

Age at Interview: 16

Sex: Female

Age at Diagnosis: 7

Background: Lives with her parents and two sisters and she is studying for her GCSCs. Plans to study medicine and wants to specialise in paediatrics. Her father has type 2 diabetes. Ethnicity: Asian

Brief outline:She has lived with type 1 diabetes since 1997. As a child she used to experience many hypos and also loss consciousness several times. Her local children's diabetes clinic transferred her to another, bigger hospital. For a long time her mother used to go and check on her twice during the night to make sure that she wasn't having a hypo or even more worrying, experiencing a diabetic coma. She has fewer hypos now, but she always carries her glucose tablets wherever she goes. She injects long-acting insulin in the morning (Glargine) and a fast-acting before each meal (NovoRapid).

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Finds that the young adult clinic is encouraging her to take more responsibility and that she's doing it her own way.
Print 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.

The thing she find the most difficult when controlling diabetes is to stop having hypos.
Print In your experience what are the most difficult things about having to control your diabetes? I think getting rid of the hypo that I would have, because on one or two occasions my mum had to call an ambulance because I would lose consciousness but I wouldn't know about it. She was quite worried because they say it can affect your brain and other parts of your body and she didn't want that, and it was quite a struggle getting rid of that. And I also sort of do quite a bit of exercise too, so she was worried about letting me go to the gym. And can you tell me about those occasions you had these hypos and you lost consciousness? It usually happened during the night, so when I was younger my mum would wake up at say two and six o'clock in the morning to check on me. And on, when she didn't I would just go to bed and wake up in hospital, or with ambulance people around me, I wouldn't really know what was happening but I guessed that I'd had a hypo. It was for quite a few years that's why I got transferred from my local diabetics clinic to the London one. But my HbA1C would be high because my mum would give me glucose to bring my sugar levels up, but then afterwards they'll go really high as well, so it wasn't working for quite some time. Do you remember how long ago you had your last hypo? I think it was last week. And how was that, I mean at night also? Yeah before I've, only in the morning, it was a, around three so I just took some glucose and then I'd had something to eat afterwards, which is what they tell you to do, like not just to have glucose on it's own 'cause that's bad. Where you studying until late or? I think I was just a bit more, I had PE during the day so that might have, did something, but I wasn't really sure why. How does it make you feel to have these hypos? If I go really low then, that you feel hot and sweaty and it is, it's not something that you'd want to be every day, and so like when you start walking and you can't walk properly, and you feel like it, it doesn't feel right and so my mum can sort of tell as well, or when someone's talking to you, it's like you can hear them but, it's kinda distant. I'm sort of in a daze when it happens it's like, I'm not following everything that's happening around me so, I won't notice when a definite change when I'm in a hypo and I'm not in a hypo which is, so gradually I'll come back to normal? I won't really notice anything. Sometimes it'll be more the concern that of my mum would have, like if I was to go out later on during the day she'd be a lot more wary and wouldn't be as happy as letting me go. So, sometimes it will feel like it's holding you back but, it's just that, I've always thought of it as another part of being diabetic. Which is something else that you have to deal with.

She finds that exams and stress affect her blood glucose control the most. Her care team has advised her to do more daily blood glucose tests and adjust her insulin accordingly.
Print And your levels, how do they read when you go to hospital? It was quite high for a long time, it was in double figures but in my last appointment it was, it's coming down and it's kind, under ten now. But it's still quite high but monthly it's sort of coming down, bit by bit. I think I am doing something right [laughs]. I'm still using a diary because they say if there's any 'key events' that are going round like birthday party or something that could've happened to result in a higher or low blood sugar then I should right that down as well, so it'll be, it'll be helpful when I go to clinic to try and work out what insulin amount to do. I mean like birthday parties, or big celebrations, or exam's stress, or periods. Do any of these sort of particular events affect your readings? I think exams affect me most of all, I tend to go quite low during the exam period, maybe because I'm working a lot late into the night as well. But I think birthdays and parties, I've got the hang of knowing where my limits are and what to eat and, giving extra units as well. So I think that's okay it's just sort of exams and stress at the moment, especially with like GCSEs and everything happening. It, and my blood sugars tend to go quite low. So what do you do on those occasions? I was told to just reduce what insulin I'm taking, then maybe do a few more blood sugar monitors in between, to check that everything's okay and not too low. So I might eat a little bit extra before bed because that's usually when I go low, during the night. Their advice was to lower my insulin, and do a few more readings to, to see what's happening and then according to that I can adjust my levels in insulin.

Growing up with diabetes wasn't easy because she had serious hypos which made her mother more protective of her than her sisters.
Print So from your perspective one of the things about growing up with it was to be a little bit, or restricted or limited in the things like going out and doing things that you wanted to do? Yes like going for a meal with my friends or, going somewhere where there wouldn't be other parents, my mum would be more wary. Like she would make sure I take my glucose and a mobile sort of make sure that I have everything with me before I go out. And also when I was younger she wasn't as happy about letting me go just with friends. So sometimes I just stopped asking if I can go out and, 'cause I know what the answer would be so, but now that I'm older she lets me go out a lot more. How did you feel at that time? I knew that she was doing it for my own good, but I sort of felt that I could cope with it myself but my mum was like thinking I was too young to do, go out on my own and do those sort of things. I mean her main concern was you sort of taking care of, because of the possibility of hypos? Yeah. And how is the situation now regarding to you going out and do things with your friends? Yeah it's quite normal now I go out for meals and to the cinema and bowling and those sort of things with my friends so, my mum's okay with letting me do that. Did you talk to your mum about how you felt when she didn't leave you…? I talked to her [laughs] and convince her to letting me go, and she would sort of say, 'Maybe'. And talk it over with my dad as well, and she would sort of try and make it exceptions 'cause she said herself that she would feel bad about not letting me go. But it wasn't all time, I was usually allowed to go to most places. And your dad, what was your dad's attitude towards it all? He was just sort of agreeing with my mum basically. Have you, have you talked to her or, have you had disagreements about these issues or? Sometimes, I think it's more about growing as a child in general not just with diabetes, but, it has a factor in arguments that we'd have. Like if I wanted to, mainly going out and being more independent myself when I was, like a couple of years ago my mum would be a lot more wary, but now she's sort of understanding that I am responsible enough to go out on my own. And my, I have an older sister who's four years older and she sort of looks out for me as well, makes sure that I've got the right things when I go out and she'll like call me every now and again.

Her mother had concerns about a school trip and so asked the opinion of the diabetes team who said she could go. The nurse talked to the teacher responsible for the trip.
Print Did you go on school trips and sort of sleepovers and going on a school trip for a week or something like that? In year six, that was my first trip, like that for a week and I had one of the nurses from the team came and talked to my head teacher to make sure that she knew everything and provide her with like glucose and those sort of things, hypo stop. So my mum was a bit concerned about letting me go, 'cause it was for the first time as well when I was in year six, but when she asked the doctors and nurses what to do, as in to let me go or not, and they said that I should go for it. Have you talked to her or, have you had disagreements about these issues or? Sometimes, I think it's more about growing as a child in general not just with diabetes, but, it has a factor in arguments that we'd have. Like if I wanted to, mainly going out and being more independent myself when I was, like a couple of years ago my mum would be a lot more wary, but now she's sort of understanding that I am responsible enough to go out on my own. And my, I have an older sister who's four years older and she sort of looks out for me as well, makes sure that I've got the right things when I go out and she'll like call me every now and again.

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