Interview 02

Age at interview: 16

Age at diagnosis: 11

Brief Outline: When first diagnosed he was on Mixtard insulin twice daily and the long acting insulin Lantus. Now he has changed to Novorapid three times daily and Levemir. He has well control diabetes and his last HbA1c test result was 7.7. Recently he has had a series of hypos all happening in the morning that he attributes to the end of school and being more active during the day. In general, his experiences of hypos have mostly been isolated events. His diet hasn’t changed much since diagnosis but he eats at regular set times. When first diagnosed he found it difficult to start doing his insulin injections. It took him several weeks before he was confident enough to do the injections himself.

Background: Lives with parents and two sisters. He is a full time student and is preparing his GCSE's exams. At university he wants to study medicine.

Feels pleased about his clinic because the staff has always given him advice he can understand at the right time for him and have helped him learn from his mistakes.

Tell me a little bit about the consultation. You know, how you relate, how they communicate and relate to you?

Okay. The nurses and the doctors at the children's clinic, when going for re-, for like check-ups, however many months apart, talk to you in perfectly normal terms. They explain it to you in the correct detail for your age and your understanding. So you'll have the most detailed understanding of exactly what your situation is and how you can deal with it. They're very, they're very nice. And they'll be, like they won't mess about with you, they'll be totally frank with you about any situation. And the advice they give you is, is very useful and it will usually sort you out for any of your problems that are currently occurring.

They don't ask you for your opinion [laugh], although like if you do have, if you do have trouble with something, they'll take it into consideration and they'll tell you an alternative. But most of the things they tell you are very, you, it shouldn't, it isn't that much of a problem when it comes to your opinion. It's very, very obvious things, very plain things, which you just have to get on and deal with. 

I suppose at the beginning, now that I look back at it, at the beginning when I was first diagnosed, you have to learn how to inject yourself and you need to learn how to do your blood tests and you need to learn what diabetes is all about and how to control it. And at that time, being 11 years old or some, something like that, I was actually, I was in my opinion too young to totally understand exactly how diabetes worked. And I've picked it up very slowly over years and years. And it becomes almost natural and you gain a detailed, very detailed understanding of exactly what diabetes is and how to control it, the longer you have it. And you don't need to start off with a perfect knowledge of it yourself, because it will come naturally over years that you have it from trial and error. And, yes, it's all very, it all comes to you very easily and simply and you understand how to control it. It's like, 'Yes, okay'.

What would you improve about the consultation? What do you think needs to be improved?

In my opinion, I've never properly thought about the consultation at my hospital, mainly because I've had no problems with it. I go there every several months, so that they keep up to date with all the changes that I make to my diabetes, like general changes in my weekly routine and whether I change insulin at particular times accordingly. And help me understand how to deal with my diabetes. But I've never suffered a problem with them. They've always been as useful as they can be, and honestly I can't think of a way that they could change to improve themselves.
 

Says that diabetes has made no difference to his social life.

I find that you have to make, in your general social life you need to make a few changes when you become diabetic. You need to know, before you do certain things you need a slightly better understanding of exactly what you're going to do. Nothing too impulsive. That way you can prepare for it. Like I completely naturally ask whenever I make an arrangement with one of my friends, 'When are we going to eat? And what are we going to eat?' And they, because I've been asking them for four years, don't even notice it either when they tell me. But it's things like that. And whether you're going to eat at this person's house or not. Which you just need to get used to. 

And also things like taking your insulin around with you. I have like a very small bag which I carry around when I'm out of the house, almost everywhere. Of course not at school, because I've got my school bag and I can just put it in there. But I usually carry around my fast-acting insulin and my blood sugar testing kit and a few tissues. Which is like nothing major, but you need to carry them around with you anywhere. Same thing with bringing around glucose tablets. When you're at school, when you're at a friend's, even at, even places where you could never imagine you'll get a hypo. If you're stuck in the middle of a field somewhere and you start having a hypo and nobody has any food on them and you don't have glucose tablets, you'll be in trouble. So you need to prepare yourself for an eventuality of something like that occurring, even when you don't expect it. Yes.

So the social aspect is the most difficult thing for you?

No.

In terms of organising and'?

It was initially.

Initially?

But you very quickly get used to it. You very quickly, it comes, there, to me now there is no difference in my social life now that I'm diabetic. I do exactly the same things with all my friends as anybody else does. The only difference is I'm, I've got a bag around wherever I go. Or, and that at meals I'll be injecting myself. But you don't need to run off unless you're very, if you're, if you're quite sensitive about people watching you inject. Then you can just like go off to the loo or something and do it there. But I'm okay with it and I just do it at the table. It takes 20 seconds and it's just something that you do.

Says that his diet is healthy and that the main change he had to make after diagnosis was not...

How is your diet? Has it changed since you were diagnosed?

My diet has changed since I was diagnosed. Not so much about what I eat, but when I eat. Certain types of foods you just simply don't eat at particular times. Such as, like when I was quite young, because it was four or five years ago, if, like if you were hungry you'd eat some chocolate or you'd go into your, you'd go into your cupboard and you'd take out a packet of crisps and just eat it because you want to, regardless of what you thought before or like what you've ate before. Like just do what you want. 

But when you become diabetic it doesn't mean that you can't eat those foods, but you need to think about when you can eat it at particular times and how much you can eat to maintain a sensible diet. So when I first got diabetes I had the worst experiences about not being allowed to eat chocolate. It was actually horrible, horrible. And I thought I'd never be allowed to eat chocolate again. Which was a statement which one of the nurses who was with me at the time wrongly gave me. 

I eat, I eat certain things like sugary foods and things like that after dinner, like as part like of a dessert. Or at parties with all my friends, knowing that it will be there. And I compensate with, for it with insulin or with extra activity. But I can't just go to my cupboard and take one out whenever I feel like it. And if I do, you can see the consequences on your blood sugar. But it would be wrong to think that at certain times you have to exclude these things from your diet. Like things like Christmas and big, special occasions, like you know you're going to eat a lot and there'll be a lot of food, some of which will be like very sugary, like lots of pudding and things like that. And you can eat what you want, but you just have to make a note of it mentally and compensate for it accordingly. Yes. 

But in general some of the major changes to my diet have been, my meals have been more balanced. I usually find that I try to include some sort of protein and carbohydrate in each meal. So at dinner I usually have chicken with pasta or chicken with rice. Or meat, meat actually go, really stabilises your blood sugar. Which is a really useless statement for vegetarians. But it's true that, it shouldn't be, carbohydrate foods are the only foods that have a direct like effect on your diabetes, but it's not true that that's the only thing you should therefore be looking at. Because if you have a, if you have a healthy diet, your health will improve and, as will your control over your diabetes.

Talks about what he does on those occasions that he is ill and cannot eat regular meals.

When you're ill, your diabetes goes completely out of control. It's quite difficult, because when you're diabetic you have to inject yourself and you have to eat a certain amount of food in a day. Not what you'd normally eat. You don't need to eat three proper meals in a day if you inject. You can still inject a lot less and eat a lot less. But you need to have something. So if you're really really ill one day and like you're throwing up and things like that, nobody's in the mood to be eating anything. But you have to eat something and you have to inject some amount of insulin. As a result, your diabetes is very difficult to control. But my general technique when I'm feeling very ill and I don't want to eat much is you buy like bottles of Coke and you sip them if you know you have to be eating something. And it's just liquid, so it's nothing too heavy. And it has a strong effect on your diabetes, so you don't need to be drinking that much. And then you get, eat like half a slice of bread and it will keep you normal, keep you, keep it going for a fair bit of time. Yes, you can expect, you could expect bad control on a day when you're feeling ill.

He says that everyone feels differently about how to tell their friends but from his experience...

And what about your friends? Do you tell your friends and acquaintances that you have diabetes?

Yes. When I got diabetes I told all the friends that I see and meet on a regular basis that I have diabetes. And actually a surprising number of people just know about diabetes from their own relatives or friends themselves which already have it. And it doesn't affect your relationships with people in any way. And everybody is totally, gets used to the fact that you have diabetes. It changes very very little. New people who you meet, like now that I've been diabetic for five years, people I met like recently eventually just pick it up. Because if you're going out to eat with a large number of people, you'll be injecting. And it will just become second nature to them. Because so many people know about diabetes now. 

It depends from person to person, but some people want to talk about their diabetes with their friends more than others, and depending on the type of friends they are. Like I know, I've got a few very close friends and they know all about my diabetes from top to bottom. And they'll spot me if I'm having a hypo at school. Which is very very useful, because it's always nice to have the assurance that if something goes wrong there'll be somebody else who'll know exactly what to do. But you don't need all your friends to know that. And often many friends want to know how your diabetes is and how it works. And it's up to you to tell them if you want or not. Like don't feel embarrassed if somebody, if you don't want to show them or tell them things about diabetes. Just keep it very short and say, 'Oh, it just, I have to eat certain things and inject at certain times' and leave it at that. It shouldn't be an embarrassment to have diabetes. 

Says that his sisters get annoyed because of the extra attention he gets at home but that he...

The only person who has responded to my diabetes in any way whatsoever are my sisters. And my sisters, because you've got this whole sister-brother situation where you've, I'm not that friendly with my sisters. And if they see me being allowed to, or being concentrated on because you're having a hypo and need the extra attention, like, even like, it's just like, even if it's just for ten minutes or if it means that you're going to get served first at dinner because your blood sugar is getting low and you need to eat soon. Everybody, everybody in the whole world is fine with it, honestly, except my sisters, or if you have any siblings, because they get annoyed at the extra attention. And I don't blame them. I mean I would say it would get me annoyed sometimes if it was the other way round. But honestly I wouldn't worry about things like that.