Interview 33

Age at interview: 18

Age at diagnosis: 10

Brief Outline:

After diagnosis she was put on two insulin injections a day. But now she is on four injections a day; three injections of NovoRapid one with each meal and one of glargine at bedtime. She started to do her injections from the very beginning. She uses an insulin pen and the small size needle. Her diabetes is well-controlled; her last HbA1C result was 6.8. She attributes her good control to a well-balance diet which doesn't change significantly except when eating out; the right amount of insulin and checking her blood sugar levels everyday. She has never had a bad or severe hypo. Her blood sugars usually range between 3.5 and 10 but she finds the blood sugar tests a bit of a pain! She thinks that an important part of having good control is to understand why blood sugars go high or low and knowing what to do about it.

Background:

Full-time student preparing her final A level exams. She is going to university next September to study psychology. Lives with parents and an older sister. Says that diabetes has never stopped her doing what she wants to do.

She thinks that young people need information about how to cope in a new environment away from home.

What information in particular do you think is relevant for young people who are going off to university and have diabetes?

Just sort of who they should tell really at university, what, what kind of people they should tell. And diabetes and alcohol - I think that's important to understand what alcohol, what effect alcohol has on diabetes, that's important. Same thing with smoking and drugs, because that does become an issue at university. Taking drugs and things, that's, that can be a problem, and I think people need to understand the consequences that that has on diabetes. So I think information like that is important for young people. And also just sort of like support that they can get while they're away, because obviously you're away from home, so it's a new, new environment. And where to, what to do in an emergency. You need to understand sort of like the procedures you need to go through.

Do you wear a bracelet?

Yes, I do. I have a Medi Type bracelet that I do wear. I think that's important, especially when you're away from home, to have that in case.

So I mean quite a lot of the information you require is of a practical nature?

Yes.

What to do in case of'?

Yes, yes, and also for sort of like.. because it's inevitable that you'll come across, you'll be in situations where you might have too much alcohol. And you'll need to understand about what to do with your diabetes sort of like with regard to foods and things, what you should eat, what you should, about your insulin control, how much insulin should you give yourself if you're going drinking or things like that. I think that's important for people, for students to understand.

Feels that she has built up a good relationship with a consultant paediatrician who has seen her...

It's really sort of come from the, my consultant, who I've had for quite a while. She's been very s-, she's very supportive of diabetes and she is very knowledgeable, to actually, passes down new information about, you know, new insulins and new blood, blood glucose machines and things like that. She's really good at providing that. 

Have you had the same doctor, the same consultant?

I have, yes.

Since diagnosis?

Yes. I'm still in the, at the moment I'm in the adolescent clinic, diabetes, at [city] hospital and I've still got the paediatrician, yes, she's the children's consultant for diabetes, I still have her at the moment. And I like her a lot. She's, she really can relate to sort of young people. I think that's really important. But I'm just in the process of being moved across to the adult clinic. So I'm not sure, I think I'll have a gentleman then. So, yes, it's been nice to have the same lady, you know, so I can talk to her and she knows me, and she's seen me grow up and things and helped me control diabetes. But she's always been quite pleased with what, the progress that I've been making and things.

So you have seen her most of the times that you go to your appointments?

Yes, I'd say pretty much all the time, about 80 per cent of the time I see her. And I go every three months and I see her. There's been occasions when she's been away at conferences and I've seen other people, consultants, who are also very nice. But, yes, it's mostly the female consultant that I see.

Do not patronise young people. Be supportive and tell them the truth about their diabetes.

I think they should know that young people aren't completely oblivious to what's going on. And I think it's important not to patronise young people about their diabetes and to tell them what to do and how to control their diabetes. Because it's the individual who controls it. And anything that you might tell them doesn't really, doesn't do any help. It does probably more harm than good because it makes people want to rebel against what you, what advice you're giving them. And so I think, and there's no need to really boss people and tell them, 'Well, you shouldn't be doing this' or whatever. And I don't think that's not good advice for somebody. I think just to be supportive. And if they do ever ask questions about it, about diabetes, never be afraid to tell them the truth or give them the answers that they want. Don't just say something you think they'll want to hear. Give them the truth. And I think that's going to be beneficial to young people. But, yes, I think the key thing is just not to patronise young people or treat them like sort of an outsider because they've got diabetes, or anything like that. Or like they've got a r-, as the most, the worse thing is when people treat you like you've got a most serious, life-threatening disease. When it's not like that. I think it's just important to understand that it's their diabetes and you've got to let them, you've got to remember that it's those individuals who control it. And so just be understanding.

She doesn't have many hypos & has never had a serious one. Thinks that it is very important to...

With regards to hypo, I don't have many hypos really at all. 

And for me to have a really severe hypo my blood sugars would need to be about 2, to a level of 2. I don't, 3, I don't really feel very hypo. That's because the doctors think, because with having well-controlled diabetes it's, takes me lower, my blood sugars have to be lower for me to really recognise a serious hypo. But I've never really collapsed or fainted or have to gone into hospital with a hypo, or a hyper even. And my blood sugars are usually, they range between sort of 3.5 and 10. Occasionally I get the high ones, but I always know why. It's not like, they're not just random. It's always, if say I've had a dessert of ice cream and my blood sugar might be 12, I know why. It's because of the dessert. It's not just like my body has randomly done that. So I understand why it goes high. I think that's an important part of diabetes, being able to understand why you have high blood sugars, or why sometimes if you inject too much insulin to understand that that's the reason why you've got low blood sugar, and not just think it's because your body is doing something strange, when really it's what you're eating or what you're injecting that's having that effect on your blood sugars.

Says that there is not enough awareness about the dangers linked to highs; that doctors...

Have you ever, apart from before diagnosis, but have you ever been sort of high or felt high?

Oh, yes. There has been lots of times when, well, yes, there has been times when I've had extreme high blood sugars, maybe because I hadn't had enough insulin or something. And that made me feel a bit sort of unwell, a bit maybe sick and I was thirsty. Just the normal symptoms of when I was first diagnosed. But I quickly recognise those symptoms. I think it's good to know the symptoms of a hyper as well as a hypo. I think a lot of dieticians and consultants stress on the symptoms of the hypo. But it's just as equally as important to understand about a hyper, so that you can control a high blood sugar just as you would control a low blood sugar. Because a lot, I think a lot of people don't understand the symptoms. They don't recognise the symptoms of when they've got a high blood sugar on or a high blood sugar. But I think it's a lot more common for people to understand about low blood sugars. But it's equally as important to understand highs. And I think that should be something that needs to be worked on within the people who are explaining, the consultants and the medical people who explain about high and, high and low blood sugars.

Why do you think they do that?

I really, I think, I suppose, personally I think probably they view a hypo as being more serious than a hyper. Which to me is silly, because I think they both, they both have effects on the body I think that are equally as harming and as damaging. So I'm not sure. I think it's because when you're, when you're a child it's quite a lot of information to take in about blood sugars and high blood sugars and low blood sugars. And to have to recognise symptoms of this, that and the other is quite difficult. So I think they probably go for the hypos because they might see that as being the more, the more dangerous out of the two. Because obviously if you're hypo and you, you're nowhere with sugar and you faint and go into a coma, that is dangerous. But then there's also the risk of hypers, when you could go into hospital with, having severe high blood sugars. So I think that, yes, and I'm not sure why they do that, but it's certainly something that they should address. Because it's no good just recognising one extreme when you need to also know about the other as well.

Says that diet is very important for diabetes control and thinks that she has good control...

But I think it is good to have a, education about carbohydrates and the foods which contain like high glycaemic index and things like that. I think that's important to understand that, as it does, diet does have a major effect on your diabetes. And so that's important for a person with diabetes to understand about carbohydrate counting. 

I understand that, the basic principles of carbohydrate counting. Whilst I don't do it rigidly for every meal, I understand. And I seem to, with me because I have a diet that's quite consistent, I eat the same sort of breakfast cereals and sort of things like that, I understand, my insulin doses don't have to be adjusted that frequently. I don't really adjust them. Unless I was going out for dinner and I'd have a big dinner, say a three-course meal for dinner, then obviously I'd do more. But because most days I just have the standards, standard things to eat, I don't find that I need to adjust my Novorapid dose that much at all.

So that may be one main feature in your experience that, the fact that it's quite constant?

Yes, it is, yes. I'd definitely say it was constant. With my diet certainly I don't, I get things that I like and if they work with the insulin dose that I'm injecting I'll continue to eat them and continue to inject the same amount of insulin.

I don't want any problems like blindness or things like that. I don't want any problems with my diabetes. So to have good control and look after myself is vital if I'm going to remain in good health. And also because I've got a lot of plans for my future, what I want to become, all things like that. It's important. Like I'm, I'm only just beginning my life. I need to keep my diabetes controlled so I can fulfill all what I want to do with my life.

It is important to go for regular check-ups and if you have problems with dealing with diabetes...

That diabetes doesn't have to control young people's lives, well, or older people's lives for that matter. You should always control your diabetes. And I think that's an important message. Never let diabetes prevent you from doing anything that you want to do, or never let diabetes sort of hold you back from fulfilling any dreams that you have. Because it shouldn't. And it is possible to have just the same life as any other teenager. But it's all in, it's all in the control. As long as you've got, providing you can control your diabetes, I think that's the most important aspect of it. But there's no reason why you can't just have a life like any other teenager. 

And never, there's a tendency I think for young people to blame diabetes, blame problems on diabetes. And I think that's not something that needs to be sort of put forward as a reason for problems. Like diabetes doesn't cause sort of like, shouldn't be the excuse, you know, an excuse for people. Because I think that way is just shifting the blame on to diabetes, when really it's not really to do with that. So, yes, never blame problems on diabetes. And I think if you do have problems with diabetes, the best advice I can say is just really to contact somebody who can help. And there's a lot of people that can help. Like within clinics, I think it's important to go every three months to clinic so you can get some advice or maybe ask some questions.