Diabetes type 1 (young people)

Information about Type 1 diabetes

Above all else, the young people we talked to wanted to know how to manage their diabetes so that they could get on with their lives. They wanted information that explained official regulations clearly and that helped them cope with practical matters like how to get a driving licence or what medication/insurance to take with them when travelling abroad. Those who were about to leave home also wanted information about what to do in an emergency and what kind of support would be available at university.

She appreciated the general session on driving and diabetes organised by her diabetes team.

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Age at interview: 19

Sex: Female

Age at diagnosis: 3

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Well I know my diabetes team recently ran just a couple of random sessions aimed at people of certain age. I think they ran one on 'diabetes with driving' and it was maybe an hour's talk with question time afterwards, something like that. And they sent letters out to all the people of that particular age group in the community in our area inviting then to come along to it, and then if they couldn't make it, they'd be able to get information at another time. So it's quite useful for healthcare teams to say arrange events like that just to address common issues. But people need advice on and need to know about them. They won't necessarily have time to talk about it individually in the review with every single patient. Certainly diabetes with driving was a really useful.

Before getting my provisional licence, I sent off for it maybe two weeks before my first lesson was booked - something like that - because everyone said you've got a turn around of about a week, or ten days getting your provisional licence back. But in actual fact it took about a month to get my provisional licence sorted out because they needed a letter from my doctor. And they needed to check up my on my healthcare records and things, well this background information. And I wasn't able to make the date when they had this session on driving with diabetes in my local area. But I'm sure it would've been really useful because then I would have known in advance to get the doctor's letter sent off with my application. And I think I've had'I've got to have sort of a two yearly review of my licence or something because I've got diabetes. That's just the sort of areas that people are a lot often are unsure about it's quite useful to have general events.

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

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Age at interview: 18

Sex: Female

Age at diagnosis: 10

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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.

The young people we talked to were clear that they needed to have good HbA1c test results (HbA1c means glycated haemoglobin). An HbA1c test measures your average blood glucose over several weeks. It is a test that should be offered to you at least once a year, and may be done at the clinic every three months or so. It provides a rough guide to your average blood glucose over the last few months. (See also 'Everyday factors that affect diabetes control'.)

The young people also wanted answers to their specific medical questions - it is safe to get pregnant with diabetes? What happens if you smoke cannabis? Which kind of contraceptive pill is best? They wanted to be able to ask lots of questions about how diabetes will affect their social and personal lives, and they wanted to feel like they weren't being judged by health professionals.

She feels it's important to let young people know they will get good care and advice even if they...

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Age at interview: 22

Sex: Female

Age at diagnosis: 9

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I think partly talking to other people. I mean in order to have information you have to want to have the information so there's no point in forcing information but making it available. Being non-judgemental because as a teenager you can, you know you fear the fact that you're smoking or whatever it is means that the adults are going to be 'Ah no, that's wrong'. Well yes, it's wrong, but being aware that you can still get really good care and advice I think is really important. And I think just other young people makes a massive difference, knowing that other people have problems because often it's really easy to assume that everyone else is perfect. Because the only people you hear about are the ones that have gone and climbed Mt Everest or the ones that have ended up in a coma on their 18th birthday in hospital or something. So, you know, the other 99% of people who, yeah, have problems but also get through life quite happily. I think those are the people it's really important to hear about.

She feels there's enough general information available, for instance about alcohol, and wants...

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She feels there's enough general information available, for instance about alcohol, and wants...

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Age at interview: 20

Sex: Female

Age at diagnosis: 11

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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 wanted to ask 'everyday' questions but worried that they might be seen as unimportant.

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Age at interview: 17

Sex: Female

Age at diagnosis: 12

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In terms of information, what do you think young people with diabetes need to know?

I wanted to know the little things, everyday little things.

Like what?

[Sighs] Just like if you got hot or something, what would happen? And they tell you general things like what to do when you're hypo and stuff. I wanted to know, though, everyday little things like... I don't know... what made your blood do this and that what - long-term effects, I wanted to know, as well. What if I keep pricking my finger, what's it going to do - because obviously it doesn't do anything, but I didn't know that - I thought I'd have like hard calluses on my hands or something. They didn't sort of consider to tell you that, and you felt a bit silly asking, because they just sort of took it for granted.

So there are those little things that are important?

Yeah, day-to-day things. Like they didn't tell me how to alert people about it oh like the way you're meant to store it. I thought you had to carry round a big old box or something, because that was the blood test at the hospital, and that you had to keep with you all the time, well I suppose it's personal choice but they didn't advise you, well keep a bag with you or, just, yeah, loads of things I wanted to know.

Getting hold of useful and up to date information about the latest medication and technology was very important to young people. Lots of them praised local clinics, GPs, specialist nurses and dieticians for getting hold of information for them. Parents - mothers especially - were also good at finding out useful information according to some young people, especially for those who had had diabetes since childhood. Several young people wondered whether it would be possible to be sent regular reminders about finger pricking.

She was diagnosed with diabetes when she was six and recalls getting all her early information...

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Age at interview: 18

Sex: Female

Age at diagnosis: 6

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And in terms of information, who has provided, who has given you most of the information about diabetes?

I don't, it's something that I've grown up with, like my mum and Nan were taught about, when I first went into hospital, so I as I grew up they were the ones that told me what it was about so I could understand it more. It's like my diabetic nurses were really good at helping me in the beginning, and at school the teachers taught the other children what diabetes was so I learned off them as well. So it was mainly the people that were close to me, around me, like teachers, my family and that. Because they were learning, they were teaching me at the same time. And like, it's the doctors when I had them, were quite supportive but when the one I had in child clinic I didn't have until the last four years of the child years. But that's where I got most of my information from, or I went to a few, my doctors were very good and they put me in touch with a few people that had diabetes that I saw a couple of times. And it's like, I didn't really have the internet so it wasn't things that I looked up then. But it's mainly people round me that helped me.

She thinks young people would prefer to get text messages and emails reminding them to take...

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Age at interview: 17

Sex: Female

Age at diagnosis: 3

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What do you think is the best and more effective way or ways of giving young people information about how to control their diabetes?

Email is always a good thing for young people. They usually, they're always on the internet so send them an email that says there's, there's this website available. Go and have a look. Make it so that obviously if they're younger they understand it. The teenagers make it interesting, not really boring but not too childish. For newly-diagnosed CD-ROMs are good I think because it's all there.

What's important - I mean text messages I think would be fantastic if they could think of things that, like a text. You could have a text message reminder scheme for newly diagnosed to say, 'Do a finger prick' or 'Don't forget your insulin' or facts about diabetes sent sort of every day. I mean most kids have mobile phones now and they always read their text messages. So do something that's not an effort to them, not loads of pamphlets and books that they have to sit and read. Fine for their parents but for them if they don't want it to sort of get in the way of things they don't want to sit and have to read it. But really kind of simple, sharp, right there, no sort of jargon that's doesn't really need to be there. Straight to the point.

And use new technology?

Yeah

Or use the technology that young people use?

Yeah the technology that young people use I think would be really good because it's available and say the majority know how to use it, the majority have internet access, mobile phones, and they're happy to use that, it's not an effort for them - its part of everyday life to go on a computer or use your mobile phone and it makes it less sort of imposing on you - it makes it easier for you so therefore you're going to take more notice of it. If it's not, if you don't have to sit there trawling through lots of web pages that have got, all it is just solid writing you'll actually go sort of skim over it and go, 'Oh yeah, yeah, yeah or whatever - don't care about that - get to the next bit'. If it's, if it's there and easily accessible and not too complicated then it's going to be a lot easier for people to understand and take in and quicker for them to do as well, so that they are more likely to take it in and take notice.

The charity, Diabetes UK, and its two youth magazines, were talked about quite positively, though young people expressed different views about whether they enjoyed reading about diabetic celebrities/sporting personalities like the Olympic gold medallist Steve Redgrave. Some said they were inspired by diabetic role models, others preferred to read more about other young diabetics and their lives. Some said they had found out the latest information about drugs and insulin pumps from these magazines or the website.

She has been inspired in her own life by the achievements of people with diabetes and feels no...

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Age at interview: 17

Sex: Female

Age at diagnosis: 1

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I think things like this is a really good idea because [laugh] I'm not just saying that because I'm doing it that it's an interactive way, a new way I mean because you use the Internet. I mean that's always good. It's a direct approach to children with diabetes. I mean the magazines like 'On the Level' which is for teenagers and there's one for younger children as well, that's always good because you have interviews with famous people who have diabetes and how they managed. And that's always good because I mean you look up to them as role models and you think I know that person, they can cope, they have a good career. I can do that. It's not going to affect me. So things like that do definitely help. I think just generally seeing how people get on in life and how. Well for me it doesn't really affect me and just knowing that you can do things. I mean like Steve Redgrave, he's an Olympic champion, five gold medals and he's diabetic. It doesn't really affect him does it [laugh].

So he's an inspiration?

Definitely yeah, I mean people like him and also last year I went to talk on satellite phone to this man who had gone to the South Pole with diabetes. And[laugh] I was talking to him about how things like how he stops his insulin from freezing. And it really is an inspiration because I mean what's going to stop you going from the Pole, to like from the North Pole to the South Pole walking all the way. I mean obviously there's like monetary constraints and time and like your job but you can't use diabetes as an excuse to stop you doing things like that.

Most young people had used the internet to find out more about diabetes and recommended it as a good way to link up with others facing the same problems and life choices. Some said they used the internet to search for detailed medical information from academic websites to supplement information from clinics, others liked the internet because it was informal, intimate and direct. The possibility of seeing other people of their age talking about their diabetes seemed a good idea to some, but others were less sure and felt that it probably wouldn't help them (see also 'Online discussion groups and blogs').

He hadn't been confident enough when first diagnosed to join a help group but says that it would...

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Age at interview: 17

Sex: Male

Age at diagnosis: 14

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Do you think there needs to be more information about what could happen if people don't, if young people do not manage their diabetes?

I think that it needs to be easier to get to. I mean like what you're doing now. You're setting up a website and everything. With me I didn't know about any websites. The only thing I was told about is a help group which I didn't feel confident enough to go to at that precise moment in time.

So it would have been a lot of help for you to have a, kind of a website to go and find out?

Yeah It would have been a hell of a lot easier for me to go on a website by myself and just go, oh, you know that's his experience or that's her experience. Do you know what I mean. I'll have to remember to do that. I'll have to try and remember to keep that in mind and stuff like that.

What would you like to know about other young people's experiences of managing their diabetes?

I'd just like to know how they got on with it. How, experiences they've had. Whether they've ever forgotten to take their hypos stuff out with them. Just, just so I know that I'm not the only one. Do you know what I mean? Just put that at the back of my mind to think, 'Oh, you know I'm not the only stupid idiot that's done that. Do you know what I mean. I'm not the only one that's forgot, you know.

She valued getting practical information from specialist nurses and dieticians and also read...

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Age at interview: 22

Sex: Female

Age at diagnosis: 9

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Lets talk about information and information sources. Where have you got most of your information about diabetes from?

Complete range. I've, when I was studying at university I had access to a kind of scientific journals and things like that. So purely for interest really rather than how should I live my life, I've read things like that as I've got older and wanted to know more, kind of the science behind it. I read 'Balance' each month which I find can be helpful. I mean the thing about diabetes is it's so personal. You know different people respond to different things. You often get told, oh in colder weather you'll go low but actually sometimes in colder weather I go high because I'm wearing lots of clothes and I'm not doing anything because it's cold. You know I won't be outside so much. So things like that can be really helpful.

Diabetes nurses, actually I have been really fortunate. My dieticians have been great. I've had two, oh no one excellent dietician, two excellent dieticians who've been just the people that would tell me things. And like one of them was telling me things while I was still not listening to her and sort of three years later started following them. And you know, it, it just made sense and just always, always willing to answer whatever question and not pretend it was all ok.

Leaflets and other written information about diabetes were of less interest to most young people we talked to, and those who did mention leaflets said they were generally good enough but that they hadn't really read them thoroughly. Young people held different opinions about how much detailed information they wanted about diabetes - a 21 year old woman said she was shocked by a Canadian booklet and the way it presented statistics about diabetes, but someone else felt that 'gory pictures' he found in books gave him the incentive he needed to take diabetes seriously.

She was upset by a booklet she saw in a supermarket because it was so blunt about possible future...

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Age at interview: 21

Sex: Female

Age at diagnosis: 15

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Where did you get your information from?

Once I found, when I was in Canada I was in a supermarket and they had a by the cash point they had a whole load of these magazines, or booklets, on how to deal with certain ill, illnesses or just guides on, there was one on diabetes and I thought, 'Oh, that'll be interesting, I'll just have a look, see what they say.' It, it was more aimed at people who don't have diabetes, just to educate on what it is and I was just like, it's 99 cents or something, I thought, 'Yeah, I'll buy that, see what it, see what it says.' And it had some recipes in it and it had, you know, so I was read that and I was all quite interested and then I thought it was quite interesting and then and helpful and then I got to the section on the complications and it was just, I remember it was so blunt. And it came out with all these really shocking stats and I think it was probably aimed more at the public to make them realise diabetes is, is an issue, it is a serious problem and we need to sort it out, rather than at a diabetic, because it upset me quite a lot. It was really, yeah. I could see why the doctors try not to be too open about that because it is quite a, a shocker when you find out [laughs].

How old were you at that time?

I was 19 or something.18. 19.

So they hadn't explained..?

They had explained to an extent. Yeah, no, they had by then told me I'd got to be careful. I knew, I always knew I had to be careful of my feet and I had to be careful of my eyes and things but this booklet and a, well, it was very, very, oh. I can't remember the statistics, but it was just coming out with all these little shocking statistics of how many people are blind by the time they're 40, and how many people have their feet amputated and how, I just, I didn't want to know. I want to know that I have to be careful but I don't want to know that I could be walking around with heart problems and blind and no feet and, it's not that bad. And nowadays, maybe however long ago when the control was worse, that might be more true, but now that insulin's getting better and hopefully with pump therapy becoming more and more common, the complications are going to be far rarer. Hopefully. Fingers crossed again.

Another person wanted leaflets to include more sections that didn't 'toe the line' and talked about common fears - for instance she had felt frightened about needles and had wanted to know if other people felt the same way.

Mobile phone Apps

Downloading Apps on to a mobile phone to help manage diabetes is also very popular. Some of the young people we talked to found that there were particularly useful diet and carbohydrate counting and exercise applications out there. Katie - who has been living with diabetes for several years - said she used the apps a lot when first diagnosed but now mostly only use them when they go to eat out. Sophie routinely uses an app to record her blood glucose reading and prefers it to a logbook. Young people said that Apps are generally inexpensive and within their budget.

Robert feels that the emphasis should be on the development of aids and devices to help people manage their Type1 diabetes and not just on finding a cure.

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Robert feels that the emphasis should be on the development of aids and devices to help people manage their Type1 diabetes and not just on finding a cure.

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Age at interview: 21

Sex: Male

Age at diagnosis: 20

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But I am very much along the lines of I think devices are the way forward in easier management. Like if you could get this device where you stamp it on your arm and scan and is funded by the NHS how wonderful would that be, not having to prick your fingers in every day, just have this on. This lasts for three days, wipe it, get your blood sugar. Then if the DVLA recognise that then that means you wouldn’t need a blood tester.

And I think the future of diabetes is all about small and discrete devices and maybe even like developing a closed loop system where you’ve got blood sugar management and your insulin dosing all in one. Because I think that would be fantastic and that would be absolutely brilliant. So I am very much device focused. I think the future is in devices. But obviously I get frustrated when everything seems to be all about developing a cure and finding the best way to implant new cells into the body.

Young people said that life with diabetes is a gradual learning experience and that the key is to learn what works and what doesn't work for you.

Last reviewed December 2017.

Last updated December 2017.