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.
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.
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?
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 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...
She feels there's enough general information available, for instance about alcohol, and wants...
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.
I wanted to know the little things, everyday little things.
[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.
She was diagnosed with diabetes when she was six and recalls getting all her early information...
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...
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?
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.
She has been inspired in her own life by the achievements of people with diabetes and feels no...
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.
He hadn't been confident enough when first diagnosed to join a help group but says that it would...
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...
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.
She was upset by a booklet she saw in a supermarket because it was so blunt about possible future...
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.
Mobile phone Apps
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.
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.
Last reviewed December 2017.
Last updated December 2017.