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Interview 34

Age at interview: 17
Age at diagnosis: 3
Brief Outline: She has had difficulties in finding the right type of insulin regimen for her. Until last year she was taking two injections daily of Mixtard 80/20. When she was 14 years old she had a severe fit and ended up in a coma. She has had several more fits after that but says that at present cannot cope with preparing exams and changing insulin regimen at the same time. Her current insulin regimen is still two injections a day of a mix insulin called NovoMix 30. Her last HbA1C was 10.4 which she admits is too high. She says that she keeps her blood sugar levels a bit high because she is frightened of going low and having more fits. Her new diabetes care team has suggested she consider using an insulin pump but they have also said that it will only work if she is ready for it.
Background: Lives with mother and is preparing for her final A level exams. Next September she and her boyfriend will go to the same university. She plans to study Physical Education.

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

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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.
 
 

She went to an adult diabetes clinic which was wrong for her but says the teenage clinic has been...

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Well we lived in [city] when I was diagnosed so I was in the children's department at [city] and then we moved over here and we decided that I was missing too much school to go, through going over to [city] so I moved to [city] Well I was under the [city] branch. Went to [city] for a little bit and then they said, oh there's a clinic at [city] you can go to. They moved me up into the adult clinic which I didn't like at all. So they moved me back down into the children's clinic. And it was decided before I went to university, because I'm going [name] University is where I'm going. And I thought [city] it's in between home and where I'll be at uni. I know what it is like. They've got a brand new diabetes care centre there and they've got a specific teenage section, teenage clinic which is fantastic because they understand teenage lives, all the hormones, all the changes and how to deal with you which is brilliant. It's a lot better and I feel at lot comfier there because I just felt I was too old to be in a children's one, too young to be in an adult's one. So this is a really, really good balance and it really is perfect for what I need and the doctors know how to treat me. So it, I'm, I like it there. I really do and the care team is fantastic. And all the facilities and all, just the diabetic clinic at [city] Hospital is amazing. It's lovely.

Why do you like this new diabetes care team so much. You say they are fantastic in which way?

It's the understanding that they have of my lifestyle. They know that as a teenager I'm going to be going out to the pub. I'm going to be drinking alcohol. I'm going to be staying up all night. I'm going to be doing, they know me that I do lots of sport. They know that my hormones are going wild at the age I am and they know, they just understand it a lot better. They don't. If you go in and say, oh. If you went in with a hangover they wouldn't look down on you. As if you went into the child's clinic obviously you'd be completely out of place but if you went into the adult's clinic I found that the adult doctor that I saw when I was at [city] he was very. Again you will do this, you shouldn't be doing this, you'll do as I say whether you like it or not. Well just, the teenage care team it, it is. They just understand teenagers. They make you feel comfortable. They cater for your needs to make it as easy as possible because they know that you want to get on with your life and they know that. 

The adult care team was the one that was the least understanding. They didn't want to understand what. Well that's the impression I got that they didn't want to understand what I was doing. I think they were used to adults that had the time to sort of make sure they did everything right as in prepare their lunch and prepare their evening meal. As I'm always on the go it's. I make sure I eat properly definitely and my mum always prepares fantastic well-balanced evening meals but on my lunchtime it's a case of well it's either a sandwich or a jacket potato or whatever I fancy. And they were like, no you should make and you should know exactly what you're eating. And you should make time. You should make, you should fit yourself around your diabetes was the impression that I got. I wasn't, I do not live by that rule. It fits around me all the time. I do what I want to do and it does what I'm doing. So [laugh] I make sure it's, I'm controlling it. It doesn't have a choice. It does as I say.

Yeah I mean the child care team, you can tell the definite difference. They're mildly in with your HbA1C when say you're a child it can go a little bit higher because they know that it's difficult but also you get, in the child clinic, when they find it a bit more difficult to sort of compensate for the hormones and ever
 

She began to feel like a 'human pin cushion' so she stopped checking her blood glucose levels.

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How many times a day do you check your blood sugars?

I admit I'm not great at it. I don't do it before every meal. I do it before I go to bed pretty much every night. And if I'm not feeling well I'll do it during the day. It is once or twice every day. I should do it more. I know I should but sometimes I just forget because I'm running around like a headless chicken trying to get work done, trying to organise things. But if I'm not feeling well everything gets stopped. I sit down and I sort myself out. 

What do you mean 'not feeling well'?

If I start to feel like I'm going low, if my head starts to spin, if my lips start to go tingly, my legs go a bit wobbly, if I get a bit hot I'll stop. I'll sit down. I'll do my sugars and eat something. Wait for that to sink in then carry on with what I'm doing. And then obviously check it more. If I've not been well I check it more often and if I am ill, saying I've got a bad cold or if I'll check it a lot more often because obviously it affects how it.

Have you always checked them following this kind of pattern or you were more constant before?

When I was first diagnosed I was a lot more consistent. It was four times a day, every day at least. But I said I started, I went through my little rebellious stage as I do from three but I did, I didn't really know any different but I just started to feel like a human pin cushion.

When was that?

When I was sort of 12-13.

If you start telling me again about your rebellion?

Ok. When I was 12 or 13 I did start to rebel, feel like a human pin cushion and started going, this is just too much. I can't. I mean I can dip my fingertips in boiling water as it is and not feel it because after 15 years the nerve endings have just gone, putting the needle in there which isn't a bad thing because it means that if there's no oven gloves about I can get things out of the oven. But yes I've always. And then I just started to go well I know what I feel like. I started to get to know my body and especially as what since I turned 16, well 15, 16. My hormones started to settle down. and I did start to recognise my own body and symptoms and how I was feeling. And if I wasn't right. And obviously with the help of my friends as well, they recognised that if I didn't which was brilliant because I always had the support there that I needed. If I ever stayed at a friend's house they always used to make sure. All their parents were as well. All my friend's parents know they always made sure that I did a blood test before I went to bed. Had a bowl of cereal before I went to bed and made sure that I was going to be alright through the night. It's not fair on someone else's parents to be woken up by me screaming and having a fit. So I made sure I did then all the time. 

 

Her consultant suggested that if her present insulin regimen doesn't suit her she could try the...

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They suggested that I think about trying the insulin pump if the four injections a day doesn't work. But my doctor suggested it to me along with the four injections and he said, well I'm not going to push you into anything. It will only work if you want to try it. And he made me feel a lot more comfortable about trying something new. In that I can do it in my own time and do it how I want to do it within reason obviously. And any questions that I have and the diabetic nurse is there. She's always said, we've got her number and she said anything, any problems at all ring me, however trivial it may seem. 

Because we've all we never got told anything when we were at [name] Hospital. Anything about any new things that were coming out. It was if, ah you've been. You've had diabetes nearly 15 years. You already know everything. We're not going to bother telling you anything new. As when I was first diagnosed we found about, I found out about everything new straight away. It was, that's it. There's this. This comes out, this has come out. There's no, when we were at [name] we didn't hear about anything. But now at [name] they do, suggested the insulin pump. 

Why? 

They said it would probably give me a bit more freedom. I don't have to worry about. He said, it's like having you own pancreas but on the outside of your body. I'm not so sure of it myself but I've got time to think about it. I'm not going to try anything for another year I've decided just until I've myself settled at university and then, then I can try something new. But I know I'd get the full support that I needed from there because they are so understanding and so. They make themselves so available to you. They don't make it difficult. They are willing to talk to you as well. They are willing to take the time with anything, any questions that you have however trivial they may be. They make sure that they're there to answer them and they answer them. But they talk to you like a friend as well. They don't talk down to you and they don't tell you what to do. They suggest things and then say, it's fine if you don't want to do it but we suggest that it would be good for you but we're not going to push you into doing it. So.
 
 

At fourteen she had a severe fit and went unconscious. Last year she had seven more fits. She is...

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I control it. Generally as I say I've always eaten a healthy diet. I do have high blood sugar especially if I've had a time where I've had a fit because I'm scared of dropping low again because when I was 14 I had a very severe fit. Mum found me in bed sat rocking. I look like I have rabies when I have a fit [laugh]. I feel my teeth grate. I foam at the mouth. I'm just staring at nothing. Mum found me sat in a bed, sat up rocking and I'd been sick which had never happened before. She gave me two glucagon injections which didn't bring me around. The emergency doctor came out and gave me 60ml glucose intravenously which still didn't bring me round. Bless him. I knew the doctor was a friend, is the father of one of my friends and he was. Mum said he was shaking like a leaf because he was just so scared because he knew me. And after that 60 ml he was, 'Ambulance,' and I was out cold for 36 hours even though my blood sugars had gone right up and come right back down I still hadn't woken up. 

And then after that I lost my memory which still hasn't returned. And each time I have a fit my memory gets worse but that's just because it was. They still don't know what caused that fit. It wasn't anything normal. They think it might have been an infection or a virus that brought it on. But after that we really did sort of stamp down on ourselves and say, 'Right we're here to control it. Let's get, do it properly. Do as all the books and the doctors say. Do it like we should'. And we did for a while and then we just found it was just getting too much so we went back to ourselves and I was absolutely fine. Carried on with all my sport because I stopped for a while because I thought that might have been causing it. 

And what else did you change during that time?

Nothing really. For two years I was quite nervous so the doctors said when I turned 16 and I'd started college, my first day of college that they'd try me on four injections. They thought that that might be good because I did so much. They decided that well four injections will probably work for you. I tried it and found that it just got in the way of my lifestyle. 

The last, well, three months of last year I had seven fits in total which was horrible because it takes me a good day to recover from this. They are just horrible. And he said we could really do. And from that, because of that I've been keeping my sugars high because I've been scared to drop low again which obviously has been doing me no good at all.

 
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Don't be condescending. Face and talk to patients, of any age.

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Never talk down to the patient. There's been times where I've seen doctors and they'll be really condescending. Talk to the patient as if they are friend, as if you know, you know them as a person not as a patient. Listen to their needs. Listen to what they want. You might not be able to meet them exactly but come up with a compromise. Never force them into something unless it's very, really necessary because it, it won't work. That's what happened with me. I was forced into going into four injections. I didn't like it. It gave me bad feelings about it. So it didn't work. If you wait until the patient feels the time is right then they're more likely to persevere with it and really take hold of it and go for it and make it work for themselves. 

And I always remember a thing I find if you are working with children you're working with the child and not the parent. I mean, I know you need to talk to the parents a lot of the time because the child does not understand but not sit there and completely face the patient, completely face the parent and not the child if they're of any age. That annoyed me when I was in child clinic when they sat and spoke to my mother and not me. So yeah always treat them as people I think is one thing. And definitely listen to what they want and try and make it. If it's going to do their health good try and make it happen to all your needs. 

And encourage them when they are doing well I think as well. I mean it, it's a case of getting to know your patient's personality as best you can I think, because some people take praise well which makes them carry on. Some people take if you say, you're doing this wrong look it's not doing you any good then that will make it, make them better control over whatever. But if you say that to some people then they'll go, well I don't care. So you've got to get the balance right I think. But you know that when you find your patients.
 
 
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She was worried about having a hypo or a high while taking an exam. The headmaster advised her to...

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When I took my GCSEs I was quite worried that I wouldn't be able to take a drink in with me. And that if I went low I'd miss a considerable chunk of my exams. We spoke to the headmaster and he said, right what you can do is you can apply for extra time to the exam board. And the school did that and it's a case of you get, you can have extra half hour on the end of every exam and you can take that whether you've gone low or not. And if you do go low, if you're out of the exam for sort of 15 minutes you've got that half hour and you can take as much as you need to take that. You need to apply to the exam board but I did the same for my 'A' levels as well. They did that for me. 

Speak to the head of, whoever runs the exam processes at the school. And then make sure, they make sure that all the invigilators in the exam knew that I could take a drink in with me and knew that I could take. I took a packet of glucose tablets which meant if I did start to feel myself go a bit funny I didn't have to leave the exam room. I could carry on with my exam. You don't have to take the extra time. You get asked at every exam if you need to take it, if you want to take it. As I say, you can take it if you've, even if you've not gone low. 

You just need to apply for it to the exam boards and your exam officer or headmaster knows how to do that. But it, we didn't know this until we said, is it going to be ok for me to take food and water in with me. And they went yes and do you actually want this for you. It was actually my headmaster that contacted us. Because we were only a small school so he knew this when I was doing my GCSEs but it is available and it, it is a very good idea. It took a weight off my mind knowing that if I did go low and I did need to stop for 10 minutes I could make up that 10 minutes at the end of the exam or half hour if I wanted it. But it is available. 

My mum and I didn't know about it until we were contacted about it but it is a very good thing to have. And it does mean you don't have to worry because I know that when I got nervous my sugars. I never know which way they're going to go. But I mean I sometimes go low and I sometimes go high and I was terrified that before the exam I was going to go low. Have a hypo and just be all messed up but with that, with that time, with that extra time that you've got you can get your head in gear and sorted before you have to go back into the exam hall or start writing again because you know that it's there. You're not losing any of your time from the exam. You've got the same amount of time as everyone else. So it's very good that the exam board allow for it.
 
 

One important thing is to make sure that you tell others; friends, teachers, employers that you...

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The first thing, the first and most important thing is, you have to control it. It cannot control you. And the second most important thing I'd say is make sure all the people around you know. You've got to make sure all your friends know it. It's for your safety. You're not, you don't want to go putting yourself at risk. So the more people know the better. If you're not comfortable with it just tell your close friends. Make sure all your teachers know. And as I said, your employees. And make sure that they know that if you need to get something to eat you leave a lesson or you, you have to leave your desk if you're at work or. You need a break to go and get something to eat. You can't wait until your specified break time. And they should be understanding to that. 

And as I say, friends really, just let all your friends know. I mean it's brilliant I got asked when I was at secondary school to talk about the diabetes in my science lesson. I mean science teachers appreciate it because you know more than they do. So as I say it's for your safety but on control I know it's difficult. I find it difficult but you've got to keep on top of it. It's for your sake. And if you haven't seen someone's rotted liver and kidneys due to high blood sugar have a look, it's not nice. It isn't and if you're squeamish it really will get you to get under control but yeah make sure. And I always carry glucose tablets along with me.

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