A-Z

Diabetes type 1 (young people)

Insulin pumps

 

What is an insulin pump?
 

An insulin pump is made up of a battery operated pump, a pump reservoir holding two to three days' worth of insulin and a computer chip that allows the user to control how much insulin the pump delivers. It is all contained in a plastic case about the size of a small mobile phone
 

How does it work?

The pump is attached to a thin plastic tube (an infusion set) that has a soft cannula (plastic needle) at the end through which the insulin passes. This cannula is inserted under the skin, usually on the abdomen (belly). The cannula is changed every two to three days. There is also a new kind of insulin pump therapy that is a tubing free insulin patch pump where the patch is directly attached to the skin. It needs to be refilled with a syringe every three days.

Both types of pump deliver insulin in two ways: 
 

1) Releasing a low dose (of rapid acting insulin) every few minutes, 24-hours a day, to maintain the basal level. This insulin keeps blood glucose in the desired range between meals and over-night. This does the same job as basal insulin, but is more flexible, and the rate can be changed during the day if need be – for example, if your body releases more stored sugar in the mornings, or if you know you will be doing a lot of exercise which means less insulin is required. 
2) Larger bolus doses are activated by the user before meals, just as with a bolus injection.
 

Some insulin pumps are waterproof but others are not. In some models, the tube or infusion set, can be disconnected from the pump when showering, swimming, doing sport or having sex. Other models are waterproof and do not need to be disconnected during any activity.
 

Sarah talks about the type of pump she is using at the moment and the training she has been getting in preparation for its replacement.

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Age at interview: 36
Sex: Female
Age at diagnosis: 7
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The type of pump I use at the minute is a D-Tron Plus, apparently I’m one of two people in Europe that is left on this pump [laughter] apparently it’s a dinosaur but that’s because [laugher] with my sight problems I’ve learnt how to use it just by feel just by counting clicks and all this all this sort of kind of thing so I’ve, I’ve not really wanted to move pumps but of course it’s being discontinued so I’m actually training on another pump at the minute to transfer in September.

Which type of pump?

It’s an Animas pump the new pumps an Animas - I think. It’s one of these new fancy blue tooth ones that plays tunes and things [laughter].

How are you finding the training for this one?

I’m finding the training it was a bit tricky at first because there are more manoeuvres on the pump to get to the same place and it’s a bit tricky with sight issues but I’m finding it a lot easier now that I’ve learnt, I've been training on it for a few months now so and they’re not going to transfer me until I'm completely up to speed with it all so yeah it’s taken a while but I’ve got there I think.
 

Lydia explains how her tubing free insulin patch pump works. She also says that with any type of pump you could get an infection

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Age at interview: 19
Sex: Female
Age at diagnosis: 12
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So I use the Omnipod at the moment. So it’s an insulin pump without a wire from the canula to the pump. And I refill it myself with an insulin and a syringe every three days. Pop it on my skin and then once it’s on my skin it’s like a plaster but as soon as it’s on my skin I’ll press a button and the needle will insert, retract and just leave the wire in my arm. So I can do that myself at home, the nurse doesn’t have to do it.

So with the pod the inf-, the insulin is inside the pod. You just replace the whole pod every three days unlike the insulin pump with the wire where you would change the canula every three days and the insulin every six days.

Ok, ok. Have you had any kind of difficulties, any kind of [sigh] problems using the insulin pump or?

Once or twice I’ve had an infection from it but that just, that’s the same with any type of pump I find because I had another pump with a wire before this one that I’ve got now. I also find that people ask a lot of questions about it because it’s. I wear mine on my arm but I don’t mind that people ask questions because it is educating people as I go through my day-to-day life so it’s quite good.

What type of questions do people ask?

Some people just are curious to what it is. Some people think it’s a nicotine patch [ha]. But it’s quite a big nicotine patch [ha] but yeah so they’ll just ask what it is and I’ll tell them that I’ve got Type 1 and they’ll be like, “Oh I know someone with Type 1 diabetes. So it’s quite good because it gets the word out there.
Reasons for using an insulin pump

Some of the young people we talked to are using, or are thinking about using, an insulin pump. People having difficulties controlling their blood glucose level often consider using an insulin pump for better management. Insulin pump use is associated with better glucose control and less hypoglycaemia. Before pump therapy, people talked of being unable to judge how much insulin to take; of going constantly high and low for no apparent reason and of getting high HbA1c's. (See also 'Managing diabetes as a teenager', 'Hypos' and 'Highs'). One young woman was 12 when she started using an insulin pump because at that point she'd had to increase the number of injections (people with Type 1 diabetes need to inject every time they eat food with carbohydrate in it) she was having and was still not getting satisfactory control of her diabetes. Another young woman who also started using a pump was pursuing a career in performing arts and found that her glucose level would go very high every time she performed and asked her diabetes team for help.

 

Explains why an insulin pump will suit her and what an insulin pump does.

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Age at interview: 21
Sex: Female
Age at diagnosis: 15
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Well, insulin pumps are being, beginning to be used more and more frequently. They're getting a lot more reliable and so are being used more but not good for everyone. They thought it was specifically good for me because I've got quite an erratic lifestyle being a student and being quite active. I, as I said, find it difficult to control my sugar levels. They're swinging from high to low all the time, however hard I try and control it. And that's exactly the kind of person that insulin pumps apparently are suited to. Or people who are doing night shifts and so they're less, they're cycle is kind of mucked up because they're working in the night and then in the day and So they're on insulin pump which is a continuous, rather than doing injections I'll have a little canula tube going into my tummy attached to a reservoir of insulin which has got a, it's about a pager size, they tell me. It's about, I don't know, just smaller than a mobile phone. And it continually trickles insulin in down through the tube into my, into me. I think every couple of minutes a drop or two goes in so it's very, it's a lot more realistic, a lot more like a real pancreas would release insulin than in lumps throughout the day. At the moment I give my background insulin, the slow acting one in the evening at 10 o'clock and it's meant to take 24 hours, it's meant to be absorbed evenly throughout the next 24 hours. But realistically it's never going to be exactly even. It depends where I inject it. Different parts of your body absorb it differently. And I don't really vary it because it lasts for 24 hours I always give myself 16 units and I try not to change that ever. But because it, because if you change it that's determining how much is in you for 24 hours and you obviously have no flexibility. But with the pump you can, you can literally just press a button and go, 'Oh I need'' If you, if I'm about to go and do exercise I can put a bit less in. If I'm going to be, well when I eat I can just put lots more in. It's a lot more flexible then and there. I can adjust it to my immediate needs. If that makes sense.

And I can, I find generally in the morning my insulin, my sugar level goes up a bit higher In the evening it might fall lower. In the night it's definitely lower. I occasionally have hypos in the night when I really shouldn't. So, throughout the day your body actually needs a different amount of that background. With the injections you can't vary that but with the pump I can set a profile. You have a 24 hour profile so during the night it might be giving you less and then in the morning it might give you more. And so it has a pre-determined'

 

For about four years he was having difficulties controlling his blood glucose level.

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Age at interview: 19
Sex: Male
Age at diagnosis: 13
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Since I've moved on to an insulin pump from syringes I've had much better control of blood sugars so I've been less inclined to think I really need to go out and find some more information.

Let's talk about blood sugar controls before the insulin pump?

Yeah. Sure. It was really rather bad. It was fluctuating high and low quite regularly and I was really feeling the effects of it. I felt awful when I was low and then generally what I would do was have far too much sweet stuff and sugar because I was, didn't want to be low. And then obviously there was kind of a rebound to being very high. And I still get the sort of symptoms of being high now which I did then which were headaches, I really noticed that my eyesight deteriorates when my blood sugar is particularly high. And you, you just, just feel it.

When you said you felt awful when your sugar levels went down, how did you feel?

Shaky, sweaty, irritable, just not myself at all. You kind of felt a bit floaty. It, you kind of felt a bit not really in the real world.

And when your sugar levels went up?

You kind of, you got sort of neck aches and stiffness in your shoulders and. I suppose it, it could well be different for different people but that's the sort of thing that I noticed. And I got to know my sort of tell-tale signs of when I was high and low quite well. So I suppose that was a good thing. I would know without having to do a blood test whether it was because I was too low or too high that I felt bad.

Were there instances in which you had to go to the hospital?

From low blood sugar no. I never actually had to be admitted to hospital for that.

And for high?

Yes. I had one return visit to the hospital after I was first diagnosed. It was probably about six or twelve months after being diagnosed I was back in hospital for another week because I was suffering so badly of being high that I was admitted again.

I felt comfortable doing the actual injection. It wasn't that I was scared of the syringe or that part of it. It was that, scared of the insulin, having too much insulin, the hypoglycaemia.

That was for four years that was your main concern would you say?

[Sigh] It probably. If I'd have known with more confidence that I could have done more insulin, had better blood sugars then I would have done but it just seemed that I could never get that dosage exactly right. So it would either be too much or too little and I'd rather do too little to be high and then correct it down later than to have hypoglycaemia and then have to sort of risk rebounding back up to being high again.

How did you find out about the insulin pump? Who suggested it to you or?

I can't remember.

You read about it?

Initially who it was. Before I got it, it was mentioned at the diabetes, consultant probably quite a while previously. But after I'd first heard about where ever that was I had looked on the Internet and spoken to people about, about the pump. But then I was bringing it up with my consultant at every appointment saying this is going to be a good thing for me.

 

Her sport was her main motivation to use an insulin pump.

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Age at interview: 18
Sex: Female
Age at diagnosis: 7
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Any particular reason why you decided to use a pump?

Yeah it was my golf basically because I started out golf when I was around 12. And I was doing injections on' I was getting really tired and couldn't concentrate. And I was eating having to eat all this stuff around the course. And then I had a tournament and it was like one of my big junior tournaments, and I had to do my injection halfway round. And I found it such a nuisance because in golf you can't have slow play. It was interrupting the players behind me and also it's not a sterile environment out on the course is it. So it's not good for your injections. And I just found it a complete nuisance. So I got to a point whether it was either, I carried, carry on and have injections because at that point I was having to go up to six'five or six injections. 

So what insulin were you taking?

Humulin. 

The same one?

Yeah. Same I did ' I had the same insulin I think, from the start until the beginning of where I was on the pump. And they said I was going to have to raise the injections that I was doing to try and level my blood sugars out. And that was not going to happen if I wanted to carry on my golf. So me and my mum went onto some websites. We went to a few American websites, trying to find some sort of alternative to injections.

On the pump you can regulate you know, if you're going to do three hours of exercise, you can reduce the amount of insulin you're going to have over that period of time. And we changed to Humalog a fast acting insulin. And it's in inserted into me all the time, so I have a constant flow of insulin. And every hour I get a certain amount of units. And if I eat anything, I give myself some insulin through that. I only have to change it every three days. So I have to change the site you inject every three days, which is fine with me. And just refill up the insulin. It's just a lot easier, you know, if you go on holiday and it's a lot hotter so you might need a bit more insulin. You can change it and things like that. And if you have a pizza, for example, I don't think I ate very many pizzas before, because it sort of gives you a whole load of carbohydrates and stops and then gives you a whole load another two hours later. But on the pump, you can regulate it and say, 'Right, I'll have the units now and then in two hours I'll have the other half'. It's just a lot easier. I can eat most foods now. And I can have the odd sweet if I want it, you know, as long as I bolus for it.

So your diet was restricted before?

Oh very, very, restricted because I mean' the only time I ever ate chocolate was before exercise. And I never ate sweets. I had to have a certain amount of carbohydrates at breakfast, lunch and dinner. I wasn't allowed anything over it or under it because with the Humulin, you only had one lot of insulin. So if you went over what you're going to eat, you'd go high and things like that so. But now I can eat chocolate bars when I want to. And then I can eat as much as I want at dinner or as little as I want and then I just bolus for that amount after I've eaten it. 

 

Every time she was on stage her sugar level would go very high. Her diabetes team helped her to...

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Age at interview: 27
Sex: Female
Age at diagnosis: 7
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I was on the four, four, well, yes, four to six injections a day regime with the Lantus and the NovoRapid. It was a very good system. I was, my HbA1c was 5.9. But I still had the hormone changes. I had very very fluctuating hormone levels, you know. And the insulin can't, no matter how hard you try sometimes and how, whatever you do, the insulin can't compensate for it. And because I was doing more performing, more singing and trying to get me sort of involved in more theatre, I was noticing that adrenalin in my body was shooting my sugars up through the roof. And when I was coming off stage my sugar would be through the roof. So I thought, 'Oh, well, this is just fantastic, you know. I'm living my dream but in the long term I'm going to make myself even more blind because the adrenalin level is going to get me'. 

So I spoke to the staff at my diabetes clinic, which are absolutely amazing, and they knew everything about me. And I talked to them in detail about it. And, you know, I says, 'What can I do? I can't, I've got this far, hell, I'm not giving up my dream now'. My mum, still tried to dissuade me. But, and they says, 'Well, we can try and get you on an insulin pump'. But they are not, unfortunately they're not available on the NHS at the moment. And they can, my particular clinic can only, can only sort of put so many people a year on them through the Primary Care Trust. And they basically, they basically said, 'Because you've lost so much vision at the age of 23, you're so young, and you want to maintain that vision for the rest of your life, and your job affects your, your blood sugars, we'll try and get you the funding for an insulin pump'. And they, they did. It came through. And that's been a, quite a tough ride, getting, getting it all balanced out. But it's amazing. And the first time that I did, I did a gig on stage and I sung, and I came off the stage and my sugar was 5.9. I was like, 'Yes'. Because the insulin pump had worked. I was so pleased. So that, that's how that came about.

 

Sophie wants to use an insulin pump to get and maintain good control and to give herself the best chances when she makes decisions about having children.

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Age at interview: 24
Sex: Female
Age at diagnosis: 12
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So my consultant first suggested it in February and beforehand it hadn’t been suggested and I was actually very adamant I didn’t want a pump. I’ve never really, before this year I’ve been very against having a pump just because I just, I feel like it would be. Again I’ve never experienced it but I feel like for me it would be quite restrictive and I think I’m quite scared to make that move. And it’s also I guess it’s that consciousness of having something on you all the time. But my consultant talked to me and she said, you know, “There’s different options.” 

I told her my concerns and my worries and she told me the different options. So there is something called an Omnipod where it’s tubeless and it sits on your leg. And I thought actually that’s, that would be something I would definitely consider. And again after going through Instagram and sort of social media I’ve seen loads of people with it and it makes me more keen because people who have great experience of it, great experiences with it and they’re more, really happy with it. And like I can see how it looks on them and how they get on with things and where they put it. You know a lot of people on their backs or their thigh or their arms and it makes me realise actually it’s more versatile than I think I had in my head. And it’s not as scary as I think I built it up to be in my head. So I’m definitely sort of, I’m keen to try it and definitely see if it helps me, helps my control. If it doesn’t help my control then I’ll probably just stay on injections but if it’s something that made my life a lot easier and my control a lot better then it is something I would definitely be willing to try so.

So this doesn’t have the canulas that need to be replaced?

No, no it’s like I guess it’s like, I think, [laugh] a box. It’s about that big and it kind of. It’s almost like the CGMs but quite a bit bigger that kind of sticks on you and has a kin-, like an insulin pouch I guess in it that the canula just goes straight into you like a, like a sensor would in a CGM. So that’s, to me that’s more, something more I’d be interested in because I, again I see a lot of things where people have sort of tube blockages and where it stops or their tub-, their pump falls off or it gets knocks or a tube gets ripped out. And things like that I just, it scares me and I just think if, when I’m on injections haven’t got to worry about any of that and I can just do it and know that I’ve done it. But I do think there’s probably a possibility of getting better control with pump therapy.
According to the young people we talked to, an insulin pump gave or will give them greater flexibility and freedom in terms of mealtimes and what they can eat. These young people are mostly students and tend to have unpredictable daily routines. A consultant had recommended an insulin pump to one young woman, who was suffering from high blood glucose levels, because she was planning to go to university the following year. Her consultant emphasised however, that it will only work if she is willing to work with it. Another university student said that she has a busy daily routine so tends to eat 'on the go' rather than have meals.
 

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

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Age at interview: 17
Sex: Female
Age at diagnosis: 3
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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.
 
 

Says that now it is possible to eat something on the go but that she couldn't have done that on a...

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Age at interview: 19
Sex: Female
Age at diagnosis: 17
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Yeah. At first it was well by HbA1cs were getting worser and worser and I went into hospital by myself because my mum was working and I got my blood results, and it was 8.4 and like I cried and I was really upset because I'd try my best to keep control but it just seemed to be shooting up and I just couldn't do anything about it. I was quite upset. And then my mum knew that so she left the brochure on the side and I had a look at it and just reading about what people said about the pump, about how it prevents, not prevents but decreases the amount of the hypos you get. And just gives you more a more flexible lifestyle because at university I'm always running about doing something. With my injections, if I want to eat on the go it's quite hard because I've got to go into the toilet and inject myself. With the pump I can just type it in, type the amount of insulin I need and then I can have it on the go. And also with the pump it's more precise. If I'm eating two slices of bread I can, I know exactly how much insulin I need rather than with injections I'd be like roughly about four units. And then sometimes I'd get it wrong and it'd go high or go too low. But, excuse me [laughs] so my mum left it on the side for me and we had a look, had a look about it, look on it, and I said, 'Maybe I'd like, quite like to try it.' Because at that point I was, I felt a bit down because my diabetes wasn't as controlled as I thought it was. 

And I spoke to a pump rep and she showed me a pump and the infusion sets and I was a bit unsure because I didn't the like the infusion sets and how we put it in because it's quite a big needle, bigger than what I'm used. So it scared me. But, once you'd told, told me all the benefits like it'd reduce hypos and more flexibility and stuff I thought that it would be best for me.

So, yeah, and then I came on it at Christmas time, during the Christmas holidays and it's just really improved my blood sugar so much and it's interesting to see all my HbA1c will be like.

You haven't had one?

No, I haven't had one yet. No, I've got one due this, end of this month. So fingers crossed, it might have brought it down.

And what did the blood test results indicate, how you do?

Yeah, they're a lot better. They're not so high, low, they're more like that. 

OK.

Because normally, sometimes my sugars could go as high as 20 and, but now I haven't had like sugars that high for a long time. But I'm normally below 11, most of the time but, yeah.

Shall I show the pump to the camera? 

You need to get up. Okay so that's what an insulin pump looks like. Great thanks. 

After attending a specialist pump service, six people we spoke to had receive funding for an insulin pump and one girl had been offered a pump and another had applied for it. The girl who applied for a pump said that there is a long list of people waiting to receive one. The parents of two other young girls bought their insulin pumps themselves.
 

Her mother got a loan to buy the insulin pump and consumables but the training and support was...

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Age at interview: 19
Sex: Female
Age at diagnosis: 17
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We thought about it in the summer holidays. But then I decided to get it at Christmas. My mum applied for what's it called, PCT? Yeah, asked the PCTs because I felt, I fitted in with the NICE guidelines, because my HbA1c was quite high and was still quite young. But I wasn't making much progress at all like, it was taking ages for anything to happen. And, so my mum just said like, 'This is really important,' and she said that she'd get a bank loan for it. So in the end my mum paid for the pump for me and just before Christmas. And paying for the consumables. Because if we had to wait for the PCT, I wouldn't have it now, I don't think, I'd still be waiting for it because it just takes lots of time. But, we're in a process at the moment, they recognise me and I think they're going to take over payment for consumables quite soon.

It was a pump rep called [name]

She used to be a specialist diabetes, specialist nurse and I had a meeting with her and she gave me all the booklets and the information and I had about two hours with her where she just spoke to me about it, what it, what it would mean, what the insulin pump does. So I had, two hours with [name] and then she gave me all the information. And then when we ordered the pump, had lots of booklets from that. And then putting on the pump on the day, I spent about half a day with my nurse, [name] the pump rep and then [name], my actual diabetes specialist nurse, both there on the day, teaching me. And we had lunch together and she showed me how to work the pump and how to work out my carb-insulin ratio. 

And then for about a week or so I'd speak to [name], the pump rep, every day and she'd go through my blood sugars with me. And then after that my diabetes nurse took control of me and helped me through it. So I had quite a lot of help.

Do you know roughly how much an insulin pump cost?

I think it's about two and a half grand.

OK. Plus the '?

Oh, yeah, the consumables. Say, the infusion set and the wire'

Ah

They're, you have to pay for them as well but I don't know how much they are. It's quite an expensive business, pumps, I think [laughs].

 

Katie got an insulin pump about a year after her diagnosis and says that it has helped with schooling and sport as well as making it easier to ‘fit in’ with her friends.

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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To start with I was on Novorapid insulin injections and Lantus for long lasting. 

Ok and for how long were you on that treatment?

I’d say just under a year. I then moved on to insulin pump.

Any particular reason?

My hospital gave funding to those that had managed to look after their diabetes pretty well. So I was one of those people and I decided that it would be the best thing for me to do while I was doing sport and the fact that I was going travelling cos that would make it a lot easier for me to be able to control. I also thought that at my age it would be, it was the best therapy because it made me be able to fit in with my friends and stuff rather than having to take myself off to the toilet or things like that to inject. 

At school it was ok because I would be able to inject with my friends around me but I felt like when I was out at a café or a restaurant or with my friends sometimes I’d eat and I wouldn’t want to inject at that particular place or I’d need to take myself to the toilet and being on the insulin pump made me kind of more included with my friends rather than having to worry about taking myself off.
 

Lewis’s Care Team secured funding for his insulin pump after the continuous glucose monitor showed that his insulin therapy was not working well for him.

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Age at interview: 12
Sex: Male
Age at diagnosis: 4
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Mother: It was different back then though because pumps still weren’t as part… they weren’t as common as they are now.

Father: And even now they are not common really.

Mother: Yeah and we hadn’t even thought. It hadn’t crossed our mind had it and it was only because the team said, “Look we don’t think we are going to get his levels under control with injections.” And we just went with the advice of the healthcare professionals at that. They felt that would be best for Lewis so we agreed with it. We really didn’t give it much thought. We weren’t against pumps but we weren’t, we want a pump.

Father: Didn’t really know that much about the did we?

Mother: No

Lewis: I didn’t even know they existed.

Father: No. 

Lewis: I was only four-six -ish.

Mother: So then they put that blind CGM on Lewis to get some data and it showed that there was no chance of getting any control. His, his bloods just swung from…

Father: Two to 20

Mother: Yeah and there was no pattern, no pattern at all but it meant that his average was always ok because it met in the middle. His A1c so if they were just looking without the CGM if they were just looking at his data for like HbA1c

Father: That would say he was managing well.

Mother: They would have said it was ok.

Ok. 

Mother: So the CGM really helped because they could prove that actually his levels were swinging and there is no pattern. So we couldn’t inject differently.

So we are, after around two years it was decided it was better for him to go on the pump?

Mother: Yeah I think it was about 18 months give or take. Yeh.

Father: I think it was the February it was decided he might they were looking to, wouldn’t they to put him on a line continuous glucose monitor. And it was another 3 or 4 months while funding was arranged. And then it was at the two year mark he went on it then wasn’t it? 
Learning to use an insulin pump

The young people we talked to said that you would need a lot of help and supervision from specialist diabetes 'pump' doctors and nurses. Also that having a practice session and talking to other young people who already use an insulin pump is a good idea before you decide whether to use one or not.

 

She talked to other young people already on insulin pumps and had a trial session before deciding...

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Age at interview: 18
Sex: Female
Age at diagnosis: 7
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Do you remember much about going to London to this hospital and getting started? Because presumably they have to give you a lot of information before you go onto the pump?

Yeah. We went to a few sort of seminars things. There was another girl, I can't remember her name, but she was on the Disetronic pump. So I went to see her and she told me about what her life had been like and things like that since she'd been on it. And I tried out that one, just had a look at it. Went to ask the bloke about that one. And then I went to see the Medtronic one, just because I wanted to see which one I would favour the most. So we did a few things like that. Spoke to a few people and then went up to the [hospital]. I spoke to a young athlete that was up there at the [hospital] on one. He was on the Medtronic and that was another turning point for me. And then I just had a few sort of group meetings up there. And they gradually build you into it so you can check which one it is you actually want. And then they put you on a trial. They put some water in it and you try it out and see if that's what you want. Then you decide whether you want it or not and then they'll put you on to the actual pump. And they'll do, they, we had training for about a month, just to check that we were getting the right basal rates and that I was doing the injections right, so they made me change sites while I was there. Just to check that I wasn't getting air bubbles and things like that in the way I was doing it.

So you and your mum'together?

Yeah. It was me and my mum, did everything for it.

And the person who was giving the training was a diabetes specialist nurse?

Yeah, she was a specialist nurse and it was also the head, Dr [name] he did that as well. So there was, I think there was another person, yeah there was another person that works for Medtronic up there as well. So there was three of us and they just looked after us for the, the sort of the year really. And I went up there and checked up, I think it was about every three months. Just to check that everything was on a roll and they were on hand on the phone whenever I needed them. 
 
 

Katie talks about the three day course she attended to get her started on her insulin pump.

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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I had a training course. I think they are now called the Pixie Training Course or something like that. I can’t remember what it was called when I did it. But basically we went for sessions over about three or four mornings. And they’d give you the pump and they’d teach you initially how to set it up and how to set up your basal rates and things like that. And then they’d go through the more difficult details of the ratio of carbs to the bolus and things like that which was pretty good because they just taught you everything in detail. They then went into even more detail about doing waves. So that got a little bit more difficult but it was a good session to go to because they told you everything that you needed to know even if you aren’t going to use, use that very often.

And you were 15?

Yeah. It was, it was difficult. My parents came with me and they gave you a folder of everything so everything was written down anyway so if you forgot you did have it backed up. And you could always call them to say, “I’m stuck. Please help me” Which was nice.

And did you call sometimes?

Yeah I have. I’ve spoken to them quite a lot and I didn’t realise it until maybe last summer that you could set temporary basal rates. So that’s been really helpful actually rather than worrying oh my blood sugar is going a little bit low. I should probably and I don’t necessarily have any sugar on me at the moment I can then set a temporary basal rate rather than having to suspend the pump which is quite nice because you know that it, you can control it rather than having to turn off the pump completely. 

Ok. So that was, would you say that was sort of the trickiest part or were they?

Yeah I think there are a little bit more intricate details which you don’t necessarily need to know to be able to work the pump but it just makes it a little bit easier to control your diabetes.

Ok so would you say that you had received the necessary information to feel a bit confident to start with?

Yeah, yeah the necessary information will constantly be repeated to make sure you know what you are doing and then the little bits they might just sort of go over quite quickly cos they know you don’t really need to know how to use it to start with.
Insulin pump technology has moved on, earlier models are now being discontinued and new ones are being introduced into the market. But visually impaired people like Sarah still face challenges. She explained that to date there are still no insulin pumps that provide instructions in audio format.
 

Sarah’s new pump has big letters that she can read more easily and can alert her of any problems with the pump such as air bubbles in the cartridge.

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Age at interview: 36
Sex: Female
Age at diagnosis: 7
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Do you have a voice reminding you or a kind of text?

No its text, I’m hoping somebody will invent a voice, a voice pump quite soon.

Yeah I mean with instructions

So I felt a lot more confident migrating because I was really nervous at first that’s why I’ve, I‘ve been prolonging it but it’s got to the point where you know, the technology moves on so I have to move on and it’s not been as terrifying as I thought it would be actually especially with the representative helping me out step by step by step. And I’ve also got my diabetes nurse as well who’s supporting me and she’s, in fact I had to have a check in with her a couple of days ago and she had to observe me doing all these new manoeuvres on the new pump so that she was confident that I knew what I was doing and they weren’t going to let me loose onto something that was going to put me in hospital, so.

So the training for the new pump has involved me working with one of the Reps for the pump company and she’s been actually coming out to my house every week and showing me new things on the pump and so she’ll show me something and then we’ll go over it and go over it and go over it and then we’ll go over it again the next week and then once I've learnt that manoeuvre she’ll move onto the next thing that I need to know. So it’s been it’s been, it’s taken a while cos I’m not a technical person and it, it has been, when I’ve, when you’ve been used to something that’s quite simple in comparison it’s a bit tricky to then go to something that’s slightly more complicated. But as far as the screen for the new pump is concerned they have made the text a lot bigger so I can actually use my magnifier with the text and see the text on it. Which is a good thing 

I think I have definitely enough support my, my team are fantastic I couldn’t wish for anymore. Information about it I haven’t had lots of information about it but then I've not really felt the need I guess, for me it’s about how the pump works and is it functional, you know, can I handle the functions on it and can I see well and the other, I suppose the other things is as well is this pump that I’ve chosen the cartridge, it’s a cartridge change whereas the other pumps you had to fill the cartridges up with a syringe so with regards to air bubbles and things like that I wouldn’t have seen them so, you know, this was another factor about the, about this particular pump that was attractive that you could just stick a cartridge into it and that was it done.
Insulin pumps are on average replaced every four years, and young people and their parents get to choose from the models that are available at their hospitals and not from what is available in the market. They felt that choosing a pump a second time round is based both on past experiences and their present priorities and needs. But young people also felt that insulin pumps are a bit harder to get in some adult clinics.
 

Katie knows what features she wants her next insulin pump to have.

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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And regarding the insulin pump you said that you might be due for, to change the one that you have? Have you been kind of looking at what you would like to try next?

I have but again I have to talk to hospital about funding unfortunately as to which one they are currently on or which couple that they have access to depending on how much it costs because a pump is incredibly expensive. But I will have a look at the different ones that I can get and choose the one that is the most convenient for me such as the ease of use and how good it is with alarms or things like that to make sure that I know that I’ve got enough insulin left in it, that the battery is running, things like that. Also look at the size of it cos I don’t want it to be too big [ha].

And the one that you are using now does it have an alarm?

Yeah it has an alarm so I can set alarms to make sure I remember to test my blood sugar but I don’t use that anymore because I know when I’m testing it. But there’s alarms to tell me when my reservoir is low. If I suspended it and haven’t restarted it, if the battery is going low and it gives you enough time to change it. So mine generally is about 72 hours that it will give me an alarm and probably even longer to be honest maybe even a week to make sure that I do remember to change the battery which is good. But you can set up your own alarms and you can have it as a system where it runs between your tester and your pump to make sure everything is kind of connected.
 

Lydia is transferring to the Young Adult clinic and knows that her insulin pump will be replaced in due course, but the funding issue worries her.

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Age at interview: 19
Sex: Female
Age at diagnosis: 12
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Do you have any kind of worries or any questions about this transition to the Young People’s Clinic?

Yeah the think that you worry about most is your insulin pump because whenever you’re in Adult’s it’s a lot harder to get an insulin pump than in Children’s and it, depending on the hospitals it depends on whether the consultant thinks that it’s helping you enough to keep you on the insulin pump. But my team are really supportive so.

So, what do you think that you might not be provided with an insulin pump later on?

No, I will, I will be because I show that I like take a lot of care with my diabetes. But within some clinics it depends on whereabouts you live and how much funding is at the hospital and whether you can prove that it is actually helping you.
Advantages of using an insulin pump that the young people we talked to told us about included: the ability to set alarms to care for specific needs (such as when exercising) as well as more regular settings like alarms for when the insulin cartridge is running low or, the battery power is low. They also talked about the ability to change the insulin dose and to do correction doses to cater for when going low or high.
 

Lewis and his parents explain that the pump can be programmed to deal with specific needs like setting it on a temporary reduction mode when exercising.

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Age at interview: 12
Sex: Male
Age at diagnosis: 4
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And who does the setting of the pump?

Lewis: We do by you can customise it to how, like what you need off for it. And then once you set it, it’s set so you can have different basal ratios. You can have more insulin at a certain time of day so that if you figure out that your bloods go higher at a certain time of the day you can add a bit more insulin to that ratio that sort of day and then it will bring it down. Then if you’re going too low you can higher, lower the insulin so that it tries to keep it stable for a day.

Ok and what about when you have to, when you do PE at school or if you’re doing any other sort of exercise

Mother: Yes Lewis PE at school [laugh].

Ooops.

Lewis: I keep the pump in there, I don’t take it off. This sort of pump is waterproof so I can go swimming in it as well.

Father: What should you be doing with your insulin?

Mother: Realistically you’ve gone round the topic.

Father: Changed the subject.

Lewis: [laugh] I should be putting myself on a temporary reduction which slows the insulin so that I don’t go low for a BA. But what I can also do is have something at, like we have these love hearts. I have a few of those before lessons so that the insulin combats sort of half and halves. It’s a half goes towards the love hearts so it should keep me stable but I really should put myself on a temporary reduction but I don’t. Go for the sweeter option.
Any young person considering using an insulin pump needs to be aware that to make it work requires commitment, time and a willingness to learn. The young people we talked to said that you need to understand much more about carbohydrate counting; and become more accurate about calculating insulin/carbohydrate ratio. Also, pump therapy requires a minimum of four blood glucose tests a day to be safe on pump therapy. Young people said that it takes several months to feel confident about using the pump and some still find some things difficult to do.
 

Describes getting used to wearing his pump, inserting a new cannula and working out the...

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Age at interview: 19
Sex: Male
Age at diagnosis: 13
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So who has given you advice for instance on carbohydrate counting?

Carbohydrate counting I've only had advice on since the pump. That wasn't brought up before then. But since the pump it was the, new diabetes nurse that I had to help me with the pump and I had very good support from her. You know, she'd sort of telephone in once a day for the first few weeks of having the pump. But again that's got a lot less now. I've not, not spoken to the same nurse for probably about six months since I've. You know in the last six months since I had the pump.

And now do you feel more confident?

Yeah. Now I will be, try and be quite accurate about counting the carbohydrate and occasionally I'll go back to weighing it so I know I'm getting an accurate. Just to kind of refresh myself on what, what is the accurate amount of carbohydrate in it. And I'm putting in much more accurate estimates of the carbohydrate that is there and if you're confident that your ratio is put into the pump correctly then it can give you really good blood sugars if you really stick to it very carefully.

Well the main thing is it's there all the time pretty much. You sleep with it. I'd normally do exercise with it. The only time that I'd really disconnect it from myself is having a bath or shower because although you can get it quite damp it's not meant to be completely submerged in water. So you gradually get used to having it there and where in your pockets you can put it and what clothes it's easy to wear. And sleeping with it you get used to having this thing that you kind of roll onto and you have a bit of a lump under you. But you get used to it and you get used to how you put it on you. 

The most difficult thing to get used to and learn about it was actually changing the set itself. So you've got a canula and you need to fire it in, into yourself with a spring-loaded little tool that they give you and then prime it and then do all that sort of side of it. And I was lucky in that I had somebody that would come round to the house and show me how to do that on a couple of occasions. But even so when they weren't there you would, you, you'd struggle and think have I done this right? Have I got the needle in the right place? What have you. But it's been worth it because it's helped me control the blood sugar so much better.

The other thing with it is giving the right amount of insulin with it and the way a pump works that it gives you two different types of dosages. Although it's constantly using the same fast-acting insulin you have a background rate, they call a basal rate, and a bolus dosage when you have any carbohydrate. So you get used to looking at a bunch of. Once you've set your basal rate which in my case they've helped me do and I've not I've not altered it since I've had the pump. You get used to looking at a plate of food, totting up in your head how much carbohydrate is there. Then you tell the pump how much carbohydrate you're having and it works out how much insulin you need for that carbohydrate based on what you've told it. How much insulin you need for the carbohydrate. So they work out a, an insulin to carbohydrate ratio and that's what you programme into the pump so it knows how much insulin to give you.
 
 

She has been using an insulin pump for almost 6 years and says that it takes several months to...

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Age at interview: 18
Sex: Female
Age at diagnosis: 7
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You had I had to go through a lot of carbohydrate counting. And when I first got the pump' for the first month or so, you had to workout how many units it was to each carbohydrate and things like that. And so gradually you build up the knowledge, so you know right if I have that piece of bread it's this certain carbohydrate so it's that amount of insulin that I need. So that took about a month or so to get that. And also to get the basal rates of how much insulin to have every hour because I mean it changes all the time. I mean at first I started off with just one' the same unit every hour and then it changed to I had a certain amount' a certain few hours in the night when I only did less insulin. And that's just to basically trial and error with blood sugars and things like that. I did have to do quite a lot of blood sugars for the first month. Just to make sure that I was getting the right amount of insulin through the night and things like that.

So you and your mum were learning about how to manage your blood sugars?

Yeah we were both learnt to do it in the first few months. And then I kind of took over [laughs] and she stood back. 

How long after you were put on the insulin pump you took over sort of speak?

It was about three or four months afterwards and I kind of' didn't want my mum help. I wanted my mum's help but at that age you sort of want to go and do it on your own. And I didn't want to have to rely on my mum all on the time. I thought I've got to do this myself. And I started to learn you know, in myself, how I was feeling you know, this right you know, I do this and do that and that. And I knew what I was doing and then if I did get in a problem, my mum knew about it anyway. She was trained up on it and so could help me.

I was fine with it. I was a lot' to be honest I think it took about four months for me to really sort of get used to it. I kept thinking' sometimes I was like, 'Oh gone high, why have I gone high?' and things like that. But I think after about six months I was pretty on the ball about everything with it. I knew exactly what to do. And most of the time if I did go high I knew why, whereas before I could go high for no apparent reason. But now I know I've gone high that means I've given myself not enough insulin for whatever I've eaten or you now, done exercise and hadn't done the bolusing right. But yeah' I mean a lot, I mean I was lot more confident. 

And then after a year, I mean, the change was just amazing. And there were still things I didn't know after a year though with the pump, you know, there's things' it wasn't until a year after that I started learning about the square bolusing where you can have certain amount of units, hit then and then two hours later have that. And that did take awhile but I mean getting used to it in the lifestyle was quite hard, with clothes [laughs].

Because you have to have them on like on the side or you have to have pockets or something, which was quite annoying. I didn't' I don't think I wore a skirt for awhile because you had to click it the side of your skirt and I just rather just have it in my pocket. 
 
 

Sarah says that the first year was a difficult one because it required her to do lots of blood tests and skipping meals to adjust the insulin dose to meet her needs.

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Age at interview: 36
Sex: Female
Age at diagnosis: 7
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So the first year of going onto the pump was, there was a lot of difficulties because it takes a while to stabilise everything because there’s no background insulin and you're just on a fast acting insulin which is drip fed into you every hour you have to know what your blood sugars are doing every single hour of the day so that you can adjust the pump accordingly because it will drip feed what you need for that hour as a background insulin and then obviously when you eat your bolus you give yourself extra insulin for the extra food. And if there’s one unit out somewhere it can obviously affect the blood sugars a couple of hours later, so there was a lot of trial and error a couple of hospital trips having to log everything down constantly and do blood tests every single hour probably for the first several months sporadically. 

So when you first go onto it you have to check the blood sugars every single hour so that you know, what’s happening and the diabetes team can adjust it accordingly. You also have to fast so you can’t have; say you want to get your morning blood sugar right you need to know what’s happening with your blood sugars anyway with no food in your body so that the pump can be programmed. So I’d have to skip breakfast for a couple of days and do blood tests all through the morning to check what was going on and to check that the, the insulin level was right for those hours in the morning and then when that was sorted out you would have to skip lunch for a couple of days so you knew what was going on at lunchtime and then obviously after that same with tea so it took a long, long time to get everything stabilised and I’d say really probably the best part of a year to be honest.
Young people we talked to explain that the use of an insulin pump requires them ‘to be on the ball all the time’. Sarah recalled an incident when she was on tour and she run out of insulin cartridges and ended up in hospital with DKA (diabetic ketoacidosis). Serious medical situations could be avoided by taking simple practical steps such as always carrying a bag with spare bits of equipment: needles, cannula, tube, battery, ketone testing kit e.t.c. Young people found it reassuring to always carry a couple of insulin pens and needles in case the insulin pump fails. 

Insulin pump users did feel well supported by nurses and manufactures when they had problems with the pump or battery. They said that manufacturers have 24/7 customer service and have offered excellent support and technical advice, they were also able to deliver a new pump within hours.
 

Lewis’s parents say that insulin pump manufacturers provide a good and reliable service.

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Age at interview: 12
Sex: Male
Age at diagnosis: 4
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Mother: To be fair the current companies are pretty good. They will let…

Father: The customer service is amazing.

Mother: They will replace your pump within 6 hours if there is an issue.

Ok

Lewis: It takes a lot of talking down the phone though.

Mother: Yeah you have to go through a lot of like checking that it’s not just user error. But when, when yeah…

Father: The troubleshoot in support is fantastic.

Mother: Yeah is really good and then when they’ve decided it’s not user error and there’s something that, it’s something they can’t potentially solve over the phone they will send you a replacement pump by courier within 6 hours.

Father: It’s actually

Ok that’s good.

Father: It’s another good thing will be the pump companies that you do get that extra level of support because obviously if you’re on multiple daily injections you’re pretty much on your own aren’t you.

Mother: Yeah.

Father: And at weekends when the, your healthcare professionals are at home and whatnot and you can’t get hold of anybody for support if you are having some sort of pump issue the companies do offer for 24/7 support so. 
Problems can and do occur with insulin pumps; like blockages in the cannula or a pump malfunction that fails to deliver insulin. If blood sugar rises as a consequence, young people said that it is very important to do an insulin injection first, and deal with the pump malfunction later.

The young people we talked to said that they'd been a bit concerned about the insulin pump being so visible at first. They also said that it gets in the way when they're trying to sleep. One young woman was afraid of people coming too close to her in case it hurt. On the plus side they said that an insulin pump can be disconnected for about one to two hours so there's no problem when going for a shower or doing sports. But most of the pumps available now are waterproof. People also described them as sturdier and they felt confident to remain connected to the pump all the time even when playing contact sports. Newer models tended to be lighter and smaller, ‘like a pager’. Still, Katie preferred not to use her insulin pump when on holiday and reverted to insulin pens when abroad. 
 

Says that at first she was not so sure about using the pump because she had to attach it to her...

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Age at interview: 19
Sex: Female
Age at diagnosis: 17
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Are you happy with it?

Yeah. At first I wasn't too sure because I didn't like this, like, thing being attached to me all the time and like sleeping, I'd always get it all wrap round me and I couldn't really sleep with it. And I was worried about what my boyfriend would think. And how, wear it with my clothes and stuff. And it's still, it's still quite annoying like when I, when I have a shower or a bath I have to take it off but kind of it's helped me so much, helped my blood sugar that it's kind of worth that little bit of annoyance really. And I'm just getting used to it so much. Like before I, I'd wouldn't let anyone come near me because my infusion set, I'd always be like, 'Don't touch me. Careful.' But now I'm just so used to it, if anyone bashes it, it doesn't hurt. So I'm just, it's just part of me now really.

And the boyfriend? Does he mind?

No, he doesn't mind at all [laughs] He's fine with it.

 

During summer holidays Katie uses insulin pens instead of her insulin pump. She starts using insulin pens a week before going abroad.

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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Because you said that you don’t use your pump, your insulin pump when you go on holidays.

No I move back to my insulin pens. I find it nicer to not use my pump when I am on holiday. I don’t want a tan liner, nice little circles on my belly. And also it means that I get my basal rates right rather than if I’m sat around the pool and I don’t want my pump on because I can’t wear it in the swimming pool anyway. It means that I’ve always got my basal rates right rather than having to worry about when I’ve got my pump on or I’m not going to get that feed of insulin going through so my blood sugar is going to be high. So it just makes me have a bit more control I think.

Normally it’s alright. It can be a bit challenging for the first few days when you change. I’d say move on to your pens probably about a week before you go on holiday to make sure you get your levels right from when you’re abroad. But generally it, it’s quite an easy switch over. There are ways that you can manage to get your basal rates right. You just look on your pump and you kind of transfer it. If you’ve got any problems just contact your hospital to know how much to give yourself.

Ok, ok. That’s a very, very good tip. I mean to move kind of a week before you go on holiday.

Yeah there’s nothing worse than getting on holiday and realising that your blood sugar is not where you want it to be because you might be feeling a bit rubbish. So if you are at home it also gives you a chance to contact your nurses and things without having to worry, oh no I’m on holiday or like a time difference or something. So it makes it a lot easier.
Not everyone likes using an insulin pump

An insulin pump is not for everyone. One young man thought about using one but decided against it because he found it too impractical. He went on to try another insulin regimen instead. One young girl found it difficult to cope with the curiosity of others at school and became depressed. She changed to insulin injections. On the other hand, Katie and Lydia said that a pump is discreet and at school they no longer have to go to the toilet do an injection.

 

Decided not to use an insulin pump and says that his new insulin regimen works in the same way...

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Age at interview: 16
Sex: Male
Age at diagnosis: 9
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He said the insulin I was taking was, wasn't appropriate to my situation. So he told me I, and we also talked about the pump because previously in the year I went to Israel to this diabetic camp. It was for like all these kids in Israel who had diabetes. It was fun, you know, and most of them had pumps, insulin pumps in them. And it seemed quite a good idea because all they had to do was push a button to increase insulin level and I was interested. And coming back to England we looked around but we found it really wasn't popular because the doctors they just weren't, no there was no doctor in England who just used the pump. And I told the specialist in London. He said the pump was available for me but he asked if there was any other way that he thought I could approach it. And the other way was this insulin which was a really base insulin, 24 hours, which meant I only had to take one injection in the day. I then NovoRapid, which is only, a quick acting insulin, for the meals.

So you're taking Lantus?

Yeah, Lantus in the morning and NovoRapid with every meal.

And, which is why the Lantus is better because it was fixed, twenty, it was a 24 hour insulin. Which was like the pump because the pump it releases NovoRapid at, at certain times throughout the day. But I didn't really want to use the pump because I thought it would be uncomfortable. I mean, as convenient as it was, you know, to have a pump, for some people, for me it wasn't as suited because I like being free of the clutter, medical, you know, instruments. 

So the, the Lantus seemed much suited, there was, there was Lantus and there was another type which came with my pen but he said that the, the other type wasn't as reliable as Lantus so I went on Lantus and it works really well for me now. I'm adjusting it really nicely and I'm on a fixed unit of 30 and I haven't changed from that till, ever since I met him in July. So it's been half a year now and it's been working really great. It's really been helpful.

 

She found the insulin pump to be a constant reminder that she has diabetes.

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Age at interview: 16
Sex: Female
Age at diagnosis: 5
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But, and then I was, and I was always on different injections. I started off on two injections and then went to three and four. And then I went on to the insulin pump. And I was, and I'd been underweight for ages, ever since having diabetes, since I was diagnosed. And then the insulin pump made me put the weight back on. Which was good. But it, I just, I didn't like it. It was too difficult to, it was a constant, for me I like to only focus on my diabetes when it's teatime or when I'm eating, when I have to take injections, when I have to, you know, double-check that my reading is okay, stuff like that. And with the pump it was a constant reminder, and people would sort of look at me and say, 'You, oh, what's that?' And I remember I got that when I was in primary set and everyone just thought it was like a toy. And I had, I moved up to secondary school and I was in assembly and it started beeping, and then it just made everyone aware of my condition. Which I'm not keen on. 

But then I went back to two injections because I think the doctors realised that it was just too much for me. And things had started to level off. I started to accept the fact that, I'd matured, I'd matured, so I started to accept the fact that I had the condition, and I just, I got on with it. And things have definitely improved and I'm much more healthy than I have been. Things are really looking up. So it's good, it's good.
 
Young people seem to find out about insulin pumps in various ways. Some are asked by their doctors to consider using an insulin pump; others looked and researched the web for alternative diabetes treatments available for type 1 diabetics; other received information about it from parents or read about it in Diabetes magazines. People also approached self help groups or found out information on social media site. (See also 'Information about diabetes' and  'Online discusssion groups and blogs'.) 

Last reviewed December 2017.
Last updated December 2017.

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