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Diabetes type 1 (young people)

Travelling abroad with diabetes

Travelling is something many young people, including those with diabetes, feel passionate about. Many of the young people we talked to had travelled all over the world and had such a good time that they were determined to keep travelling - even though a few of them had lost their insulin or been taken ill when they were abroad. Several said they decided not to let diabetes get in the way of their plans.

 

He has travelled a lot including going to Australia for 4 months as part of his gap year. Even...

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Age at interview: 24
Sex: Male
Age at diagnosis: 16
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I had a year out before I went to uni, so when I was eighteen I went to Australia, went to Australia on my own and took all my insulin with me and all the things that I needed with me, my blood tester kit, took enough supplies with me for the time I was in Australia. It was just something I just, I wanted to do and it wasn't, I wasn't going to let my diabetes get in the way of that. I knew that, I knew that I could take, take enough insulin with me for the period I was there, I was there for, I was there for four months when I was, when I was eighteen. I've also been to Kenya last year and going to Sri Lanka in five weeks so I just, I mean it's, my diabetes has never stopped me doing anything that I want to do it's just been something that I've needed to be aware of. 

Also I had a situation where I was in Australia where I lost well I had my bag stolen with my diabetes, with my, all my kit in it and I was there just totally panicking, totally worried about it. Spoke to the police about it and they were like, right well you know eventually I managed to speak to the pharmacist, the doctor and they were like, 'Right well we can sort you out no problems.' Everybody was more than willing to help you. And as it turned out like my bag had got dumped and somebody, it turned up and the policeman had it, and I was only without it for about eight hours but I mean I, but within that eight hours I'd also realised that if I had, if I'd have lost all my insulin and all my blood tester kits, that there would've been people to provide replacement stuff straight away. And it was a bit of an eye opener really that, to know that there's, obviously there's diabetics right across the world and if I was to go and, I'm thinking about going and living abroad that I'm sure that like the diabetes care in sort of westernised countries like Australia, New Zealand, America, places like that, I'm sure that you know it's going to be quite easy to go and get the same sort of level of care as you're getting here over there so yeah. 
 
 
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She lived abroad for a year and travelled a lot and says it was helpful being able to email her...

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Age at interview: 20
Sex: Female
Age at diagnosis: 3
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During your travels abroad, are there sort of situations or issues that might affect the control of your diabetes?

Nothing. I didn't even for once think about not travelling. It was, I didn't once think that why couldn't I travel like anyone else. What's the difference, you know. Ok there's small things when I was in Iowa it was snowy and freezing cold. If I had my pen, like just outside it would, you know, start freezing. So there's small things like that. And in Israel it's very hot so I had to always keep things in a fridge. And it's small things but there's no problem, you know, no problem travelling. You can, you look after your diabetes here you can look after your diabetes there. There's no, there's really no difference in, you know the care there as long as you have someone there who you can contact, that you know like where you're staying there's a doctor nearby or, or you can be in contact with your nurse here in England. As long as there's someone where if something goes wrong you have someone to call. You have someone to, you know there's.

The team here did they give you advice?

Yes, they, yes they helped me to find doctors in the countries that I went. And also where ever I was abroad I e-mailed my nurse here. I had questions and things and she, you know. Even though I was in another country she was still my nurse. I was still, you know, in contact with her.

Everyone said they needed to take enough insulin with them to cover the entire trip.  They thought it was important to stick with their usual insulin - rather than getting hold of supplies abroad - and several had asked Diabetes UK for advice about how to get medical help in whichever countries they were planning to visit. Most young people had also had useful advice from their GPs/diabetes teams about what sort of insulin to take with them and how much to take.
 
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When she lived in Brazil her mother sent the insulin out to her in the post or with friends.

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Age at interview: 20
Sex: Female
Age at diagnosis: 3
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Let's talk about you and your travels because you are someone who has travelled a lot?

Yes, I love travelling.

[Laugh] Yes. How do you manage your diabetes? What do you have to do before you travel and while you are where ever you are?

Yeah. Well first of all is that my Mum always sent me my insulin from England, always. So I never, where I was, I never had to. Even where I was in Brazil they didn't even make the insulin there, the insulin that I use. They didn't even make it there. So my Mum always sent back to me my insulin from here, with friends who were coming or you know in the mail or something. Also it's very important I have, where ever I went I had a nurse or a doctor or someone where I could, you know, be in contact with in each country. So that was also very helpful.

What about did you have any language barrier in Brazil or no? Do you speak Portuguese?

Yeah well we had to learn how to speak a little bit, yeah. No one speaks English there. [Laugh] no one. 

Were you [noises] sort of was it possibly good enough to talk to a doctor and discuss any symptoms or worries that you might have?

My doctor's English was about as good as my French or Portuguese so we, you know, we managed to communicate. You know. So it was ok.

The problems young people had when they were travelling centred mainly on leaving insulin behind in hotel rooms or having bags stolen at airports -which left them without enough insulin for the rest of the trip. Several people explained how worried they had been when their insulin was missing, but everyone managed to get help in the end. Several young people were unclear about how they should pay for medication that was prescribed abroad.
 

She left her insulin behind in a hotel in Panama and had an eight hour trip back to get it.

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Age at interview: 21
Sex: Female
Age at diagnosis: 15
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How was your experience of travelling abroad? Where the system might be different?

It was fine. I never went for long enough. I was only away for three or four months and the NHS here can give you supplies for up to three months. So I never really had to go and get my supplies from, in a foreign country. Which was a relief because most places make you pay or, I think, in Australia actually they had a way of charging it back to the NHS, I can't remember. But generally it's been fine. I was in Costa Rica with my sister and I cleverly, I had, because insulin has to be kept in the fridge, or it has to be kept cool, I had these packs, called freo, what is it, you get, I can't remember what they're called, freo-something. They're like gel bags and you dunk them in water and they absorb the water and they're meant to keep your insulin cool for four days or something but I wasn't, I wasn't trusting them completely because they weren't that cool so whenever I got to a youth hostel I would put my insulin in the fridge which I guess is a good idea. But we'd been in Panama and then we crossed the border to Costa Rica, and we'd had a kind of eight hour bus journey and we'd had a nightmare crossing the border and we'd finally got to our destination and I went to see my injection and I was like, I'd left my insulin in the fridge in the hostel back in Panama. My sister wasn't happy at all. There were no, the nearest doctor's was about four hours away and I found out the insulin they have was completely different and it was just a nightmare. So I ended up having to go all the way back and get it. Which was actually fine. I had enough with me to last me a couple of days. But '

So you had to cross the border'?

Yeah, that was just me being dappy, should have, you know, it wouldn't happen to anyone else but me, I'm just dappy [laughs] so'

 

He lost his insulin in Spain and managed to communicate with a Spanish doctor in sign language.

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Age at interview: 24
Sex: Male
Age at diagnosis: 16
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I went to Spain and unluckily had my bag stolen again in Spain with everything in there. It wasn't quite as easy there because none of the doctors spoke any English at all but I soon managed to find out diabetico [laughs] Spanish for diabetic and just keeping going, just asked and asking the doctors the hospital and they provided everything and I didn't, my E111 was in the bag that got stolen and everybody was there just still realising that you needed, needed that help and just wanted to try and help you. And gave, provided the stuff and just said 'Right you just need to make sure that you fax us your E111 when you get back,' and things like that. So what turned out to be one of, one of the worst situations with the diabetes actually, actually was sorted within, within a day and I just managed to carry on the, the holiday as normal. You know it's, it was even in a non-English speaking country it was possible, it's possible to sort out any sort of problems that you do have.

So they had the same insulin that you take here?

It wasn't exactly the same but I had to somehow communicate like the short acting and the long lasting insulin and managed to get both kinds, like they were showing me these type, different types of insulin and like I was trying to, I was trying to show, show them like your hand gestures, things like that, with short and long lasting insulin. And I mean basically after about forty five minutes of trying to explain things to a doctor they'd worked out which type of insulin I was on at home and which types of insulin corresponded with the types that they had in Spain and they'd given me enough insulin, enough needles, enough a blood tester kit, enough blood tester strips to last me the holiday. And like I said all I had to do was just fax them my E111 when I got back so it was, it was a horrible situation but one that got sorted like within a day so it was fairly lucky really.

Keeping insulin cool enough could be quite a problem, depending on whether there was a fridge where they were staying, and also what kind of activities they did.  Some recommended using special small cool bags that didn't need freezing. Trekking long distances - particularly in the heat - as well as hard physical work used up more energy than usual and some young people said they were glad to have got advice before they left and were well prepared for it. 
 

Lydia talks about how she organised the carrying of her insulin when she travelled in Europe. She was advice to remove her pump when going through customs.

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Age at interview: 19
Sex: Female
Age at diagnosis: 12
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So when I went travelling I split my medicine into three bags because I was travelling, with me, there was me and my two best friends who went. So we had the same medicine in each bag just in case a bag got lost in the airport. So we always had. I had like three times the amount that I actually needed. I carried it in Frio [cooling] bags as well to keep it nice and cold because there weren’t any, there wasn’t any fridges in any of the hostels. So I kept my insulin cold for the whole month [ha]. It smelt a bit afterwards because I hadn’t had time to dry it out but yeah it kept my insulin dry for the whole, like cool. I set alarms on my phone again because the alarms, because we were getting trains overnight and at different times. The alarms just helped me to have a bit more routine. And just carried hypo treatment, just the normal things. It wasn’t, was not complicated at all. It was just preparation.

It’s the preparation.

It’s the preparation yeah.

Ok that is time consuming.

As long as you’re prepared it’s, there’s no problem with it.

And what about going through customs with your pump and your? [ha ha]

I had a letter from my GP to say that it was an insulin pump and depending on the insulin pump and what your diabetes team say, they all say different things. But I have been told not to go through it with my pump just in case something happens to it. So if you have a letter they, I usually find with it as long as they’ve got some proof that you cannot go through a scanner.
Insulin pumps are easy to wear but Katie prefers to revert to insulin pens when going on summer holidays. She starts using insulin pens a week before going abroad in case there are problems that need medical attention.
 

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.
 

He went to Rwanda to work on a project for 3 weeks and was worried when he went to places where...

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Age at interview: 17
Sex: Male
Age at diagnosis: 11
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I went to Africa for three weeks to Rwanda which isn't a particularly developed country. And we, I spent a week there with no running water, no electricity, so no fridge to keep my insulin in. That, that's been the most difficult place for, to keep my control to be honest. And that is worrying because you haven't got an English speaking doctor for perhaps twenty-four hours where we were so that, that's been the most worrying time for me I think. And it was the most difficult to control at that point. I went low a lot because we were doing a lot of exercise. It's very hot but I just used my experience that I've had for six or seven years to attempt to correct that myself without needing to phone up for help or, because by that stage I really wanted to succeed without help from an outside source. It's something I've always tried to do, to be, to act as if I haven't got diabetes. It's one of my aims to just continue as normal keeping control. So it's always something I've wanted to do, to just blend in with everyone else.
 
Did you ask for advice before you went to Rwanda?
 
No before I went to Rwanda no. I, I've been on school trips before and I'd been given all the advice. I think in fact I think I did phone up and ask if there was anything extra or particularly important that I needed to know but there wasn't. So I was pretty happy. I mean I don't know there's anything else that could have been told to me that would have prepared me any better.
 
How much insulin were you giving yourself because you were in a hot country?
 
Yes. I took an awful lot out there to start with. Of course I distributed it amongst the people I was going with so if it got lost I'd still have insulin out there. And I, we stayed in the capital for the first week so I kept it in the fridge as much as I could for the whole three weeks and just took insulin out of the fridge to go to this remote place. 
 
Actually while I was there I was going very low because we were digging foundations for a building and I found that I didn't need to inject after eating on some occasions especially the evening meal because I'd been doing exercise throughout the whole day. And I was finding that actually without injecting and eating I was keeping at a better constant than injecting and having to. I think on one occasion I woke up in the night because I was low and had to find something to eat which isn't particularly easy when you haven't got any lights and you're struggling in the dark so. Well that was one of the things I did. I just stopped injecting for a period of a few days just to bring my control back up to normal.
 
And did you reduce the amount of insulin you were injecting…?
 
Yes I reduced my long-acting and I also reduced my short-acting by I think half per unit of carbohydrate so that I was just injecting less for the same amount of food that I'd normally eat. But yeah, I reduced my long-acting by a few units as well.
 

They got good advice from their consultant about adjusting their insulin just before they left...

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Age at interview: 18
Sex: Male
Age at diagnosis: 9
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What was their advice?

Interviewee 1' Well, I mean the last time we spoke to them, before we went, was on the day'

Interviewee 2' Day, day before'

Interviewee 1' Before we left.

Interviewee 2' 'we left.

Interviewee 1' Like, probably five minutes before we walked out the house.

Interviewee 2' We left it a bit too late.

Interviewee 1' Yeah, before, probably 5 minutes before we walked out of the house we were still talking to our consultant on the phone and like arranging how we'd adjust our insulin. So, she told us to cut our long-acting insulin, our Lantus, by 20%. So I went down to something like 45 and [my brother] went down to about 40. And then when we were up in the mountains we cut our ratios in half, so we went'

Interviewee 2' Down to 1'1.

Interviewee 1' 1'1 as opposed to 2'1.

Interviewee 2' And you're still carbohydrate counting. Eating a lot of carbohydrate. Obviously, keeping blood sugars up. Porridge every day, for breakfast which was horrible. 

Interviewee 1' It was horrid.

Interviewee 2' But obviously breakfast is the most important meal of the day. So, hang on. OK. Well, yeah. Breakfast, the most important meal of the day'

Hmm.

Interviewee 2' Obviously. Porridge every day and then for lunch, it was a bit of an amalgamation of stuff but flatbreads, stuff that wouldn't go off. Tinned foods. And obviously we had to carry all the rubbish down with us as well. So we had to get lightweight stuff.

Hmm.

Interviewee 2' But stuff that would give us a lot of energy. 

Hmm.

Interviewee 2' But we went on to 1'1 ratio so obviously I was happy we were doing something physical, something that would, that we could actually feel, like a 1'1 ratio rather than, 'Oh, you've got to watch your insulin intake.' Something that would stop us from going low. Rather than, 'Maybe you shouldn't do an injection here.' 

When did this'?

Interviewee 1' It was much better.

In, this was the first time you went into something like this.

Interviewee 2' Hmm.

Interviewee 1' Yeah.

How did it make you feel? And '

Interviewee 1' It was brilliant. It was, it was'

Interviewee 2' It was such a sense, sense of achievement. It was absolutely excellent. Yeah, I mean'

Coping with long haul flights which involved crossing several time zones was quite a cause of concern. Though most young people said they had managed well, they had needed extra help planning and sometimes adapting their routines before they left the UK.
 

He explains the plan he followed for his injections during a long flight to New Zealand and was...

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Age at interview: 19
Sex: Male
Age at diagnosis: 14
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Yeah. I was quite lucky. I played hockey at school, and we got the opportunity to go on a mixed hockey tour to Australia and New Zealand. We went in July 2003. First of all we spent a week in New Zealand, which is fantastic. We went to the South Island, to Christchurch spent a couple of days in Christchurch, and then went an hour south to place called Ashburton, and we were there for sort of two - two days, and then we went to Wellington, and then we flew out to Australia. It was their winter so it was very cold, but it was a very nice country, New Zealand.

And how did you manage your diabetes? 

Oh yeah'

What changes you had to do, what you had to pack?

The most difficult part was the flight itself, because we went with Air New Zealand, and they fly the opposite way to everybody else. They fly via Los Angeles, so it's actually a longer flight. So going backwards through time, as well was a bit difficult. But what I did was I halved my insulin and then kept my watch on British time so every twelve hours I gave half my Lantus, which at that point, I think, was 24 units Lantus - so I was doing 12 units every twelve hours, basically, to cover the flight. I still had my watch on British time, so when I got to New Zealand, I did it every 24 hours from that point. So, with the time difference, instead of having my Lantus at ten o'clock, eleven o'clock at night, which I was previously, I think I was having it at eight o'clock in the morning. Yeah, but it was still on British time, and that meant that all through the trip I was just having it in the morning, but then my sugar levels and everything were fine. No problems at all with it. And then on the plane of course you get meals sort of every four hours, and they're always quite little, so during the course of the flight I probably injected six times with NovoRapid but they were all little portions, so it was sort of eight units here, eight units there'.

Okay, so obviously you talked to your doctor before you went and he sort of told you - he or she told you'?

Yeah, they sort of set a plan, and said, 'It's best to do it this way'. I stuck to the plan and it worked out fine. I didn't think it was going to work out that well, as it did. I was really pleased when it worked out really well.

Not everyone feels comfortable at the prospect of travelling abroad, and several young people didn't want to change their usual routines in case it put them at risk.
 

She feels she has missed out though she may go abroad for her twenty first birthday and says that...

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Age at interview: 19
Sex: Female
Age at diagnosis: 3
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I go through life, no I don't know what it's like not to have diabetes because when I was, before I was three obviously I didn't have it but I was very young, I didn't know life was like without it and I still don't because I'm older and I've had it all my life almost.

Do you feel that you have missed out on things that you could do, that you could have done because of your diabetes?

Yeah I haven't, I've never been on holiday you know never left England I know because there's a lot of organising you have to do as well as the money, it can, you know you have to go to your doctors to get a different kind of insulin if because of the time zones are around the world and the having diabetes doesn't stop you from going on holiday, it's a lot more organising you have to do that's all and you have to be extremely careful obviously with where you put your insulin because you know airports, you can lose your bags, so just make sure you've got it with you at all times.
Overall the young people we met had really enjoyed travelling and wanted to do it again, though many were aware that it could cause their parents a lot of anxiety and stress.

Last reviewed December 2017.
Last updated December 2017.

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