Katie

Katie uses an insulin pump and feels that it has make the management of her diabetes much easier. Katie has good control of her blood sugar levels and feels that hockey training has helped a lot in keeping things stable. Her HbA1c is within normal range although she finds it harder to keep her blood sugars well controlled at night. Roughly, she would test her blood sugars about five times a day and before going to bed. She does not mind doing the finger prick tests and repeating them if her reading are not good or, before doing sports. She would love to have a continuous glucose monitor, but as a student she cannot afford it and her hospital does not have the funding for it.

Katie was diagnosed when she was 14 and has recently transferred to the adult clinic. Her move from the children’s to the adult clinic in the same hospital was organised to overlap with her move to university. She feels that continuity of care is important and described her clinic transferred as pretty good’. Her first appointment in the adult clinic included her paediatric consultant and her new adult consultant who exchanged information about her treatment and how she was managing her diabetes. They talked with her about issues to do with diabetes control when at university such as sport activities, alcohol and diet. Katie says that they were also interested in finding out that she was ok in herself not just her condition. She left that consultation with the contact details of her consultant and nurses and with the information that her university had to offer her a fridge for her personal use to keep her insulin in. Since moving to university, she has kept her regular appointments with her care team at home and she hasn’t had any problems in finding slots that fit around her holidays and university breaks. She finds that organising appointment well in advance helps.

After diagnosis, she was on Novorapid and Lantus insulin injections. In under a year her hospital moved her on to an insulin pump because she was looking after her diabetes very well and also because she did lots of sports and was planning to go travelling. Mum or Dad attended the pump training course with her. She explains that in the course, everything was taught with a lot of detail such as how to set the pump up, how to set the basal rates, the ratio of carbs to the bolus, about temporary basal rates, correction dosage e. T. C. She went home with the same information in writing and with the contact details of pump specialist nurses in case she got stuck’. Katie found that being on an insulin pump make it really easy’ to control her diabetes. On summer holidays though, she prefers to reverse to using insulin pens and starts injecting a week before she goes away. This is a precaution in case of problems so she is able to contact her care team for advice before she travels. The change to pens is due to personal preference.

She is due to have her pump changed, but she doesn’t know which ones her hospital has to offer. Among the things that are important for her in an insulin pump are: easy to use, a good alarm system, plenty of warning about low insulin levels, good battery life and small in size.

In general, Katie has good control of her blood sugar levels and feels that hockey practice has helped a lot in keeping things stable. On average, her HbA1c is 6 although she finds it harder to keep her blood sugars tightly controlled at night. Roughly, she would test her blood sugars about five times a day and before going to bed. She does not mind doing the finger pricking and repeats it after thirty minutes if her reading is not good or, before doing sports. She would love to have a continuous glucose monitor, but as a student she cannot afford it and her hospital does not have the funding for it.

Katie’s diabetes control has remained stable despite having a busy schedule of studying, gym work and four sessions of hockey training per week. She cooks all her meals because it makes it easier to keep a close count of her carbs and food content. Katie has found that planning and cooking for the week makes it possible to maintain a healthy diet. She also likes going out with friends to eat. She drinks little alcohol out of personal choice and not because of diabetes. She usually doesn’t tell people she has diabetes, but her flatmates all know about it and one of them know how to treat hypos.

Soon after she got diagnosed, she joined a Facebook group of people with type 1diabetes, the Diabetes UK website and the Juvenile Diabetes Research Foundation (JDRF). She became a JDRF ambassador to help raise awareness about type 1 diabetes. She says that her care team and social media have provided most of her information and knowledge about diabetes. She follows Diabetes UK on Instagram but she doesn’t have a Twitter account. She would find it interesting to meet new people with the experience of living with type 1 diabetes.

Katie finds that planning and cooking meals in advance and her hockey training sessions has helped her control her diabetes as well as she did before university.

Age at interview 19

Gender Female

Age at diagnosis 14

How has that been, I mean the shopping and the cooking and?

It’s, it’s been alright actually. I find Sunday is my day I manage to get some time to plan what meals I’m going to eat in the week and then cook something. So I’sll often, I’sll go shopping on a Friday or over the weekend to get things together and then I’sll cook it on a Sunday. So now I’sve got meals in the fridge or the freezer that I can just get out in the week if I don’st have time to cook something in the evening or at lunchtime in the week. So I definitely say meal planning is the way forward.

Yeah I think I do ok. I cook all my meals myself so I know that the content in the food is exactly what it says it is and that I can count my carbs quite closely. I think that it is nice to go out as well and so I do sometimes go out with my friends for food and stuff like that but it’s always quite easy to make sure you get the right carbs cos the restaurants do generally publish things now. But also if I go out into [city] with my friends at night I have managed to keep my blood sugar ok with alcohol. I don’st drink a lot but if I do I make sure that I’m keeping a close eye on my blood sugar and if I have a drink with alcohol in it I then make sure that I have something with sugar in it as well to keep the balance. I do quite a lot of sport so I play hockey at least four times a week which has kind of helped to keep my blood sugar stable.

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Katie feels that there is a lot of support out there’s and says that if going to university you should take everything you would and ask for a fridge to store your medication.

Age at interview 19

Gender Female

Age at diagnosis 14

I know it’s quite an easy thing for me to say but just not to worry. There is so much support out there if you need it and contact your hospital. Also that using the pump is really helpful. If you get offered one or you get the option to use it I think give it a go if you don’st like it you can always go back to insulin pens and just tell your hospital that it’s not for you. But if you get the opportunity I’sd definitely give it a try cos there are different things out there and different options that you can have. I never wear mine on holiday for instance because I just prefer not to and it shows that you can be flexible with your treatment. So just ask, make sure you ask your hospital about different treatments available for you.

Going to university make sure you’sve just got everything with you. You can always order things with your new doctor so just transfer to a doctor at university and get everything added to your prescriptions as soon as. So then if you have forgotten anything you can get it pretty quickly. Make sure you remind your university to have a fridge available as well. They are really important to make sure you keep your medication separate and not keep it in a communal fridge. Like your flatmates should be fine but it’s not a good idea to leave it in the main fridge because you don’st know what could happen to it. So I’sve always got a fridge in my university room to make sure my medication is in there.

Ok and it’s just for you?

It’s just for me. No one else can use it. It’s in my room. My room is locked when I leave so nobody else can get in there which is great. It’s just got my medication in it pretty much.

Ok and whose idea was it to ask the university for a fridge? You doctor told you, your consultant?

Every university will be able to give you a fridge. You just need to make sure you remind them when you apply for halls. But you need one. I did. I think it just went through on my form. So I had to fill in a form about myself and any medical conditions and they will then sort that out for you but just make sure you remind them so that when you arrive it is there. And it makes the process a lot easier than having to go backwards and forwards and make sure you’sre remembering that they’sve ordered one and things like that.

Ok so did you know before applying to uni that you were entitled to have?

Yes I did but I think some people don’st know about that. I only knew because my doctor told me and my brother’s also been to university. So I’sve kind of got experience through that. And when you look around halls they sometimes tell you what you can see one in someone’s room. And that kind of reminds you that you need to get that sorted.

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After her diagnosis, Katie became active on online discussion groups but now she describes herself as an observant’s. She follows Diabetes UK on Instagram.

Age at interview 19

Gender Female

Age at diagnosis 14

And when did you start using social media? How did it come about?

I don’st really know. I think I started using it quite soon after I got diagnosed. I think that was one of the first things I did on Facebook. I joined a group of people that had been diagnosed and I joined the Diabetes UK website and JDRF. I signed up with JDRF as a Type 1 ambassador. I think everyone can do it. And then you get information packs around. And I just kind of started talking to people through that. And I didn’st necessarily get overly involved but it was nice to actually read other people’s comments as well because you can get a lot of information from that rather than necessarily having to give your own. And it was nice to see what other people have got in terms of their treatment and how they coped with the condition.

Were you posting questions?

I did to start with but I now kind of act more of an observer and usually get a lot of information from that which is quite nice because a lot of people have already asked the same question that you want to ask and it makes you feel as if you’sre not alone if you’sve got one particular question. So it is quite nice to have things like that.

Ok. So that’s could you say has been another source of information?

What using social media? Yeah definitely it’s been quite good because you can access information really easily now. There are lots of different forums and things like that that have all the information on so it’s quite nice.

Ok. And so you have a Facebook, you’sre part of a Facebook group? And is that an open group or?

Yeah it’s completely open, anyone can join it. I think a lot of them are which is good because you can just access everything.

Ok. And also Twitter?

I don’st have Twitter. But I follow the Diabetes UK on Instagram and things like that as well and they just post photos and updates which is quite nice to be able to follow the events that go on as well. So actually it’s the Diabetes Week and things like that.

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Katie talks about the insulin pump training session she and her parents attended before she started on insulin pump therapy.

Age at interview 19

Gender Female

Age at diagnosis 14

I had a training course. I think they are now called the Pixie Training Course or something like that. I can’st remember what it was called when I did it. But basically we went for sessions over about three or four mornings. And they’sd give you the pump and they’sd teach you initially how to set it up and how to set up your basal rates and things like that. And then they’sd 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’st 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’sve spoken to them quite a lot and I didn’st 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’st 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.

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

Age at interview 19

Gender Female

Age at diagnosis 14

I had a training course. I think they are now called the Pixie Training Course or something like that. I can’st remember what it was called when I did it. But basically we went for sessions over about three or four mornings. And they’sd give you the pump and they’sd teach you initially how to set it up and how to set up your basal rates and things like that. And then they’sd 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’st 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’sve spoken to them quite a lot and I didn’st 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’st 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’st 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’st really need to know how to use it to start with.

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

Age at interview 19

Gender Female

Age at diagnosis 14

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’sve got enough insulin left in it, that the battery is running, things like that. Also look at the size of it cos I don’st 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’st 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’st 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.

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

Age at interview 19

Gender Female

Age at diagnosis 14

Because you said that you don’st 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’st 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’st want my pump on because I can’st wear it in the swimming pool anyway. It means that I’sve always got my basal rates right rather than having to worry about when I’sve 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’sd 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’sre 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’sve 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.

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Katie feels well supported by the team at her diabetes clinic and decided not to transfer when she went away to university.

Age at interview 19

Gender Female

Age at diagnosis 14

Yeah I could have transferred to [city] however I just decided to keep everything back at home because I knew the healthcare system there. And although I knew that they’sve got more funding here I didn’st want to have to start again. If I move house when I am older I probably move to wherever I’m based but at the moment I’m still based at home for a long period over summer. I’m at home over Christmas, go back a bit over Easter so there are always times within the year that I can get back or if I do have an appointment it’s not very far away for me to travel to go home. So it’s nice that I know that I do have my appointments there. It also means that over summer if I do have a problem I can contact them rather than having to come down here because I won’st have accommodation in summer whereas at home I’sve always got accommodation.

Ok. So it’s the continuity of care and practicalities of it that?

Yeah I really like the continuity of care. When I go to my appointments I still see my paediatric nurses and consultants around. So it is very nice to know that I’sve still got people that I know around. And even if I did have a problem I could always contact my paediatric nurses and they’sd put me through to the right adult nurse if I needed one or they’sd help me to arrange an appointment. So I’sve always got the care there which is a lot nicer than possibly being a bit stranded at a new hospital that I didn’st really know.

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Katie had an appointment with both, her paediatric and adult consultants. Both advised her about diabetes control at university and asked how she’s was doing.

Age at interview 19

Gender Female

Age at diagnosis 14

I stayed with the same hospital and so I just moved up to their adult department. The transfer was pretty good because they did my first appointments with my adult consultant and with my paediatric consultant. So they’sd both meet at the same time as well as having me in the appointments to make the transfer a lot more smooth than if I was to just jump up.

What were the main issues?

They talked about the treatment that I was currently on so that the new consultant could get a picture of what I’sd been using as my treatment. They also spoke about things that I did to monitor my diabetes and also sport, moving to university and next steps that I could take to make sure that I kept it in control. They talked about quite a lot of things to make sure that I’m ok not just with my diabetes but make sure that I’m ok in myself as well. And they start off the sessions like that rather than going straight into the diabetes which is good.

Ok with yourself, what do you mean?

Just in general like my life whether I’m going out, doing stuff with friends, sports that I’m playing, activities that I’m doing, things like that, whether my general health is good. So if I’sve been to my own GP what I’sve discussed with them, all things like that to make sure that everyone within my medical world is together.

Ok so that they have a full?

So they have a full picture of my medical

Ok, ok. And how do you feel about that? How?

I like that because it means that they’sre actually taking an interest in my whole health rather than just my diabetes. I’sd say it’s quite nice to make sure they are actually getting a full picture of my health rather than just

Do you remember what they said specifically about you moving away from home and coming to uni and what type of support you might need or?

I don’st remember specifically. I do know that they tell me that I’sve got their numbers and if anything is wrong I can always call them and they make sure that I have regular appointments back home so that when I have got a break from university I do still have appointments to make sure that they are on top of it as well. Obviously they talk about diabetes and alcohol and the different effects of how that can change your blood sugar quite a lot which is good cos they know that university you are going to do things differently to when you are at home. They obviously talk about food because you’sre cooking for yourself for the first time really and then they make sure that you’sre not just going to eat trash. So it’s quite nice [ha ha].

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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’s with her friends.

Age at interview 19

Gender Female

Age at diagnosis 14

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’sd 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’sd eat and I wouldn’st want to inject at that particular place or I’sd 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.

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Every six months Katie has one-hour long appointment with each member of her diabetes team: consultant, nurse and dietician.

Age at interview 19

Gender Female

Age at diagnosis 14

Every 6 months we have the one, same morning appointments which are 3 hours long and you’sll spend some time with a consultant and then you’sll go to a nurse and then finally you will go to a dietician. So you get a little bit of time with each one of those individually rather than on the Fridays which you go into a room with them altogether. So it’s nice to get an individual appointment which is a little bit longer and they can discuss things a little bit differently which is quite good.

So what are the differences between the three appointments?

The dietician is basically your food intake to make sure that you are eating the right foods and that you are not having too many pizzas, pasta, kind of big carbohydrate meals. And also how to treat hypos and good little exercise snacks and things like that which is quite nice.

What questions do you put to her? Or if you have any questions do you write them down or?

I don’st generally have any questions. But they’sd often give you little leaflets or things like that booklets kind of with food ideas in it to make sure you’sve got the right amount of every substance, every food group in your meals.

And what about the appointment with your nurse?

I used to find that one the most informative, I guess. Because you get to know your nurse really well and she’sd come to your house within the 3 months if you needed it and you could always text her and stuff. So you got to speak to your nurse a lot more. So when we had these appointments she’sd just go through everything in general and make sure you’sve got your right basal rates and you’sre injecting the right amounts of Novorapid after meals or before meals which ever you decide to do. The consultant would go through the more challenging aspects. So he’sd look at your HbA1c and tell you ways that you could improve it. Mine used to use the analogy of the national speed limit. So 60 would be the highest that you’sd want to be really you’sd kind of want to be below that but anything below, around 40 is just a bit too slow [ha ha]. So they, he’sd go through how to manage the kind of difficult aspects of it rather than actually how much I’m injecting and things like that.

Ok, ok so it is more kind of information and the transfer of knowledge about?

Yeah he was more of the background of diabetes and anything else as well. He’sd go over things that you’sd discussed with your doctor or GP if he needed to because obviously he’s a trained medical professional anyway. So he’sd gone through all the training but generally yes it would be more of a background rather than the intricate details of how I’m controlling it myself.

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