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Diabetes type 1 (young people)

Patient Education Courses

Patient education training courses aim to provide people with diabetes an understanding of their condition and to develop the self-care skills that people need to manage diabetes. The idea is that by the end of the course(s) people should feel more confident and know what to do if something goes wrong with the management of their diabetes and how to adjust their diet, exercise or medication. 

In the UK there are a range of Patient Education Programmes for people over 16 diagnosed with type1 diabetes, which include DAFNE, BERTIE and Insight. (For more information see Diabetes UK and Juvenile Diabetes Research Foundation (JDRF) and National Institute of Health Care Excellence NICE).

Some of the young people we interviewed consider themselves lucky because they have been able to attend training sessions to help them calculate their carbohydrate/insulin ratio more accurately. They said that participation in training courses such as DAFNE (Dose Adjustment for Normal Eating), TIFA (Torbay Insulin and Food Adjustment) BERTIE, and Insight has made them more confident in solving problems regarding food and insulin dosage. Overall, they found these courses easy to understand, very informative and packed with new and detailed information.
 

She found the TIFA training course most helpful because now she knows what to do when she has...

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Age at interview: 19
Sex: Female
Age at diagnosis: 3
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And now I then went on a TIFA course a year ago which they're introducing in some areas of the country where it teaches you how to fix your insulin dosage around what you're eating. Say now I'll make a rough estimation of how much carbohydrates at each meal I have and the fit my dosage to suit the meal that I'm eating which means what I eat is a lot more flexible and also the eating times are more flexible with the regime.

How do they teach the TIFA course? what did you learn?

Oh there's various structures of courses you can go on, sometimes you can go on a course where you'll maybe stay for a week and actually have it as a residential course as well and stay in on location. Whereas the way I did it was with a group pf young people where about six or eight I think, and we came to a weekly course for maybe about three hours on one weekday evening for I think it was four or five consecutive weeks. And we'd eat dinner there together so that we'd be practising the method with the food that was in front of us and discussing with the healthcare team what our dosage was, and what sort of ratio we should use for the amount of carbohydrates in the food to the insulin dose we were giving ourselves. And we had a lot of support that we had to keep a food diary so they'd check up on our progress over the weeks. And they weren't they weren't there to sort of say you're doing it wrong, you're not getting the right results. It was just to give you support and we also discussed various issues relating and to puberty and that sort of age. And then perhaps how diabetes fits with alcohol or driving or things in the future even pregnancy, issues like that you want to find out about. 

Who organised this?

It was organised by our local healthcare department. I think they've run a lot of courses like this I think around the country particularly Bournemouth, I think, I'm not sure, for adults. And they're just introducing this for young people at the moment. But they've done it in a few areas around the country I think for young people.

Did you have to volunteer or were you asked to take part?

I was asked to take part in it because at that stage I think I'd been on the NovoRapid/Glargine regime for maybe a year or so and my healthcare team said to me it would be a really good way of getting in control of it more myself and getting to meet some more young people my own age in the same situation also on exactly the same regime. I think as much as it was useful on the diabetic side, it was also really useful to just have a nice social event and get to meet some other people my own age in the same situation. 

I think we had to discuss a lot obviously about changing your dosage, as you're growing up how diet changes and the best sort of diet you should be having. How you can fit your insulin around the diet or visa versa. How to gain long-term control, sort of fibrous foods, all the sort of things you learn when you're initially diagnosed. But it's just good to have a bit of a recap a few years on. 

And since then they've adopted it' they adopt it initially for adults in my area and then they brought it in for young people. And they've had really good feed back from it because I mean at least now, now that I've done It I know if I'm going high I'll be able to say, 'Right, that was exactly because I did that, that I'm high'. So even if your levels still aren't perfect 100% of the time, at least you feel in control and you know where you're going with it. Or if you go low, you can think, 'Okay, well I did that like that', I probably over did the dosage for what I ate or ma
Robert took part in a training course that he describes as ‘similar to DAFNE’. He is on multiple daily injections; fast-acting insulin with meals and a long-acting insulin.
 

Robert describes the course as ‘brilliant’. He now understands why and how to deal with diabetes problems and knows more about the range of apps and devices available.

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Age at interview: 21
Sex: Male
Age at diagnosis: 20
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It was a year after my diagnosis so about March this year I did Diabetes Training Course which I think is nationally DAFNE but my local one was called something different. It was called, [Name] I think it was but it’s the, it’s based on the same course. And that was really good because they took more time just going into more detail about your carb count and about what they recommend if you’re doing general exercise or if on one day you’re doing a really heavy amount of exercise how to correct your insulin doses or what you need to eat more of. For example just generally balancing exercise with insulin and carbs. It was really good in what they did on the training course. But then equally you’re in a room with about 5 or 6 other diabetics and just being able to sort of compare what each other’s do and so see what works for them, what might work for me or what works well for me I could pass knowledge on to someone else.

Ok did you feel more confident after that? 

Yeah It gave me a lot more knowledge. So for example I find the time that if I go low it will be mid-morning but I wouldn’t have known that. Before I did the training course I wouldn’t have known that your body reacts differently to insulin at different times of the day. So I know about, some people can be more sensitive in the morning and less sensitive in the evening which I believe is sort of how I am, less sensitive to insulin in the morning. And that is saying because the majority of my hypos if I ever have any will be mid-morning. So it, it was good to learn about, about that and therefore how you compensate it by using less insulin in the morning and more in the evening or afternoons for example. 

Any other information that has helped you manage?

So, the one that the, they gave the information about. I already had this knowledge but they gave information. It was carbs counting apps for your phone or books. Well books are a bit hard to carry around in day-to-day but an app for your phone is brilliant. I downloaded one. It was, I always refer to it as the best £2.50 I ever spent. Because I have [phhh] almost lived by the app and whatever I eat I’ll go straight on there. Look for it and, and find what I’ve eaten straight away. And it’s got to the point where you’re sort of. You’re so used to looking for things you sort of know roughly what each meal is going to be and you don’t need to use it as much anymore. You only use it for obscure things but yeah I live by this carb counting app. It’s absolutely brilliant just being able to have it on your phone and just swipe down, that’s what I want and compare portion size of what you’re eating. It’s absolutely brilliant.

Is there anything that you think is missing from the course something that you would think that would help?

[Sigh] So It was a 3-day course and I think they were very comprehensive on it. As I said, it wasn’t the DAFNE. It was a sister version of the DAFNE. But yeah I’d say it was brilliant. I wouldn’t say there’s much more they could fit in if anything. So it was good.

Did you have any expectations about the course before you went?

I wasn’t 100% sure what to expect. So I went with a pretty open mind and but then I thought it was a really good course afterwards. So it was well worth going on.

Would you recommend the course to others?

Oh definitely, definitely well worth going on. Just, even if you only pick up one or two things or a lot of people there had tried out a new blood glucose meter and took that home with them. And I know one guy got a much better meter than he did have and he absolutely loves it now. He was well happy with it. So yeah I’d say it’s definitely worth it.
 

Robert feels that the course provided him with information about new technologies and treatments and it gave him the chance to share his experience with others.

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Age at interview: 21
Sex: Male
Age at diagnosis: 20
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So the course was three days long. It wasn’t just about carbohydrate counting. It was about as I was saying earlier about all the different technologies that are available to help manage diabetes, about linking in with other people with diabetes and about all the different types of insulin. But obviously one of the major parts was carb counting. And they gave you different ways of counting portions. So if you are cooking a meal you can weigh it, X amount of rice that you are eating or you can weigh X amount of a curry sauce that you’ve eaten and then calculate the carbs that are in it based on either your carbs and cal book or app or the label on the back of products which are generally speaking really good. So they give you very clear, this many carbohydrates in the, per portion size or per 100 gms. That sort of take you through how you work that but, but for me the most powerful tool was an application on your phone, you type in what food you are having: lasagne for example. You see a picture and you compare the picture portion size on your phone to your plate and you think, that one. And then it tells exactly what carbohydrates are in it. And I found that just an absolute miracle tool. That was brilliant.

There was, there was other good stuff on the course as well that I liked quite a bit actually. And it was looking at alternative insulin treatments, what different insulins have different effects and different types of pump therapy, the type of devices where you can put a, put it onto your arm and scan it and all the different technologies that are out there as well what’s coming up. So it was really good to see what is currently available and what we think will be available in the future because that sort of shows that the leaps and bounds that they are making but equally there was a lady on our course who was, who had been diabetic for 56 years. So it was good to have her in the room because she sort of said, “This is how I used to do it when I was a kid.” And it showed the massive leaps and bounds that diabetes technology has made in that time. And it is good to see that from there where we are looking to go forward. So that was really good. I thought that was fantastic.
Training courses tend to be oversubscribed, and young people said that they had to wait up to a year to participate in one.
 

Linda felt that by the time she was offered a place in a DAFNE course she had already got the knowledge and confidence she needed to manage her diabetes.

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Age at interview: 24
Sex: Female
Age at diagnosis: 19
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When I was first diagnosed they talked about the Daphne courses and I would, you know, be put on the register but it was a very long waiting list and so by the time it came, it was kind of eight to ten months later that, you know, a spot became available and by that point I’d kind of, I felt like I knew what I was doing so it was like a bit irrelevant and potentially that was because I already had a solid basis in carbohydrate protein fats and those kinds of things so I didn’t feel like I needed to go and be told to eat like 20 grams of carbohydrates or whatever. But I guess yeh like from my point of view I felt I was doing fine. I’d got into my own routine so I didn’t feel like I really needed to go to a course to be told that.
 

Sophie’s consultant offered her the chance to go on a DAFNE course, but she didn’t get confirmation of being on the waiting list until recently, when she rang her nurse.

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Age at interview: 24
Sex: Female
Age at diagnosis: 12
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So last time I had my appointment which was in February now with this new doctor. She was, she was really good and I said to her at the time, “I really want to get it under control now.” “And I want to improve and get my diabetes under control, you know. I’m at that stage in my life I want to do that.” And she said, “Do, would you be. This is the first time that someone said to me, “Would you be interested in a pump?” And I said, “Yes I would.” And at that time my HbA1c was quite high which meant I would qualify for a pump. But you also in order to qualify for a pump they want you to try things like a DAFNE Course which is like a dose adjustment course and like teaches you how to carb count and adjust your doses accordingly. So at the time she said, “Let’s get you on the waiting list for that.” But I just don’t think that ever happened because I never heard anything. So this is why I rang up recently because I am still interested in trying a pump but I haven’t heard anything from, since February. So obviously it’s been quite a while now. So I just wanted to keep pushing it because otherwise if you don’t push it I guess you won’t, you won’t get it [laugh]. So

So you have rung?

Yeah probably about three or four times I’ve spoken to this nurse. So for example I am trying to get onto a DAFNE course at the moment which is like an eating course and I’ve rung her just last week to try and see the progress on that. And that was good. She sent me a letter through and put me on the waiting list.
Other diabetes education programmes are available at local levels. A few of the young people we talked to have taken part in various courses run by specialist nurses, dieticians, etc at their local hospitals including sessions on diabetes and driving, and insulin pump training.
 

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

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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. 
Lewis and his parents pointed out that at the national level, there are no official training courses for the under 18s along the lines of the DAFNE course. In their experience, children and parents receive support and information from their local hospitals.
 

Lewis’ parents feel that the locally organised training session was appropriate for newly diagnosed children but not for Lewis who is already self-managing his diabetes.

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Age at interview: 12
Sex: Male
Age at diagnosis: 4
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Is there anything available for the under 18s when it comes to?

Mother: Not officially. I think there was a trial going on somewhere in the country for making like the likes of DAFNE for under 18s but it’s not a national thing and it’s not. No. It’s just your individual teams that give the parents the support and some teams offer a bit more nutrition more awareness. It’s a. They don’t teach like carb counting do they? It’s like these have got carbs in these haven’t, sort of an education sort of basic on nut-, you know, there the eat well plate sort of.

Father: He did go to one session at one of his old hospitals but it was a bit too basic for his age. So they are trying to have the sort of a carb counting session for a wide range of children and it, it was. The age range was too spread.

Mother: No it wasn’t the age range. It maybe needed to be grouped into length of diagnosis.

Father: [mmm] Possibly.

Mother: Perhaps.

Father: I think there were some children there that had only recently been diagnosed as well. So for them it would have been fantastic because it was a good introduction but for Lewis who’d already been diagnosed 6 years by then and carb counting by himself for a couple of years it’s like well. He wasn’t really learning anything new there. In fact he was hel-, I suppose on the other hand he was providing peer support to the other children cos he was helping them, showing them, you know, this is, this is the way. This is how you do this.
 

Lewis talks about a peer led session organised by the psychology team at his diabetes clinic. Lewis wants to be a peer mentor.

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Age at interview: 12
Sex: Male
Age at diagnosis: 4
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Lewis: Well there was a thing I went to in [city] as well am I allowed to mention it do you reckon?
 
Yes you can mention that.
 
Lewis: Tree of Life which that was a lot of help as well cos that
 
Mother: That’s your psychological support isn’t it?
 
Lewis: Yeah and had to get over the bumps that you and hurdles that you need to over to succeed.
 
Mother: It’s that everyone goes through what you go through. It’s a shared, you know. Everyone does the same thing. You have to grow up with it.
 
Tell me a little bit more about that.
 
Lewis: The Tree of Life.
 
Yeah was it a course, it was a weekend event?
 
Lewis: It’s basically [clicks] only a few get picked isn’t it, like a few that have been chosen. Basic-, what it is, is it’s this big. It’s like a group that sit round in a circle and share what their experience has been, diabetes has been. And we do this thing called The tree of Fruits which is basically a big tree and we take it in turns to write different fruits about people like the good things, good personality things that they have in common which help, helps them to be a lot more confident. And also what you think life is like with diabetes and the Tree like the family tree and what, whose helped most and that sort of stuff and who you can turn to.
 
Ok
 
Lewis: It was really good.
 
And who organised this?
 
Mother: It was the psychology team and then they had two peer mentors they called them which were the older teams that were just about to transition into like, like older clinics. So they were there to support the younger ones.
 
Ok
 
Mother: It was good wasn’t it for you? I may have your tree somewhere in the back.
 
It was an event, a one-off event?
 
Lewis: It happens about once a year, every year doesn’t it?
 
Mother: You want to be a peer mentor don’t you so.
 
Lewis: Yeah
 
Mother: He’s going to be a peer mentor. It just takes them, next year it will be the training won’t it?
 
So you will go for training for that one?
 
Lewis: Yeah.
 
Ok and what will that mean? Will you be talking to young people your age or younger?
 
Lewis: It will be exactly the same except I’ll be on the one telling that, the people will be on the receiving end sort of. So I’ll be like helping out whereas before I was doing the activities whereas I’ll be helping organise the activities and give advice to other people, that sort of stuff.


Last reviewed December 2017.
Last updated December 2017.
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