Diabetes type 1 (young people)

What happens at the diabetes clinic?

There are certain things that you should expect from your medical team. If you have just been diagnosed with Type 1 diabetes you should have:

A full medical examination- this may also include a referral to a specialist eye clinic.
A talk with a diabetes care nurse who will explain what diabetes is and about your treatment.
Several sessions with your diabetes nurse for basic instruction on injection technique, looking after your insulin, blood glucose meter and pen, blood glucose testing and what the results of your own testing means.
You should also expect to have a discussion about hypoglycaemia (hypos) and how to deal with it.

After this initial help, you should have access to a diabetes care team where you will have the opportunity to talk to doctors, nurses and dieticians. They will assess your diabetes control and discuss any problems with you. You should also be given a contact number so that you are able to contact a member of the team for advice whenever you need it. Most diabetic clinics have a specialist nurse who will visit you at home between hospital appointments especially in the early days after your diagnosis.

Each year you are entitled to an Annual Review assessment by the diabetes care team.This should include a blood pressure check, a measurement of height and weight, drawing blood to find out your cholesterol level and your HbA1c (average blood glucose over the last few weeks), plus a urine test to check whether your kidneys are working well. They should also examine your feet and reflexes to check that your nerves are okay, and they may ask you whether you smoke and offer help to give up if you would like to do so.

In addition, the annual review should include an examination of your eyes, although this may be done at a specialist eye clinic. Drops will be put in your eyes so your pupils with get big enough for a photo to be taken (from outside your eye) of the retina at the back of your eyes. The drops will make your vision blurry and you will be sensitive to light for a few hours, so you should be careful not to arrange to drive after your eye appointment. The annual review is also an opportunity to discuss how your control of your diabetes is going and your home monitoring results.

Your clinic should keep you in touch with the latest advances in the management of diabetes and advise on patient education courses to help.

Experiences of care

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

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Age at interview: 19

Sex: Female

Age at diagnosis: 14

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Every 6 months we have the one, same morning appointments which are 3 hours long and you’ll spend some time with a consultant and then you’ll 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’t generally have any questions. But they’d often give you little leaflets or things like that booklets kind of with food ideas in it to make sure you’ve 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’d 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’d just go through everything in general and make sure you’ve got your right basal rates and you’re 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’d 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’d want to be really you’d kind of want to be below that but anything below, around 40 is just a bit too slow [ha ha]. So they, he’d 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’d go over things that you’d discussed with your doctor or GP if he needed to because obviously he’s a trained medical professional anyway. So he’d 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.

Talks about what happens at the clinic each time she goes for regular check-ups.

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Age at interview: 21

Sex: Female

Age at diagnosis: 15

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How often do you go and see the care team at the hospital?

Every, once every 6 months and when I go I'm generally there for a couple of hours. Lately it's started to be really quick. I used to be there for about 4 hours, just lots of waiting, seeing the dietician. You start off seeing the nurse and go and have your general tests done. They take your HbA1C or, I can't remember what it was called the big blood tests and weigh you and you do a urine sample and you do a little blood test and then you see the doctor and then I might have my eyes photographed and then I see, down to the nurse and sometimes I go and see the dietician. Someone might check my feet, do a thorough, thorough check. But I often go and see the nurse in between the'

So it is twice a year?

Hmm.

And the nurse you see more, more often?

Yeah. Generally. It depends. When I started off on this new insulin I'd be seeing her a lot. Now I probably see her every couple of months, every three months.

Talks about what happens during regular check-ups and at the annual review or MOT.

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Age at interview: 17

Sex: Male

Age at diagnosis: 11

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I'd usually call the mobile that they have on constantly 24-hours a day so yeah I'd call that or if it's not major and needs attention immediately then I'd just wait for my next clinic appointment. But yeah if there is something that really needed dealing with straight away then I'd call the mobile phone, yeah.

How often do you see them?

It varies, usually once every three or four months. I think currently it's a bit less because I'm in a new clinic. So I think it's once every three months at the moment.

What happens when you go to the clinic?

The first thing you do is you get weighed and your height is taken and your blood pressure as well. That's done by a nurse and then usually you'll see either the diabetes nurse or the doctor. And they do a run through of how you felt for the period of time that you've been away, anything new you've done, any problems you've had. They show you a height chart and your weight chart to show your progress. Yeah they'll deal with any problems and then they'll assess whether any changes need to be made to my regime or whatever I'm doing. Then they'll tell me that. And that's generally it I think.

How often do you have your eye tested?

That's once every year at my MOT clinic where the eye test is over and above what I'd normally have plus a blood test and urine samples. So those three things are once a year rather than once every three months at clinic.

How are your eyes examined?

It, they do a basic eye test as you would at any opticians plus they put drops in your eyes to open up your pupils and check for glu' something, I can't remember what it's called, glaucoma. There we go [laugh].

Yes the doctor does that with full body check as well so injection sites, I think in diabetes your extremities are more likely to have problems due to blood flow and things like that so they're always checked rigorously once every year. Although for me currently they're not very major problems but as I get older the problems will develop but it's always best to check now as well to pick up on things early.

So you have the MOT, it's the eyes, the'?

Eyes, blood test, urine samples, seeing the doctor, the nurse, the weighing, and the body check as well.

That's why they name it the MOT?

Yes [laugh]. The full works check [laugh].

Most of the young people we interviewed said that they had appointments with their diabetes care team every three or six months. One young man hasn't been seen at a diabetes clinic for almost three years. Many said that, as they learned to control their diabetes better, the nurse home visits became less frequent. Most were able to contact their specialist diabetes nurse in between appointments when they needed her/his advice. A few of the young people we talked to said that they have no access to a diabetes specialist nurse outside their visits to the diabetes clinic. One young woman was unhappy about seeing her diabetes care team only once a year. She said it was difficult to get to know her nurse because she has seen her only once in the past year and a half.

She is unhappy about her once a year appointment with her diabetes care team because as a...

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Age at interview: 19

Sex: Female

Age at diagnosis: 3

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And how do you feel on the whole with this sort of annual check-up appointments that you have every 12 months?

Personally I don't really find it's enough particularly because I'm still in nineteen I feel I'm still at the time in my life where my schedule from day to day, things like that, are all changing equally as much if not more so than when I was fourteen, fifteen. When you're moving between sort of education and work and that sort of thing, I think it's probably useful to have as much support as possible in fitting in with it all.

Can you call your diabetes nurse when you want or when you need her?

I can but the only difficulty is that now officially on paper I've switched over to a different healthcare unit again in the city where my university is, be it for a limited space of time and I've got a long history with my diabetes nurse back home. But I still don't feel I really know the local nurses here because I've only had one check-up. I don't remember what their names are. I've only seen them once.

And I've already been living here a year and half. More regular contact would've been useful for establishing more a relationship with them and feeling that I knew them enough to be able to just call them up spontaneously now and again.

He would like to have access to a health professional with specialist diabetes knowledge outside...

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Age at interview: 19

Sex: Male

Age at diagnosis: 13

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At the moment I think I'd just make it more available. I just think I'd, it would be great to have more help available, somebody that I could talk to. Somebody that would just be able to give me a bit more guidance, just a bit more advice and help.

How many nurses are there at the clinic when you go?

At the child clinic there was one nurse and as I say there was a dietician which I had met briefly but not really had any contact with.

And at the other, in the adult clinic?

At the adult clinic there was I think again one, it was somebody was there to kind of take my details and initially see me. Then I saw the, the doctor.

Can you contact her or anybody from that team in, if you have any concerns or in an emergency?

Not that they've made me aware of no, no.

So your port of call will be the GP?

Yeah.

What else do you think. So I mean you still need more information, more advice, more coaching?

Not necessarily. I just think it would be nice if it was there if I wanted it. And it's difficult for me to know what would help because I don't know what they would say which would be of benefit to me. But if there was somebody there that I could have a phone number for that would be great.

So going back what else do you think the NHS need to be doing for people like yourself, young people with diabetes?

I think they need to make sure that there's somebody always there that can be contacted who's got a substantial amount of knowledge about diabetes. If I go to the GP there's nobody there who's a diabetes specialist. The second time I was admitted to the local general hospital they certainly weren't diabetes specialists, any of them there. So that, that would be what would be good just to have access to somebody who was a diabetes specialist, somebody like the, the consultant that I see on a six-month basis but the only time I ever get to benefit from his advice is just on those six-monthly sessions which now after recent moves, the adult clinic seemed very short.

Sophie feels that it may be difficult for the doctors to provide the continuity of care patients want, due to issues like appointments cancellations.

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Age at interview: 24

Sex: Female

Age at diagnosis: 12

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So when I went in February you get weighed and you. I don’t think I saw a dietician this time. I think sometimes you do but I had about half an hour consultation with my doctor and in that she was really supportive and when I said I wanted to sort of take more control she was like, “Ok let’s do this.” And she was putting through the options of the pumps and talking about different pumps that I could go on and DAFNE and the courses. So she was very good. And I said as well like, “I’m looking to train for a half marathon. Can you help me with any advice for that?” And she said, “Yes.” Although actually I didn’t, I’ve done it now and I didn’t see her beforehand. So she was supportive but sometimes I think it’s hard because. So I was meant to have an appointment in August and it got cancelled and now it’s in March. It’s quite hard to give the care I think that your patients might want if you’re only seeing them once a year or once every six months. But she was lovely and it was, it was good when I was there. It was useful. I felt like she wanted to help me help myself. So that’s good. It was good.

Linda has found it difficult to see the diabetes team in the city she moved to. When she needs advice she goes to her GP, phones her former diabetes nurses or goes online.

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Age at interview: 24

Sex: Female

Age at diagnosis: 19

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Well for me at the moment because I've only been in [city] for about six months, I don’t actually have a specialist team here. And that’s through actually like no personal choice of my own I’ve tried to get onto the system in the hospital but apparently they’ve been going through a lot of staffing issues and I’ve very, I’ve struggled to get an appointment with the kind of, cos mainly the teams are made up of diabetic specialist nurses as opposed to doctors and it’s been very difficult to contact them, they do have some telephone numbers which I’ve left multiple messages on previously but they kind of have, at the moment I think they’re just struggling so I think, you know, they prioritise loads of different things which is fine. And so in that sense I don’t actually have someone I can just like call up. Whereas back in [city] cos I was there for a longer period of time I had some very good diabetic nurses that I had their personal telephone numbers, I felt very happy to call up any of their different numbers ask for advice, all those kind of things. So I think it’s got a lot to do with how long you’re in a place and, and yes so from that point of view cos l’ve not been here for that long I’ve not really embedded myself into the system and been seen by different people which I think can happen, so.

So if you have a problem you go to your GP?

Yes, yes well I go to my GP if it’s kind of like the last port of call for me it’s mainly online that I get kind of information and advice and support and those kinds of things and I’ve got quite a lot of diabetic friends now so, so I’ve always got someone I can text and like say 1. how they’re doing but also maybe if I need some advice or a little bit of encouragement or whatever. But yeh if it's actually going to be medically related then yeh it would be my GP I’d go to first.

Okay and how do you feel being in a new city and not having a care team in place? How long have you been here?

Six months. I don’t feel great about it to be honest. In the sense of I’ve had, there’s been an appointment that I was invited to but that’s not until the end of March and it’s kind of like I think they’re just, they’re going through a bit of a tough time where people are kind of slipping through the system which think is, you know, it’s understandable but also a shame at the same time because I’m sure they’ll be kind of worse off people than me that need help kind of a bit more rapidly but I think it’s something that potentially that, you know would get better the longer that you are in a place. So I’m not, you know, I’m not like oh you need to give mean appointment [laughter] you know, I’m not hounding them which maybe some people would, I’m not sure.

All of the young people we interviewed said that they had an annual review that included all the tests and examinations listed above. The urine test is to check for early signs of damage to the kidneys which mean that they leak small amounts of protein into the urine, but some people didn't know what the urine test was for. Some hadn't had certain tests or examinations done for some time. One young woman hadn't had an eye examination in the last three years because she felt her eyes were fine. Some people go to their GP for feet and legs examinations. All these tests and examinations help to detect early signs of complications so they can be treated and managed as soon as possible.

A urine test done at the diabetic clinic had traces of protein in it. This lead to further...

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Age at interview: 17

Sex: Female

Age at diagnosis: 12

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I can't remember, but when I was diagnosed with diabetes, they found - well they thought it was blood, but it was protein, in the urine. They didn't look too much into it, and there's - I don't even know why they suspected it, but then they checked again, and the protein had gone up since the few years ago that I got diagnosed. So they were just like curious, and just did more tests and it developed on from there. So they sort of backtracked, and said why was that there?

So, yeah, they did a urine test? When you went to see them at the clinic?

Mm.

So that prompted them to investigate why there was protein in the urine?

Yeah.

Which other type of test they did?

They did blood tests, for all sorts, I think. They did a general check. They did that the other day as well. They just checked everything and, like, anything you can think of. They just wanted to make sure I'm okay. I mean I suppose the more you test the more things you find wrong, which is bad, but as long as you get them sorted in the end, then it's going to help you later on.

So they did that, and they found the coeliac and at the same time they were - they found you had a kidney problem?

Yeah, and then they gave me an appointment, at [name] Hospital, to go have an endoscopy, or something, when they put the tube down your throat?

And then I had - they took a sample of my kidney, to see what was going on there. So I had both of those at the same time, like in - I had the operation on my kidney, and then - where they took a bit out, and they did the throat thing at the same time.

And what they found out?

Yeah, they found out that I had - my protein creatinin levels that are up? I think it's just my kidney deteriorating. I don't know, not processing stuff properly. I don't really have much knowledge of what's going on with my kidneys. But I just know that taking blood pressure tablets - the Lanopril stops it being so - gets worse - hopefully stops it from getting worse.

Describes an eye examination and indicates that the last time she had one done at her hospital...

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Age at interview: 19

Sex: Female

Age at diagnosis: 3

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It's best you go and have them checked [clears throat] about once a year but for some reason, I haven't had it checked. They haven't tested them because I've not had a proper eye test for about three years but my eyes are fine, I can see perfectly.

There is supposed to be an appointment for that, I'm supposed to have it every time I have my annual review but I haven't for some reason.

It's just like going to see your normal optician where they sit you down in the chair, they they let you read off the board with the numbers on, the letters sorry and then they stick this stuff in your eye which makes your pupils widen and then they ask you to sit down for half an hour and then someone else calls you in and they use this machine to check your eyes in your eyes, around the eyes, see if there's anything there and then after that's done, you [sighs] you possibly might need somebody with you because your eyes go blurry, you can't see very well after that [laughs] and it takes a couple of hours before your pupils get down to normal so you look like this really monstery [laughs] not really, you couldn't really see my eyes because they're dark brown but if you had blue eyes then you'd probably look quite scary.

Explains how the nerves and blood vessels of her feet are checked.

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Age at interview: 22

Sex: Female

Age at diagnosis: 9

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How often do you go to see the consultant?

Every six months

Every six months and what happens when you go to see them?

It's quite easy I went yesterday [Laughs]. My MOT as I call it and I went in yesterday it wasn't the full' I didn't get my eyes photographs because it was done the previous and walked in and the nurse, she did my blood pressure, weighed me, when I was younger they took my height as well to see if I was growing and did a urine test. Sat me down to see my consultant and he always ask, 'Any hypos? Any big hypos?' and then talk about what is going on in life. He would then say 'I've got your big blood test', because before you go to clinic, about a week, two weeks you go and get a blood test in your arm to test your overall reading. Then, he would do the buzzing test on your feet to make sure they are okay. Yeah, that's it really.

The test in your feet what does he actually do?

Yeah, well he told me to clinch my fist and he got the machine, it looks like, you know the thermometer they put in your ears, well it looks like that, long and thin and like a white thing on the end. Close you fist and it touched it and he said 'tell me when it's the buzzing' and I say yes now. And then he tests your toes, along each toe and along the sole of our feet, then you put your foot on the floor and tested the pulse in your wrist and he said to me, 'This is weird I can feel the pulse better in your foot than I can in your wrist', and they he had a poking pole, a long thin plastic and he touched the bottom of my foot and he said, 'Every time you feel say yes,' and I went yes, yes, yes and then he went all over my foot.

Sophie was worried about her last retinopathy test’s result and thinks it’s important to stress the dangers of high blood sugars.

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Age at interview: 24

Sex: Female

Age at diagnosis: 12

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So last year just before I went away I had retinopathy examinations for my eyes every year. And they’ve always been fine and for the first time I got a letter saying you have the first signs of the first stages. And I was quite shocked because I just had always been fine and didn’t really think anything of it. And again that also shook me up because I just thought, ok I need to, I need to control this. I don’t want to damage my eyesight. And again on social media I’ve met a lot of people who have, who are a lot older than me and who have got damaged eye sights and they’re controlling it better now but it’s almost not too late but you want to do that before you, you damage your eyesight or your nerves in your feet or whatever.

I think it is important to stress that because, you know, otherwise you’re not. In a day-to-day basis ok having high blood sugar makes you feel a bit lethargic and a bit rubbish but it doesn’t stop you from doing anything. So you don’t really think much of it. Whereas if you have like a hypo it, you do feel faint and you feel shaky and you feel horrible so that does sort of stop you. So I think it’s important to stress the implication of high blood sugars as well because even though in that moment they may not be affecting you too badly it’s the build-up over the time that they are damaging you quite severely I guess and it’s important to I guess understand.

Before diagnosis he was having problems with his vision but didn't know it was because of...

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Before diagnosis he was having problems with his vision but didn't know it was because of...

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Age at interview: 26

Sex: Male

Age at diagnosis: 18

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How often do you have an HbA1c test?

It's every time I go to the consultant. So it's every four to six months, or something like that.

What else happens when you go to, to see your consultant?

They, well, they check my weight and that kind of thing, and blood pressure. And quite often they'll check my eyes as well, and check if I've got, check I've still got feeling in my feet and that kind of thing. And all of those have been fine so far, touch wood and all that.

You just told me you had, you said before diagnosis you had some eyesight problems?

Yes, it's apparently the, if you get too much sugar in your eyeball it can kind of affect your vision. So you might find that you need stronger glasses or something like that and your eyesight can go a bit funny as a result of that, of that. Because apparently according to my optician at the time it's quite common. But it was one of those things that I didn't know was related to diabetes at the time, so I kind of didn't put two and two together and all that kind of thing.

And have you had your eyes photographed?

I don't know if they've been photographed, but the, the consultant does kind of do the thing where, you know, they dilate the pupils and check the back of your eyes and all that kind of thing. So he does that kind of fairly regularly.

Who do you see when you go? How many people?

At the moment I normally just see the various nurses that are kind of doing the tests to start with, before I see a consultant. Then just a consultant afterwards. But before, I remember when I started off I must have seen dieticians and specialist nurses and all that kind of thing pretty much every time I went. So there was kind of three or four people I'd see at a time. But now it's just pretty much down to the people doing the blood tests and stuff, and then the consultant. And then if he thinks there's anyone else I should see, I go and see them, kind of passes me on. But that's not really been necessary in recent months.

Note: If you want to find out more about what standards of care to expect please refer to the National Service Framework (NSF) for Diabetes produced by the Departments of Health in England, Northern Ireland, Wales and Scotland.

Young people should be able to collect the following supplies from their clinic: finger pricking device, monitoring diary, insulin pen injector, blood glucose meter (if available). And from their GP on prescription: lancets for finger pricking devices, blood glucose test strips, strips to test urine for glucose and ketones, disposable insulin syringes, insulin, glucagon's (GlucaGen Kit), glucose gels such as Glucogel or Dextrogel, needle clipper, pen injector needles and some insulin pens.

Last reviewed December 2017.

Last updated December 2017.