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.
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.
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?
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.
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].
She is unhappy about her once a year appointment with her diabetes care team because as a...
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...
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?
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.
A urine test done at the diabetic clinic had traces of protein in it. This lead to further...
So, yeah, they did a urine test? When you went to see them at the clinic?
So that prompted them to investigate why there was protein in the urine?
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...
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.
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.
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.