Interview 13

Age at interview: 19

Age at diagnosis: 13

Brief Outline: Diagnosed in 2000 and initially his insulin regimen consisted of Lantus and NovoRapid. He found it difficult to manage his diabetes and his blood sugar levels fluctuated a lot between high and low. In retrospect says that he would have benefited from more one-to-one advice and guidance from a diabetes nurse or other specialist. He now has an Insulin Pump and says that his control has improved substantially. For him, managing diabetes well comes down to experience and having the necessary support and information.

Background: Lives with parents and siblings and works part-time in the IT industry. Despite his symptoms, it took six months for the GP to diagnose his diabetes. The doctor kept telling him that it was stress.

He felt thirsty for six months, lost lots of weight and felt very tired but says that at first...

Ok how old were you when you were diagnosed with having diabetes?

I was thirteen.

What type of signs and symptoms did you have?

I was very thirsty. I had lost a lot of weight. And I felt very, very tired all the time and I really didn't feel as though I was up to doing anything, you know. I just wanted to be in bed or just sit on the sofa and not go out. And that probably lasted for about six months. Going to the doctor quite regularly but they didn't actually pick it up until one of the later visits where they did a, a urine test. And that's when they knew I was diabetic. And they, he telephoned us and basically said sort of pack your things and go get ready to go to the hospital. 

And that night me and my dad went to the hospital. And I was in there for about a week or so while they were obviously monitoring my blood sugar very regularly, sort of eight times a day, taking urine samples, and I felt a lot better very quickly.

And during those six months that you, that you kept going to the doctor what was the doctor's response and what were they saying to you?

They, I think they put it down to stress or something, something like that, and I think we were presenting with all the symptoms. We certainly let them know that I was very thirsty and they could see that I was obviously very, very skinny for my age. Unfortunately they just, they just missed it on quite a few occasions but I went to see a different, it was actually a different doctor's surgery and they picked it up on the first visit there. Did a urine test and then they said, 'Yeah it definitely is diabetes'.

What would you advise other young people that might have similar signs or symptoms like that?

I think if you think you've got diabetes bring it up with your doctor and say could it be diabetes? Because it may just be [sigh] they've had a hard day and they're not putting two and two together properly. If you bring it up and say is it diabetes, you know, if you really think it is say, 'Test me for it'. It's not difficult to test for at all.

A simple urine test can'?

A urine test will tell you definitely or I mean even a blood sugar test like I've just done would if it's very high it's going to tell you straight away it's diabetes.
 

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

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.

He's recently moved to an adult diabetic clinic & feels they don't know him, don't take an...

Have you moved hospitals recently or just before the pump was suggested to you?

I had a contact with a different nurse with the pump but I've also recently moved to the adult diabetic clinic from the children's diabetic clinic. And I've had two appointments with that clinic at a different hospital. And I've found so far that the sort of experience of that is nowhere near as helpful as it was at the children's clinic.

In which terms can you elaborate more?

I mean I got on well with my previous consultant and I just found that the doctor that I had with the adult clinic first of all I didn't see him for anywhere near as long as I would have been able to speak to my previous consultant. You, you'd go into the room and there'd be somebody else there that would take all your details and have a quick talk to you. Then it seemed like doctor would just pop in for a few minutes and you get five minutes or so and then he'd be off. And I didn't, haven't found it anywhere near as useful as with the previous consultant. And obviously what I really like about the time with him is that he pushed for the insulin pump before I actually moved to the adult clinic. So I was very grateful that he that he got all that sorted out because it wasn't as simple as just, if you wanted an insulin pump you could have one. I'd known that I'd been interested in the insulin pump for maybe a year or so beforehand. 

So with your previous consultant there was more time for consultation?

Yeah.

And he already knew you for several years?

Yeah.

So now one of the problems with the new team that you are being looked after is that there is a lack of time for consultation?

Yeah.

Or very little time?

Yeah.

Can you explain more in terms of sort of if there are differences between the children's clinic and the young adult, and the adult clinic in terms of communication?

There's no big difference in terms of just communicating with the doctor. I can still talk to him the same kind of way I talked to my previous consultant. But it just doesn't. I mean it almost just doesn't feel as friendly. And it's just, he's, he would kind of prompt me, the previous consultant but the new guy didn't seem to be as forthcoming with'

He doesn't ask questions?

Yeah that's kind of the way it, yeah.

So basically it is how have you been or things like that?

Yeah, yeah it would be sort of something basic like that but not as in depth. And it get, it comes down to time I think, he, not to really get talking about it. Also I would be able to communicate with my children's diabetes team. I had a, you know, a mobile telephone number for them which I could call at any time even over the weekends I could get through to one of them as one of them would have it. But I've got nothing like that with the new adult clinic. The only time I've got contact is when I go in for the six-monthly appointments. 

And the adults clinic is not a young adults clinic. It's an adults clinic?

Yes. It's an adults clinic, yeah. 

For about four years he was having difficulties controlling his blood glucose level.

Since I've moved on to an insulin pump from syringes I've had much better control of blood sugars so I've been less inclined to think I really need to go out and find some more information.

Let's talk about blood sugar controls before the insulin pump?

Yeah. Sure. It was really rather bad. It was fluctuating high and low quite regularly and I was really feeling the effects of it. I felt awful when I was low and then generally what I would do was have far too much sweet stuff and sugar because I was, didn't want to be low. And then obviously there was kind of a rebound to being very high. And I still get the sort of symptoms of being high now which I did then which were headaches, I really noticed that my eyesight deteriorates when my blood sugar is particularly high. And you, you just, just feel it.

When you said you felt awful when your sugar levels went down, how did you feel?

Shaky, sweaty, irritable, just not myself at all. You kind of felt a bit floaty. It, you kind of felt a bit not really in the real world.

And when your sugar levels went up?

You kind of, you got sort of neck aches and stiffness in your shoulders and. I suppose it, it could well be different for different people but that's the sort of thing that I noticed. And I got to know my sort of tell-tale signs of when I was high and low quite well. So I suppose that was a good thing. I would know without having to do a blood test whether it was because I was too low or too high that I felt bad.

Were there instances in which you had to go to the hospital?

From low blood sugar no. I never actually had to be admitted to hospital for that.

And for high?

Yes. I had one return visit to the hospital after I was first diagnosed. It was probably about six or twelve months after being diagnosed I was back in hospital for another week because I was suffering so badly of being high that I was admitted again.

I felt comfortable doing the actual injection. It wasn't that I was scared of the syringe or that part of it. It was that, scared of the insulin, having too much insulin, the hypoglycaemia.

That was for four years that was your main concern would you say?

[Sigh] It probably. If I'd have known with more confidence that I could have done more insulin, had better blood sugars then I would have done but it just seemed that I could never get that dosage exactly right. So it would either be too much or too little and I'd rather do too little to be high and then correct it down later than to have hypoglycaemia and then have to sort of risk rebounding back up to being high again.

How did you find out about the insulin pump? Who suggested it to you or?

I can't remember.

You read about it?

Initially who it was. Before I got it, it was mentioned at the diabetes, consultant probably quite a while previously. But after I'd first heard about where ever that was I had looked on the Internet and spoken to people about, about the pump. But then I was bringing it up with my consultant at every appointment saying this is going to be a good thing for me.

Describes getting used to wearing his pump, inserting a new cannula and working out the...

So who has given you advice for instance on carbohydrate counting?

Carbohydrate counting I've only had advice on since the pump. That wasn't brought up before then. But since the pump it was the, new diabetes nurse that I had to help me with the pump and I had very good support from her. You know, she'd sort of telephone in once a day for the first few weeks of having the pump. But again that's got a lot less now. I've not, not spoken to the same nurse for probably about six months since I've. You know in the last six months since I had the pump.

And now do you feel more confident?

Yeah. Now I will be, try and be quite accurate about counting the carbohydrate and occasionally I'll go back to weighing it so I know I'm getting an accurate. Just to kind of refresh myself on what, what is the accurate amount of carbohydrate in it. And I'm putting in much more accurate estimates of the carbohydrate that is there and if you're confident that your ratio is put into the pump correctly then it can give you really good blood sugars if you really stick to it very carefully.

Well the main thing is it's there all the time pretty much. You sleep with it. I'd normally do exercise with it. The only time that I'd really disconnect it from myself is having a bath or shower because although you can get it quite damp it's not meant to be completely submerged in water. So you gradually get used to having it there and where in your pockets you can put it and what clothes it's easy to wear. And sleeping with it you get used to having this thing that you kind of roll onto and you have a bit of a lump under you. But you get used to it and you get used to how you put it on you. 

The most difficult thing to get used to and learn about it was actually changing the set itself. So you've got a canula and you need to fire it in, into yourself with a spring-loaded little tool that they give you and then prime it and then do all that sort of side of it. And I was lucky in that I had somebody that would come round to the house and show me how to do that on a couple of occasions. But even so when they weren't there you would, you, you'd struggle and think have I done this right? Have I got the needle in the right place? What have you. But it's been worth it because it's helped me control the blood sugar so much better.

The other thing with it is giving the right amount of insulin with it and the way a pump works that it gives you two different types of dosages. Although it's constantly using the same fast-acting insulin you have a background rate, they call a basal rate, and a bolus dosage when you have any carbohydrate. So you get used to looking at a bunch of. Once you've set your basal rate which in my case they've helped me do and I've not I've not altered it since I've had the pump. You get used to looking at a plate of food, totting up in your head how much carbohydrate is there. Then you tell the pump how much carbohydrate you're having and it works out how much insulin you need for that carbohydrate based on what you've told it. How much insulin you need for the carbohydrate. So they work out a, an insulin to carbohydrate ratio and that's what you programme into the pump so it knows how much insulin to give you.
 

He preferred to have his blood glucose levels a bit high when he was by himself because he was...

And for the first maybe year I did find it really difficult to keep under control. It was very very changeable. It was swinging from very low to very high quite a few times a day sometimes. And obviously since then it's just been you get to know your body better and you know how doing exercise, eating food and doing insulin all, all works together. Then gradually since being diagnosed I've got better at that.

And why do you think you found it difficult to start with? Was sort of this', the managing of diet, insulin, lifestyle?

It was just. I think it comes down to experience more than anything else. Knowing the sorts of amounts of insulin that you want to do. I think to start with I was quite scared of doing too much insulin so I was doing quite regular small doses but that obviously still left me with quite high blood sugars. So I still didn't feel great at the time.

Why were you scared to give yourself more insulin?

Because I always think, at that time I was much more scared of having hypoglycaemia than I was of having the high blood sugars. And also if I was out when my parents weren't around or when people weren't necessarily so aware of the diabetes I'd much rather be a bit high than being low and then risk, you know, risk the consequence of having a very low blood sugar.
 

A welfare officer went to his home to find out why he was not attending school. After his...

Tell me about school life after you were diagnosed and you were having to take insulin, having to inject insulin?

Well before I was diagnosed my school life was really suffering. So the six months before I was barely attending because I just felt so ill I just, just didn't go. Then in fact the way the diabetes testing was prompted was actually that the school sent out somebody called an educational welfare officer because they were so worried I wasn't going to school. And it was actually that woman I think that first picked up that it could be diabetes. And she said go to a different doctor and get them to test you for diabetes. So actually it was, thinking about it, it was probably her that diagnosed me as diabetic rather than the doctors.

And what happened after that?

After that I didn't get back into the swing of school particularly quickly because I hadn't been there for such a while it felt a bit difficult going back. And I certainly didn't feel anything like well straight away after being diagnosed. But after about six months or so I was back at school fairly regularly. And it was. The school were good. They would say if there's something you want please tell us but they still couldn't for instance provide me with a place to go and do my injections. So it would be a case of just trying to do it when nobody is around really or going to the toilets and doing it in a cubicle there which isn't very hygienic for one thing. So it was difficult at school. After the first few months I was happy doing blood tests. Right at the beginning I would, I'd be not wanting to do that, you know in front of people. But certainly now I've got no worries about doing a blood test wherever I am. If I need to do it I'll just do it.

The one thing which wasn't very good was I, there would be people at the school that would know. For instance we let the head of year know at the school but the teachers I found out didn't know because I didn't speak to them personally. And I actually was under the impression that they knew that I was diabetic but sometimes, you know, if my certainly if my attendance hadn't been very good because I'd been ill for a week with the diabetes being bad they would. This is when I knew one of them, I realised one of them didn't know I was diabetic. They said you know, why are you off so much [name] I told them I was diabetic and they'd be very surprised. So it would have been really good if I'd have made sure if the head of year had made sure that actually all my teachers knew that I was diabetic.

So you thought that the head of year would tell them?

That's what I thought, yeah I thought all my teachers would know but very few of them did. So it would have been. It would just be nice for me to know that they knew.

So they could, you know, if I wasn't feeling well or if in class you know I wanted to go out of class I'd feel a bit more comfortable about knowing that they would know why it was.