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Diabetes type 1 (young people)

Being diagnosed with Type 1 diabetes in hospital

Most of the young people we talked to spent some time in hospital while the diagnosis was being confirmed and their blood glucose levels stabilised. The normal glucose level in the blood before meals ranges between 4 - 7 per cent (20-53 mmol/mol)* but many of the young people we talked to were admitted into hospital with very high levels above 20 (195 mmol/mol)​ or 30 (304 mmol/mol). The length of time spent in hospital varied from a few days to a couple of weeks.

 

She describes being in hospital, her high blood glucose levels and what it was like to be given...

She describes being in hospital, her high blood glucose levels and what it was like to be given...

Age at interview: 18
Sex: Female
Age at diagnosis: 18
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I was in there for about an hour in that room and then I got taken up to a different part of the hospital where there was other patients but it was a ward like an emergency sort of ward. So there was only like six patients there. And I was on a bed and stuff. And then they put me on the drip, and on an insulin. They didn't inject insulin into me they just. It was like on this machine where the drip was.

On a drip?

Yeah.

And the insulin was going in through there as well. Because when I first came into the hospital my sugar level was 27 and it's meant to be between four and seven. So it was very high. I stayed in hospital for around four days. I then, later on that day I got moved to a different ward which was like just a diabetic ward. And I stayed there for a few days. And then I had a dietician come in to talk to me and I had several consultants and nurses come in to speak to me. 

Can you explain in a little bit more detail how they gave you the insulin?

Yeah. They put a needle like in my arm but firstly they done lots of blood tests as well and stuff in the meantime. But the insulin they put a drip in my arm and then there was this machine underneath the drip and it was like a big sort of plastic needle with white liquid which was the insulin. And that was going through another tube but it was all connected to my arm and I think that was the insulin that was being put into my body.

Were they explaining to you what they were doing at the time?

They weren't very communicative really at the hospital. I didn't find very, I had to ask most of the questions. They didn't, a lot of times they didn't really tell me what was going on and stuff.

So you remember what type of questions you asked?

Yeah I just said basically what they were doing. They said they were putting insulin on there. And then after a while I'd have to start taking the insulin by myself, injecting myself, in my belly and on my legs and stuff.

Many young people attended an A&E department as soon as their diabetes was diagnosed and were admitted to either a children's or an adult ward. Most of the young people we talked to said that their hospital stay was fine, that everybody had been really helpful and supportive and explained things to them clearly. Young people think that easy-to-understand explanations are really important at this stage. They remembered having to have lots of blood tests to find out their blood glucose levels before being given any insulin.
 

Robert arrived at A&E and had to wait two days for confirmation of his diagnosis. He was very impressed with the care he received while in hospital

Robert arrived at A&E and had to wait two days for confirmation of his diagnosis. He was very impressed with the care he received while in hospital

Age at interview: 21
Sex: Male
Age at diagnosis: 20
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We went to A&E and I got. Well it was a bit of a wait. I think it was about, after my initial blood sugar test probably about 2 hours until I saw a doctor again. They did a ketones test, a blood sugar test and my blood sugar was still like 25. And then they admitted me to the ward for the weekend. Well at that point I was told it was just to go see a nurse to get my insulin but it turned out that it was the full weekend I was in the ward which was delightful. 

So I spent Friday night giving blood samples left, right and centre. And then for the rest of the two, all day, well all night Friday night, all day Saturday and all day Sunday until I saw the dietician on Monday. It was blood sugar tests every hour all the way through the night. Blood pressure tests about every two hours and every single time they tested my blood sugar they’d check the drip I was on because I was on intravenous insulin and fluids to bring my blood sugar down. So they were checking that they were on the right ratio of fluids, salts and sugars being put into my system. So it was a lot to take in all of a sudden when you’re, you didn’t feel too bad just dehydrated and tired. And all of a sudden you’re in hospital on a massive drip. The nurses are looking at you in a funny way going, “Are you alright?” And I’m like, “Yeah I’ve just got used to it.” But yeah it was, it was a long, long two days.

And then they went through what were the implications and I never really had like a sudden dawning moment of what it was because it was. I suppose because of my age as a 20-year-old it’s a bit easier to take than someone who is 8, 9, 10 something like that. [background chatter] So I didn’t really have that dawning moment which was very lucky. It sort of just. You got used to it in a way of, difficult sort of to describe is you, you’re there. You see day to day living, you sort of get used to little bits of it at a time. It’s a bit overwhelming when they give you all your insulin, your blood tester, your, tell you you’ve got to come in every six months for check-ups. You’ve got to come in to get your repeat prescriptions and tell you everything you’ve got to do. It’s a bit of a massive overload of realising how much you’ve got to keep on top of but I never felt out of control. I was like alright we can do this and tried to be quite level-headed.

So you went to, so because you were in hospital they were able to provide you with all the information and your kits and everything?

So, yes, so I would take my hat off to the [Hospital] because the nurses through the shift they were amazing. Don’t know how they keep going through the middle of the night. But then the dieticians themselves they were ex-, exceptional. Took, took a lot of time to explain what diabetes was, the issues that they are trying to resolve by giving me insulin and how insulin works. They gave me an option. They said, “Look if you don’t want to go straight on to the full dose of insulin we can put you on like an interim stage to build you up slowly. And then, yeah they were, they were very good. And they gave me my blood tester there and then, explained how to use it and yeah it was. It were very good. How they did it. I were very impressed.
 

He says that being given good information in hospital was very important because it helped him...

He says that being given good information in hospital was very important because it helped him...

Age at interview: 20
Sex: Male
Age at diagnosis: 10
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Do you remember what they did to you in hospital?

No, well I, I remember you know they tested my blood in the middle of the night, all this kind of stuff, a lot more testing. And I had blood tests done initially probably blood tests. And obviously they did my injections in the hospital for me before I'd learnt how to do it myself. Taught me about the background of diabetes. You know, what's actually not working. Why I'm having to take the injections so I understand it myself because I think that's really important. If people are educated in it they're going to understand what's wrong with them a lot more and how to, how to look after themselves so they don't have to rely on other people. 

I think I, you know just accept that. I'd rather, far rather just get on with it and you know as I said, once I started to understand sort of being educated behind it and knowing why, what wasn't working and why kind of thing. I think it's just far easier then to accept it and just to get on with it. 

Yeah I, you know I think I was educated quite well about it by the the staff at the hospital. And you know it's nice even when I go back now ten years after they all still remember my name, I still know their name and you know you build up quite a good rapport with the people who are looking after you so.

 

Everything was explained really well to him in hospital and though nobody expected him to do his...

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Everything was explained really well to him in hospital and though nobody expected him to do his...

Age at interview: 17
Sex: Male
Age at diagnosis: 11
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At the time obviously it was a big shock to me but before I was diagnosed I hadn't been feeling right to be honest for probably about 8 months. I'd been tired. I'd been extremely thirsty all the time and probably six or seven months in I went to the doctor and I think he did a blood test. And I wasn't actually told by my mother as soon as she got the results and. She left it until after my exams and came in and told me then that I had diabetes and was going to hospital. And I didn't really know 100% what it was all about then. So it was shock to me but as soon as I got to hospital actually I was calm about it. I was ok. 

Everything was explained really well. There wasn't really anything that was left open that I was frightened about or was apprehensive about. And so it, it wasn't as big a jump as one might imagine it might be. It was a reasonably smooth transition from this period of not knowing anything at school to going into hospital, finding this out. And I was surprised at only spending three days in hospital to be honest. I thought that was quite a short amount of time which I, again I was pleased about. I went straight back to school the next week.

Well straight away the practice nurse was the person that explained everything to me. She explained all about the condition. She was really nice actually and she stayed with me for the period of time I was in [city], in hospital. And from the beginning I was reluctant to let anyone else sort of take over what I was doing and give me injections or test my blood sugars because I thought I'm eleven years old. And actually I've got to start doing it myself sometime so I might as well start straight from the beginning doing everything myself so that there wouldn't be a period of time later on that I'd have to make the shift and I would have to do it myself later on. No one really forced me of course to inject myself straight away. No one suggested that it would be better for someone else to do it. It was left completely down to me which I thought was the best decision. And I think I made the best decision at the time. 
 
 

She felt she couldn't absorb all the information she was given by staff on the children's ward...

She felt she couldn't absorb all the information she was given by staff on the children's ward...

Age at interview: 21
Sex: Female
Age at diagnosis: 15
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And then I went into the children's ward and I, the diabetes specialist came and saw me and then that's where I was told everything. So it was quite a long time before I was really told what was wrong with me and the school had been trying to phone my parents but they were both away and so my housemistress, who was an awful woman, came came to mother me but that was the worst [laughs] thing I could have had, because I hated her. 

So it was quite scary at first but the nurses in the hospital were great and [uh] when my parents got there they told me I had, I stayed the night in hospital and I saw the dietician and the nurses and the doctors and they tried to explain everything. 

How much were you taking in at that point?

I don't know, I think, I took in quite a bit but obviously not everything. Some things were quite a muddle and I remember being really unsure still the next week what I could eat and what I couldn't, I guess, yeah.

Being put on an adult diabetes ward

Sometimes, diabetes can lead to complications, and some young people were upset by seeing people with complications of diabetes having to have surgical treatment - one 18 year old woman recently diagnosed told us she would have preferred to be treated on a young people's ward.

 

Remembers how upset she was on the adult ward when she realised that an older patient had had her...

Remembers how upset she was on the adult ward when she realised that an older patient had had her...

Age at interview: 18
Sex: Female
Age at diagnosis: 18
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They said I could, you know, get heart, heart problems and problems with seeing things and stuff. And yeah.

That scared you?

Yes it scared me quite a lot especially when I was at the hospital because there was this other patient I think she was bit by a mosquito on her leg and where it got infected and stuff they had to cut her leg off. And yeah that sort of scared me a bit. And then there was another patient she didn't have one toe obviously because she probably hurt it and when you've got diabetes it takes such a long time to heal that they had to cut it off as well.

So basically you were in an adult ward?

Yeah. Well it was a big ward but I was at the end and it was all like older people. It was all people over 50 so they were all quite, you know, unwell so it was very shocking going straight into that seeing what would happen to me in the future? What could happen. I think I should have been put, you know, on maybe a children's, not a children's ward but a more teenage ward because it was quite scary seeing that. And that's why I think I got even more upset about the whole thing because I saw how other people were looking and that could happen to me if I don't look after myself and stuff.

If I'm just going there for appointments it doesn't bother me. It's if I'm actually staying in hospital. I think when you get in it's a very big shock to see all those old people like that. I think they should have places for younger people with diabetes.
 
Communication with doctors and nurses

Most young people thought that the nurses were great and that they did their best to make staying in hospital a positive experience. Some remember that hospital nurses started the teaching process of managing diabetes such as showing them how to do injections and finger pricking. Many praised nurses for their support, friendliness and patience, but a few said they had found it difficult to get nurses to communicate with them and didn't like having to ask questions to find things out. Several people felt that nurses on different shifts didn't always communicate that well with each other. Some found doctors gave good support and explained things well, but others didn't appreciate being ignored or overlooked while doctors talked to their parents. (See also 'What makes a good consultation with the care team'.)

 

She praises the nurses but found that doctors talked to her parents rather than her and felt that...

She praises the nurses but found that doctors talked to her parents rather than her and felt that...

Age at interview: 22
Sex: Female
Age at diagnosis: 9
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I don't really remember that much to begin with because yeah I was just in bed and not feeling great. But I was seriously upset I think and yeah initially I was like, oh that's X thousand injections a year or per decade and how many in a lifetime and sort of worked it out like that. But the nurses in hospital were great. They were always really like, well you know you can do this, that and the other and it's all like, don't quit doing anything. It's your life. The doctors were less good. They more talked to my parents than to me and as a nine-year-old that used to drive me up the wall because you, you're old enough to know that you want to know what they're talking about. 

But then after ten days they let me out of hospital. You had to have injected yourself twice and your parents had to inject, have injected you twice first so that took ten days which I think is quite a long time but eventually I got out. And then I was back in and out of hospital and then weekly and so on. But I, yeah I didn't really have much to do with my doctor. I mean I'd see him but it was the nurse, my diabetes nurse who was really helpful and who was great and who would come around to the house and you know if you phoned and said I don't understand something she'd explain it to you. And so it was her that really was the one that helped. 

I think the explanation initially was kind of not scientific enough. I mean I've been interested in science all my life so I was wanting to know how it worked and. They talked about a train that was insulin and the sugar on the carriages being what the insulin, or being the sugar in your blood and then you needed the fuel which was, no the fuel would have been the insulin so it let you absorb the sugar kind of thing which just didn't help me in the slightest. But you know they had all these videos and posters and stuff so they really tried [pause]. But then I think once you get to know your nurse and you kind of build up a relationship she could see what it was that I wanted to know and then she was really good. And I stayed at the same hospital for two years until I was eleven and then we moved to [city] and then I changed.
 
 

She found that nurses working on different shifts didn't communicate with each other very well.

She found that nurses working on different shifts didn't communicate with each other very well.

Age at interview: 18
Sex: Female
Age at diagnosis: 18
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Well at the hospital itself I thought the communication was very poor between the nurses and between each other really. You know you have different shifts of nurses, different nurses coming to see you and stuff and some of them. Like when I was coming home I had wait about two hours to get all my medications and then this nurse, she just gave me an insulin pen and it had someone else's name on it. And she can't, that's just out of, you know. You can't do that because it's got someone else's needle in there. And if I hadn't have looked I would have injected, you know, I think it's terrible communication at the hospital on the wards but the diabetic centre in the hospital is very good and efficient. It's just the actual communication on the ward and maybe, I don't know. They're not very, communicative like between each other.

Specialist diabetes nurses

Lots of people told us that they were introduced to their diabetes specialist nurse in hospital and started the process of learning to manage diabetes with them. They described how one specific specialist nurse stayed with them and continued to visit them at home. Specialist nurses showed them and/or their parents how to do insulin injections and helped build up their confidence. Those old enough to remember say that they first practiced on an orange and some were allowed to inject a nurse, a doctor or one of their parents. 

Learning to cope with needles

In hospital they were also taught about doing blood glucose tests (finger pricking). A few 'hated' needles and hated the thought of having to inject or do glucose tests everyday for the rest of their lives. Many found the thought of injecting a bit scary. Others say that they just accepted the fact that they would have to inject and do 'finger pricking'. Some were amazed and relieved to find out how quickly their symptoms disappeared after they started injecting insulin. (See also 'Insulin' doing injections everyday'.)

 

She describes how much better she felt after being put on insulin but how she dreaded having to...

She describes how much better she felt after being put on insulin but how she dreaded having to...

Age at interview: 19
Sex: Female
Age at diagnosis: 17
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So yeah, I was in hospital for about a week. And I was just on an insulin pump like one of them big hospital ones. And I couldn't go to the toilet by myself because of my drips and stuff but I was fine, my mum looked after me. 

I started feeling better straightaway really, like my ulcers started to clear up. My eye sight got better with in a week. As soon as I came out my eyesight was cleared up. I could see properly because before it was very misty and like, you know, when you wakeup in the morning and your eyes are quite blurry, they'd become like that. 

But that cleared up and so I was fine. And then I had about halfway into the week, I had [name] diabetes nurse come and talk to me and said that I needed to start doing my injections now. And that's when it kind of kicked in and I was a bit scared because I was like, 'Oh my god'. So they came, explained to me what I had to do, showed me all the pens. 

And he said… he got the needle out and showed me how to inject an orange and I was okay. And he said, 'Now you've got to do your leg'. I couldn't inject myself for like two days, like I'd go to do it and I was a wimp. I had cried, 'Oh I can't do it'. But I got through it and I'd done it my first time and I was really happy and I ran down the ward like, 'Mum I've just injected'. And everyone was like well done. So that was really cool. 

 

He thought the injections were going to be a lot worse than they actually turned out to be.

He thought the injections were going to be a lot worse than they actually turned out to be.

Age at interview: 19
Sex: Male
Age at diagnosis: 14
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What happened in the hospital?

I was given insulin for the first time - injected didn't really bother me. I've never been bothered by injections really. It didn't hurt. I thought it was going to be a lot worse than it actually was. And then I didn't - my first thoughts as well it's going to be a big deal, it was going to be quite frightening. I didn't know how I was going to cope. As soon as it started I thought there's no problem here. What is three or four injections a day? It's not really stunting my life at all or anything like that, and yeah, I was just having my insulin, and just waiting really, because the consultants etc were on holiday, that I couldn't really do anything, so I was just waiting round the hospital, and it was a kind of surreal experience, feeling very well, not actually feeling anything was wrong with me, but having to sit in the hospital. So it was a bit annoying, but it had to be done.

Young people told us that they left hospital with 'a bag full of medicines' and a 'mountain' of advice and information about diet, insulin, glucose meters, what do to in case of hypos and highs. (See also 'What makes a good consultation with the care team'; 'Information about diabetes' and 'Children, transition and young adult clinics'.)

Young people said that life with diabetes is a gradual learning experience and that the key is to learn what works and what doesn't work for you.

​* National Institute for Health and Care Excellence 2015.

Last reviewed December 2017.

Last updated December 2017.

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