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Diabetes type 1 (young people)

What makes a good consultation with the care team?

Diabetes care teams can be vitally important in helping young people understand more about their diabetes and how it needs to be treated. Diabetes care teams try to do more than just prescribe treatment - they also guide and advise young people about living their lives as fully as any other young person. Some young people said they'd had fantastic care and support from their diabetes care teams and felt they had worked really well together.

 

Feels pleased about his clinic because the staff has always given him advice he can understand at...

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Age at interview: 16
Sex: Male
Age at diagnosis: 11
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Tell me a little bit about the consultation. You know, how you relate, how they communicate and relate to you?

Okay. The nurses and the doctors at the children's clinic, when going for re-, for like check-ups, however many months apart, talk to you in perfectly normal terms. They explain it to you in the correct detail for your age and your understanding. So you'll have the most detailed understanding of exactly what your situation is and how you can deal with it. They're very, they're very nice. And they'll be, like they won't mess about with you, they'll be totally frank with you about any situation. And the advice they give you is, is very useful and it will usually sort you out for any of your problems that are currently occurring.

They don't ask you for your opinion [laugh], although like if you do have, if you do have trouble with something, they'll take it into consideration and they'll tell you an alternative. But most of the things they tell you are very, you, it shouldn't, it isn't that much of a problem when it comes to your opinion. It's very, very obvious things, very plain things, which you just have to get on and deal with. 

I suppose at the beginning, now that I look back at it, at the beginning when I was first diagnosed, you have to learn how to inject yourself and you need to learn how to do your blood tests and you need to learn what diabetes is all about and how to control it. And at that time, being 11 years old or some, something like that, I was actually, I was in my opinion too young to totally understand exactly how diabetes worked. And I've picked it up very slowly over years and years. And it becomes almost natural and you gain a detailed, very detailed understanding of exactly what diabetes is and how to control it, the longer you have it. And you don't need to start off with a perfect knowledge of it yourself, because it will come naturally over years that you have it from trial and error. And, yes, it's all very, it all comes to you very easily and simply and you understand how to control it. It's like, 'Yes, okay'.

What would you improve about the consultation? What do you think needs to be improved?

In my opinion, I've never properly thought about the consultation at my hospital, mainly because I've had no problems with it. I go there every several months, so that they keep up to date with all the changes that I make to my diabetes, like general changes in my weekly routine and whether I change insulin at particular times accordingly. And help me understand how to deal with my diabetes. But I've never suffered a problem with them. They've always been as useful as they can be, and honestly I can't think of a way that they could change to improve themselves.

Young people talked to us about diabetes care consultations and about what they found worked for them. Generally they liked doctors and nurses who talked to them (rather than their parents). They also appreciated being treated with respect and having their opinions listened to by the team, which made them feel included in decisions that were made about balancing their treatment and their lives.
 

She has just started attending a young adult clinic and feels good about care there because they...

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Age at interview: 20
Sex: Female
Age at diagnosis: 2
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How does it feel sort of to change from one clinic to another? What have you noticed that is different?

I was really worried about it at first because I was so used to my consultant at home and my diabetes nurse at home and like the way they did things. And I was wo-, kind of worried coming here that I wouldn't get on with the people, that it would be completely different and that they wouldn't kind of understand me and like how my diabetes works. But, yes, I mean I've only been to the diabetes clinic here twice, and both times it's been a positive experience. And...

Positive, what do you mean by positive?

I got on well with the consultant and felt that they listened to me and understood what I was saying. And like I also noticed kind of the difference between like being in the children's clinic and being in the young adults' clinic. Because even though my consultant at home didn't like treat me like a child, obviously he was more used to dealing with young children. So that obviously had an input on how like he treated me. Whereas here they're used to treating young adults. At first I, like the first appointment I found that really strange, because it was like left kind of like more up to me and I had more kind of say. And the consultant didn't kind of sit there and tell me like what I should be doing. He kind of asked me what I felt I should be doing and how things were going and'

Was it a bit frightening to start with or not?

Yes, it was. I mean I was also like quite scared about it because of what was going on with my eating disorder and my diabetes being totally out of control. And I was really worried that like they were going to just be really mad at me. And I don't know really what I was worried about other than, yes.

What was their attitude towards you?

What, at the'

When you told them about your eating disorder?

Well, they already knew, because it had been my psychiatrist that had like organised for me to transfer to the diabetes clinic up here. So, yes, the consultant knew what was going on and he knew that I was in a bad place. And so that really helped because I felt that I didn't have to explain everything from the beginning. And like as I spoke to him it was clear that he'd obviously like taken the time to really read my notes and to talk to the other people involved in my care.

So that was nice?

Yes.

You found that quite reassuring?

Yes.
 
Equally important as far as many young people are concerned is seeing the same medical staff each time they attend a clinic. Getting to know the team and building up a good open relationship with them helped young people feel they were getting the kind of individualised care that many said they wanted and could trust. When young people went to clinics and had to see different consultants, they said they felt confused particularly if the new doctor gave them different advice for the same issue.
 

Feels that she has built up a good relationship with a consultant paediatrician who has seen her...

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Age at interview: 18
Sex: Female
Age at diagnosis: 10
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It's really sort of come from the, my consultant, who I've had for quite a while. She's been very s-, she's very supportive of diabetes and she is very knowledgeable, to actually, passes down new information about, you know, new insulins and new blood, blood glucose machines and things like that. She's really good at providing that. 

Have you had the same doctor, the same consultant?

I have, yes.

Since diagnosis?

Yes. I'm still in the, at the moment I'm in the adolescent clinic, diabetes, at [city] hospital and I've still got the paediatrician, yes, she's the children's consultant for diabetes, I still have her at the moment. And I like her a lot. She's, she really can relate to sort of young people. I think that's really important. But I'm just in the process of being moved across to the adult clinic. So I'm not sure, I think I'll have a gentleman then. So, yes, it's been nice to have the same lady, you know, so I can talk to her and she knows me, and she's seen me grow up and things and helped me control diabetes. But she's always been quite pleased with what, the progress that I've been making and things.

So you have seen her most of the times that you go to your appointments?

Yes, I'd say pretty much all the time, about 80 per cent of the time I see her. And I go every three months and I see her. There's been occasions when she's been away at conferences and I've seen other people, consultants, who are also very nice. But, yes, it's mostly the female consultant that I see.
 

Katie feels well supported by the team at her diabetes clinic and decided not to transfer when she went away to university.

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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Yeah I could have transferred to [city] however I just decided to keep everything back at home because I knew the healthcare system there. And although I knew that they’ve got more funding here I didn’t want to have to start again. If I move house when I am older I probably move to wherever I’m based but at the moment I’m still based at home for a long period over summer. I’m at home over Christmas, go back a bit over Easter so there are always times within the year that I can get back or if I do have an appointment it’s not very far away for me to travel to go home. So it’s nice that I know that I do have my appointments there. It also means that over summer if I do have a problem I can contact them rather than having to come down here because I won’t have accommodation in summer whereas at home I’ve always got accommodation.

Ok. So it’s the continuity of care and practicalities of it that?

Yeah I really like the continuity of care. When I go to my appointments I still see my paediatric nurses and consultants around. So it is very nice to know that I’ve still got people that I know around. And even if I did have a problem I could always contact my paediatric nurses and they’d put me through to the right adult nurse if I needed one or they’d help me to arrange an appointment. So I’ve always got the care there which is a lot nicer than possibly being a bit stranded at a new hospital that I didn’t really know.
Seeing different doctors at their clinics meant that they were given advice that wasn't as useful as advice from doctors who knew them well.
 
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Until recently she was seeing different doctors every time she went to the diabetic clinic and...

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Age at interview: 20
Sex: Female
Age at diagnosis: 11
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So you used to know in the transition clinic or in this clinic?

I think probably it would be in the paediatric or transition one I think, so I don't know, may be they don't do nurses in the [laughs] in this clinic. I used to see, when I was first diagnosed I always used to see the same nurse and the same doctor so obviously yeah he knew you know more about me and about my diabetes and what was going right and what was going wrong and that kind of thing. And I knew who they were and I knew I could phone the nurse if I had a problem or whatever or my mum could because I was younger then you know that sort of thing. Whereas now I think the last two times I've seen the same doctor but there was a period where, I don't know if it's because I was going from clinic to clinic but I didn't see the same doctor for you know ages so you know you kind of, you tell one person one, you see one doctor once and then the next time you go it's a completely different doctor and they know you know even less than the other one did about you [laughs]. So it's just a bit silly because you know you might as well have stayed at home really because you knew better what to do than some complete stranger to you, even if they've got the medical knowledge they don't, they can't really apply that medical knowledge if they don't know your situation sort of thing. So, so yeah I think, but now I've seen the same once twice, the past two times so it's a bit better because at least you feel that you know you're seeing the same person and obviously they don't know you very well but at least they, you've seen them before and kind of talked to them before so you feel like you've got a bit more of a basis to build on kind of thing, a bit more kind of an understanding about, they've got more of an understanding about you and stuff and the things that you know you want to talk about or you want to deal with kind of thing I suppose.

Any other suggestions on how to improve, on how to improve the service?

I think it might be a bit better if they kind of had slightly more accessible advice in between the clinic times. Because you go to the clinic and they go have you got any problems with anything? You think well I did three months ago but my appointment wasn't till now and I've sorted it out now [laughs] so it would be nice if you kind of could get more advice in between. Like you know I don't know if I have a specialist nurse or even who she is or any, I wouldn't know who to contact if I had a problem or if I had a query or something I wasn't sure about, I wouldn't really know who to contact about it. And a friend of mine who wanted to change from the two injections to the four who, you know he had huge problems about actually trying to get someone, because the doctors said they can't do it has to be the nurse and he had a huge problem with actually getting a nurse who, first getting in touch with one and then finding a time that she can actually come and talk to him about it and stuff. And so you know that kind of thing I think it's not, you know it's a bit, I don't know may be they need more nurses or something I don't know. Or at least to tell you you know if you have a nurse and who she is and whatever. Because I used to, I used to know who she was and whatnot but I've no idea now [laughs].

Seeing different doctors at clinic could also seem like a waste of the young person's time if the new doctors asked questions they had already answered before at previous clinics. Several young people said they disliked going to appointments and finding the clinic was too busy and where they ended up just seeing whoever was available that day.
 

He wishes his doctors would share information about him so that consultations could progress a...

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Age at interview: 19
Sex: Male
Age at diagnosis: 14
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It's, can be a bit repetitive at times. Quite a few times I've been there I've got frustrated, because three months before I've had exactly the same conversation, but because it's been different doctors' So I've gone there and they've said this and I've gone away and yeah, do all that. Come back and they've said exactly the same things to me that they said three months ago. So I progress myself in getting better sugar levels, but then they haven't really consulted with the other ones so - you've always got to bring them up to speed. So they always ask you questions, and it's annoying really, because you've told them how you feel what your sugar levels were the last time, what your diet is and stuff like that to one doctor, and then three months later you have to say it all again to another doctor. So I feel clinic can be a waste of time sometimes, but like other times the last occasion I went I spoke with the dietician, and she explained to me how different carbohydrates have got different different values. So rice is - a plateful of rice has got a lot more carbohydrate than a plateful of mashed potato, for example. So that was that was really useful to me. So at times like that it's been good, but other times it can be just - I feel it's a waste of my time, sometimes.

It is because you don't see the same doctor?

Yeah, that's one problem, because you don't see the same doctor every time. You can see - all the time I've been going to clinic, over four and a half years, I've probably seen about seven different doctors. Yeah.

So the continuity' they don't know who you are, basically?

No, they've got a file on me that everything is put into, but they don't - well, I think they don't always check up on their patients before they look at it. Because, well, like I said, they always ask me the same information. But the dietician, she's very good. She often has a chat with me just to see how I'm getting on, and that's very useful, because like she's showing me how rice has got more carbohydrate than mashed potato, now when I do inject after I have a meal, I know if I've had curry, with rice, that I need more insulin then, and that's actually helped my sugar levels.

What would you improve regarding the consultation at the diabetes clinic?

Better - I think they need to talk to each other more because like I was saying quite often I get asked the same stuff by different doctors and I don't feel there's any progress there, so I think they need to, before they see the patient they need to sort of check the file over and say oh we discussed this last time so the issue doesn't have to be raised this time, things like that, so' I'm okay with them, but I think they need to talk to each other a bit better, because sometimes I think the information - certain things could be, like we could move on and talk about new subjects and stuff, but we are talking about the same stuff all the time, and also it would speed things up because people don't like going to clinic, obviously, and sometimes the process can, sort of, take two hours, with the waiting as well and stuff like that, so' I just think yeah they need to talk to each other a bit more.

 

Says that at clinic he just sees whichever consultant is available and if they are too busy he...

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Age at interview: 18
Sex: Male
Age at diagnosis: 14
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So you don't tend to see the same, the doctor. I mean what about, do you have a specialist nurse there you see?

When I was, when I was younger I did see a couple of the... Well there was one nurse in particular I. Just after I was diagnosed I was phoning her, well phoning her office obviously every, every fortnight or so plus as I say this is what the test results are looking like. Should I adjust my insulin and should I maybe have a snack here instead of there. And I did see her a couple of times in the clinic but she wasn't based there. It was just a case of if she was there I could see her. But not so much with the nurses anymore. It's more a case of if you have general questions and the doctors are pushed for time, if they're really busy then see a specialist nurse and they'll try and help you. 

Also well when I changed one of the insulins I use not that long ago. Well I don't know maybe about 18 months now when I think about it. The demonstrations on how to use the new types of pens etc is done by the nurses. With the doctors, only like I said before, you see who you see depending on who's busy. But I do have on my file, I do have one doctor who, well there is a doctor named as my consultant and there's been. There's a couple of other doctors I see fairly regularly but, [sigh] but yeah. It's not always the same one which, which is a little bit frustrating because yeah they've got all the notes but you quite often have to explain things to [laugh] three different doctors. When, I mean, granted one, no guarantee they'd remember every detail about every patient but there's a better chance of it if you've got to start from scratch every time.

So you feel you are starting from scratch quite a lot?

Yeah. I mean not so much any more but for a while it was getting to be there was a different doctor every visit and I suppose now my insulin regime has settled down as well because it was being changed about all over the place for a while. That as well having to go through and say, yes I'm on this insulin, this insulin taking these doses at these times sort of thing. I've told three different doctors this already. Why can't somebody write it down and get it, [sigh] and remember it. But, anyway.
 
Having contact numbers for someone who was part of the team and knowing that they could always reach an expert at any time of day or night, was said to help them feel more secure. Everyone we met said that they wished they could contact a nurse from the diabetic team outside the usual hours.

Everyone we talked to said that if they had a specific problem or question to ask the care team the response was usually very helpful. But they also said that because everyone is different and so tends to react differently to diets and treatments, they didn't find general advice helpful and wanted it to be tailored more to their individual needs. 

Most young people said that they found it helpful that their consultants used 'normal' language without medical jargon and could explain things in ways they understood. A few remembered their consultants had gone to great lengths to make sure they understood and had sometimes drawn pictures and provided them with more information. Young people valued consultations where they felt able to ask questions and go back over things if they needed to. (See also 'Information about diabetes'.)

Not everyone was satisfied though - one young man said that the consultants he knew tended to assume that everyone has the same level of knowledge they have. Sometimes young people found some diabetes literature difficult to understand.

Most young people were attracted by friendliness and sense of humour among staff in the clinic, and many said that nurses and dieticians were approachable and tended to be more informal than the doctors - though this was not everyone's experience of doctors. Nurses who were straight-talking without being bossy were liked by some young people more than those who seemed too soft.

 

Says that her current nurse at the adult clinic has a refreshing 'no nonsense' approach which has...

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Age at interview: 19
Sex: Female
Age at diagnosis: 14
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This is my diabetic nurse. 

I wouldn't say they had more experience, they just have a different approach to dealing with patients. They'll be more, they'll be, they'll take the, the kid gloves off. They'll be more sort of direct and honest with you and like, whereas my other, the paediatric diabetic nurse, she was always, she was very gentle and soft and sweet and she always sort of tried to soften whatever she was saying. But the one I've met now, [name], she just tells it as it is. And I remember her saying to me, you know, 'You've been playing a game of Russian roulette.' She says, 'I don't know, you've been so lucky for so long I don't know you've done it.' And she was quite direct and, you know, because they're dealing with adults, aren't they, I suppose. They, they'll you how it is.

Has that helped?

Yeah, she, yeah it has helped. She's given me a lot more to think about and she's approached it from, she's really friendly, she's a really nice lady, she's really understanding but she's approached it from a more serious point of view. It, it's good as well to have somebody new because it's like a, you know, a fresh start, you know, just we'll start again with someone else and see how it goes with them. And it's just refreshing to have a change really sometimes.
 
Not many young people we met had access to a GP who specialised in diabetes, but several who did said that they valued the relationship with their GP, and especially if they had known them for most of their lives. One young woman said that her GP had provided her with the best care possible because she had a gentle persuasive approach and worked with her.
 

Because she knew and trusted her GP they worked together to help sort out her eating disorder.

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Age at interview: 27
Sex: Female
Age at diagnosis: 7
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I've been with my GP since I was a child and they knew me. It's a friendly little practice and I felt quite comfortable going in there. 

And I'd put it off quite a bit. I'd make an appointment and then cancel it. But eventually I did, did get there. And when I went in through the door and I sat, I was sitting in the room with them it was a lot easier. I was able to say to them, you know, what, what was wrong.

Do you remember what they said to you, he or she said to you? And when you explained what you were doing?

She said to me, 'What would you like us to do, [name]? We'll do anything that we can to help, you know. What would you like me to do? Would you like me to refer you to somebody who you can talk to who will know about the situation that you're in?' I remember sort of not saying, 'Yes' straight away. It was like, you know, kind of, 'I don't know. Do you think I should?' And she gently persua-, because it's a really hard thing to do, you know. It's very hard to sit there and say, 'Yes, I need help'. And, because it's admitting that you've got a problem. Which takes a long time to do. But eventually I did say, 'I think I should do. Yes, I think maybe I should. Because I don't want to carry on like this. It's, and I'm in pain all the time, you know. I need to pull myself out really.'

Do you think that that approach is one that works with young people?

Definitely. A hundred and fifty per cent. Because for a start when you're a teenager you, if somebody tells you to do something you don't do it. You know, it's like, 'No, I'm not doing that. She told me to do it'. But if you gently persuade that person that it's maybe a good thing, you know, or let them think it's their idea, that type of attitude, you know, then you do it. But with something as delicate as an eating disorder, anything that, anything that would make you think that you have to eat again is very very frightening. And by admitting it and by telling somebody, and then somebody telling you what to do, it's quite frankly, just, it would have petrified me or perhaps, you know, it would probably have put me off. But her approach was that it's me and my situation and I have to decide what I really want to do. Because you can't sort of force somebody to do it when they're not ready because, you know, they won't deal with it with their heart and their soul. They'll be going through the motions but then they'll just lapse back again. So her approach was perfect. But it was, and I think probably she knew me, because she knew me as well. She'd known me for years and years and years. She knew everything that I'd been, she knew my history, you know. If I hadn't have agreed to go then, then I would have probably come away and still felt amazing. Because I did feel amazing, because I'd finally told somebody about it who might be able to help me. I would have probably come away and then gone back again in my own time. But had she have said, 'Right, okay, you need to see someone. We'll refer you' it would have absolutely petrified me I think. So she did, she did leave it to me to do in my own time.
 
 

She has been recently diagnosed and says that she discusses fears and concerns with her mother...

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Age at interview: 18
Sex: Female
Age at diagnosis: 18
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How have they responded?

They've been very supportive both at the hospital and my GP. They provide a lot of help. If I want to talk to people and if I'm upset they're very supportive. They're not cold or anything. They're very, yeah, they're great actually, they're very nice. And…

So it seems to be that apart from the the care team you also talk to your GP and you are in touch with him?

Yeah, yeah. And I have to go and get all my medication for when I go to university. So I had to go and see him last week and get all of my insulin and my strips and stuff from him.

And so he has been responding, he has been supportive?

Yeah very supportive. And he said even though I'll be studying away from home he said whenever I come back if I need to talk to anyone or if I need to see him to just make an appointment or something. So it's been quite, yeah he's been quite supportive. 

Do you have any fears or concerns about the future as far as your diabetes is concerned?

Just scared that, you know, about when you get cuts and stuff on your feet and legs that I have to cut them off, amputate them. That scares me quite a lot and things that can get in, heart problems and eye problems and stuff. Yeah it all sort of scares me a bit.

Who do you talk to about these fears?

Just my friends and my mum if I'm feeling down or something or my GP as well. He is…

You have talked, discussed with him about this?

Yeah. Well I've been upset if I have, you know, an appointment with him I've just cried or told him what's wrong and he's been quite supportive and he like. They just say basically if you control it you shouldn't get these problems. It just has to be, you know, well controlled, the diabetes.

Last reviewed December 2017.

Last updated December 2017.

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