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Diabetes type 1 (young people)

Messages to doctors and nurses

Communication and attitude of doctors

  • Doctors and nurses need to show they do care and should not get angry if they are upset with us.   
  • Do not be patronising.
  • Take time to get to know each of us as a person, we are all individuals that happen to have diabetes.
  • Young people need positive reinforcement, we do not respond well to just criticism.
  • Offer us advice and ask what we want to do. Give us a chance to voice our opinions.
  • Please don't see us as just 'the patient', dare to see us as part of the team.
  • Be sensitive to our needs and our problems in managing diabetes. 
 

Learn to know about us and our problems. We are all individuals who have particular needs.

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Age at interview: 27
Sex: Female
Age at diagnosis: 7
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My advice to doctors and nurses who deal with young people with diabetes is get to know the diabetic, try and help and encourage them, and getting them into a, an insulin regime that will suit their lifestyle, get them to talk about what they do in their life, what insulin regime is good for them, and a chance for them to talk to you, you know. That's all it is. They just need somebody to talk to who can understand what they're going through. And have somebody there who can support and try and advise them and, and show them the, show them the right directions. And I think that's, that's all it takes really. A diabetic is not a number. A diabetic is an individual who has individual needs. And that would be a great great help I truly believe.

 

Do not patronise young people. Be supportive and tell them the truth about their diabetes.

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Age at interview: 18
Sex: Female
Age at diagnosis: 10
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I think they should know that young people aren't completely oblivious to what's going on. And I think it's important not to patronise young people about their diabetes and to tell them what to do and how to control their diabetes. Because it's the individual who controls it. And anything that you might tell them doesn't really, doesn't do any help. It does probably more harm than good because it makes people want to rebel against what you, what advice you're giving them. And so I think, and there's no need to really boss people and tell them, 'Well, you shouldn't be doing this' or whatever. And I don't think that's not good advice for somebody. I think just to be supportive. And if they do ever ask questions about it, about diabetes, never be afraid to tell them the truth or give them the answers that they want. Don't just say something you think they'll want to hear. Give them the truth. And I think that's going to be beneficial to young people. But, yes, I think the key thing is just not to patronise young people or treat them like sort of an outsider because they've got diabetes, or anything like that. Or like they've got a r-, as the most, the worse thing is when people treat you like you've got a most serious, life-threatening disease. When it's not like that. I think it's just important to understand that it's their diabetes and you've got to let them, you've got to remember that it's those individuals who control it. And so just be understanding.
 
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Don't be condescending. Face and talk to patients, of any age.

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Age at interview: 17
Sex: Female
Age at diagnosis: 3
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Never talk down to the patient. There's been times where I've seen doctors and they'll be really condescending. Talk to the patient as if they are friend, as if you know, you know them as a person not as a patient. Listen to their needs. Listen to what they want. You might not be able to meet them exactly but come up with a compromise. Never force them into something unless it's very, really necessary because it, it won't work. That's what happened with me. I was forced into going into four injections. I didn't like it. It gave me bad feelings about it. So it didn't work. If you wait until the patient feels the time is right then they're more likely to persevere with it and really take hold of it and go for it and make it work for themselves. 

And I always remember a thing I find if you are working with children you're working with the child and not the parent. I mean, I know you need to talk to the parents a lot of the time because the child does not understand but not sit there and completely face the patient, completely face the parent and not the child if they're of any age. That annoyed me when I was in child clinic when they sat and spoke to my mother and not me. So yeah always treat them as people I think is one thing. And definitely listen to what they want and try and make it. If it's going to do their health good try and make it happen to all your needs. 

And encourage them when they are doing well I think as well. I mean it, it's a case of getting to know your patient's personality as best you can I think, because some people take praise well which makes them carry on. Some people take if you say, you're doing this wrong look it's not doing you any good then that will make it, make them better control over whatever. But if you say that to some people then they'll go, well I don't care. So you've got to get the balance right I think. But you know that when you find your patients.
 
 

Be sensitive to teenagers' reactions. Be reassuring to build confidence.

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Age at interview: 16
Sex: Male
Age at diagnosis: 9
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I think it's important to be very sensitive to the teenager's reaction because the way you tell them how to look after the sugar's important because they might be a very fragile in, you know, the way of how you feel like, they control the sugar. If they're, if they're really out of control it's best not to get really angry and trying to scare them into controlling. Be very reassuring and if it's really dangerous don't, if they're in a dangerous situation, don't act panicked, just help them as much as you can. Every opinion counts really. Even if you just tell them that they're improving, and really emphasise it, even it's a little improvement in their blood, blood sugar control, it really makes a difference because it makes them feel much better confidence and self-esteem's really important in the process of controlling your blood sugar and keeping it that way.

 

Listen to the patients. We have valuable input.

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Age at interview: 17
Sex: Female
Age at diagnosis: 1
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They should know that we are people [laugh. We're not just a subject and it might be perfect if you put this amount of insulin in and the result of blood sugar comes out perfectly. It's not going to happen. I mean [laugh] you can try but it's not going to work like a well-oiled machine. It's the human body and things are just naturally going to be different and go wrong and sometimes you can't explain them. And you really have to treat us like people [laugh]. And be aware that ok we might not be qualified doctors but we also have an idea of what's going on and we have a valued input so just try to talk to us [laugh].

So you, that would be one message I mean take us as part of the team?

Yeah. I mean don't view us as 'the patient' see it as a team. It's definitely, it's not just the doctor telling you what to do. I mean doctors, ok they have a pretty good idea of what you should do but yeah listen to the patient because they might know something that you don't so.

Advice and information about diabetes
  • You need to tell young people that they are in control of their diabetes.
  • You will make young people understand better if you are friendly to them about why they need to do their blood glucose tests and their insulin injections. 
  • Educate and inform the young person about diabetes. The more they understand, the better they will feel about managing it.
  • Give information first and then ask if we have any questions. Many of us do not like to ask questions.
  • Provide us with a contact number for an out of clinic hours. 
 

Be positive and give solutions to problems, and avoid doom and gloom.

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Age at interview: 23
Sex: Male
Age at diagnosis: 7
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Like I said before, give them positive, give them a, if they've got a problem give a, give them a solution; don't just say, 'You've got a problem, sort it out', because, I don't, I didn't respond to that. It got, it got to the point where I don't want to go to hospital when I think it's a waste of time, if I'm honest. I know, I understand, you know, I get hassled and it's doom and gloom, so don't keep going on about all the stuff that can go wrong. I know you have to, but all I've had since I've had it is, you know, if you've got diabetes, you can go blind, you can have kidney failure, you're going to lose your legs, you're going to - you know, all this sort of thing - and then you must take care of yourself. Well, it's boring. It's, in the end say well, if it's going to happen, it's going to happen and then it just puts you off doing anything at all, if I'm honest. I mean, now, well again, I've sorted myself out. When you're a teenager it's probably even worse, you think, oh, you know, you want to run away from it. But if you, if all you're going to get is doom and gloom you just, you get to a point where you think well, I can't be bothered then, what's the point. If I'm going to go blind, I'm going to go blind, you know. That's all I've ever had, and that's why it annoys me and that's why I don't, that's why it got to a point where I don't, I didn't, I just don't really want to go to hospital because it wasn't, it wasn't the stuff I wanted to hear. Well, I know, you know, diabetes affects everything and it's a pain, but you've just got to give, you know, a positive kind of outlook, a bit of help, and a solution to the problem, that's what I say.
 
 

Give children information on how to cope. Give them a chance to talk with other children, if they...

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Age at interview: 18
Sex: Female
Age at diagnosis: 7
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I'd probably say, give a bit more information on what life is about, the life that they're in now. You know, the age group that they're in, if they have just started a new school give them information on how to cope with it. I mean, a lot of kids, young kids won't ask a lot of questions. And I think it would be better off for you to tell them about it than to say, 'Well what are your thoughts on it?' Because they probably won't talk back and say, you know, this, and this and that. 

Offer them the chance to speak to people, don't put them in a situation, don't' say, 'Right, I'm, you're going to this interview with these other kids and you're going to meet them.' Ask and say, 'Would you like to meet this person?' Because a lot of kids might say that they don't want to be put into that situation, they'd rather go into it if they want to. You know, if they feel comfortable in that situation.

Give them information on what devices there are out, don't just say, 'Oh, there's this one device, this would be good for you.' Just say, 'Look there's all these different devices, this is what this is, this and this and this is how you find out about it.' And they're more likely to sort of look back and think, 'Oh, I'm going to have a look at that one and that one.' And take it further from there.

 

Provide a contact number for out of clinic times and organise events so young diabetic people can...

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Age at interview: 19
Sex: Female
Age at diagnosis: 3
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I'd say it's really, really useful to provide some sort of contact number out of office hours because a lot of the time when you get a drastic hypo or hyper it may not be severe enough to send you to hospital. But it's just useful to have someone to reassure you on the end of the phone and give you some sort of advise because you're friends or family around you may also be unsure what to do or what's going on. 

And also to organise as many events for diabetics to meet other diabetics, it's really useful because that's almost the best way of passing on advice as well with people with first hand experience' just being able to talk to one another and shared that advice and feel that there is support out there' that they're not alone and it's not just you that's got that problem [laughs] really.

 

Do explain to the patient that they are in control.

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Age at interview: 17
Sex: Male
Age at diagnosis: 3
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Well one thing is, well this probably sounds quite silly but when you're taking blood, you know, if they ask you to stop you'd better stop because I used to hate that. You know, you tell a doctor to stop and they'd still put the needle in anyway. And that used to really, really upset me because you know, you didn't feel as though you had any control over it and what else. You know it's hard to. Quite a long time ago when I was diagnosed I guess. I know, you know, it's got to be hard for the doctor and for the patient I guess but you've got to, you've got to talk to the patient. You've got to tell the person that's diabetic how. You know, no matter how young they are you've got to explain it to them so that, you know, they feel in control. That's what they need to, to hear that they're in control of it. They don't want to think that it's out of their hands. Even if you, you know, you tell their parents you've got to let them in on it as well so they know what they're doing.

Last reviewed December 2017.
Last updated April 2012.

 
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