Diabetes type 1

Information about Type 1 diabetes

Above all else, the young people we talked to wanted to know how to manage their diabetes so that they could get on with their lives. They wanted information that explained official regulations clearly and that helped them cope with practical matters like how to get a driving licence or what medication/insurance to take with them when travelling abroad. Those who were about to leave home also wanted information about what to do in an emergency and what kind of support would be available at university.

The young people we talked to were clear that they needed to have good HbA1c test results (HbA1c means glycated haemoglobin). An HbA1c test measures your average blood glucose over several weeks. It is a test that should be offered to you at least once a year, and may be done at the clinic every three months or so. It provides a rough guide to your average blood glucose over the last few months. (See also 'Everyday factors that affect diabetes control'.)

The young people also wanted answers to their specific medical questions - it is safe to get pregnant with diabetes? What happens if you smoke cannabis? Which kind of contraceptive pill is best? They wanted to be able to ask lots of questions about how diabetes will affect their social and personal lives, and they wanted to feel like they weren't being judged by health professionals.

Getting hold of useful and up to date information about the latest medication and technology was very important to young people. Lots of them praised local clinics, GPs, specialist nurses and dieticians for getting hold of information for them. Parents - mothers especially - were also good at finding out useful information according to some young people, especially for those who had had diabetes since childhood. Several young people wondered whether it would be possible to be sent regular reminders about finger pricking.
The charity, Diabetes UK, and its two youth magazines, were talked about quite positively, though young people expressed different views about whether they enjoyed reading about diabetic celebrities/sporting personalities like the Olympic gold medallist Steve Redgrave. Some said they were inspired by diabetic role models, others preferred to read more about other young diabetics and their lives. Some said they had found out the latest information about drugs and insulin pumps from these magazines or the website.
Most young people had used the internet to find out more about diabetes and recommended it as a good way to link up with others facing the same problems and life choices. Some said they used the internet to search for detailed medical information from academic websites to supplement information from clinics, others liked the internet because it was informal, intimate and direct. The possibility of seeing other people of their age talking about their diabetes seemed a good idea to some, but others were less sure and felt that it probably wouldn't help them (see also 'Online discussion groups and blogs').
Leaflets and other written information about diabetes were of less interest to most young people we talked to, and those who did mention leaflets said they were generally good enough but that they hadn't really read them thoroughly. Young people held different opinions about how much detailed information they wanted about diabetes - a 21 year old woman said she was shocked by a Canadian booklet and the way it presented statistics about diabetes, but someone else felt that 'gory pictures' he found in books gave him the incentive he needed to take diabetes seriously.
Another person wanted leaflets to include more sections that didn't 'toe the line' and talked about common fears - for instance she had felt frightened about needles and had wanted to know if other people felt the same way.

Mobile phone Apps

Downloading Apps on to a mobile phone to help manage diabetes is also very popular. Some of the young people we talked to found that there were particularly useful diet and carbohydrate counting and exercise applications out there. Katie - who has been living with diabetes for several years - said she used the apps a lot when first diagnosed but now mostly only use them when they go to eat out. Sophie routinely uses an app to record her blood glucose reading and prefers it to a logbook. Young people said that Apps are generally inexpensive and within their budget.
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.

Last reviewed December 2017.

Last updated December 2017.


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