Being diagnosed with diabetes – what’s it like?

Children and Young People’s Diabetes Team

This leaflet has been written for you by other young
people to help you understand what it is like to be diagnosed with diabetes.

Things you may be feeling or thinking:

• Scared

• Overwhelmed

• Lonely

• Sad or unhappy

• Angry

• Worried

• Why me?

• I’m different now!

• That you will never be normal again

• What is diabetes?

• Upset and confused

But don’t worry – you will be ok!!

You don’t have to do it all alone. There are other people around who can help and support you; your family and friends will be there for you, the nurses and doctors are great and there is someone called a psychologist who is a special part of the diabetes team who is there to talk to you about your feelings and worries.

What is hospital like?

• “Your mum or dad can stay with you”
• “The playroom and young person’s chill room are good fun places to go and relax – there is an x-box!”
• “The ward is nice and all the staff are lovely”
• “Terrifying at first”
• “There is a special area for young people”
• “It is big but you learn your way around!”
• “The food is nice”

What will happen in the first few weeks

There is a lot to learn about diabetes and looking after it – it takes a bit of time but
your parents, the diabetes nurses, doctors, dietitians and ward nurses are there to help you. Getting used to having diabetes takes a good few weeks!

You will be off school at first but you will be back in no time. The diabetes nurses will go
to speak to your teachers to let them know how to help you and what to do. The sooner you get back to your normal routine, the better it will be, and the less different you will feel.

What is it like coming to clinic?

• You might need to be seen more often in the first place but once your control is good you only need to come every three months.
• You might feel nervous sometimes but there is nothing really to worry about.
• The nurses don’t shout!
• You get weighed and measured and your finger prick checked for your HbA1c before you are seen.
• You see the doctor the nurse and the dietitian (the nurse and dietitian are in a separate room to the doctor).
• They download your blood meter and look at the results with you and your parents – they will then make changes to your insulin if they need to.
• There is an outside and an inside play area while you are waiting to be seen.
• There is a young person’s area to sit in and a cupboard with magazines and information leaflets for young people.
• There is a notice board with lots of information about diabetes and the diabetes team.
• Once a year you have your annual review appointment.
  You will need a blood test at this appointment and you will also need to bring a sample of wee, (the nurses will give you a bottle for this).
  They can also give you some numbing cream and plasters to put on the area they will take the blood from before you come to the appointment, or you can have freeze spray.
• If your control is not good you will be seen more often by the nurse to help you get things better again.
• You might also see the nurse and dietitian for extra clinic appointments to give you extra education if you need it (for things like carb counting etc.).

Fun stuff – what can you do?

• Residential holiday
  For children and young people with diabetes organised by the diabetes team every year.

• Summer club
  Fun education sessions.

• Diabetes parties and events
  For young people organised by the diabetes team.

• Family group
  They organise fun activities and meet up regularly.

  You get to meet other young people with diabetes and make friends with them.

• You can continue with your own hobbies and clubs
  You just might need to plan some things ahead.

Going to school with diabetes

• Your friends might ask lots of questions. You can choose to tell them about your diabetes or not but it is sometimes a good idea to let friends know so that they know how to help you and what they need to do if you are hypo.
• Your teachers need to know about your diabetes. The diabetes nurses will go and train them how to help you if you need it in school.
• You can get a pass to let you out of class to go to the toilet.
• You should be allowed to keep your test kit with you in school so that
• You can check your blood glucose levels if you feel you need to without disrupting the class.
• You should have some glucose with you all the time in school.
  Glucose tablets are good as they can be kept in your pocket.
• You should have somewhere private to go and do your injection in school – not the toilet.
• You should be allowed to go to first sitting and, or the front of the queue at lunch time.
• You can still go to school clubs and after school activities.
• You can still go on school trips and overnight residentials.
  You need to take all your kit and spare supplies with you; the nurses will go and speak to the staff to give them training.

Exams are stressful and this might make your bloods high – talk to your diabetes team as they can help and advise you. They have leaflets and information for schools on how to help you around exam times.

Patient experience

South Tees Hospitals NHS Foundation Trust would like your feedback. If you wish to share your experience about your care and treatment or on behalf of a patient, please contact The Patient Experience Department who will advise you on how best to do this.

This service is based at The James Cook University Hospital but also covers the Friarage Hospital in Northallerton, our community hospitals and community health services.

To ensure we meet your communication needs please inform the Patient Experience Department of any special requirements, for example; braille or large print.

T: 01642 835964
E: [email protected]

The James Cook University Hospital, Marton Road, Middlesbrough, TS4 3BW.
Telephone: 01642 850850

Friarage Hospital, Bullamoor Road, Northallerton, North Yorkshire, DL6 1JG.
Telephone: 01609 779911

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