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Your Young Person Has Been Diagnosed With Type 1 Diabetes Over the Summer. What Happens When They Go Back to School?
- Rebecca Cook
- Aug 5
- 6 min read
Updated: Aug 7
Author: Rebecca Cook, Parent of a Type 1 Young Person and Positive Psychology Coach
This article is based on my own experience when my daughter was diagnosed with Type 1 diabetes on the second day of the summer holidays in 2020. This meant a huge gap before returning to school after a Type 1 diabetes diagnosis and as school was shut, I couldn't even speak to anyone to see what plans could be put in place or ensure that there were people trained to support my daughter.
Every young person and every school is different, so this isn't medical or legal advice. I've included links to organisations that provide up-to-date information and support at the end as well as a check list I wish I'd had to help me at the time.
If your young person has been newly diagnosed with Type 1 diabetes over the summer holidays, September might feel like a very long way away.
Until you remember that school is going to start again.
And suddenly there is another enormous thing to think about.
How is this going to work at school?
You may have spent the weeks since diagnosis learning about insulin, glucose levels, carbohydrates, hypo treatment and everything else that has suddenly become part of your life. Now you have to think about your young person spending several hours a day at school, with other people needing to understand how to support them.
Except school is closed.
You may not even know who you need to speak to yet, let alone how long it will take to put everything in place. And if you're already worrying about how much time you've had to take away from work since diagnosis, the thought of reaching September without a plan can feel overwhelming.
You don't have to solve September on your own
It can feel as though it's your responsibility to make sure everything is sorted before your young person walks through the school gates.
But supporting a young person with Type 1 diabetes at school shouldn't simply become an extension of your own caring responsibilities. Schools have responsibilities around supporting pupils with medical conditions, and staff may need appropriate training to provide that support.
Exactly what is needed will depend on your young person's individual needs and the arrangements at their school, so your diabetes team and school should work together with you to make sure there is an appropriate plan in place.
But when school is closed for several weeks, it can be a big worry about making sure everything is in place for your child to return with their friends on the first day back.
If you're not sure where to start, Diabetes UK and Breakthrough T1D both have useful information for parents and schools.
I've linked to their current resources at the end of this post, so you don't have to spend your precious summer trying to work out which information you can trust.
What do you need to find out?
You don't need to arrive at your first conversation with school knowing exactly what the answers should be.
It can simply help to have a list of questions so that you're not trying to remember everything while you're also processing a completely new diagnosis.
You might want to ask:
Who is coordinating my young person's diabetes support at school?
Which members of staff will be trained?
Who will provide support during the school day?
What happens if the usual trained member of staff is absent?
How will mealtimes and snacks be managed?
What arrangements are there for glucose monitoring and insulin?
What happens if their glucose levels go unexpectedly high or low?
What happens during PE, school activities, trips and other off-site activities?
What information does the school need from us?
How will school communicate with us about general care and more urgent issues?
Who should I contact if something isn't working?
You may already have answers to some of these. You may have absolutely no idea about others.
That's okay.
You don't need to know everything before you start the conversation.
Your hospital team will probably be able to provide you with an outline of an Type 1 diabetes Individual Healthcare Plan (IHCP) which will help you start to collect your thoughts on what will need to be discussed with school staff when school reopens.
If you work, that can become another source of worry.
This was a big source of stress for me when my daughter was diagnosed.
I was already dealing with a huge amount of new information, appointments and practical arrangements, and I had to go back to work two weeks after diagnosis.
So there was another question sitting in the back of my mind:
What happens if school isn't ready when September comes?
You may already have taken time away from work or used annual leave since the diagnosis. You may have an understanding employer and still feel uncomfortable about asking for more time. Or you may be genuinely worried about what happens if you need to be available because arrangements at school aren't in place yet.
It's worth raising this as part of your planning rather than waiting until the first day of term. Speak to your manager and your HR team to understand what support work can provide such as paid or unpaid carer's leave and temporary flexible working arrangements.
And remember to let them know that your young person's support at school is something to be planned with the school and diabetes team. You don't have to assume that every gap automatically becomes your responsibility to fill.
Handing over responsibility can feel strange
Even when everything is going well, sending your young person back to school after a Type 1 diagnosis can feel frightening.
You've probably spent weeks watching glucose levels, responding to alarms, learning what different numbers mean and worrying about what might happen next. Now you're expected to let other people help look after them for several hours a day.
You might find yourself wondering whether they'll notice if something is wrong, whether they'll know what to do, whether they'll take it seriously or whether your young person will feel different from everyone else.
Those worries don't mean you don't trust your young person.
They don't mean you're going to hover over them forever.
They mean they've only just been diagnosed.
You're still learning too.
You don't need everything to be perfect on day one
There will probably be things you haven't thought of yet. There may be adjustments to make once your young person is actually back in school and you see how things work in practice.
That's normal.
The aim isn't necessarily to anticipate every possible scenario before September. It's to have a clear enough plan, appropriate support and people who understand what they need to do.
If something isn't working, you can raise it.
You don't have to quietly absorb every problem yourself.
A little preparation can make September feel less overwhelming
If you're facing your first school return after a Type 1 diagnosis, I've put together a simple Back-to-School Type 1 Diabetes Checklist to help you keep track of the things you may need to ask about and discuss with school while they're closed.
It isn't a replacement for your diabetes team's advice or your school's own healthcare planning. It's simply somewhere to start, so that you don't have to keep all those questions in your head.
And if you're feeling overwhelmed by all of this, you're not doing anything wrong.
You've had a huge amount to learn in a very short space of time. You don't have to have September completely figured out today.
One conversation at a time is enough.
A new diagnosis can be overwhelming and it's easy to lose yourself whilst you're focused so intently on making sure your child gets looked after. Sometimes though, it's important to do something for yourself, no matter how small.
That's why I've created the Still Me Letter, a weekly email to support parents who might be feeling consumed by supporting a Type 1 young person and being present for other family or work. From one parent of a Type 1 young person to another. Why not subscribe today?
Useful resources
Diabetes UK
Diabetes UK has information and resources for parents, schools and young people living with diabetes, including guidance around managing diabetes at school.
Breakthrough T1D
Breakthrough T1D provides resources for families and schools, including information and a schools pack to help schools understand and support young people with Type 1 diabetes.
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