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Cystic Fibrosis Trust

Pre-school and primary school

Starting pre-school or primary school can be an exciting and daunting time for parents, particularly if your child has cystic fibrosis (CF). Whether you're a parent, or a teacher expecting a new student with CF, the information in our primary and pre-school pack is full of useful information and real-life examples of how people have managed the transition, with top tips for making the journey as smooth as possible.


Cystic fibrosis (CF) shouldn’t stop your child enjoying a full and rewarding school experience. Compromises may need to be found, and minor adjustments made, but working in partnership with the school and your CF team will help ensure your child’s education is not limited by cystic fibrosis.

Our primary and pre-school pack

Parents, teaching staff and CF professionals have shared their experiences and expertise in the hope that they will be helpful to you and your family as you get ready for the school years. As one dad pointed out: “everyone is on their own journey”. Having CF doesn’t mean that your child’s experience of life, including school, will be the same as that of any other child with the condition, but the stories in this pack highlight that there are often common issues.

The booklet is designed to outline some of the concerns or challenges that may come up when your child starts pre-school or primary school, including infection control, diet management and your relationship with the school. The parents in this pack all have their own approaches to these issues, and no two experiences will be the same - as you know, your child is completely unique and over time you'll work out the best way to help the school meet their specific needs.

You'll find links to the guide for parents, three factsheets for schools and a template for an Individual Healthcare Plan at the bottom of this page.

The video

The video, particularly useful for teachers but also parents, gives an overview of how one family found the experience of their child starting at a new school. It features a nurse, teachers and the parents - it's important to remember that this is just one family's experience, and every family will have unique preferences on how the school should approach issues such as infection risk and care giving. 

And finally...

You can also watch the extended interviews with the teachers or nurse to find out a bit more about them. Time flies - don't forget to take a look at our information for parents of children who are about to start secondary school when the time comes!

If you need more information, please contact our helpline on 0300 373 1000 or at helpline@cysticfibrosis.org.uk, or speak to your CF team.

If you need more information, or want to share tips, support and advice, check out ourForum. You will need to sign up to access the Forum.

Award winning resources

Our pre-school and primary school pack was highly commended at the 2017 British Medical Association Patient Information Awards. Thank you to the families, teachers and professionals who gave their time to help us to create these resources.

The primary and pre-school pack

Designed for parents, by parents - and CF clinicians, teachers and the Trust!

Read on

Schools factsheets

Take a look at our new factsheets for primary and pre-schools - top tips for teachers expecting a student with cystic fibrosis.

Download the factsheets

Healthcare plan

Download a template Individual Healthcare Plan to help plan your child's care with the school.

Download the template