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Cystic Fibrosis Trust

Festival tips for parents

We’re committed to lifting the limits that cystic fibrosis places on the lives of everyone affected by the condition. Your son or daughter wants to spend a weekend in a tent among hundreds of other people listening to live bands and having fun? Why not, we say! 

Of course, attending a festival is a rite of passage for many teenagers, but they can be nerve-wracking for parents. We’ve developed this survival guide alongside parents of young people with cystic fibrosis (CF), highlighting some of the common concerns about festivals and some solutions to discuss with your child before they go.

There’s much more detail in our festival survival guide for young people, so they’ll be well prepared before they go.

Hopefully, this will put your mind at ease and help you to help them have a fantastic time.

Emergencies

While most festival experiences go off without a hitch, a big concern for many parents is what happens if there is an emergency. If an issues occurs, it’s important to remember that all festivals are supervised by adult stewards, welfare volunteers and trained medics.

If you child has a medic alert bracelet or necklace, you might want to encourage them to wear it. Taking a look at the festival map and highlighting the emergency facilities is also a good idea.

Another good source of support over their time away will be their friends, who can help relay basic information about CF if necessary. We have included a medical information sheet in our festival planning information PDF that can help first aiders understand CF and the medication that your child is taking.

Contact

Phone signal at festivals is notoriously patchy, so it’s useful to have a back-up plan including having the phone numbers of friends. Also, remind your child to take their phone charger or a power pack (external battery, or whatever the kids call it!). But if you can’t get in touch, don’t panic!

Food and hygiene

There are usually lots of food outlets at festivals and they should all have the relevant food safety certifications. However, with many thousands of revellers, it’s wise for your child to be very cautious with hand hygiene, particularly before preparing medications or eating. Your child might like to consider applying for an accessible camping ticket, which may allow them and their ‘carer’ (friend) to access, amongst other things, less busy toilets!

In the main performance areas, there will likely be portable toilets, which can become blocked and unhygienic. Bringing your own tissue, washing hands thoroughly and using your own antibacterial cleansing gel is advisable.

Staying safe

Things can get lost or stolen at festivals no matter how careful your child is, so suggest that they take extra medication and ask a friend to store it in case of emergencies. It’s also important that they store their money, phone and keys safely.

As well as somewhere waterproof to store medications, make sure they don’t forget sun cream and additional sodium tablets in the (unlikely) event of a British heatwave! Sunburn and dehydration can of course occur even when the sun isn’t blazing in the sky, so it’s worth taking these things whatever the forecast.

Sex, drugs and alcohol

Many parents, regardless of whether their child has CF or not, will worry about drug use, alcohol and unsafe sex. Cystic fibrosis can add to these concerns, because some recreational drugs could interact with their CF treatment and alcohol can make medications less effective.

The way you handle these conversations is likely to depend on the age of your child and on your own views and feelings. For more advice about drugs and alcohol, look at the Talk to Frank website. For advice about safe sex, visit Brook.

Having fun

Your child is likely to be very excited, and it’s reassuring to know that thanks to progress in CF treatment it’s not just a misty-eyed dream for people with CF to spend the weekend away from home having fun with their friends. It’s part of growing up and gaining independence for many kids, and although CF can add to the challenge, it shouldn’t stop your child taking part.

Like all parents, you may feel worried and CF is an added dimension to that anxiety. There isn’t a magic solution to keep your child safe, but you can support and encourage them to look after themselves with gentle conversations about staying healthy at festivals and other events.

The pack

To help us develop our festival planning information we sent Liv, one of our YAG members, to Bestival. We worked with Liv and her mum Sarah to make sure our festival planning information had loads of top tips for young people as well as support for their families and friends.

Liv said: “I loved going to Bestival. I grew up knowing that CF was an important part of me, but also that if for any reason it did stop me doing anything there would always be another time or another opportunity, which I think is really important. Sometimes things are just out of our control and, despite everything, being healthy is the most important thing. However, it is just as important to enjoy yourself and do the things you want to do, and as long as you're smart and organised about it, and you've got the appropriate support… got for it!

“It's important to be mindful but not let it take over or stop you doing whatever it is you want to do - go to a festival, travel somewhere, whatever it is. It's all about balance and having CF as a part of you, not the whole of you!”

Liv’s mum said: “Parents need to teach their children with CF the importance of being independent as soon as they can by showing them how to make up drugs and IVs and making sure they’re involved in and aware of every step of their treatment and regime and giving them a voice. It’s important for them to have the confidence to speak up for themselves, especially if they feel uncomfortable in the presence of someone who has a cold or a cough, or is smoking in front of them, as there will be situations when parents cannot do these things for them.

“The most important thing to do to prepare your child for going to a festival is to make sure that they feel confident enough to stand up for themselves in difficult situations, and not be afraid to go against the crowd if they didn't feel safe or comfortable.

“It's really about not spoiling your fun but also not putting yourself in jeopardy either if it can be avoided."

Festival fever

Download our festival planning information PDF - it's full of loads of great tips for making sure you have the best time possible, a useful packing checklist and a medical information template.

Check it out

Find support

There's loads of support available for people with cystic fibrosis and their families, from grants to help with taking your medication abroad.

Discover more

Life with CF

From new parents and best friends of someone with cystic fibrosis, to journalists and those with a professional interest in it – there’s a lot to learn! Take a look at our informative resources.

Find out more