Going on holiday with cystic fibrosis
Find out more about the challenges of planning a holiday abroad if you or your child have cystic fibrosis, and what resources are available to help, from our travel insurance guide to tips for taking medication on flights.
If you or your child have cystic fibrosis, taking a holiday can require a lot of planning. Adequate insurance can be expensive, and taking a suitcase full of medication into another country needs to be carefully organised. But don't let this put you off! Advances in medicine and healthcare mean that people with CF are healthier than ever, and adventurous holidays to far flung destinations are well within reach.
Don't forget to tell us about your experiences of going on holidays, days out or travelling with cystic fibrosis.
There are grants available to help with the costs of taking a holiday or break. For more information, check out our grants for people with cystic fibrosis.
Before you go
Planning your trip
Tell your CF team about your travel plans as soon as you can - preferably before you've booked the trip! They can give you appropriate travel advice and arrange any necessary tests, such as the 'fit to fly' test, as well as any treatments or documentation you may need. They can also advise you on which activities are suitable. For example, two things your CF team may suggest that you avoid while on holiday are:
- Scuba diving - changes in pressure in the lungs during a dive could cause a collapsed lung or a pneumothorax - a build-up of air in the space between the lung and the chest wall.
- Jacuzzis - these are a potential breeding ground for Pseudomonas bacteria, which are particularly harmful to people with cystic fibrosis.
It is important to remember that due to the risk of certain infections, travel to certain countries or areas is not recommended; please read the Melioidosis and Travel to Tropical Countries factsheet (PDF 325KB).
Some antibiotics can cause your skin to be more sensitive to the sun and prone to burning easily; your CF team will be able to advise you if you are likely to be affected.
Remember, hot environments can cause excessive sweating and lead to dehydration - ask you CF team if you'll need to take salt tablets with you. Use the Cystic Fibrosis Worldwide website to find contact details for a local CF centre or doctor before you go.
Find out about our ‘Travel Fair to end travel discrimination against people with CF and their families.
Finding well-priced travel insurance can be a challenge, but we can provide a list of travel insurance companies that people with CF and their families have told us have provided them with a reasonably priced quote for cover. The list does change over time, so for the latest version please contact our helpline.
Free/reduced-cost medical treatment in Europe
If you're travelling within the EU, apply for an European Health Insurance Card (EHIC), which entitles you to free or reduced-cost treatment and medication if you fall ill. You can apply online, or pick up an application form from the Post Office and some travel agents. It can take up to 21 days to arrive, and it will cover you for three to five years.
The card is not an alternative to travel insurance. It does not cover things like mountain rescue, repatriation to the UK or lost or stolen property, and so it is essential to get travel insurance as well as apply for the EHIC.
It is important to take all the right medication with you, including ample sterilising tablets, salt tablets, antibiotics etc. You should also take a copy of your prescription with you. Take spare medication in case of illness or loss. If you are taking more than one bag, put a set of medication in each, in case the bag goes missing.
If your medication needs to be kept refrigerated, you might need a cool bag or vacuum flask.
Contact your airline in advance if you will require medication such as nebulisers or portable oxygen during the flight - make sure you contact the airline you are flying with well in advance so you can meet their requirements.
If you are taking a car ferry you may not be allowed access to your vehicle during sailing, so make sure you take what you need with you when leaving the car.
Once you have left
At high altitudes the air pressure and oxygen concentration are lower than on the ground, which may be a problem for people with decreased lung function. Before booking a flight you should ask your CF team whether you need a 'fit to fly' test. If the test shows that your blood oxygen levels could be affected, you may have to take oxygen with you on the aeroplane. The tests should be repeated each time you fly, as your blood oxygen levels may change over time.
Low cabin humidity can result in dehydration, so replace lost fluids by drinking water, and eat some salty snacks to replace salt lost through sweat.
Dehydration can also cause your blood to get thicker and more prone to clotting, increasing the risk of deep vein thrombosis (DVT). Take a walk every hour or try some of the exercises in the in-flight magazines to reduce the risk.
Remember to put any medication you take with a meal, such as pancreatic enzymes or insulin, in your hand luggage if you are eating during the flight. Any medication that should be stored at room temperature needs to go in your hand luggage as the baggage hold of an aeroplane gets very cold during flight.
Some airlines charge for oxygen on flights and some don't, and some will allow you to bring your own oxygen eqipment on board, while other airlines will only allow you to use equipment they provide. Charges for oxygen on flights can add hundreds of pounds to your holiday costs, so it's worth looking into this before booking your flights. More airlines publish their policies on oxygen on their websites, or our helpline will be happy to look into this for you. If you are unexpectedly facing high costs for oxygen on a flight, you may want to have a look at our holiday grants.
Nebulisers, compressors and voltage
If you are taking a nebuliser compressor or oxygen concentrator, remember that there is no electricity source on an airplane, and other countries may have different sockets, so it's important you have enough batteries for your flight and the right mains adaptor for your destination.
Aim to have 50% more battery power than you need for your flight, in case of stop-over or delays.
You should also make sure your equipment has the right voltage for the country you are visiting. Talk to your CF centre about borrowing a nebuliser or oxygen concentrator with the right pump voltage, if you don’t already have one.
Visiting theme parks
Theme parks (and other leisure and tourism destinations) often have special facilities for people with conditions like cystic fibrosis - these are often detailed on their websites so it's worth looking into these before you go. Some will offer discounts to people that receive certain disability benefits and/or to carers or family members, and sometimes it's possible to queue-jump to avoid long waits which could be tiring or might conflict with medication or physiotherapy timings.
There might be a first aid room if you need to do a treatment during your visit. If you're not sure, give them a call before you go and ask how they support people with disabilities (under the definition in the Equality Act 2010, CF can be considered a disability)
Your first port of call should always be your CF team, but you can also read the European Cystic Fibrosis Society's detailed guidance on travelling with cystic fibrosis.
AccessAble (formerly DisabledGo) is the UK's most popular accessibility checker. It's totally free to use and has loads of detailed information about the accessibility of all kinds of places across the UK, including parks, leisure centres, restaurants, tourist attractions, shops and more.
Over 125,000 places have been visited and assessed by a trained surveyor, so you can get all the facts and be confident knowing someone has been and checked the location in person.
Every place included on AccessAble has its own access guide, which includes details of parking, entrances and toilets, together with measurements and photographs. Information isn’t just about physical access, but covers things that people with visual impairments, hearing impairments, autism, dementia, learning disabilities and mental health issues have all said are important.
AccessAble currently works in over 100 towns and cities and is always keen for people to get involved. This can range from coming along to an event, to becoming a local surveyor. AccessAble would love to hear from you if you are interested in finding out more about the work they are doing in your area. They are also keen to hear from people who don’t have a AccessAble guide to their area and would like for a AccessAble surveyor to visit their area next.
Contact AccessAble by calling 01438 842 710, using Textphone number 07736 327546, emailing firstname.lastname@example.org, or writing to:
The Cystic Fibrosis Trust provides financial support to help people deal with the challenges of living with cystic fibrosis. Find out if you're eligible for a holiday grant!
Find out more about getting adequate travel insurance. Understand the jargon and make sure you've got adequate cover for your needs.
Here to help
Find out how to contact our wonderful helpline staff by telephone and email. They’re here Monday to Friday to answer your questions, help you access support or just to have a chat.