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Having cystic fibrosis never stops, even for the holidays!
Before someone without a long-term health condition goes on holiday, they might have to check whether their passport is in date (different countries have different rules on how many months you have left on your passport) and whether their insurance is still valid, and where it might be valid to. They may need to apply for an EHIC or GHIC card (some insurers require you to have one). After that, they might need to book the time off work, and then can look to book a holiday at any destination to suit their budget.
For people with cystic fibrosis, there’s no option of a holiday from your condition, which means many considerations and planning before going away. Challenges include thinking about possible infection risks, difficulties getting travel insurance, taking lots of medication on holiday, and having to do treatments like nebulisers and physio, researching access to health care, and the anxiety that uncertainties around health and logistics might cause. Even time differences can cause problems when taking medicines like insulin. These issues make travelling abroad a complex and sometimes stressful experience for people with CF.
Cystic Fibrosis Trust has a number of resources on their website for people looking to plan a holiday, and their Helpline team can advise on queries you may have about travelling with CF. You can also discuss your top tips in our Forum.
I won’t let CF stop me from seeing the world...Even if it’s tough and there’s a lot of work, we will do it.
Nicole
Nicole runs the Sussex Shala Wellness Retreat, and has CF. She’s travelled to lots of countries across the world, teaching yoga. She said: “I did two summer seasons back-to-back in Greece, where I taught a variety of fitness and yoga classes. I took a three month supply of medication, then briefly came back to the UK and got a further three month supply.
“It was definitely a daunting experience, but I won’t let CF stop me from seeing the world. It’s been a big roadblock travelling with CF; making sure I’m well enough to go, thinking of worst case scenarios, getting medical documentation, insurance, etc. I have to be so organised making sure I have everything. Despite that, things have become easier in recent years, and I have an ‘it’s not going to stop me attitude’ – me and my mum would always say ‘we will find a way’. Even if it’s tough and there’s a lot of work, we will do it.”
When you have CF, make sure you plan well ahead if you want to travel. Some medicines, like modulators, can be hard to get in other countries if something goes wrong. It’s a good idea to pack extra medicine before you travel, just in case. You might also want to keep your medicine in different safe places while you're away, so it’s not all in one place.
Dr Keith Brownlee, Director of Medical Affairs at Cystic Fibrosis Trust
Make sure you check the label on each medication - some need to be kept cold. If your medication is lost or stolen while you’re away, or if you run out because of travel delays, contact your CF team to let them know what’s happened and see how they can help.
Laura, 36, has cystic fibrosis and severe lung disease. When she plans a holiday, there are a huge list of things she may have to consider, due to the severity of her condition, including:
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Asking her doctor whether travel would be possible and when. She also has to discuss the location with doctors and find out where the nearest CF centre is
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Arranging pre-holiday IV antibiotics, working out timings, whether they will be at home or in hospital and the impact this may have on work or social plans
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Arranging a hypoxic challenge test to work out if she may need additional oxygen during the flight. If Laura passes, she then has to decide whether she still wants to take additional oxygen, and work out the costs and availability of this
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She also has to consider her NIV (non-invasive ventilation) and make sure this will be allowed on a flight, if needed
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Travel insurance companies will need to know all of her medications, any comorbidities, and any awaited results and investigations. Many insurance companies don’t understand the complexities of CF, and this is likely to be significantly more expensive than someone without any long-term conditions
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Laura will then need to check whether the airline provides any oxygen and if not arrange her own portable oxygen concentrator hire and also let the airline know of any assistance she might require. She’ll also have to print off her medical clearance form and arrange for her medical team to send this to the airline, as well as arranging letters for her medication
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She’ll then have to order enough medication, including emergency antibiotics ahead of her trip
"With the support and help of my team and my family, I have been able enjoy travelling and have the best time - which I am incredibly grateful for"
Laura
Laura said: “Having severe lung disease makes travelling even more complex - from deciding where to go and how long for, to working out medications, oxygen requirements for the flight, airport assistance, arranging a POC, and bringing things like my nebulisers and NIV (which all add onto hand luggage!). On top of that, I’m always trying to stay as stable as possible before and during the trip - which can be stressful in itself.
"There’s a lot of planning and thinking involved before I can even book anything, and it doesn’t stop once I arrive - there’s no break from CF. It’s not just the medical side either, but the financial side too with extra costs, like hiring oxygen or buying travel insurance.
"It has been a huge learning curve, especially with the different challenges that come with CF - but with the support and help of my team and my family, I have been able enjoy travelling and have the best time - which I am incredibly grateful for."
Your CF team want to support you to live a life as full as possible and that includes holidays!
Dr Heather Green, Consultant Respiratory Physician at Manchester Adult Cystic Fibrosis Centre
Dr Heather Green, Consultant Respiratory Physician at Manchester Adult Cystic Fibrosis Centre said: “Planning in advance as a person with CF is key when thinking about arranging a holiday, particularly if you have lower lung function. There are lots of additional things to remember which can be tricky and having a checklist to tick off can be really helpful and can be used for future holidays.
Your CF team want to support you to live a life as full as possible and that includes holidays! Your team can help ensure your travel plans are as safe as possible including giving advice about insurance, letters regarding the need to carry additional equipment such as needles, syringes and nebuliser machines.
The team will also be able to advise you whether in-flight oxygen would be recommended and discuss how to arrange this. For those with lower lung function, a hypoxic challenge test (also known as a flight assessment) may be recommended to assess the need for in flight oxygen. These tests are increasingly difficult to access via NHS services and, when they can be accessed, the wait for a test is often very long so it is really important to have a discussion with your team well in advance of booking anything if it includes a flight.”
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