Travelling with Pulmonary Fibrosis - Resources, Advice & Experiences.
by Wendy Dickinson
With thanks to Action for Pulmonary Fibrosis, Asthma+Lung UK, Pulmonary Fibrosis UK (Facebook) members & the Nottingham PF Support Group.
Everyone loves a holiday or to visit family and friends abroad. But when you have pulmonary fibrosis, you face more challenges than most – from accessing affordable travel insurance to organising oxygen and medication.
This short guide is designed to help you navigate those challenges and includes advice from fellow patients and links to helpful resources.
APF Support Line
The first thing I would advise to is call the Action for Pulmonary Fibrosis Support Line. The number is 01223 785725. APF will be able to talk you through the steps you’ll need to take when travelling. This is a call-back service so you will have to call the Support Line number or email APF and they will call you back. Click here to view their email address or complete a short online form requesting a call back.
Prepare Your Documents
Before travelling anywhere, it is always useful to print out or save on your phone or tablet copies or photos of any relevant medical information: hospital letters, list of medications, details of your oxygen prescription, your GP contact details and your travel insurance details - just in case you need healthcare while you are away. And make sure you take enough medication (and spares!). You may want to take a standby course of antibiotics.
There are some APF resources here Training and resources on pulmonary fibrosis for healthcare professionals, which are free for anyone (not just healthcare professionals as the link suggests). They include a leaflet with space to include personal details mentioned above and a lanyard with indicates that you have PF.
Healthcare Cover Abroad
You may already have an EHIC – European Health Insurance Card – which gives UK citizens access to healthcare in Europe on a par with nationals. This has now been replaced by the new GHIC – Global Health Insurance Card. Despite it having the prefix ‘global’ the card is still only valid in Europe and Switzerland. You should apply for this via the link below. However, the GHIC is not accepted in some countries and you will also need a new-style EHIC for travel to those countries. See the link below for a full explanation and how to apply.
The GHIC & EHIC obviously have lots of benefits as it means you can get generally get low-cost or free healthcare in Europe. However, they aren’t a substitute for travel insurance for several reasons. For example, they don’t guarantee free treatment as each country has its own national health system. Something that’s free in one country might be payable in another. They also don’t cover things like repatriation. Should you need to come home you’ll have to pay those costs, which can be substantial.
Travelling With Oxygen
If you are holidaying in the UK, you can organise your oxygen with your usual oxygen supplier. They will arrange delivery but you must check that your accommodation provider is happy to have oxygen used and stored on the premises.
Travelling abroad with oxygen is more complicated as UK oxygen suppliers generally do not allow their equipment to be taken out of the country. You will have to arrange and pay for oxygen at your destination yourself. Your UK oxygen supplier can advise you on this. Also, Oxygen Worldwide can organise oxygen delivery for people on holiday and arranges oxygen at airports for you. You can learn all about their service and contact them here Oxygen Worldwide.
Using Oxygen While Flying
Your lung condition doesn’t necessarily prevent you from flying. Discuss your travel plans with your doctor. Most people with a lung condition, even if they use oxygen, can travel on planes.
If you already use oxygen, you may find that you need to increase the flow due to the higher altitude. If you don’t normally need oxygen, you may find you need it during the flight, for the same reason. The Fitness to Fly test (see below) will indicate if you may need oxygen during a flight.
Fitness to Fly Test
This is also known as the hypoxic challenge and involves a test where you breathe in air with similar levels of oxygen found on an aeroplane.
Airlines have their own rules about using oxygen in-flight. Some airlines may only allow you to bring a portable oxygen concentrator, which you would need to hire or purchase for travelling with. Some airlines may also charge you for having oxygen on the flight.
The two websites below have some really useful information about all aspects of flying with oxygen, including the fitness to fly test and a link which explains the oxygen policies of different airlines.
Holidaying with oxygen - Asthma + Lung UK
Air travel when you have a lung condition - European Lung Foundation
Travel Insurance
If you have pulmonary fibrosis, it is essential that you have comprehensive travel insurance if you are travelling abroad. As with many aspects of travelling with PF, finding an insurance company who will insure you for a reasonable cost - particularly if you use oxygen – can be a challenge.
I cannot recommend any particular companies but I have asked for input from PF patients and carers and I have included their comments below.
Many people have recommended an organisation called Moneyhelper . Their really helpful website includes a list of insurance companies that are specialists in insuring people who have serious medical conditions or disabilities. This doesn’t guarantee that you will be accepted but it at least saves you endless hours contacting companies who would not insure you.
Patient Advice:
Pat: “As soon as oxygen is mentioned the price goes up! I am going to Cyprus next month and will be paying £350 for one trip. Age is a concern too with All Clear although they seem friendly and professional.”
Kate: “Free Spirit cost £300 for my Europe trip. Better than the £1,200 minimum with most others.”
Sandra: “I was quoted £3,500 for two weeks in Florida. Also quoted £600 for one week in Portugal and £1,800 for two weeks in the Canaries. I’m on oxygen and my previous annual insurers of over 30 years will no longer insure me. Most insurers refuse me now. I’m 61 and think my travels will now be restricted to the UK.”
Terry: “I was quoted £757 for four days in Ireland. We did go without it because it was a family wedding but I was on edge.”
Jennifer:” I tried everyone. I am 84 but still enjoy life. I am on oxygen, have a pacemaker and wanted to visit my family in Canada to see my two great-granddaughters. Quoted £13,000. Yes, 13 thousand. I asked if they were taking me on a private jet. Needless to say, I declined and will have to rely on Zoom.”
George: “I have always used Staysure but they have now declined me insurance but they did tell me to contact Moneyhelper.”