Travelling with pulmonary fibrosis

Can I travel with pulmonary fibrosis?

Can I travel by car with pulmonary fibrosis?

If you plan to travel by car, there are schemes to help make journeys more accessible for people with disabilities. The blue badge scheme gives you access to parking closer to your destination. Many European Union (EU) and European Economic Area (EEA) countries recognise the blue badge. Check if your destination recognises the blue badge before you travel.

Motability leases cars, wheelchair-accessible vehicles, scooters and powered wheelchairs to people with disabilities.

If you travel with oxygen:

• Securely store any equipment in the vehicle.
• Check with your oxygen supplier if your equipment is suitable for car travel.
• Ask your oxygen supplier if there are any additional precautions you should take.
• Tell your insurance company you are carrying oxygen in your vehicle.

Read more about driving abroad with a disability.

Can I travel by bus or coach with pulmonary fibrosis?

Most UK buses are wheelchair-accessible and suitable for people with reduced mobility. You may be eligible for a disabled person’s bus pass or an older person’s bus pass. You can search for local bus services here.

Some coaches are wheelchair-accessible and suitable for people with reduced mobility. UK coach service National Express has information about accessible travel on their website. You can also contact their Assisted Travel Team with any queries about coach travel.

If you are travelling abroad, check with the operator before you book.

Can I travel by train with pulmonary fibrosis?

Most UK and European trains are accessible to wheelchair users and people with reduced mobility. You might be eligible for a disabled person's railcard.

If you're travelling within the UK, visit the National Rail website. There, you can find information on accessible travel for all UK train companies.

If you’re travelling abroad, check with the operator when you book.

Can I fly with pulmonary fibrosis?

Many people with pulmonary fibrosis can travel by plane. If you’re considering flying, tell your medical team as soon as possible.

Different oxygen requirements when flying with pulmonary fibrosis

The plane cabin contains less oxygen than normal air. Some people with lung conditions may have difficulty maintaining enough oxygen in their blood during the flight. This can lead to increased symptoms and feeling unwell. Your medical team may recommend that you have a fit-to-fly (hypoxic challenge) test. This test will determine how your body will respond to reduced oxygen in the plane. This will help your medical team decide whether you need supplementary oxygen during the flight.

Read more about fit-to-fly tests and taking oxygen on holiday further down this page.

Airport special assistance

People with disabilities can often access airport special assistance. This can help you to move through the airport and board. When booking, check with the airport or airline to see if airport special assistance is available. Many airports and airlines require you to book this in advance. Consider any layovers or stop-off airports and whether you will need assistance there. Be aware that special assistance services may vary between countries.

Help with personal care during a flight

Airlines require that you travel with someone if you need help with any aspect of personal care. This includes feeding, breathing, taking medication, or using the toilet. The person travelling with you will usually have to buy their own ticket. The airline should sit you together where possible.

Taking medications on a plane

Take your medications in your hand luggage rather than in your hold luggage. This reduces the chance of it getting lost.

If you have a medication that is both:

• a liquid
• in a container larger than 100ml

you will need a doctor’s note or a copy of your prescription to carry it in your hand luggage.

There are additional restrictions to controlled drugs. Check with your medical team or pharmacist if any medications are controlled drugs. If they are, read more about travelling with controlled drugs on the government website.

If you have a lot of medications, some airlines may allow you to bring additional hand luggage. Check with your airline before you travel.

Can I travel by ship with pulmonary fibrosis?

People with disabilities or reduced mobility have rights when travelling on UK or EU ferries and cruises. For example, free assistance to board and disembark. You will need to book assistance at least 48 hours before you travel.

As with travelling by plane, staff cannot assist you with personal care. This includes activities such as using the toilet, eating or breathing. If you need help with personal care, you must travel with someone who can help you.

There may be some restrictions because of safety or space limitations. Please speak to the operator before booking to ensure they can accommodate you.

Read more about travelling by ship with a disability.

Using public transport with pulmonary fibrosis

Reducing infection risk when using public transport

You can reduce the risk of catching infections, such as colds, flu, and COVID-19, when in public spaces. Regularly wash your hands and consider using a face mask in crowded areas. Read more about reducing the risk of infection.

Check how to get around public spaces

Review a map of the airport, station, or ship before travelling. Note the distances you will need to travel within the space, for example, between your ferry seat and the toilets. Check where the special assistance service desks are. Check if there are lifts and whether you will need to walk further to use them. In some places, such as airports, toilets may be down long corridors.

Book special assistance

Check if special assistance is available and whether you may need it. You may need special assistance even if you are travelling with someone. Consider if your travel companion could push your wheelchair or carry your luggage.

Can I get travel insurance with pulmonary fibrosis?

It’s important to get full travel insurance for holidays, both within the UK and overseas. Competitive travel insurance prices can be difficult to find when you have a diagnosis of PF. Some specialist companies have policies for people with medical conditions.

Money Helper has a travel insurance directory for people with a serious medical condition or disability.

Some people with pulmonary fibrosis have used Able2Travel, Insure for Travel and JS Insurance. Please note that we do not endorse or recommend any travel insurance company. Please make sure to get advice for your specific situation as services vary.

A group insurance policy might be beneficial if you travel as a group. Some policies allow the rest of the group to cancel the holiday if one person cannot travel. Check the terms of the policy, as they vary.

Can I travel with oxygen

If you need oxygen at home, you’ll need to arrange oxygen for travelling.

If you plan to take oxygen on public transport, check with the operator before you travel. There may be restrictions or additional considerations.

Travelling with oxygen by plane

Each airline has its own policy on supplementary oxygen use. If you need oxygen during a flight, contact the airline for their most up-to-date policy. Most airlines allow you to bring a portable oxygen concentrator (POC); some may supply oxygen for a fee. Some may not allow any supplementary oxygen devices. It’s advisable to check with the airline before you book.

If possible, it may be easier to fly directly to your destination. This may avoid the need to adhere to two different airline policies.

Find your airline’s oxygen policy on Travel With Oxygen’s list.

The European Lung Foundation has a list of airline contact details.

If an airline offers in-flight oxygen, check they can provide the right amount of oxygen for the whole duration of the flight. Consider if you will need oxygen in the airport before and after the flight. Check if there are times during the flight when oxygen can’t be used, such as during take-off and landing.

Most airlines allow you to bring a POC. You will need to buy a POC or rent one from a specialist company that allows you to take it abroad. A POC may not have enough battery for a long-haul flight. If you travel long-haul, ask your airline if they can provide oxygen. Ensure your POC can deliver the oxygen amount (flow rate) you need.

If you take a POC, make sure to:

1. Have enough battery for the whole journey. This includes any waiting times, layovers or potential delays. Some airlines require your POC to have a battery life of 150% of the actual flight time.
2. Know where power sockets are in the airport lounge or at the gate. When possible, plug in during waiting times to keep your charge topped up.
3. Check if your POC meets Federal Aviation Administration (FAA) requirements. Most airlines require this for POCs to be allowed on board.
4. Some planes may have power sockets onboard. Ask your airline if you can book a seat next to a socket.
5. Take plug adaptors suitable for your destination. Don’t forget any layover countries that may have different adaptors.
6. Keep copies of your oxygen prescription and the supplier's contact details.
7. Give yourself plenty of time to get through security with any medical equipment.
8. If possible, take any equipment onboard, even if you aren’t using it during the flight. This avoids the possibility of luggage being lost. Many airlines will require you to have a doctor’s letter to bring medical equipment onboard, even if you are not using it during the flight. Check with the airline before travelling.
9. Take any spare parts for your POC, such as tubing or cannulas, in case of any problems.
10. Consider the length of tubing you will need. In a hotel room, for example, will you have enough to move between your bed and the bathroom?

Fit-to-fly test

Plane cabins are pressurised, and the level of available oxygen is reduced. This means that your breathing and heart rate increase to maintain the same oxygen level in your body. This can worsen the symptoms of PF.

Your medical team may suggest a fit-to-fly (hypoxic challenge) test. This is to check that your body can tolerate reduced oxygen on the plane. It’s important to remember that this test alone does not determine if you are fit to travel by plane. It indicates whether your oxygen levels meet the recommended requirements without supplemental oxygen. Your medical team will advise if you are fit for air travel after considering all aspects of your health. On the day of travel, if you are unwell or have an unstable medical condition, you should avoid flying.

What happens during a fit-to-fly test?

• You breathe a mix of gases with similar oxygen levels to the plane cabin.
• You will breathe this gas through a face mask or mouthpiece for around 20 minutes.
• Throughout the test, a healthcare professional will measure the oxygen level in your blood. This is usually done using an oximeter, a small device worn on your finger or ear lobe.If your oxygen levels drop below the recommended level, you will need in-flight oxygen.Your medical team will decide how much oxygen you will need during the flight based on your test results.
• Sometimes, you will need to do an additional test to see how much oxygen is needed. This is a titration test. It involves repeating the fit-to-fly test while breathing different oxygen levels. The healthcare professional carrying out the test will monitor which additional oxygen level brings your blood oxygen above the recommended level.

Some NHS services carry out fit-to-fly tests. Ask your medical team if they can do the test for you. You may have to wait several weeks or months for a fit-to-fly test. You may also need to test at a specific time before travelling. Make sure to arrange the test with your medical team as soon as possible.

If your local NHS service does not do fit-to-fly tests, you can pay for a test at a private clinic. Ask your medical team if they know of any private clinics.

Medical information form

If you require supplementary oxygen during a flight, most airlines will require you to have a signed medical information form to fly. Each airline has its own form, often called a Fit to Fly Certificate or a MEDIF (Medical Information Form). Most forms will have a section for your doctor or healthcare team to complete.

Make sure to check:

• which form must be completed. You can often find this on the airline’s website.
• how far in advance the form must be completed. Some forms must be completed within a specific time frame before travel. Make your doctor or healthcare team aware as soon as possible; they may need to factor in time to complete the form.
• how long the form is valid for. If you travel longer than this period, check with the airline about your options.

Travelling with oxygen by ship

Some ferries and cruises welcome guests with portable oxygen concentrators. Contact the operator to check their policy.

If you are travelling with P&O or Cunard, you will need to email medical@carnivalukgroup.com with:

• A doctor's letter that confirms that you are fit to travel and states your oxygen requirements.
• Confirmation of your travel insurance policy.

They will then be able to discuss your requirements with you and see if they can accommodate them.

Plug sockets on some ships have a lower voltage than at home. Check the voltage that your oxygen concentrator requires and whether the ship can accommodate this.

Oxygen suppliers in the UK

Your home oxygen provider can supply oxygen for travel within the UK. Contact them and your medical team well before your trip to discuss your needs. It may take time for new equipment to be delivered to your holiday accommodation. Your oxygen supplier may also need a new prescription from your medical team before giving you different equipment.

Let your accommodation know that you are bringing oxygen. They may need to liaise with your oxygen supplier to take delivery of equipment before you arrive.

Questions you might want to ask your oxygen provider

• Can you deliver oxygen to my accommodation? Can you guarantee it will be there when I arrive?
• Can you liaise with my accommodation manager to deliver the oxygen?
• How much oxygen can you supply? Will this be enough for my trip?
• What if I have any problems with my equipment?
• Will you collect the equipment?
• Do you have a 24/7 helpline?

Four companies in England provide home oxygen services for the NHS. Each covers a specific geographical area. Your oxygen clinic will organise your oxygen supply from one of the suppliers below:

Air Liquide covers London (0808 143 9991) and South West of England (0808 143 9999)

Baywater Healthcare covers North West England,Yorkshire and the Humber, West Midlands and Wales (0800 373 580)

British Oxygen Company (BOC) covers the East of England, East Midlands and Northern Ireland (0800 136 603)

Dolby Vivisol covers the South East of England, North East of England (0800 917 9840) and Scotland (0800 833 531)

Oxygen suppliers overseas 

UK oxygen suppliers generally do not allow you to take their equipment outside the UK. However, if you own your oxygen equipment, you may be able to use it abroad if your airline or other travel provider allows it.

If you are not taking oxygen equipment with you, you will need to make arrangements for your destination. Make sure to do this before you travel. This may involve liaising with your accommodation for oxygen to be delivered there. Where and how to hire oxygen abroad will vary depending on your destination. Your local oxygen supplier or oxygen service may be able to advise on the process.

If you have a European Health Insurance Card (EHIC) or Global Health Insurance Card (GHIC), this may cover the provision of oxygen. You will need to use a state-authorised oxygen supplier in the country you are visiting. Contact the local health authority in your destination to determine which oxygen suppliers can be used. You can find the health authorities for several EU countries here. You can find advice on foreign travel on the government website. Click on the country you are travelling to for information on accessing healthcare. There is specific advice for Spain.

The European Lung Foundation has a list of overseas oxygen suppliers.

You can also contact private oxygen suppliers such as Oxygen Worldwide, Omega Oxygen and The Oxygen Store.

‍How to plan your holiday with pulmonary fibrosis

Speak to your interstitial lung disease (ILD) team

Before booking anything, speak to your ILD team to check what kind of trips are suitable for you.

Think through the journey

Wherever you plan to go, consider the journey and what you would be comfortable with.

• Is the mode of transport suitable for you?
• How long a journey would be comfortable for you?
• How much control will you have over the temperature and ventilation?
• Can you take breaks when needed?
• How will you manage waiting for public transport and transfers?
• Can you get help with your luggage?

Consider your destination

Your environment

Think about the environment you are travelling to and how comfortable you will be there.

Altitude

There is less oxygen in the air at high altitudes, which can worsen the symptoms of pulmonary fibrosis. Check the altitude of your destination and discuss this with your medical team.

Air pollutant or pollen levels

High air pollution or pollen levels can worsen some people’s pulmonary fibrosis symptoms. Check the weather forecast for your destination.

Very hot or cold weather

Extreme weather can worsen pulmonary fibrosis symptoms. Make sure you know what weather to expect.

The terrain

If you have reduced mobility, consider whether the area is accessible. Are there lots of hills or cobbled paths?

Your accommodation

When booking your accommodation, consider:

• how far you will need to walk from the accommodation to public transport or your car.
• whether there are steps or stairs, and if a lift is available instead.
•  if you can control the room temperature by opening the window, using air conditioning or heating.
• if they can provide a room on the ground floor and close to the front entrance.
• how flexible they can be to meet your needs. For example, can they move the bed closer to the bathroom so you don’t have as far to walk.

Get expert advice

Consider asking a travel agent specialising in accessible or disabled travel.  There are also online forums such as Disability Holiday Guide. If you need medical advice, ask your GP or ILD team.

Travel Health Pro and Fit for Travel have information about staying healthy whilst travelling.

If you are travelling abroad, check the government website for information about the country you are visiting.

Managing expectations

Your expectations

Before you travel, it can be helpful to consider what you will be able to do on holiday. Particularly if you are returning to somewhere you have been before. Think about the planned activities and what you’ll need to enjoy them. This might include:

• Planning fewer activities in a day to manage your energy levels.
• Keeping some days free of activities so you can rest. This might be particularly important after travel days.
• Ensuring there is seating where you’re going.
• Schedule activities for the time of day when you feel your best.

The people you are travelling with

If you are travelling with others, consider how much they know about your day-to-day challenges. It may be helpful to let them know if you have difficulty with certain activities or need to rest more often. If they understand your priorities for the trip and what you need, you can agree on a plan that works for the group. For example, you could plan to stop for a coffee whilst your group go for a walk.

In Barcelona, I was back in the hotel for 3pm to nap, and Angie did some exploring herself before we both went out early for dinner to avoid crowds.

George Vosper. Read more about George and Angie's city breaks.

Get advice from other people with pulmonary fibrosis

Talk to members of your local support group who may have experiences and tips to share.

Things to remember before you travel with pulmonary fibrosis

Take copies of your documents

Print out and take with you (or save on your phone) copies or photos of any relevant medical information. You may need this if you need any medical care whilst away.

This might include:

• hospital letters
• a list of medications
• details of your oxygen prescription
• your GP details
• EHIC/GHIC
• insurance details

Take enough medication

Ensure you take enough medication for your trip and extra in case of delays. Keep your medication in your hand luggage and with you.

Some medications must be taken at certain times. If you are travelling to a different time zone, discuss with your GP, ILD team or community pharmacist how to adjust the timing of your medication.

Some medications can make you need to access the toilet quickly. The National Key Scheme (NKS) allows you to access locked public toilets in the UK using a radar key. Radar keys cost £5 to buy. Several websites can help you find the nearest public toilet, including The Great British Public Toilet Map.

Get a European/Global Health Insurance Card

Most people living in the UK can apply for a free European Health Insurance Card or Global Health Insurance Card. These cards entitle you to access state-funded healthcare in certain countries in Europe. You can only access medically necessary care which cannot wait until you return to the UK. Not all services will be free: if local residents pay a fee, UK visitors will also have to.

The GHIC replaced the EHIC when the UK left the EU. If you have an EHIC, this is valid until the expiry date on the card. Once it expires,most people will need to apply for a GHIC. The EHIC is still available for certain people. Read more about who can apply for which card on the NHS website and the government website.

The EHIC or GHIC is not insurance and will not cover private medical care or the cost of returning home after illness or injury. You should still take out full insurance for yourself and anyone you travel with. You must declare all relevant medical information. You might also want to consider the level of cancellation cover should you be too ill to travel.

Vaccinations

Depending on your destination, you may need additional vaccinations before you travel. Check this well in advance.

Check the vaccine recommendations for individual countries here.

‍Ian and Dorothy’s story

Ian and Dorothy, members of Newcastle PF Support Group, have been on several cruises, mostly from Southampton. They normally use a local travel agent to make the trip as stress-free as possible and prefer to travel with the same cruise company.

When booking, we would normally ask for a cabin near to a lift in the middle of the ship. On arrival at the departure hall we head to the Medical Assistance area. I require a wheelchair owing to the fact that you would normally have to use an air bridge to enter the ship, and the staff guide you through the booking-in process and also through security so there is no stress or drama about getting on board.

Excursions can be very tiring so we have found it is better to have a rest day between excursions, and check the tour brochure to see how strenuous they are.

Dining areas are often quite large, so you can request a table near the doors which does not require such a long walk from the lifts and restaurant entrance - this should be mentioned on your booking form.

Just remember everything is optional. Try to be flexible and enjoy the experience!

If you need further help or advice, please don't hesitate to contact us.

Other resources

NHS Fit for Travel

European Lung Foundation