Planning your trip
Speak to your interstitial lung disease (ILD) team.
Before you book anything, speak to your ILD team to check what kind of trips would be 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 accessible 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 assistance with luggage?
- Travel by car
If you’re planning to travel by car, there are several schemes available for people with disabilities to help make your journey easier. The blue badge scheme gives you access to parking that is closer to your destination. Your blue badge can also be used abroad. Motability leases cars, wheelchair-accessible vehicles, scooters and powered wheelchairs to people with disabilities.
- Travel by bus or coach
If you are travelling abroad, check with the operator when you book.
- Travel by train
Most modern trains in the UK and Europe are accessible to wheelchair users and people with reduced mobility.
Take a look at the National Rail website if you’re travelling within the UK. If you’re travelling abroad, check with the operator when you book.
- Travel by ship
Ferries and cruises departing from the UK or EU should be accessible for people with disabilities or reduced mobility. Read more about travelling by ship with a disability.
- Travel by plane
The European Lung Foundation has information on travelling by air when you have a lung condition, including fit to fly tests and oxygen. Read more about taking oxygen on holiday further down this page.
Similarly to other forms of public transport, people with disabilities have a right to certain services at airports. Check with the departure and arrival airports and the airline when you book.
Airlines require that you travel with someone if you need help with any aspect of care including feeding, breathing, taking medication, or using the toilet. The person travelling with you will usually have to buy their own ticket, but the airline should sit you together where possible.
Consider your destination
Think about the environment that you are travelling to and how comfortable you will be there. High altitude, high air pollutant levels and very hot or cold weather can make symptoms of PF worse. If you have reduced mobility, consider whether the area is accessible. Are there lots of hills or cobbled paths?
Find out as much as you can about the accommodation, what facilities are available, accessibility, and how flexible they can be to meet your needs.
Get expert help
Consider asking a travel agent who specialises in accessible or disabled travel, or disability forums such as Disability Holiday Guide. If you need medical advice, ask your GP or ILD team.
If you are travelling abroad, check the government website for information about the country you are visiting.
Ask others like you
Talk to members of your local support group[link] who may have experiences and tips to share.
Ian and Dorothy’s story
Ian and Dorothy, members of Newcastle PF Support Group, have undertaken a number of 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.
Just remember everything is optional. Try to be flexible and enjoy the experience!
‘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!’
Getting ready to go
Save your documents
Print out and take with you (or save on your phone) copies or photos of any relevant medical information. This might include hospital letters, list of medications, details of your oxygen prescription, your GP details, EHIC/GHIC and insurance details - just in case you need healthcare while you are away.
Make sure you take enough medication (and spares!). Always keep your medication in your hand luggage and with you. If you need to take any liquid or gel medications that are over 100ml, you’ll need either a letter from your GP or a copy of your prescription.
If your medication must be taken at certain times and you are travelling to a different timezone, discuss with your GP, ILD team or community pharmacist how to adjust the timing of your medication.
Some medications contain controlled substances and you might need a license to travel with them. Check with the relevant foreign embassy if you need a license for the country you are travelling to.
Some medications may mean that you need to access the toilet quickly. The National Key Scheme (NKS) allows you to access locked public toilets in the UK using a key, called a radar key. Radar keys are £5 to buy. There are several websites that can help you find the nearest public toilet, one of which is The Great British Public Toilet Map.
It’s important to get full travel insurance for a holiday overseas. Competitive travel insurance prices can be difficult to find when you have a diagnosis of PF but there are some specialist companies that have policies for people with medical conditions.
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 care that is medically necessary and 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 repatriation or private medical care, so you should still take out full insurance for you 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.
If you need oxygen at home, you will need to arrange a supply at your destination.
If you’re holidaying abroad, the provision of oxygen varies but you’ll probably need to hire it.
If your holiday is in the UK, you can contact your home oxygen supplier to arrange for your usual equipment to be provided. The supplier will need to know your destination address, contact number and date of travel. You may need different equipment from usual – so it’s worth discussing your plans with your medical team.
Try not to leave it to the last minute to arrange your oxygen. It can take several weeks to get everything in place.
Always make sure you have details of your oxygen prescription with you.
Fit to fly test
Air cabins are pressurised and the level of available oxygen is reduced. This means that your breathing and heart rate increases to maintain the same level of oxygen in your body. This can make the symptoms of PF worse.
To check that your body is able to tolerate this, your medical team may suggest a fit to fly (hypoxic challenge) test during which:
- You breathe a mix of gases that simulates cabin oxygen levels.
- The level of oxygen in your blood is measured. This determines whether you would need in-flight oxygen.
The test tells you whether you can maintain oxygen levels under flight conditions, but it does not tell you whether you are overall ‘fit’ to fly. On the day of travel, if you are unwell or have an unstable medical condition, you should avoid flying.
Travelling with oxygen
If in-flight oxygen is recommended, check the airline’s policy and find out what paperwork they need. Most airlines will be able to advise on what special assistance is available.
Some ferries and cruises welcome guests who have portable oxygen concentrators. Get in touch with the operator to check their policy.
If you are travelling with P&O or Cunard, you will need to email firstname.lastname@example.org 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.
Oxygen suppliers in the UK
There are four companies in England that provide home oxygen services for the NHS. Each covers a certain 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)
Hiring oxygen overseas
Where and how to hire oxygen abroad will vary depending on your destination. Your local oxygen supplier or oxygen service can advise.
We don’t endorse or have links with any of the companies mentioned in this article. Please make sure to research your specific situation as services vary.
If you need any further help or advice, don't hesitate to contact us.
Information provided by Action for Pulmonary Fibrosis (APF) is not a substitute for professional medical advice. It’s intended as general information only. APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on actionpf.org.