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Holidaying with pulmonary fibrosis

Everyone loves a holiday, but when you’re living with pulmonary fibrosis, it can take more preparation than it used to. If you need oxygen, it’s worth thinking through how this will affect your holiday.

Planning ahead

Holidays are to be enjoyed. Focussing on what you CAN do and being realistic about what is manageable can help set realistic expectations. Being prepared – planning ahead and finding out as much as you can about your trip can help ease anxiety before you go.

Here are our five tips for planning your holiday:

1. Think through the journey

Wherever you plan to go, consider how long a journey you can manage, whether you need to move around, how you will manage connections and whether you can get assistance with luggage and transfers. If you’re planning to go by plane, you’ll also want to consider whether you can manage the flight. There’s more information about this below.

2. Consider your destination

Will the altitude or weather affect your breathing? Are there a lot of hills where you are going? Find out as much as you can about the accommodation, what facilities are available, accessibility and how flexible they can be to meet your particular needs. You’ll also want to make sure you have a supply of oxygen if you need it. Read more about this below.

3. Get expert help

Consider travel agents specialising in accessible or disabled travel and seek advice from disability forums such as www.disabilityholidaysguide.com, www.disabledholidayinfo.org.uk, www.ageuk.org.uk and www.disabledinfo.co.uk. If you need advice that’s tailored to you, talk to your doctor or nurse well ahead of your planned trip.

4. Ask others like you

Talk to members of your local Support Group who may have experiences and tips to share. There’s a story below about a couple’s experience on a cruise.

5. Save your documents

Print out and take with you (or save on your phone) copies or photos of any relevant medical information: hospital letters, list of medications, details of your oxygen prescription, your GP details, EHIC and 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.

Insurance

It is important to get full travel insurance for a holiday overseas. Competitive travel insurance can be difficult to find when living with pulmonary fibrosis. There are specialist companies that provide insurance for disabled and older people. Shopping around and using the phone rather than just buying online might result in more success.

Many people use the Action for Pulmonary Fibrosis facebook or twitter accounts to find out recent deals found by other families. The British Lung Foundation can provide useful advice.

European Health Insurance Card

Until the end of 2020, the European Health Insurance Card (EHIC) is free for UK and EU citizens and entitles you to all medically-necessary treatment - but if local residents have to pay a fee, so do UK visitors.

From 2021, the agreement will move to individual arrangements with European countries and might mean you need to pay for treatment in full. You can find out more about health care abroad here

The EHIC 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 may also want to consider the level of cancellation cover, should you be too ill to travel.

Oxygen

If you need oxygen at home when at rest, you will need to arrange a supply at your destination. Always make sure you have details of your oxygen prescription with you.

If you’re holidaying abroad, 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, a contact number and dates. 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.

Fit to fly?

Air cabins are pressurised to the equivalent of 6,500-8,000ft altitude, and the level of available oxygen is reduced. This means that your breathing and heart rates increase to maintain oxygen delivery. If you have PF you may experience increased breathlessness, discomfort and a blueness to fingertips and lips.

There are risks to flying with a lung condition. You should discuss the flight with your medical team. They may suggest a hypoxic challenge test during which:

  • you breathe a mix of gases which simulates cabin oxygen levels
  • oxygen saturations are measured to determine whether you would need inflight oxygen is needed
  • the test tells you whether you can maintain oxygen levels under flight conditions, but it does not tell you whether you are ‘fit’ to fly.

If inflight 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.

On the day of travel, if you are unwell or have an unstable medical condition, you should avoid flying.

For more about flying with oxygen visit the European Lung Foundation www.europeanlung.org  and the European Federation of Allergy and Airways Disease

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 treatment clinic will organise your oxygen supply from one of the suppliers below:

Air Liquide

0808 143 9991 for London

0808 143 9992 for north west

0808 143 9993 for East Midlands

0808 143 9999 for south west

Baywater Healthcare: covers Yorkshire and Humberside, West Midlands and Wales (0800 373 580)

BOC: covers the east and north east of England and Northern Ireland (0800 136 603)

Dolby Vivisol: covers the south of England (0800 917 9840)

Hiring oxygen overseas

Provision of oxygen abroad varies but usually needs to be hired. Your local oxygen supplier or oxygen service can advise. Don’t leave it to the last minute to arrange oxygen as it can take several weeks to get everything in place.

Healthcare in Spain has information about getting oxygen therapy in Spain. You can also visit private oxygen suppliers Oxygen worldwide and Omega oxygen.

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.

‘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!’

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