Helen Mussion, Anne Nicholas, Kevin Webb, Sally Nowell, Staff and Patients at Manchester Adult CF Unit. Jan 2004. Planning a holiday [online].Bradbury Cystic Fibrosis Unit, Manchester, UK. Available from http://www.cysticfibrosismedicine.com
Foreword
Introduction
Planning your holiday
Before booking your holiday
Health Care Abroad
Oxygen
When booking your holiday
Do I need to take out private medical insurance?
Getting ready to travel
Treatment and Medication
Nebulisers and Compressors
Holiday Activities
Documentation
Planning your Holiday Summary
On Holiday
Keeping Well
Treatment and Medications
Food and Drink
Safe Sex
If unwell when on holiday
How do I seek help?
What should I have with me when I see a doctor?
On Holiday Summary
After your Holiday
Clinic Visit
Returning equipment borrowed from the CF centre
After your holiday summary
Foreword
I never had a holiday abroad until I was in my mid-thirties (I am now 44). Then I met my husband, who cannot survive a year without at least a week with the sun on his back. I guess all the preparations put me off holidays, not to mention the amount of medications I have to take with me. However, now this problem is solved – my husband carries a rucksack containing all my medicines on the journey out, and returns home with it full of cheap booze. It is essential to inform your doctor before going on holiday, and to have a flight assessment if you are flying. Extra oxygen may need to be carried on the plane for you, and it is a good idea to check the airline’s policy on oxygen before booking your holiday, as some airlines charge for oxygen, some will provide it without charge, and some won’t carry it at all. When it comes to packing for my holidays, I keep a list of all the drugs, which I have to take, along with my compressor and nebulisers, inhalers etc. The list usually has to be amended each year, but it always helps me in checking that I have remembered everything. Even holidays in Britain require a certain degree of preparation. Out comes the drug list, with items such as salt tablets omitted. Storage of drugs in a fridge can present problems. When staying in a hotel, I usually ask the receptionist if I can leave my Pulmozyme in a fridge. Once it took them about half an hour to find it, as they didn’t know which fridge it was in! However, this usually isn’t a problem if I place the ampoules in an envelope with my name on beforehand. All these preparations are definitely worthwhile, as I haven’t yet – touch wood – been on holiday where I have experienced any problems with my health. I make sure that I do all my treatments (physio and nebulisers) while I’m away – even though I sometimes don’t want to, it really is worth it in the long run. I can then enjoy my holiday, and return home rejuvenated and ready for my next clinic appointment in the best of health.
Sally Ann Nowell
Every
year, all year round the adults from our CF centre are travelling further
afield and for longer periods of time. Getting back safe and healthy is
just as important as arriving. Most of our patients fly to their destination,
to a hot climate and then go wild.
This book, which is based upon our clinical experience of CF patient travel,
is designed to ensure that everyone has a safe healthy holiday, based
upon careful preparation. There is nothing worse than having to cancel
a holiday because the airline does not carry oxygen or on return having
to come straight back into hospital. Occasionally, we have had cries for
help from a CF patient in hospital in a foreign land when we are unaware
they had gone abroad.
We want all our patients to really enjoy themselves on holiday, but we
do not want to worry about you whilst you are away! If you use this book
and consult with us at the CF centre before you travel, you will feel
safer and we will feel happier.
Professor
A.K. Webb (Clinical Director Bradbury Cystic Fibrosis Unit, Manchester,
UK)
Planning
your holiday
We all look forward to our holidays and often start thinking about the next one as soon as we get home. Planning your holiday carefully will help you to have a relaxing and carefree time. As soon as you start thinking about your holiday, talk to your CF Team. They will help you to get the best from your holiday by making sure you are fully prepared.
Before booking your holiday: Many people now take advantage of last minute deals to get a cheaper holiday. If you are thinking about doing this let your CF Team know before you book. They may not be able to arrange everything you need if you only give a few days notice.
Health
Care Abroad: The NHS is easy to use and free.
In most other countries getting treatment when you need it can be an expensive,
and frustrating experience. You need to plan your holiday around your
health care needs.
Health care abroad isn’t always of the same standard as that at
home. Even in some European countries it can be very basic. Please consider
this when deciding where to go, especially if you have been more unwell
lately.
If you think you may need medical advice or treatment on holiday ask your travel agent what’s available before you book. For information on CF Centres world wide try www.access.ch/cfaddresses/current/toc.htm .If you don’t have Internet access ask at your CF centre or ring the UK Cystic Fibrosis Trust 020 8464 7211 who will be happy to search for you.
Pick up a copy of the Leaflet “Health Advice to Travellers” from the Post Office or Benefits Agency. It contains important advice and information. Read it carefully. It also contains Form E111, which when completed and stamped at the Post Office entitles you to receive limited treatment free in around 60 countries. You may have to pay first and try to claim it back later. The E111 is not an alternative to proper medical insurance.
What
if I need oxygen when I’m travelling?
Tell your CF Team before you book so that they can arrange for you to
have a flight assessment. Airlines do not carry spare oxygen for passengers
who may need it. If you need oxygen during the flight this must be ordered
before you fly.
Why do I need a flight assessment?: Oxygen levels on a plane are much lower than on the ground. For most people this isn’t a problem, but for some patients extra oxygen may be needed for use on the plane. The flight assessment will tell us if you need extra oxygen and how much you will need.
What does a flight assessment involve?: Your blood gases will be checked under normal conditions and then under conditions similar to those on a plane. Your CF doctor will then advise you whether or not it is safe for you to fly without extra oxygen and will give you a letter confirming that you are fit to fly for the airline and your insurance company.
If you need oxygen during the flight or holiday abroad we will advise you.
Do I need to take out private medical insurance?: Yes, you need to take out insurance when you book your holiday. You must tell the insurers you have CF and any other related conditions like diabetes. The insurance company will ask for information about your treatment and your oxygen requirements during the flight. Make sure you seek advice about this from your CF Team before you book.
Why do I need medical insurance?: Insurance is for your protection. If you have to cancel because you are ill you will at least be able to claim most of your money back. If you become ill while on holiday it will also cover the cost of treatment abroad and get you back home safely if necessary. Don’t deceive the insurers about your medical condition. If they discover you haven’t been totally honest, your policy won’t cover you.
How much will it cost?: Expect to pay a slightly higher price for insurance. This reflects the higher risk of being ill on holiday for people with CF the cost varies so shop around. Your Social Worker in your CF Team may be able to tell you about companies offering competitive rates. The CF Trust can also help, contact them on 020 8464 7211. At the back of this booklet there is space for you to add useful names addresses and contact numbers.
Treatment
and Medication: Will I need treatment before
I go on holiday?
You may need some treatment before you go on holiday to ensure you are
at your best when you travel. We will give some reserve oral antibiotics
to take with you, remember to ask for instructions about when you should
take them. It is important to stay well for the journey home. You need
to tell a doctor before you go so that any treatment can be arranged.
Do I need to have vaccinations?: Check with your travel agent or GP surgery what vaccinations are required for the country you intend to visit.
How much medication should I take?: Make sure you have more than enough medication for your holiday in case your return is delayed for any reason. Although you can pack the bulk of your medication in your luggage, make sure to pack anything you need for your journey in your hand luggage – again more than enough, in case of delay. Some people prefer to pack all their medication in their hand luggage in case their luggage is lost.
Nebulisers
and Compressors: What nebulisers do I need
to take on holiday?
Nebulised bronchodilators and Dnase should always be continued on holiday.
Nebulised antibiotics can sometimes be replaced with oral antibiotics.
Please ask the doctor if this is possible.
Which compressor should I take with me?: You can take your own compressor on holiday. If you think you need to take any of your nebulisers in flight or whilst you are away from your accommodation you will need to borrow a travel compressor. These can be operated from a battery or car cigarette lighter as well as mains electricity. If you are travelling abroad you will need to take a travel adaptor with you. Please check with your physiotherapy department or the CF nurse specialist that the voltage of the compressor is compatible with the supply in the country you are visiting.
How can I arrange to borrow a travel compressor?: Your CF centre may have a loan service for travel compressors. There may be a limited supply, so please tell one of the CF physiotherapists or specialist nurses as soon as you know your holiday dates.
How should I pack my nebuliser equipment and drugs?: Compressors should be carried as hand luggage. You should also carry some of your nebulised drugs as hand luggage, in case you need to take them during the journey or in case of delay.
If you are planning to take part in any activities such as diving or skiing, please discuss these with your CF Team. They can advise you if these activities are safe for you, taking into account your bone status, if a recent pneumothorax, sinuses etc.
Do
I need to take any documentation from the CF centre?
You need the following documents, which you should collect from your CF
centre before going on holiday;
• Fitness to fly letter - This will prevent you from being stopped at customs for carrying medication, nebulisers and needles etc
• A letter to take to any healthcare professional which describes the common illnesses in CF together with:
• Your CF centre’s protocol - If you are unwell in a country which does not have much experience of the treatment of CF, they can refer to the protocol to know what treatment to give you.
• Remember to keep your CF Centre telephone numbers, including emergency numbers, with you at all times.
Planning your Holiday - Summary
Before booking your holiday:
• Tell the CF Team before you book your holiday.
• Obtain a copy of “Health Advice for Travellers”, from the Post Office, and apply for an E111 if appropriate.
• Make sure that your holiday resort has facilities that match your health care needs.
• Ask your CF Team about a flight assessment.
• If you need oxygen during your flight it is essential to arrange it before you book your holiday. (see attached Oxygen Sheet)
• At the time of booking your holiday, take out proper medical insurance and tell the company all about your Cystic Fibrosis.
• Organise your pre holiday treatment with your CF Team.
•· Discuss with your CF Team if you are planning any adventurous activities.
•· Plan to take some extra medication in both your main and hand luggage in case of delays.
•· Discuss your nebuliser requirement with the CF Team and arrange to borrow a travel compressor if needed.
On Holiday
The planning is over, you have arrived safely, now you can enjoy yourself!
Treatment
and Medications: How
much treatment do I need to do whilst on holiday?
You will have discussed this with your CF Team before going on holiday.
It is vital that, whilst on holiday, you continue the treatments that
you have been advised to do. This is so that you stay well and have a
great time.
How
should I store my medication?: Try to keep all your medication in
a cool place. This is particularly important for insulin and pancreatic
enzymes. If you need to store drugs in a fridge and don’t have one
in your room, ask reception staff if they can do this for you. Remember
to put your drugs in a labelled envelope.
Don’t keep drugs in a glove compartment or car boot, as they will
get too hot/cold.
Oral Antibiotics:If you have been given oral antibiotics to take, please follow the instructions you have been given carefully. If you aren’t sure, or think you may forget, please ask for them to be written down.
I
have been advised to take oral antibiotics do I need to be careful of
the sun?: Some of these can cause you to burn in the sunshine e.g.
Ciprofloxacin, Minocycline, Rifampicin. Use high protection sun creams
(it might be advisable to try them before you travel so you know that
they suit your skin) and cover up as much as you can.
Don’t forget that oral antibiotics might interfere with the oral
contraceptive pill.
Do I need to take salt tablets?: Even if you don’t usually take salt tablets, you will need to take them on holiday if you are staying in a hot country. They replace the salt you lose by sweating. Even in the UK when the weather is hot, you need to take salt tablets. Salt tablets should be swallowed whole with a full glass of drinking water. Please follow the instructions you have been given for dosage.
What should I do if I get dehydrated?: If you become dehydrated this affects your chest and also causes constipation. It is important to avoid becoming dehydrated by taking plenty of fluids (three litres/day) and your salt tablets. If you do become dehydrated and /or have diarrhoea and vomiting, use dioralyte to replace the sugars, salts and fluid.
• Mix a sachet in a tumbler (200ml) of drinking water. Cordials/squash can be added.
• Doses for adults are 1 or 2 sachets after each loose motion. If you are sick, as well, drink the Dioralyte in small amounts.
• If you don’t improve after 12 hours, you need to contact a doctor.
For most people this is an important part of enjoying your holiday. Here are some suggestions to help ensure you enjoy the food and drink:
• Always wash your hands before handling food and particularly after using the toilet.
• Avoid any foods that are not freshly cooked.
• Ensure all food is cooked right through and still hot.
• Don’t purchase food from unreliable sources e.g. street stalls, kiosks
• Avoid foods that could have been in contact with insects, such as flies.
• Wash fresh fruit and vegetables thoroughly.
• Avoid any unpasturised products e.g. unpasteurised milk and yoghurts, and cheeses such as Brie.
What do I do if I get food poisoning?: Food poisoning can develop after a few hours or a few days. The symptoms are nausea, vomiting and/or diarrhoea. If you are affected, take plenty of fluids to prevent dehydration. If you are vomiting or have diarrhoea take Dioralyte as described on page 8. If you have problems with taking fluids seek medical help.
How many pancreatic enzymes do I need to take?: It’s hard to tell how much fat foods contain especially if it’s something you’ve not eaten before. Foods that have been fried, contain cheese, butter, fatty meats etc, or have a creamy sauce or oily dressing will be high in fat. If you have any questions about your pancreatic enzyme replacement therapy please speak to a CF dietician before you go on holiday.
Is the water safe to drink?: If you aren’t sure about the safety of the water supply ask the hotel/ company representative if it is safe to drink. If you are uncertain, then either boil the water before drinking or sterilise it with special tablets. Better still buy bottled water. Make sure that the bottled water is in sealed containers. Remember this applies to water not just for drinking but for brushing your teeth and preparing food.
• Avoid ice cubes in drinks unless you are sure they are from treated water.
• Drinks in sealed bottles and packs and those made with boiled water are safe to drink.
Does it matter how much alcohol I drink when on holiday?: Alcohol causes you to become dehydrated. It is important to compensate for this by having at least 3 litres a day of non-alcoholic drinks. Even when on holiday it is advisable to not to binge drink.
It is important to practice safe sex whilst on holiday. If you need advice Family Planning Clinics can provide information and condoms free of charge.
If you are unwell when on holiday
How do I seek help?: If you need to ask for some advice about your health, remember that you have a number of options:
• Ring your CF centre (make sure that you have both the clinic and emergency numbers).
• Contact the number on your Medical Insurance and ask them for advice on finding a doctor or a hospital.
• If you are travelling with a company that provides a courier or representative in your resort, contact them. They can usually speak the local language and have knowledge of medical facilities and doctors.
• Contact the local hospital or Medical Centre.
What should I have with me when I see a doctor?: Take the items listed under “Documentation” with you as well as all your medication. Please ask them to contact your CF centre for advice. Remember to take your passport, insurance documents and E111 (have photocopies of this as you may have to give one to the doctor) If you pay for anything always obtain a signed receipt.
• Keeping well on holiday
• Remember to keep doing your regular treatments.
• Store your medications appropriately.
• Be careful when out in the sun.
• Take your salt tablets.
•Be aware of food and water safety.
• If unwell when on holiday
• Keep all health documentation in a safe place and have it handy when you ask for help, including all contact numbers. (Page ** .)
• Make sure you know who to contact; such as travel company courier, insurance company helpline, CF centre, or local doctor/clinic.
•
If you are asked to pay for anything obtain a signed receipt.
Your CF Team will be keen to hear of your holiday experiences and will look forward to seeing your photographs!
Clinic Visit: Please ring your CF centre as soon as possible if you are unwell after your holiday, so you can start on the appropriate treatment. If you have any symptoms that persist beyond a week of returning, e.g. diarrhoea, you need to contact your CF centre as soon as possible. They may need to carry out specific tests from your blood, urine or faeces to check that you do not have any of the illnesses that may be uncommon in the U.K.
Returning equipment borrowed from the CF centre: All borrowed equipment should be returned as soon as possible, as there may be a waiting list.
• Ring the CF centre as soon as possible if you are unwell following your holiday.
• Return all borrowed equipment.
• Remember to bring in your holiday photos!
Useful contact addresses and telephone numbers:
Cystic
Fibrosis Trust
11 London Road
Bromley
Kent
BR1 1BY
Tel 020 8464 7211
Fax 020 8313 0472
www.cysticfibrosismedicine.com