Looking after yourself
Information on managing common symptoms
Travelling with a chronic illness can be challenging, but many people living with scleroderma manage to take overseas trips and holidays successfully.
The first port of call when planning your overseas trip is to visit your specialist to discuss your plans. They will be able to give you an expert opinion on whether you should travel. If necessary, your specialist may recommend that you wait until your condition settles.
It's a good idea to discuss any vaccinations or specialist equipment that may be required at this appointment.
Ask your specialist for a list of your condition(s) and the medications that you are taking. If you avoid taking certain medications, then also request a list detailing why, for example because of allergies or because you know that one drug interferes with another. Pack this information and take it with you, in case you need to share it with a health professional overseas.
The Gov.UK website features comprehensive country-by-country travel and health advice, so it's worth checking this while you're planning your trip.
The NHS will look after you if you get ill while on holiday in the UK.
If you are in Europe, the European Health Insurance Card (EHIC) entitles you to free or reduced-cost hospital treatment. This card is not an alternative to travel insurance.
Using an insurance provider is recommended as they are experts in their fields and can help you complete the application process.
Keep all your documents in one place and ensure you know in advance whom to contact if you feel unwell.
The following list of travel insurers is a collection of recommendations by people living with scleroderma and Raynaud's phenomenon.
SRUK does not endorse any of the travel insurance companies listed and we suggest you research and seek quotes from different companies in order to get the best cover for you.
|Medi Quote||Extend cover for people with pre-existing conditions||http://www.mediquote.com/||0870 890 2991|
|J D Travel||Covering all types of condition||http://www.jdtravelinsurance.co.uk/||0844 247 4749|
|Columbus Direct||Insuring pre-existing conditions||http://www.columbusdirect.com/travel-insurance/preferential||0845 888 8893|
|Freedom Travel||Insuring pre-existing conditions||http://www.freedominsure.co.uk/||0122 344 6914|
|SAGA||Cover most pre-existing medical conditions. No upper age limit||http://www.saga.com/||0800 015 0757|
|Get My||Online cover for pre-existing conditions||http://www.getmy.com/||0845 026 2441|
|Stay Sure||Specialist insurance for over 50s||http://www.staysure.co.uk/||0844 692 8444|
|All Clear Travel||Specialist cover for travellers with pre-existing conditions||http://www.allcleartravel.co.uk/||0845 250 5350|
|Flexi Cover||Provide optional cover for over 2,000 conditions||http://www.flexicover.co.uk/||0800 093 9495|
|Insure for All||Has experience of insuring different conditions||http://www.insureforall.com/||0800 082 1265|
|MIA Insurance||Has experience of insuring different conditions||http://www.miatravelinsurance.co.uk/||
0800 999 3333
|Good to Go||Has been given a good review||https://www.goodtogoinsurance.com/
||0330 024 9949
There are restrictions on liquids, but not tablets, when travelling.
Discuss with the airline any special requirements you need before boarding the aircraft. If your doctor feels you need oxygen therapy on the flight, this will need to be arranged well in advance with the airline. You may need a 'fitness to fly test' to ensure you are safe to fly.
Speak to the airline in advance if you have any special dietary requirements.
Remember, if there are any stopovers then you will have to get off the plane. Some airports are often very large with long distances between checking-in, boarding and customs. If you have difficulty walking long distances, your airline should be able to provide wheelchair assistance. You will need to speak to them to ensure this is booked in advance.
Oxygen will need to be organised and booked for each leg of the journey.
Check time zones and ensure limit of medication dosage is appropriate.
Find out more about UK airport services for disabled people.
Many people with scleroderma find rail travel more relaxing than flying.
If you get DLA payments for mobility at the higher or lower rate you can qualify for a Disabled Persons Railcard. It costs £20 for one year and £54 for three years. Once you have the card, you are entitled to a third off advance, off-peak and anytime train fares. You don't have to travel with a companion but if you do, they'll get the same discount as well.
If you have mobility problems when travelling by train you can get travel assistance, which can provide a buggy to take you from the station concourse to your carriage at large stations. Just call 08457443366 and give details of your journey, preferably with 48 hours notice.
Ensure that you have enough medications for your entire trip – it is only possible to collect your prescriptions before you travel.
Keep them secure and easily accessible.
Take a copy of each prescription for clearance with customs, and in case of emergency.
Pack all medications in hand luggage, as checked luggage may get lost.
If you're taking immunosuppressants, extra care should be taken to reduce infection, particularly gastroenteritis that can be linked with some foods. Only drink bottled water, avoid unpasteurised foods and keep your hands clean.
To work out which vaccinations you might need for your trip away - and whether you will be able to take the vaccination at all - speak with your healthcare professional. Allow plenty of time. If possible it's better to speak to your doctor before you book the trip. And remember that most vaccinations must be taken at least one month in advance of travel.
People who have a long-term health condition such as scleroderma, who are over the age of 65, or who are pregnant fall into a high-risk group for taking vaccinations.
This includes people with rheumatic diseases (autoimmune or otherwise) and those on the following drug treatments:
It is important to check with your rheumatologist or rheumatology nurse specialist to see whether your treatment is immunosuppressive before you book your holiday. If you can't have the vaccine, you won't be able to travel safely.
Ask your doctor whether the vaccines you need will have an impact on your medications. If you are on disease modifying anti-rheumatic drugs, immunosuppressed or biological therapies you won't be able to have live vaccines, such as yellow fever.
Normally a live vaccine would only be given if immunosuppressive drugs are stopped at least three months before the vaccination.
Sometimes live vaccines will be given before immunosuppressive drugs are started. Immunosuppressive drugs should not be started for at least two weeks, preferably four weeks, after you have been given a live vaccine.
Live vaccination must not be given if you've been taking moderate or high- dose steroids for more than two weeks. Moderate or high-dose steroids must be stopped three months before a live vaccine can be given.
When planning to travel, see your specialist and request a letter listing:
The types of cylinders on offer vary. Some cylinders have a flow meter that adjusts from two litres to eights litres, while others offer either a low flow two litres per minute or a high flow four litres per minute. Make sure you know what one you have by asking your healthcare provider.
Car travel with oxygen
Car travel cylinders should either be strapped into a spare seat or put securely behind the front seats.
A concentrator can also be used for car travel.
Make sure the car you are travelling in has been checked and/or serviced before you travel.
Check whether your insurance company requires a green card – a document that makes it easier for vehicles to move freely across foreign borders.
In the UK, Blue Badges allow drivers of passengers with severe mobility problems to park close to where they need to go. The UK has agreed informal parking arrangements with other European Union (EU) countries, so you may be able to use the Blue Badge abroad. Find out more about using a Blue Badge abroad.
Firstly, check with your physician to make sure it is safe for you to travel by air. A High Altitude Simulation Test (HAST) replicates the cabin conditions during a flight when the oxygen concentration drops from 21% to 15%. During this test it is determined if an individual will require additional oxygen to be comfortable and safe during the flight. For those who are already on oxygen, a flow rate one litre per minute above what is normally used is generally recommended for flying. For individuals not normally requiring oxygen, but who have lung disease, ask your specialist if a HAST is required.
Each airline is particular about what equipment is needed/approved. Arrangements can be made with the airline prior to the flight at a cost, contact the airline you want to use as far in advance as possible. Inform them that you require in-flight oxygen and check their requirements. Find out what flow they can deliver and if they provide a mask or nasal cannula. Some airlines only provide a mask but will allow you to provide your own cannula. Confirm the arrangements 48 hours prior to your flight.
Find an oxygen provider to purchase a portable concentrator, which can work in three ways: from a cigarette lighter socket; from mains power; and using batteries (extra batteries in pack) which all sit in a trolley. You will need to carry charging equipment.
Find out what the electrical connections are in the country you are travelling to. Some have USA, European or international sockets so you may need an adaptor.
Lightweight battery-operated portable oxygen concentrators (POCs) are now popular and many airlines allow their use on board.
Ask for a seat close to the toilet, as you will not be able to take your oxygen in with you. If you do require extra space you may want to consider flying business or first class.
You cannot check-in oxygen containers with baggage, but most airlines will allow you to carry an empty portable tank either on board or with checked hand luggage. However, always check what your airline will allow well in advance of travel.
If you are a regular flyer then you can obtain a frequent traveller's medical card (FREMEC). The card records important medical information and replaces forms otherwise needed for each flight. Once registered, you can receive assistance whenever flying. FREMEC is issued by many airlines. The length of time it is valid for depends upon the severity of your condition. If you fly with a different airline then you should check if it is still valid.
Most people who receive dialysis are able to travel safely. You should always speak with your healthcare professional before you travel. If your health is stable then it is unlikely that they will advise you not to go.
You can still enjoy your holidays providing you book your treatments before you go away. If you are travelling to another part of the UK then you should discuss your plans with your renal unit as early as you can so you can arrange dialysis at a unit close to your destination. You will need to contact them and agree for the prescriptions and clinical letters to be sent over for the duration of your holiday.
In many parts of the country, a lack of facilities can restrict some of the locations you can visit, but Dialysis Freedom (01509 808668) run a holiday dialysis 'swap' scheme to help with dialysis availability in other areas.
If you are going abroad, it can be easier to arrange dialysis at short notice as some overseas centres have more facilities, although holiday destinations may get booked up early.
The Global Dialysis website has a database of dialysis units across the world. Many of these units may charge a fee.
Anyone with kidney disease should declare it as a pre-existing medical condition on standard insurance application forms. It may exclude you from some policies.
There are two kinds of peritoneal dialysis:
The basic treatment is the same for each, however, the number of treatments and the way the treatments are done make each method different.
If you are traveling by plane or driving long distance, you can arrange to have fluid and supplies drop-shipped to your destination. Make sure you plan well in advance as the delivery for some destinations can take up to eight weeks.
If you are staying at a hotel, call ahead to let the staff know you are expecting important medical supplies. Mention that the shipment will include several heavy boxes. Tell them the boxes need to be stored in a dry, clean area away from direct sunlight. Then call again a day or so before check-in to make sure everything has arrived.
None of the holiday insurance companies will provide cover for APD machines. It should usually be possible, however, to arrange cover through the insurance company you use to cover household contents. Avoid checking it in as baggage on an airline flight. Keep it with you at all times to avoid losing it or it getting damaged.
Request a letter from your doctor detailing that the cycler is a medical device that must remain in your possession and the bags of solution, should you ever have to fly with them, are for medical treatment and must not be opened.
The cylinder may not always fit into overhead airplane compartments because the overhead bins vary in size. Check with the airline before you travel.
At your destination, check that there is a grounded electrical outlet close enough to the bed for the machine to be used. Check that the voltage and type of plug and outlet are compatible with your machine.
CAPD is continuous and machine-free. It is done whilst you go about your normal routine. If you are on CAPD then this type of dialysis works by gravity. You may need to hire a drip stand or improvise so that the bag is elevated on a hook.
Here are some simple tips for travel from people living with Raynaud's and scleroderma: