Travelling with scleroderma

Travelling with a chronic illness can be challenging, but many people living with scleroderma find that they are still able to travel overseas and take holidays abroad. Whenever you are planning a trip away, preparation will be essential.

Planning your trip

The first step is to talk to your specialist about your travel plans. They can provide an expert opinion on whether these are advisable, or they may recommend that you wait until your condition settles. It is also a good idea to discuss any vaccinations or special equipment that may be required at the same time.

Ask your specialist for a list of your condition(s) and of all the medications that you are taking. If you avoid taking certain drugs, then this should be noted as well; for example due to allergy or because 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. For comprehensive country-by-country travel and health advice, please visit The Gov.UK website.

Travel insurance

The NHS will look after you if you become ill whilst on holiday in the UK. If you are going abroad, including throughout Europe, taking out comprehensive travel insurance from an underwritten insurance provider is essential. Keep all the documents in one place and ensure that you know in advance the relevant contact details if anything should go wrong.

The following list of travel insurers have been recommended by people living with scleroderma and Raynaud's phenomenon. SRUK does not endorse any of the travel insurance companies listed below, so it is important to research and obtain quotes from several different companies in order to get the best deal based on your circumstances.

Company About Website Contact
MIA Travel Insurance Has experience of insuring different conditions
http://www.miatravelinsurance.co.uk/
0800 999 3333
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
Good to Go
Has been given a good review
https://www.goodtogoinsurance.com/
0330 024 9949
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


Contact the airline before you travel

Talk to your airline well in advance regarding any special requirements you may have; making a note of whom you speak with and the date of the call. Remember to mention any dietary requirements at the same time, especially for longer flights.

If your doctor feels you will need oxygen therapy on board, this will need to be arranged well in advance with the airline, and booked for each leg of the journey. You may even have to take a 'fitness to fly test' before travelling. There are restrictions on flying with liquids, but not tablets.

Remember, if there is a stopover then you will have to leave the aircraft. Some airports are extremely large and many passengers have to cover long distances between checking-in, boarding and customs. If you have difficulty walking or standing for long periods, ask for wheelchair assistance, which as ever must be booked in advance. Remember to check time zones and ensure that medication dosage is appropriate.

Find out more about UK airport services for disabled people here.

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Travelling by train

People living with chronic illnesses often find that rail travel is easier and more relaxing than flying.

If you receive Personal Independence Payments or Disability Living Allowance for mobility at either the higher or lower rate, you will qualify for a Disabled Persons Railcard. This costs £20 for one year and £54 for three years, and will entitle you to one-third off the cost of advance, off-peak and anytime train fares. If you travel with a companion, they receive the same discount as well.

If you have mobility problems when travelling by train you can contact travel assistance, to arrange a buggy to take you from the station concourse to your carriage at larger stations.

Medications

Always ensure that you have enough medications to cover the entire trip – it is only possible to collect prescriptions before you travel. Keep medications secure and easily accessible, and take a copy of each prescription for clearance with customs; as well as in case of emergency.Pack all medications in your hand luggage as there is always the risk of baggage being lost when checked-in to the hold of the aircraft. If you are taking immunosuppressants, extra care should be taken to reduce infection, particularly gastroenteritis that can be linked to some foods.

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Only drink bottled water, avoid unpasteurised foods and anything that looks as if it may not have been hygienically prepared.

Vaccinations

Speak with your healthcare professional about which vaccinations you might need for your trip away - and whether you will be able to have the vaccination at all. Allow plenty of time; it is best to have these conversations before you book the trip whenever possible. Most vaccinations will have to be undergone at least one month prior to your travel date.

For a country-by-country guide to vaccinations, please visit NHS Fit for Travel or the National Travel Health Network Centre.

People who have a long-term health condition such as scleroderma, those who are over the age of 65 and women who are pregnant will fall into a high-risk group for taking vaccinations.This also includes people with rheumatic diseases (autoimmune or otherwise) and anyone on the following drug treatments:

Prednisolone (steroid tablets)
Azathioprine
Mercaptopurine
Methotrexate
Leflunomide
Cyclophosphamide
Etanercept
Adalimumab
Infliximab
Mycophenolate mofetil
Rituximab
Abatacept
Certolizumab pegol
Tocilizumab
Golimumab

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It is important to check with your rheumatologist or rheumatology nurse specialist to see whether your treatment is an immunosuppressant before you book your holiday. If you cannot have the vaccine, then you will not be able to travel safely, and this may also invalidate your travel insurance.

Ask your doctor whether the vaccines you need will have an impact on your medications. If you are on disease modifying anti-rheumatic drugs, immunosuppressants or biological therapies you will not be able to have live vaccines, such as yellow fever. Usually, a live vaccine will only be given if immunosuppressive drugs are stopped for at least three months before the vaccination.

Sometimes live vaccines can be given before immunosuppressive drugs are started, which should then not be for at least two weeks, but preferably four weeks, after you have received a live vaccine.

Live vaccinations must not be given if you have been taking moderate or high-dose steroids for more than two weeks. These drugs must have been stopped for at least three months before a live vaccine can be given.

Travelling with oxygen

When planning to travel, see your specialist and request a letter listing:

  • Your ability to see/hear alarms and respond appropriately
  • When oxygen use is necessary (for the duration or for a portion of the trip)
  • The maximum flow rate
  • Hours required per day
  • The contact details of the provider

There are various types of cylinders on offer. Some have a flow metre that adjusts from two litres to eights litres, while others offer either a low flow of two litres per minute or a high flow of four litres per minute. Always ensure that you have been properly informed of which one you are using.

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.

Check whether your insurance company requires a green card – a document that makes it easier for vehicles to move freely across foreign borders.

Flying with oxygen

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 of 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 or approved. Arrangements can be made in advance and usually at a cost, so it is important to contact your airline with as much notice as possible. Inform them that you require in-flight oxygen and check their requirements, making a note of whom you speak with and the date of the call. 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 these arrangements again 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 (with extra batteries in the pack) which all sit in a trolley. You will also need to carry charging equipment.

It is also important to check the electrical connections in the country you are travelling to. For American, European or international sockets 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; alternatively it is always worth asking for an upgrade prior to boarding.

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 you fly. FREMEC is issued by many airlines and 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.

Find out more about travelling with oxygen from the UK Civil Aviation Authority (020 7379 7311) and on patient.info

Travelling whilst on dialysis

Most people who receive dialysis are still able to travel safely. You should always speak with your healthcare professional before you travel, however if your condition is stable then it is unlikely that they will advise you not to go.

Haemodialysis

Always book your treatments before you go away. If you are travelling to another part of the UK, discuss your plans with your renal unit as early as you can to arrange dialysis as close as possible 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.

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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, although many will charge for the service.

Anyone with kidney disease should declare this as a pre-existing medical condition when applying for travel insurance, and certain cover may be either excluded or very expensive.

Peritoneal dialysis

There are two kinds of peritoneal dialysis:

  1. Automated peritoneal dialysis (APD)
  2. Continuous ambulatory peritoneal dialysis (CAPD)

The basic treatment is the same for each type of peritoneal dialysis. The differences relate to the number of treatments and the ways that these are carried out.

Automated peritoneal dialysis

If you are travelling 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 which must be stored in a dry, clean area away from direct sunlight. Contact them again a day or so before check-in to ensure that everything has arrived.

Travel insurance will not cover APD machines, although it should be possible to arrange cover through your home contents insurance. Keep this with you at all times to prevent loss or damage.

Request a letter from your doctor detailing that the cycler is a medical device that must remain in your possession and that 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, and ensure that the voltage and type of plug and outlet are compatible with your machine.

Continuous ambulatory peritoneal dialysis (CAPD)

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.

A few more handy hints for travel

Here are a few more travel tips from some members of the Raynaud's and scleroderma community:

Travel slowly and if possible, plan a few stopovers on the way.

Remember that air-conditioning on planes can be fierce. If you suffer from Raynaud's wear thin layers to help insulation.

Discuss with your doctor taking an emergency supply of antibiotics if you are prone to recurrent infections.

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Whilst flying, make sure you stretch out by walking from time to time and massage your legs for circulation.

Wear special stockings to prevent leg swelling ('flight socks' or 'TED stockings').

Drink plenty of water, if you are not on fluid restriction, to prevent dehydration.

Consider paying for an early hotel check-in if necessary.

Staying at a hotel within a city centre can be a big advantage. The extra cost can be recuperated on transport and you can easily return to the hotel in the afternoon to rest.

Consider using trains, which are more relaxing than flying.

Be aware that in many overseas hotels the shower is over the bath – check that your room has a walk-in shower rather than a bath for ease of access if you have problems getting in and out of a bath.

Avoid unpasteurised foods, for example brie, feta and blue cheeses if you are on immunosuppressive drugs.

If necessary, check your hotel is DDA compliant (Full Disabled Access).

Travelling is tiring - if you suffer from fatigue, prepare well in advance.

Have fun and enjoy your trip!

Contact the airline before you travel

Talk to your airline well in advance regarding any special requirements you may have; making a note of whom you speak with and the date of the call. Remember to mention any dietary requirements at the same time, especially for longer flights. If your doctor feels you will need oxygen therapy on board, this will need to be arranged well in advance with the airline, and booked for each leg of the journey. You may even have to take a 'fitness to fly test' before travelling. There are restrictions on flying with liquids, but not tablets.

Remember, if there is a stopover then you will have to leave the aircraft. Some airports are extremely large and many passengers have to cover long distances between checking-in, boarding and customs. If you have difficulty walking or standing for long periods, ask for wheelchair assistance, which as ever must be booked in advance. Remember to check time zones and ensure that medication dosage is appropriate.

Find out more about UK airport services for disabled people here.

Medications

Medications

Always ensure that you have enough medications to cover the entire trip – it is only possible to collect prescriptions before you travel.

Keep medications secure and easily accessible, and take a copy of each prescription for clearance with customs; as well as in case of emergency.

Pack all medications in your hand luggage as there is always the risk of baggage being lost when checked-in to the hold of the aircraft. If you are taking immunosuppressants, extra care should be taken to reduce infection, particularly gastroenteritis that can be linked to some foods. Only drink bottled water, avoid unpasteurised foods and anything that looks as if it may not have been hygienically prepared.

Vaccinations

Speak with your healthcare professional about which vaccinations you might need for your trip away - and whether you will be able to have the vaccination at all. Allow plenty of time; it is best to have these conversations before you book the trip whenever possible. Most vaccinations will have to be undergone at least one month prior to your travel date.

For a country-by-country guide to vaccinations, please visit NHS Fit for Travel or the National Travel Health Network Centre.

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