Travel Advice for People with Down's Syndrome and a Heart Condition

Having a family member with Down's Syndrome and a heart condition, whether repaired or not, need not prevent you enjoying a holiday away from home.  There are, however, a number of factors that warrant consideration when you are deciding on your destination and the time of year when you travel.  If you plan your trip in advance to cover any medical, safety and mobility aspects, you should be able to relax and enjoy the holiday when you get there.

Fitness to travel

You should always take medical advice as to the person's fitness to travel.  If they are generally well the GP should be able to advise, otherwise ask their cardiac unit for advice.  You may need to discuss their fitness to fly or undertake a long car or coach journey, and also to establish how well they will cope with extremes of temperature.

Where should you go?

Having received feedback from the GP or cardiologist, you should have a clearer idea of suitable destinations for your holiday, but you might like to keep the following in mind too.

• Children that need carrying always seem a lot heavier when you are hot and tired
• Buggies and wheelchairs are nearly impossible to push on sand or pebbles
• A great holiday can be spoilt by a long difficult journey home

Travel Insurance

This is of course an absolute necessity but you may find that the policy offered by your tour operator will not cover your party and anyway it is worth contacting a few different companies to see who offers the best policy for your requirements and the best price - obviously availability and cost will depend on individual circumstances. Most companies will need full information about the heart condition of the person with Down's Syndrome, and may request a letter from the cardiologist.

WARNING - Some Insurance Companies take on new policies without asking medical questions, relying on a clause in the small print which says that they will not cover pre-existing medical conditions. Please be aware that under such a policy, any claim as a direct or indirect result of congenital heart disease would not be honoured. In such cases it is irrelevant whether you were accepted (without disclosing existing illness) and have paid the premium.

In addition you should be aware that:

• All existing medical conditions must be disclosed and accepted by insurance underwriters for you to be fully covered.
• To travel abroad without Insurance that covers you for pre-existing medical conditions could be catastrophic financially.  For instance, if you had to pay for an Air Ambulance to get you home from Spain you would need a minimum of £8,000.
• If someone is taken ill whilst abroad, the Medical Emergency Service will contact their doctor to check their medical conditions before confirming payment for hospital treatment or repatriation.
• If you have a non travelling sick relative, you may not be covered if you have to cancel or cut short your holiday due to their illness.
• All members of your party should be covered under one policy.  If you split cover because of one person's pre-existing medical condition it will affect the Cancellation cover for the other members of the party.

Down's Heart Group is aware that some companies offer cover for pre-existing medical conditions, although these change so we cannot make recommendations.  You can contact Just Travel Insurance online or by calling 0800 231 5532 and mentioning Down’s Heart Group, they will find you quotes from several different companies, quickly allowing you to compare cost and level of cover provided.  (DHG gets a small commission if you take out a policy as a result).

When talking to an insurance company they may ask you to speak to the Medical Screening Line, this should take about 5 minutes if you have all the information to hand.  They will want details of your dates of travel, destination, date of birth of the person with the heart condition, details of the heart condition, medication and symptoms.

Medical information and supplies

It is a good idea to carry a letter from your GP or cardiologist giving a brief medical history of the heart condition, surgery treatment etc. (even in a different language many terms are easily translated).  You may also like to learn how to say 'they have a heart condition' in the local language or at least have it written down.

Of course you need to make sure that you take an adequate supply of any prescribed medicines, but do check if there are any restrictions on taking them in and out of the UK or the country you are visiting (check with the relevant Embassy or High Commission or the Home Office Drugs Branch).   And always carry them in a correctly labeled container, as issued by the pharmacist or take a doctors letter giving details of the drug prescribed in case you need it to get through Customs.  Keep your medication in your hand luggage so that it is readily to hand if you need it and not at risk if your suitcase goes missing.

Check with the pharmacist about safe travel pills and if you need advice about transporting medication that requires refrigeration.  Also make sure that you confirm that refrigeration will be available at your hotel or accommodation when you arrive - although hotels may have fridges there can be local regulations which prohibit them storing medication in there.

If the cardiologist has advised that oxygen should be available during the flight you will need to arrange this with the airline - if you booked through a travel agent they may be able to do this for you.  Although all airlines carry oxygen for emergencies they will require additional supplies to cover your request, most will make a charge for this regardless of whether you use it or not.  If you will need oxygen on holiday you may be able to arrange for this to be made available locally (see Oxygen Therapy Topic Note).

Before you go

If any regular checks are needed to regulate medication make sure that you arrange tests about two weeks before you travel so that you have time to get the results back and make any necessary adjustments in dosage.

If you require transport at the airport from the departure gate to the plane, call the airline in advance to arrange this.

At the airport

Make sure that you check in on time and advise the check in desk if you have requested any assistance or oxygen onboard.

Pacemakers can set off the security alarms so ensure that you have the pacemaker card with you and show it before you go through security.  The person with the pacemaker will be taken through separately.

When you get there

Ensure that you all drink plenty in a hot climate (particularly the heart patient), utilise several layers of clothing in the cold and watch for poor circulation in fingers and toes, use plenty of sunscreen (remember that scar tissue is vulnerable to burning) and most of all - HAVE A GREAT HOLIDAY!