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Travelling as a GUCH Patient

GUCH patient and The Somerville Foundation volunteer Sophie has travelled extensively and is passionate about seeing the world. She has developed a positive, practical approach to planning holidays and here, with the help of some of our members who kindly share their experiences, she explores some of the issues, and busts some of the barriers, that can crop up when planning a break away (don't forget your toothbrush..!).

It's easy for dreams of holidays and adventures to carry us away from the rainy climates of Britain, and with the summer fast approaching, many of us are probably gearing up for a week or two away (or longer, if you're lucky!). As a GUCH patient, it's important to consider how to be as safe as possible whilst allowing yourself to have fun and experience new things. Don't let your heart condition hold you back - just be careful and sensible about how you go about planning your trip and then sit back, relax, and enjoy!

Check with your cardiology team before booking your trip. Your Cardiac Nurse Specialist will be able to offer advice and speak with your cardiologist if any particular information is needed.

Although some of us are more confident and able travellers than others, there are many things which universally apply, primarily: travel insurance! Even if your health is entirely stable, you cannot foresee accidents or other incidents which may put you at risk.

Try to ensure your insurance runs for a couple of days after the expected end date of your holiday - delays due to airline faults or natural disasters are unpredictable. I got stuck in a New York airport for almost a week during the 2010 Iceland volcano eruption, and needed hospital treatment after developing a sickness bug from overcrowding in the airport. Who could have predicted that?!

It is also a good precaution to book separate insurance should you be travelling with a group or organisation who are already covered (for example, if you are going away on a school trip you should consult the teacher organising it on whether you will be covered or not). Even if the treatment you may need is entirely unrelated to your heart condition, most insurance companies won't cover medical costs if they discover you have undeclared conditions, as your premiums are normally higher. Look into the extras companies offer - air ambulance service and other such things are advisable, particularly for camping holidays or patients with regular difficulties.

Travel insurance can be quite expensive, so it's best to look around in advance - but don't be deterred; it's not worth taking the risk. The Somerville Foundation can advise you on some travel insurance companies that have previously offered a good service to GUCH patients. Their travel insurance leaflet is available to download from their website, or you can contact their help services for more information.

Take your GUCH passport with you if you have one, or get one from The Somerville Foundation office for your cardiologist or Cardiac Liaison Nurse to complete for you. Try to bring a photocopy of your most recent outpatient's letter and ECG - anything to show to doctors in case you need treatment, however minor that treatment may be.

Alternatively, look into getting medical jewellery which can be a discreet and stress-free way to ensure there is always evidence of your conditions, should problems arise. MedicAlert is one of the better -known brands and offers subscription for twelve months at a time, but other companies are out there too.

Be sensible. If you want to enjoy a cocktail or two whilst away then that's your prerogative. But be mindful not to go overboard. Try to be aware both of where your drink is, and where it has come from (who got it for you, etc.). It is incredibly easy to have your drink spiked, and consequences can be extremely dangerous, even fatal. For those of us with heart conditions, the risks are even greater, as many of the drugs used for spiking can alter heart rates and rhythms. As well as spiking risks, excessive drinking can potentially lead to dehydration, subsequent palpitations, sickness, trips and falls which for some patients could have serious health implications.

Name of Airline

Documentation

Charge

Airline

Supplementary

Oxygen

Own Oxygen

Ryanair

www.ryanair.com/en

Request needed 7 days prior to travel Therapeutic Medical Clearance Form - return to Ryanair at least 14 days prior to travel

£100

2L per min Max duration 250mins

Cylinders Not allowed

Portable Oxygen Concentrators may be rented

EasyJet

www.easyjet.com/en

A medical certificate confirming that oxygen is required for medical reasons and that You are fit for travel must be produced at the Bag Drop Desk.

none

Not provided

Max 2 cylinders allowed -0.5m length and 250mm diameter

Portable Oxygen Concentrators allowed

Flybe

www.flybe.com

You are required to complete a Medical Information Form for Fitness (MEDIF) and submit to the airline. Depending upon amount and usage of oxygen, further documentation may be required.

none

Not provided

Max 4 cylinders per flight is permitted. If passenger requires 2L or less for intermittent use then submission of the form and notification to airline 48 hours prior to travel should be acceptable. Passengers using more than 2L or on a continuous basis will need to be authorised to fly by Flybe Special Assistance team in advance

Aer Lingus

www.aerlingus.com

Medical Information Form for Fitness to Travel (MEDIF)

£90

2L-4L on selected journeys

Not Allowed

" Please note that this information is believed to be correct at time of press (July 2013). We cannot guarantee the cooperation or availability of any particular airline or service.

Body piercing and tattoos can be popular souvenirs, but think twice before getting them. It may seem like a good idea to have something permanent to remind you of your amazing travels, but a lot of overseas parlours do not have to adhere to the same hygiene regulations as in the UK. Illnesses and infections like Hepatitis C and HIV are potentially a high risk for everyone, and some heart patients may have the added increased risk of contracting endocarditis - an infection of the heart - which is made much more likely in unhygienic places carrying out such invasive body work.

If you're travelling in developing countries, ensure you've received all the correct vaccinations before doing so - malaria, TB and other diseases are easy to spread and potentially very harmful, so ensure you have received adequate protection before jetting off. Speak to your CNS team and a travel vaccination expert at your GP surgery to make sure you are both fully covered and able to have all the necessary protection.

If you are visiting countries with wildlife or crime problems, be wary of where you store your medication and other valuables - a friend of mine had her birth control stolen by a monkey in Sri Lanka, while GUCH patient Elizabeth Ward had her entire bag stolen on a night out in Peru. Protect your belongings and medication, keep them in zipped and hidden areas if possible, and try not to carry them around if it's not necessary - while at the same time remembering to take them with you if you know you may need them.

If you are on prescription medication for your health, bring extra and split up how you are carrying it to ensure that if one set goes missing, you still have access to enough medication. You can never predict accidents, theft, or loss. It can be very challenging to get more medication without proof that you need it. It is strongly advised to carry a copy of your prescription with you too, should you be questioned at the airport.

Consider limiting your holidays to English-speaking countries if you're worried that you may come across problems and that language barriers will stop you from getting help or treatment. The USA and Australia are obvious first choices, but if you're unable to travel that far, people in most European cities speak a high level of English. Places such as Gibralta, Malta and the Scilly Isles are primarily English-speaking, so it is worth looking into these too.

If you have difficulty walking, consider hiring out a mobility scooter. They can be a great way to get around quickly. Alternatively visit areas which are known for flat surfaces - GUCH patient Jean Hughes recommends Lanzarote. It's flat, has a good climate, and an excellent mobility scooter service. Prices can start from 13€ a day!

If you require oxygen and are travelling by plane, check with the airline before booking your flights. Some offer free oxygen, and some are happy for you to bring your own, while others charge for both. Time restrictions can apply, so you may only be able to travel within Europe. Cardiac liaison nurse Toni Hardiman has compiled a helpful chart showing different oxygen allowances for different airlines: See table on page 11.


What the experts advise:

Dr Clive Lewis - Consultant Cardiologist and Transplant Physician, Papworth Hospital

  • Keep hydrated. Keep as mobile as possible on long flights and consider wearing surgical stockings from a pharmacy
  • If you have Eisenmenger Syndrome or are cyanotic, you may require a fitness to fly test in a simulated setting to determine whether you will require oxygen.
  • Be aware of your fluid intake and ensure you are drinking more in hotter climates. Some patients may need to consume specific extra amounts so consult your CNS team.
  • Carry medication and a copy of your repeat prescription in your hand luggage.
  • Make sure you have a EHIC card as well as medical insurance.
  • Transplant patients cannot receive a yellow fever vaccination and require inactivated polio shots. Transplant patients  should also check before taking anti-malarial tablets in case of interaction with other medication, but otherwise have very few restrictions.

Dr Leisa Freeman - GUCH consultant at Norfolk and Norwich

  • If you need a high level of support, try to travel within the EU and avoid the USA (as travel insurance can be very expensive).
  • Cyanotic people don't tolerate extreme cold or heat well, so if you have Eisenmenger Syndrome or are cyanotic, avoid going to very hot or very cold places.

Toni Hardiman - Cardiac Liaison Nurse at Norfolk and Norwich

  • Cardiac "incidents" only occur in 1 to 2 patients per million during air travel. However, patients who have had a heart attack or open heart surgery are advised not to fly for 4-6 weeks afterwards.
  • If you have had recent open heart surgery you may find it more comfortable to cross your arms over your sternum for take-off and landing.
  • There is no evidence that air travel interferes with pacemakers or implantable defibrillators.
  • If admitted to hospital abroad, request a copy of your discharge letter (including the results of any investigations) to bring back to the UK. Keep all receipts for your treatment to help with insurance claims.
  • If taking Warfarin, make sure that you have your INR checks up to date. If you'll be away for a prolonged period of time, consider self testing with a coagucheck machine, or find out how to arrange an INR in the area you are visiting.
  • If you have liquid medication in excess of 100ml, a medical letter may be needed in order to carry it within your hand luggage.
  • Be realistic - don't plan a holiday involving trekking at high altitudes if shortness of breath and fatigue are problems for you. Also be aware that fatigue may be more of a problem in hot countries.
Sophie Lyons

With thanks to:

Dr Clive Lewis, Dr Leisa Freeman, Toni Hardiman, Judith Parker, Mike Hocking, Jean Hughes, Elizabeth Ward and Kieran Wardrop, for their time and help with this article.

If you are unsure who your Cardiac Nurse Specialist is, you can call our help service on 0800 854759 or email us at helpline@thesf.org.uk

This article first appeared in the Summer 2013 edition of GUCH News, entitled 'The World can be your Oyster'.

For travel insurance quotes try www.redwoodbusiness.com or www.allcleartravel.co.uk
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