Travel, Health

Travel Advice and Insurance – Help for Myelodysplastic Syndrome (MDS) Patients

Travel tips for someone travelling with Myelodysplastic Syndrome (MDS)

If you have been diagnosed with Myelodysplastic Syndrome (MDS) and are currently planning on going on holiday, this article may be a useful read to help you prepare. If you have a pre‐existing medical condition like MDS it is important to consider taking some extra steps to prepare yourself for your trip:

Travelling and pre‐existing medical conditions

Always consult your haematologist first ‐ ask how the trip might affect you, whether you will need any additional treatments (such as extra top‐up transfusions) before you go, whether it is safe for you to have recommended travel vaccinations.

Do your research and phone ahead

Research your destination, local conditions and the facilities that are available, and consider how you may be affected. Find out the local emergency services numbers, nearest MDS specialist centre and the number of the local hospital. Some countries may have a higher risk of infections or a lower standard of medical facilities. For country-specific travel information visit:‐travel‐advice.

When contacting holiday providers, airlines or hotels, clearly state your needs and what assistance you might require. Just telling people you have a particular disability does not mean that they will understand your needs, so clearly explain to them about your illness.

Make sure you have the right documentation

Ensure you have all necessary documentation before you travel. Depending on your circumstances you may be required to have a “Fit to travel letter” or clearance from the airline for air travelling. In case of emergency ensure that you also carry some documentation describing: what MDS is, what your particular MDS issues are (low haemoglobin/feeling weak; low platelets/risk of bleeding; low neutrophils/risk of infection) your exact MDS diagnosis, your usual or latest blood results, your medication list, information about what assistance you may need and contact details for your Next of kin. For remote and non‐English speaking destinations, consider having these documents translated, or make contact with a local / national MDS society if there is one in that country.

On that note, decide on your destination carefully, it might be wise to go somewhere near a good hospital and choose your destination cautiously as you don’t want a holiday to make you unwell. Special occasions, such as a family event, may put you under pressure to go and so it is important to weigh up all the pros and cons of travelling.

Take enough medicines

Take enough medicines to last throughout your trip plus some extra in case of delays. Speak to your doctor or nurse for the best advice on transporting your medication. Find out if you need a letter from your doctor explaining your need to carry certain medicines, syringes or portable medicine pumps, (and any necessary receptacles to carry and store them), to satisfy foreign customs authorities, or to facilitate obtaining fresh supplies in the visiting country. Some GP’s charge for writing such letters, so if you travel frequently, ask them to write it in such a way that it can be used more than once. Always keep clearly labelled medication and any medical documents in your hand luggage or in a place you can get to them easily.

Before you start planning a trip, speak to your doctor or consultant to make sure you’re well enough to travel. You’ll need a letter confirming you’re fit and healthy enough to travel to satisfy your travel insurance company, a topic we’ll come on to in just a moment.

Travel insurance

When travelling on holiday it is very important that people get fully covered with a travel insurance policy to provide protection in case things go wrong.

Travel insurance will cover cancellations, losing tickets or passports, being in an accident, losing luggage or possessions, and, importantly, medical costs.

Though you don’t legally have to take out an insurance policy to travel, it makes good sense as you could face significant costs if things go wrong while you are away. Repatriation alone has been known to cost in the tens of thousands of pounds in severe cases.

Most people don’t want to take the risk. The medical part of the insurance is widely used to cover your medical costs that would not normally occur back home on the NHS.

If you have a medical condition, getting travel insurance doesn’t have to be difficult. It’s just a process, and one that will go much more easily with the right insurance company and the correct documentation declaring you fit to be able to travel.

Specialist insurers understand pre-existing medical conditions, such as MDS better and can tailor the insurance they provide to cover your particular condition and situation. It’s your responsibility to make sure you have a comprehensive travel insurance policy that is appropriate to your needs.

Make sure you ask your insurer about:

  • 24 Hour emergency assistance cover.
  • Care cover in a private hospital in case there’s an emergency.
  • Emergency repatriation: cost of transport back to the UK should be covered.
  • Holiday cancellation / lost baggage / flight staff strikes / airline bankruptcy.
  • Medical expenses cover (some policies offer up to £15m although a typical policy offers around £1m).
  • Overnight stays in the hospital.
  • Accommodation for friends and family who may be supporting you.
  • Emergency medicines replacement.

To be certain a travel insurance policy is appropriate for your needs, insurers have a process called “medical screening”.

Their medical department will questions about your condition, they’ll need your medical treatment history and contact details at the hospital performing your therapy.

Holiday insurance with cancer coverage can get expensive, so it’s best to shop around to find the cheapest quote. Try our list of holiday travel insurers that have medical travel and pre-existing medical conditions cover in our handy guide. Before accepting a policy, read through the policy terms and conditions carefully, especially the exclusions section.

If you are travelling to the European Union, your European Health Insurance Card (EHIC) may no longer be valid after the 31st October 2019.

While it’s sensible to hold one, don’t rely on it. It’s worth familiarising yourself with the current level of health care on offer by each individual country. We’ve created a guide for travellers from the UK visiting the EU after Brexit with an individual country by country guidance. Always make sure you have travel insurance.

Recommended Travel Insurance Providers that provide MDS cover

We’ve carefully reviewed travel health insurance providers that all understand, and cater for varying types of pre-existing medical conditions. Most, such as Allclear and Staysure, cover any medical condition.

Always speak directly with the insurer to find out what’s covered and what isn’t.

Click here to see our full list of travel insurance providers or click “Quote” to get a quote from one of our recomended providers, or scroll down to read more information on individual policies.

Maximum Age
PolicyClever Rating*

No age limit






No age limit


World First



Columbus Direct



*Ratings data is based on aggregated review scores provided by Defaqto, Trustpilot, Feefo, and

Travel Insurance Policy Comparison

We’ve carefully reviewed travel health insurance providers that all understand, and cater for varying types of pre-existing medical conditions. Most, such as Allclear and Staysure, cover any medical condition. Always speak directly with the insurer to find out what’s covered and what isn’t.

Click here to see our full list of travel insurance providers or click “Quote” to get a quote from one of our recomended providers, or scroll down to read more information on individual policies.

World First

Read more for some helpful tips on travelling with MDS:

Blood counts and flying

The UK Civil Aviation Authority encourages all people who wish to fly to assess whether they are fit to fly in an aeroplane. People with low blood counts (of any kind) may be advised against flying or against flying for long periods of time. In particular, anaemic patients may be affected by flying because of reduced oxygen levels at high altitudes, which do not affect those with a normal haemoglobin range. In their guidelines for health professionals, the UK Civil Aviation Authority state: Patients with haemoglobin of greater than 8 g/dl may travel without problems assuming there is no coexisting condition such as cardiovascular or respiratory disease. If the haemoglobin is less than 7.5 g/dl, special assessment should be made and the use of supplemental oxygen should be considered.

Please check with your doctor before booking flights whether you are fit to fly in an aeroplane. You and your doctor may be required to complete a Medical Information Form (MEDIF), before flying. The form is only valid for one trip and can only be used on the flights and dates shown on your ticket. Frequent travellers may be able to obtain a Frequent Travellers’ Medical Card (FREMEC).

Travel insurance tips for MDS patients

It can often be difficult for MDS patients to get the right travel insurance policy at a reasonable price. Below are some tips on how to overcome the most common challenges:

Always declare MDS as a pre‐existing medical condition. If you don’t, the insurer can make your policy void or refuse to pay for any claim related to your medical condition. Be aware, if the insurer does not ask about any pre‐existing conditions, your condition almost certainly will not be covered by the policy. This also applies to travel insurance provided with some credit cards and bank accounts.

Travel insurance covers more than medical costs and should also cover anything else that may happen on the trip: cancellation; the trip being cut short; medical expenses and repatriation; lost and stolen possessions including hand luggage, money, passports and other belongings. Always ask what exactly is included and excluded in the policy, how much you will be charged and how much excess you will have to pay in various circumstances.

Typically medical screenings for travel insurance are done over the telephone. Be aware the charges for phoning insurance companies vary and may be high. Rates from mobile phones are considerably higher. The website may help you find cheaper phone numbers to call. Check if you can complete your medical screening online, which is an useful option to patients whose MDS is not particularly problematic e.g. watch and wait category.

You can avoid costs and hassle by insuring all people travelling with you on the same policy, so that if you need to make a claim on the insurance, the rest of your group are also covered e.g. if the holiday needs to be cancelled because of your medical condition then all of the travelling party are eligible for a refund.

Get a ‘fit to travel letter’ from your haematologist, which will confirm that although you have the diagnosis of MDS, it is safe for you to travel to your chosen destination. Some insurers will ask for this letter.

Before you answer any questions, ask the insurer if it has a specific ‘code’ for MDS, as opposed to a general code for cancer, blood cancer or leukaemia. If the insurer does not code MDS specifically, most likely they do not understand what MDS is. Same applies to online screening questions. Be aware that the questions you may be asked on the telephone may not be the same as those on an online form and may differ significantly between different insurance providers.

Increasingly, more MDS patients are asked whether their diagnosis is ‘terminal’. MDS is generally not considered as a ‘terminal illness’ as defined by the Association of British Insurers. Therefore, you should answer ‘No’ to this question, unless you have specifically been told otherwise by your haematologist.

Your choice of destination will affect the cost of your cover. If you travel several times a year, and it is an option to you, consider purchasing an annual travel insurance cover. Equally, if you currently require active treatment or blood transfusions ask for a single trip cover, which will be cheaper and easier to obtain.

References and further sources of travel insurance information

Assessing fitness to fly Guidelines for health professionals from the Aviation Health Unit, UK Civil Aviation Authority (2012) Travel Health, Foreign and Commonwealth Office:‐travel‐for‐disabled‐people and‐travellers

Association of British Insurers:


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