Travelling and MSA

Introduction

This factsheet has been developed for people with MSA to help highlight some of the key considerations that need to be taken into account when planning to travel or go on holiday, whether it is in the United Kingdom, Ireland or further afield. It is not an exhaustive guide but its aim is to help you organise a holiday that is as enjoyable and stress-free as possible.

It can benefit everyone to have a change from their daily routines and even more so when coping with the challenges of living with MSA. It is all too easy to put off going away because of the worry about managing daily needs in different and unfamiliar surroundings. However, careful planning and being prepared will help to ensure a positive and enjoyable holiday experience.

Choosing a destination

Before looking at any of the accessibility aspects in detail, have a think about the sort of destination, resort and budget that appeal to you and what suits your personal likes and interests.  Once you have decided on a destination, you can then explore the practicalities to try and ensure that they meet your individual requirements.  www.euansguide.com – gives reviews from disabled people for lots of places around the world so may be worth looking at too.

Many hotels and guesthouses in the UK and overseas have disabled facilities such as hoists, electric beds and wet-rooms. If holiday accommodation does not already have the equipment you require, it may be possible to rent it for the duration of your break (see section on ‘Equipment’ below).

Some people with MSA find that a sea cruise is a practical way to take a holiday and these days many cruise ships offer accessible facilities, including wheelchair-adapted cabins, a wide range of specialist equipment and often have experienced medical staff on board.

In helping you to reach your final decision, it might be worth checking the accessibility of the bedroom in relation to the rest of the hotel facilities and the street for example, are the lifts reliable and able to take wheelchairs? 

You might also wish to establish whether your chosen resort can provide facilities such as:

• Step-free access
• Wheelchair ramps
• Access to disabled toilets
• Electric beds
• Bed rails
• Hoists (fixed room hoists and/or mobile hoists)
• Riser recliner chairs
• Shower chairs
• Wet rooms
• Hoists for swimming pool.

Bear in mind that disabled facilities in some parts of the world might not be up to the standard that you are used to at home. It is certainly worth asking lots of detailed questions at the planning stage. It is also worth looking up any recent reviews for the accommodation you are considering.

If your holiday is booked through a tour operator, the latter should be able to help you with many of these preparations, but it is important to make them aware of your possible needs. Some people prefer to book disabled rooms as they generally have more space.

In order to get the most out of your travels, you might find it helpful to contact one of the accessible holiday organisations specialising in disability, accessibility and travel (please see ‘Accessible Holidays’ list below).

Important information for travelling abroad

It is important to check the government websites for any foreign destination you plan to visit for any health specific advice, documentation and vaccination requirements. 

If you are planning to travel abroad, you need to check the minimum time you have left on your passport.  Depending on where you are going this may vary from 3 to 6 months beyond your return date.  You can check the requirement for each country on the government website: www.gov.uk/guidance/passport-rules-for-travel-to-europe

The European Health Insurance Card (EHIC) remains valid until the expiry date on the card – this card entitles access to immediate necessary healthcare within the EU. However, you will need to renew this card with the Global Health Insurance card when your EHIC expires, you can renew it at any point in the last 6 months of the expiry date.

www.nhs.uk/using-the-nhs/healthcare-abroad/apply-for-a-free-uk-global-health-insurance-card-ghic

Transport and Travel

Air

At the time of making your booking, ensure that the airline on which you are travelling is fully aware of your level of mobility and remember to tell them whether you will be using a wheelchair. If you are easily fatigued, have days when your balance or walking is less good then it is advisable to take a wheelchair.

It is a good idea to contact them again shortly before your departure date to make sure that the right level of assistance will be available. You might find it helpful to request an aisle seat with good leg room on the plane, ideally close to the toilet. If you are particularly worried about toileting needs and you have a long flight, you may want to consider wearing pads just for the journey in case of accidents or difficulty getting to the toilet. It is also possible to discuss with your District Nurse or Continence Nurse about the use of a catheter or convene just to assist you over this time. Remember that aircraft toilets are not easily accessible for disabled passengers. It is also a good idea to wear in-flight compression stockings throughout the flight.

Power wheelchairs often have to have the battery removed (it’s helpful to have your wheelchair toolkit with you) to store in the hold and you will be transferred to a manual wheelchair to get to your seat. If you need a hoist to get into your seat, then just inform your airline in advance. 

Most airlines will allow you to take extra luggage, free of charge, if you need to take essential medical supplies and equipment, so ask your airline about this before you travel.

It is best to request full assistance for all your travel as this will enable you to have wheelchair assistance or buggy pick up. This will help you get around the airport with your luggage, so you are not exhausted before you even start your holiday. Also, with this assistance you will avoid long stands in the security queue, not be expected to stand unaided in the X-ray machine and avoid the hassle getting to the aircraft. Advice for people with assistance needs travelling through airports can be found in this link www.parkat.co.uk/disabled-travel-guide.pdf.

Sea

It is essential that you provide details of your mobility level to the cruise or ferry company at the time you make your booking. Make sure that the ship has appropriate facilities, e.g. disabled toilets and lifts to all floors and contact them again nearer the departure date to update them and double check that the required assistance will be provided. There are a limited number of cabins suitable for people with disabilities on each vessel so do book early for the cruise you are considering.

Rail

Many mainline rail stations in the UK and Ireland and most trains are suitable for wheelchair use. It is best to book your tickets in advance along with booking any assistance you require at the same time. If you require assistance with boarding and leaving a train, for example using wheelchair ramps. It is also a good idea to contact the individual train company the day before your journey to ensure that someone is on hand to help with boarding and alighting from the train. For general information on rail journey planning in England, Scotland and Wales, contact National Rail Enquiries on 03457 484950 or www.nationalrail.co.uk.

You may be entitled to a disabled person’s railcard which could save up to a third on the cost of rail travel. For further details visit www.disabledpersons-railcard.co.uk or call 0345 605 0525.

For travel in Ireland go to www.transportforireland.ie/getting-around/accessible-travel-information/

Eurostar offer a fully assisted service for people with mobility and additional needs support. https://www.eurostar.com/uk-en/travel-info/travel-planning/accessibility

https://passengerassistance.com/ this app allows you to book any support needed and will store your information for future bookings.

If you are needing to travel in or through London https://tfl.gov.uk/transport-accessability link gives you accessibility information for travelling in London.  If you don’t need a wheelchair space but need a seat on any Transport for London (TFL) services you can get a Please offer me a seat badge’ from TFL

Taxi

If you need to book a taxi remember to specify that you will need a wheelchair accessible vehicle, either because you are wheelchair dependent or because it is easier to travel in your wheelchair.

Car

If you are planning to hire a car whilst on holiday, consider booking a more spacious one that is easier to get in and out of. It may help to pack a ‘turntable’ seat and a slide sheet in your main luggage. Some vehicle hire companies have wheelchair accessible vehicles for hire.

Check if the country you are going to recognises the blue badge system; if it does remember to take this with you for use in any car you hire or for use if you are taking your own vehicle.

If going overseas, check with the resort or tour operator about hiring a wheelchair accessible vehicle.

Several UK companies have wheelchair accessible vehicles for hire, including:

Adapted Vehicle Hire Ltd

T: 01895 439111 | W: www.adaptedvehicles.com                                                          

Allied Mobility

T: 0808 231 5553 | W: https://www.alliedmobility.com/wheelchair-accessible-vehicle-hire/

Pre-departure preparation

About a month before departure, it might be worth getting a reassessment from your Physiotherapist, Occupational Therapist, Speech and Language Therapist and Continence Nurse. They may have tips about things they anticipate could need planning for and ways to manage any ‘hurdles’ they think may occur.

Obtain a letter from your Consultant or GP setting out your current situation and your medication – keep one copy with you in English for getting through airport control with medicines and, if possible, one copy translated into the appropriate language for the destination.

Write up a list of contact telephone numbers and email addresses, including your Consultant and MSA Health Care Specialist, so that you can contact them whilst away and can pass on details to any medical team that might need advice.

Ensure that you have a couple of copies of the Trust’s ‘Guide to Multiple System Atrophy’ to take with you to show to any health professional you may need to be in contact with while you are away. Remember it is likely that they may have no experience of MSA.

If staying in a hotel, contact them again before departure to ensure that they are fully aware of your requirements e.g., bedroom and bathroom facilities that are accessible as well as specialist equipment, such as hoists. Make sure you have all your booking confirmation with you.

Ensure that you have appropriate travel insurance and their details with you (please see ‘Travel Insurance’ section below) and consider insuring any specialist equipment you are taking too.

What to pack

Remember to pack any special eating and drinking utensils and adapted cutlery if you use these at home. Alternatively, think about adapting the cutlery provided, e.g. foam grips to fit over standard cutlery are a good idea, particularly as you won’t be able to take a knife in your hand luggage if travelling by plane.

An element of MSA can be episodes of sudden low blood pressure so it’s important to be careful not to get overheated in showers and baths or by sitting in direct sunlight. Always take particular care if visiting a hot country, take salt tablets with you and whilst away ensure you drink more fluids.

Take all the medication that you will need while you are away plus at least one extra week’s medication. All medication must be correctly labelled and in its original packaging and any food or drink supplements must be in sealed, labelled and original packaging.

Keep your main supply of medication in your hand luggage and the extra back-up supply in the hold luggage.

If you use a Convene or catheter, ensure you have spares with you and you may find using a leg bag for the journey reduces the need to find and access toilets.

If you have a disabled toilet/RADAR key, ensure you have it in your hand luggage.

If you use a wheelchair, particularly a powerchair and plan to take it with you it may be necessary to know the width, depth and weight of the chair.  Also the height with you sitting in it, for head clearance in a vehicle and the weight of you and the chair.  If you plan to stay seated in the wheelchair when travelling ensure it has required standard fixing points. Some travel companies will require this information for insurance and to ensure they can accommodate the chair in transit.

Some people have a small bag with suction fit grab rails, a fold down bed lever, slide sheet and lifting belt that they keep together for trips away from home.

Accessible holiday accommodation

There is a wealth of information online about accessible holiday accommodation of which the services listed below are a small selection. Please note the MSA Trust does not necessarily endorse any of these services, but we hope you will find them useful.

Accessatlast

Accessible travel and accommodation in the UK and overseas, with detailed reviews: www.accessatlast.com

Disabled Holidays.com

Accessible holidays in the UK and abroad, including cruises and respite holidays. Useful site for all disability travel information. It lists checked out providers in all the categories – booking is direct with the providers. 
www.disabledholidays.com

Enable Holidays

Customised accessible holidays in Europe and the US
T:  0871 222 4939 | W: www.enableholidays.com

Open Britain

Accessible travel in England and Wales
T: 0845 124 9971 | W: www.myfamilyourneeds.co.uk/listing/open-britain/

WheelMate

This site (also available as a smartphone app) gives you an overview of your nearest wheelchair-friendly toilets and parking spaces throughout the UK
W: www.wheelmate.com

Limitless Travel

Provides tour packages, accessible accommodation and transport for holidays in the UK and Europe
T:  0800711 7232 | W: https://www.limitlesstravel.org

Independent Cottages

This site has range of wheelchair accessible properties across UK.  Also provides advice about of Britain with good accessibility and beaches with accessibility.
www.independentcottages.co.uk/holiday-ideas/cottages-for-limited-mobility/

For general information about accessible places to go in the UK and Ireland e.g., restaurants, cinemas, hotels visit – www.accessable.co.uk | T: 01438 842710

Travel insurance

Below is a small selection of the many travel insurance companies that provide cover for pre-existing medical conditions. Bear in mind that they may not have MSA listed as a condition, if not try “Parkinsonism” or “Shy-Drager”. Feel free to give the company the Trust’s contact details if they wish to discuss your medical condition in more detail.  Please note that the MSA Trust does not endorse any of the services listed. 

If you are going on a Cruise for your holiday, it is advisable to check you have insurance specifically to cover you for this.

https://www.moneyhelper.org.uk/en/everyday-money/insurance/use-our-travel-insurance-directory

Link to directory for insurer for serious medical conditions or disability

Able2Travel

T:  01483 806826 | W: www.able2travel.com

Medici Travel Insurance

T: 0845 880 0168 | W: www.privatehealth.co.uk/health-insurance/companies/medici-travel-insurance/

OK to Travel

T: 01223 446 920 | W: www.oktotravelinsurance.co.uk

Free Spirit Travel Insurance

T: 02392 419080 | W: www.freespirittravelinsurance.com

Chris Knott Insurance

T: 0800 917 2274 | W: www.chrisknott.co.uk

World First Insurance

T: 0345 908 0161 | W: www.world-first.co.uk

Fish Insurance

T: 0333 331 3770 | W: www.fishinsurance.co.uk

Just Travel (Over 65’s only)

T: 0800 294 2969 | W: www.justtravelcover.com 

Insurance Choice

T: 01926 460922 | W:  www.insurancechoice.co.uk

All Clear Insurance

T: 0808 164 5861 | W:  www.allcleartravel.co.uk 

Stay Sure

T: 0808 2816462 | W:  www.staysure.co.uk/travel-insurance

Worldwide Insure

T: 01892 833338 | W: www.worldwideinsure.com

Barclays Bank Insurance

W: www.barclays.co.uk/insurance/travel-insurance

Assisted holidays

If financial constraints make it difficult for you to fund a holiday, consider exploring local sources of funding such as Rotary Clubs, Round Tables or similar organisations. Other organisations that might be able to give help or advice include:

Disability Aid Trust  

Provide grants towards cost of holiday care assistants for people with disabilities

T: 0800 028 0647 | W: www.disabilityaidtrust.org.uk

Holiday Care

Holiday accident insurance

T: 08451 249 971 | W: www.holidaycare.org.uk

Disability Grants

Provides information and links to care support, equipment hire, specialist holidays and grants for holidays and carer support.

www.disability-grants.org/supported-holidays.html

Citizens Advice Bureau

Information and advice to help resolve legal, financial and other problems. They may know of funds in your local area that might be able to help in the event of an emergency

T: 020 7833 2181 | W: www.citizensadvice.org.uk

Equipment

For holidays abroad, ask the tour operator or resort about availability of mobility equipment or other aids for hire. It can be difficult organising specialist equipment whilst abroad, so it is advisable to plan well ahead and do this through your tour operator or travel agent who will have representatives who can communicate your needs in the local language.

If holidaying in the UK, it can sometimes be possible to arrange the loan of equipment such as wheelchairs or commodes, through your local British Red Cross or the branch that is local to where you are going.

Alternatively, a local Occupational Therapist might be able to arrange short-term equipment loan for holidays or perhaps put you in touch with local representatives.

Think about separately insuring any expensive specialist equipment you are taking on holiday with you in case of loss or damage. If possible get any specialist equipment serviced before you go away and carry a puncture repair kit if you use a wheelchair.

National Federation of Shopmobility

Hire of wheelchairs and mobility scooters in the UK
W: www.shopmobilityuk.org/find-a-centre/

ABLEize

Mobility Aids and Equipment hire in the UK and Abroad – lists providers.
www.ableize.co.uk

Accessible Holidays

Offer rental and hire of disabled mobility equipment – Scooters, Hoists, Shower Chairs.  They also offer a delivery and collection service in the UK and Abroad.
www.disabledaccessholidays.com

Travel John

A Travel John disposable urinal might be worth considering – it is suitable for men and women and holds up to 600ml of urine which turns into a gel that can be disposed of in standard waste.  They cost around £13 for three and can be ordered online at www.completecareshop.co.uk  Reference code CCS996.

If you are going away for a longer period of time and require the use of bulky disposables e.g. continence products, oxygen, food for your gastrostomy etc. do contact the suppliers as they may be able to arrange delivery directly to the location you are going to.  

The MSA Trust is unable to provide individual advice on travel insurance, services or destinations.

If you have any questions about anything you have read in this factsheet, then please contact your MSA Health Care Specialist.