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Adults Living with SMA, Holidays

Adults Living with SMA, Holidays

Last updated: June 2024

 

As well as opening the tabs below, you might want to listen to this podcast where adults who have SMA and a parent of a child who has SMA uncover the practical side of making dream holidays a reality. They talk about their holiday strategies, tips and insights

Recorded: August 2023

Accessible accommodation:

Ask about:

  • Steps
  • Gradients
  • Widths of doorways into bedrooms, bathrooms and any other areas such as dining rooms and bars.
Places often say they are accessible but often they are way off the level a powerchair user needs. You might want to ask for photos and exact measurements.

Equipment:

  • You may need:
    • a portable hoist and sling
    • a shower chair
    • a voltage changer if going overseas – see Taking Wheelchair below
  • What is available onsite – especially in the bathroom?
  • If not available, can it be hired, or will you need to bring it with you e.g. a portable hoist?
Some holiday destinations hire out beach wheelchairs, so it is worth checking if this service is available.

These organisations offer advice and hire equipment; others may be available:

National Mobility Hire – for children’s lightweight wheelchairs as well as mobility aids for adults.

British Red Cross – to borrow or hire a wheelchair – age 5 years upwards.

Tryb4uFly – undertake cabin assessments and hire out equipment for flights.

Transport:

  • If you are driving, are there suitable parking facilities?
  • If you are not taking your own vehicle and need accessible transport, what is available?
  • Can you hire Wheelchair Accessible Vehicles (WAV) or taxis?

Medical Care 

What services are nearby?

Take:

  • Details of any medications or treatments,
  • Your  Emergency Health Care Plan (see section on this page).
  • Contact details for healthcare professionals supporting you.

If you are going abroad, do you need to take a translation with you?

If you use a powered wheelchair, the option of taking a lighter wheelchair may be either not possible or not your preferred option. If so,  to minimise the risk of a breakdown, you might want to have it checked before you go.

If you are travelling within the UK and your NHS wheelchair breaks down, the local wheelchair service repairs may be able to help.

If you are going overseas:

  • Don’t forget to take the charger and an adapter suitable for the country you are going to. If the voltage is different, you may also need a voltage changer – check with the wheelchair manual or ask your supplier / manufacturer.
  • Find out in advance if there is anywhere to get the wheelchair serviced should something happen during the trip.

If travelling by air:

  • Check with the airline about transporting a wheelchair.
  • See if travel or home insurance covers the wheelchair or any other equipment being taken on holiday. Please see the section below on insurance.
  • See Plane Travel on this page for further information.

Depending on your circumstances, we know it can be quite difficult to get insurance and sometimes very expensive (£1000+). Also, it seems to depend on whether you are staying in Europe or not.

The UK Global Health Insurance Card (GHIC) lets you get state healthcare in Europe at a reduced cost or sometimes for free

People in the SMA community have told us that insurance costs seem to vary depending on how you are travelling. For example, if you are on a cruise because of the onboard medical assistance if this is needed.

Some people within our SMA Community have found insurance with these companies:

Travel insurance agencies are likely to ask three questions about before providing a quote:

1) Do you have swallowing challenges?
2) Do you have respiratory challenges?
3) Have you had any unplanned hospital admission within the last twelve months?

When you are sorting out your travel insurance, you might also want to make sure that:

  • Any personal assistants going with you are covered.
  • You are covered for cancellations and loss or damage of property, including any equipment. Equipment can sometimes be covered through home / equipment insurance.

Whatever cover you have, check if equipment insurance would cover the cost of hiring alternative equipment. If you are flying, contact the airline in advance and request a ‘special declaration of interest’ for any equipment insured. This will ensure that no limit can be put on an equipment insurance pay out if equipment is damaged by the airline.

You can find other helpful guides to insurance at:

Please do get in touch with Support and Outreach at SMA UK if you need any further help or suggestions.

You may be looking for something on your own or you may want to take your family. Some of these may be worth looking into:

Access Adventures – founded to provide fun adaptive programmes and give access to sport and outdoor adventures may have something to offer.

Avon Tyrrell – offer inclusive weekends for families as well as other opportunities at their accessible centre in the New Forest National Park.

Bendrigg Trust – offer inclusive family weekends for families and other opportunities for young people at their activity centre in Cumbria.

Calvert Trust – a wide range of inclusive family activities at centres in Exmoor, Kielder and the Lake District.

 

The National Accessible Scheme (NAS) run by Visit England provides information about which hotels and accommodation have been independently assessed, as well as other useful links and suggestions.

Tourism for All – helps disabled people plan and take holidays and breaks – both in the UK and overseas. You have to be a member to access this service – annual subscription of £25.00 for UK residents. Membership entitles you to use the information service as many times as you like during the year.

CanalAbility – a charity offering accessible canal boat holidays and day trips.

Sandcastle Trust – offers bespoke family respite, wrap around fun family engagement activities and peer support to support families living with a rare genetic condition (based on their individual needs) from across the UK.

Many mainstream websites have filter tickboxes where you can specify your accessibility needs and new sites are popping up all the time – see ones families have recommended in the tab further below.

For accessible facilities in Wales and Scotland , you might want to start with these websites:

Gov.UK guide on foreign travel for disabled people – useful tips and links

These organisations have been recommended to us, many others are available:

Association of British Travel Agents (ABTA) – guidance on how to work with your travel provider to book holidays that meet your needs; as well as information about your legal rights.

A Wheel and Away – for the independent traveller, who may have a disability, but who still dreams of seeing the world under their own steam. It provides a forum for people to share experiences, inspire others and discover how to go about creating amazing adventures.

Disability Horizons –travel and holidays.

Lonely Planet / Accessible Travel Online Resources – free to download guide

Tourism for All – helps disabled people plan and take holidays and breaks – both in the UK and overseas. You have to be a member to access this service – annual subscription of £25.00 for UK residents. Membership entitles you to use the information service as many times as you like during the year.

Tryb4uFly– information and advice on flying with a disability, cabin assessments and equipment hire for the flight

Going on a cruise:

Image shows a lady who has SMA sitting in her wheelchair. She is on holiday, in front of a large lake and mountains. She is wearing a cream baseball cap, a white t-shirt and black trousers."In 2003 I embarked on a week cruise to the Canaries. My first taste of foreign sunshine in 20 years!!! It was amazing! The cabin was perfect, the ship completely accessible and the staff couldn’t do enough to help. There was even a dedicated person who was able to offer advice regarding the accessibility of ports and help arrange accessible shore excursions. Aside from the initial trepidation of trying something new, I can honestly say that compared to previous holidays it was completely stress free! All in all I was hooked and suddenly the world opened up to me!"

Katy.

Access at Last – accessible accommodation Europe and the USA.

Airbnb – worldwide accessible accommodation (use search filters)

A Wheel and Away – for the independent traveller, who may have a disability, but who still dreams of seeing the world under their own steam. It provides a forum for people to share experiences, inspire others and discover how to go about creating amazing adventures.

Carry My Luggage – provide luggage delivery with a door-to-door service for UK, Europe, USA and other worldwide destinations:

Ceiling Hoist users Club (CHuC) – lists accommodation in the UK and overseas that has ceiling hoists:

Disabled Holidays – worldwide

Enable Holidays – worldwide

Luggage Mule – door to door luggage delivery service

Matching Houses – house swaps for families with disabled children

Responsible Travel – Accessible Holidays Guide, worldwide

CS Disabled Holidays – offer grants of up to £2000 per year to individuals over 18 who are severely physically disabled by a neurological illness or condition towards the cost of a holiday of their choice. They also offer up to £2000 per year grants to similarly disabled individuals between 16 and 25 towards the cost of an educational or training trip anywhere in the world.

If you need help with funding, please contact SMA UK’s Support & Outreach Team as they may be able to help find other potential sources of funding towards a holiday.