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Last updated: December 2023
Last full page review: August 2022

Your SMA may mean you and your family need to do some extra thinking when it comes to planning a holiday. You may also be interested in the possibility of some sort of adventure break with other young people.

You may find the following video from our Living With SMA podcast helpful – Summer Holidays – featuring adults who have SMA, and a parent of a child who has SMA. Through insightful conversations, it explores the strategies, tips, and insights that empower individuals with SMA to embark on unforgettable journeys. From packing hacks to navigating accessibility, it uncovers the practical side of making dream holidays a reality:

Recorded: August 2023

  • Is where you’re going to stay accessible? As you may have already experienced, this doesn’t mean the same to everyone.
    A  next to an apartment or house on a website is usually a good guide but to be sure it will work for you, ask specifically about steps, gradients, widths of doorways into bedrooms and bathrooms, equipment available onsite – especially in the bathroom – and the accessibility of other facilities, e.g. dining rooms and bars – to make sure they’ll work for you
  • If you need specialised equipment, can it be hired, or will you need to bring it with you? e.g. a portable hoist
  • If you’re getting there by car, are there suitable parking facilities? How close?
  • If you need accessible transport when you get there, what’s available? Wheelchair Accessible Vehicles (WAVs) can often be hired and many taxis are accessible – but it’s worth finding out before you go.
  • What medical needs do you have? What services are available where you’re going? Have you got a copy of your Emergency Health Care Plan with details of any medications or treatments, and contact details for healthcare professionals supporting you? If you’re going abroad, do you need to take a translation with you?

Depending on your SMA, you may need:

  • a portable hoist and sling
  • a shower chair
  • a voltage changer if you’re going overseas – see Taking Your Wheelchair below

Some holiday destinations hire out beach wheelchairs, so it’s worth checking if this service is available.

The following organisations offer advice and hire equipment; others may be available (contact SMA UK in case we know of any others that are local to you):

National Mobility Hire – hire out lightweight wheelchairs for children / young people.

British Red Cross – hire out wheelchairs

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

If you use a powered wheelchair (and taking a back-up wheelchair either isn’t possible or not what you want to do) you might be wise to have your wheelchair checked before you go anywhere, to minimise the risk of a breakdown.

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

If you’re going overseas:

  • Remember to take the battery charger plus an adapter suitable for the country you’re 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 you’re travelling by air:

  • Check with the airline about travelling with your wheelchair. See if travel or home insurance covers the wheelchair or any other equipment being taken on holiday – please see: Travel Insurance below. You can also find important information in the section Adults / Plane Travel on this page.

Access Adventures – adaptive programmes, giving access to sport and outdoor adventures. They host camps, offering the opportunity to try waterskiing, wakeboarding, alpine skiing, downhill biking, road biking, kayaking, canoeing, kiting, archery and shooting. They’re popular and have a selection process.

Avon Tyrrell – inclusive weekends (with your family) as well as other opportunities at their fully accessible centre in the New Forest National Park

Bendrigg Trust – a range of day activities, inclusive family weekends for families and other opportunities at their activity centre in Cumbria.

Calvert Trust – inclusive courses where you’d go with your family at centres in Exmoor, Kielder and the Lake District

Phab England and Wales – inclusive living experience residential projects for ages 8 – 18 years at accessible outdoor activity centres in the Lake District and New Forest.

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.

Phab  a charity offering an accessible holiday home in Dorset.

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 tick boxes 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.

Disability Horizons – information about travelling

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.

Travel insurance is essential when going abroad and it’s wise to cover:

  • the possibility of medical treatment. Many insurance companies won’t cover ‘a pre-existing medical condition’ and if they don’t know about your SMA and you need medical help, you won’t be covered.
  • any carers / personal assistants going with you.
  • 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 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.

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

Genetic Alliance UK – for their FAQs on insurance.

For latest suggestions of what travel insurance companies other families have used, please contact SMA UK’s Support & Outreach Team.

Family Fund – may make a grant towards holiday costs.

The Family Holiday Association (FHA) – may provide funding for a one-week holiday in the UK. Applications should be made between October and November for the following year as funds tend to be spent by March.

See also: Children / Wish Granting Charities on this page.