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Children Living with SMA – Holidays

Children Living with SMA – Holidays

Last updated June 2024

 

As well as opening the tabs below, you might want to listen in to this podcast.  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:

 

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 Your Child’s 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 child’s Emergency Health Care Plan (see section on this page) and our information sheet for hospital staff.
  • Contact details for healthcare professionals supporting your child.

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

If your child uses 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 their wheelchair 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 in the tab above for further information.
If you are travelling by plane and your child has a Wizzybug, you should have a Wizzybug passport which looks like this. 

Depending on your child’s 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

Families 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 families within our SMA Community have found insurance with these companies:

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

1) Do they have swallowing challenges?
2) Do they have respiratory challenges?
3) Have they 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 carers or 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.

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.

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 tickboxes where you can specify your accessibility needs and new sites are popping up all the time – see ones families have recommended below.

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

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

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

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

Phab England and Wales – inclusive living experience residential projects for around 130 children and young people age 8 years upwards at fully accessible outdoor activity centres in the Lake District and New Forest.

Sandcastle Trust – offers bespoke family respite (including accessible adventure breaks), 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.

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

The Family Fund – may make a grant towards holiday costs with or without your child.

The Family Holiday Charity – 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.

REACT (holiday homes) – families with a child with a potentially life threatening illness may apply for a week’s holiday at one of  their mobile homes around the UK

See also: Wish Granting Charities in the tab below.

This page lists some of the charities which offer to fund ‘wishes’ for children who are very ill or disabled. Most will only accept one wish for a child provided they have not already had a wish granted by another charity.

Make a Wish Foundation – Phone 01276 405060 – for children age 3 – 17 years (inclusive). Eligible children include those with a genetic condition that can lead to a reduction in life expectancy / can be associated with life threatening complications. Referrals may be made by the child’s health, social care or education professional.

Promise Dreams – Phone: 01902 212451 – for children from birth to age 18 terminally and seriously ill children including those who have, ‘a confirmed diagnosis of a degenerative life limiting condition such as Duchenne Muscular Dystrophy or Spinal Muscular Atrophy‘.

Rays of Sunshine – Phone: 0208 782 1171 – for children ages of 3-18 years who have serious or life-limiting illnesses.

Round Table Children’s Wish – Phone: 01202 514515 – for children aged 4 – 17 years with a life-threatening illness. Applicants are advised to phone the Wish Coordinator first for a dicussion.

The Dream Factory – Phone: 0208 501 1234 – for children age 3 – 25 years who have life-limiting or life-threatening conditions and / or severe disabilities. Applicants shoudl phone or email: info@yourdreamfactory.org

When You Wish Upon a Star – for children age 2 – 16 years living with a terminal or life-threatening illness.

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

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