Travel and LTV Webinar with Dr Ross Langley

If you want to find out how feasible it is to take your child abroad, speaking to your LTV nurse or your WellChild nurse is a good first port of call.

The key thing is to start the conversation as soon as possible. The more time the better – once you start thinking about going on holiday, speak to your child’s team.

 You should check with your own health care trust and your child’s own medical team.

Generally, you don’t need one unless there has been a change in your child’s condition. However, if your last Fit to Fly test was a long time ago, the airline may say you need another one.

However, it is important that you check with your child’s own team about your situation.

Speak to your child’s team and see what they recommend.

You could consider starting with a short haul flight, such as an internal flight within the UK. Some of the advantages of this are:

• You are only on the plane for a short amount of time.
• When you reach you destination you are still within the NHS system and an English-speaking country.
• You can take an alternative route back, such as a train or ferry, if necessary.
• It gives you a chance to test how your child copes with being at an airport in a situation where it is easier to adjust your plan if there are any issues.
• It is normally cheaper.

Going on a short flight enables you to have the experience of going to an airport and all the logistics that come with flying, such going through security and what to do you with your equipment, in a more familiar environment. This can be a good stepping stone towards taking a longer flight and a good way to address your anxieties.

You should speak to your child’s team and see what they think is best for you.

However, some things to take into consideration if you are going on a longer haul flight are:

• The longer your flight the more batteries you will need to take.
• If you are going on a long holiday, think about how much kit you need for your child to last that amount of time. You should take enough for more than the amount of days that you are going. You must then consider how much baggage this will mean you are taking.

This depends on the airline. Some airlines allow a certain allowance, others will require you to pay.

It is a good idea to check with your airline before you book your tickets.

Some airlines prohibit oxygen cylinders on the plane. If this is the case you would need to bring a concentrator instead.

You should contact the airline that you are flying with to determine whether this is allowed. Each airline will have a different individual policy.

Slide 20 from the webinar contains a few airlines and whether they allow cylinders and concentrators. Click on the yellow box above the questions to see the slides.

Yes, some airlines provide oxygen. Please see slide 20 in the downloadable PowerPoint to see which ones supply oxygen.

You can also get in touch with your airline to discuss this.

If you receive medical treatment in the UK, such as oxygen, then you can apply through the refund system link on this website for the health authority to refund you the money.

However, we have heard that it can be difficult and time consuming to get the refund, so you should prepare for the possibility that your refund may be refused.

It may also be worth asking your integrated care board if you could use the personal budget to reimburse you the cost of the oxygen. Whether this is allowed will depend on your ICB, but we know of cases where families have been successful in doing this.

Soft UK has a table of organisations that provide Accessible and/ or Free Family Accommodation. Click here to see that table.

Other organisations that could help provide help with accessing a holiday are:

• The Family Fund is an organisation that provides grants for disabled children’s needs, including holiday grants and travel insurance. They consider grants towards Butlin’s trips, as well as family breaks in the UK and Europe.
• Happy Days Charity take applications from families who have children with special educational needs and a life-limiting condition aged between 3 and 17. They accept applications from parents, guardians, grandparents, GPs, consultants, nurses or social workers.

Dr Ross Langley, Paediatric Consultant in Respiratory and Sleep Medicine

Rachel Carluke, Family Information Officer

[email protected]

First published: June 2025

Review due: June 2026