Going on holiday with a child who has a gastrostomy / jejunostomy tube – advice for parents and carers

Introduction

Going on holiday with a child who has a gastrostomy and / or jejunostomy tube may feel daunting; however with careful planning undertaken well in advance, there should be no reason why you cannot enjoy trips away.

This information leaflet has been written to provide practical advice to aid you in your planning and to highlight things to consider.

Planning your holiday

Regardless of your holiday destination it is important to contact your home enteral tube feeding (HETF) supplier as soon as you start to plan your holiday to ascertain if they can deliver directly to your holiday destination or not.

Where feed cannot be delivered directly to a destination most companies are able to offer a specialist travel trunk which can be used for you to pack your equipment and feed in.

HEFT suppliers are often able to offer a home visit by a company nurse to offer advice and arrange a backup pump and continental adaptor and travel trunk.

Holiday destinations

Holidays in the UK

Most HEFT suppliers will deliver to UK mainland free for charge.

Alternatively you can obtain an ‘FP10 prescription’ from your GP and then you will need to call the pharmacy local to your holiday destination in advance to enable you to collect your child’s feed on arrival. At least 2 weeks notice is required to arrange deliveries to UK holiday destinations.

Worldwide destinations

Delivery of feed and equipment

For HEFT suppliers to assist in the delivery of your child’s feed and equipment, holidays need to be of at least two weeks duration and less than 28 days.

HETF suppliers require at least six weeks notice to arrange deliveries to holiday destinations in Europe and USA.

At less common destinations, rather than delivery to your accommodation, it will be necessary for you to collect feed and feeding supplies from the airport due to customs restrictions. The company’s holiday co-ordinator will be able to advise you of this.

Please be aware syringes cannot be delivered to the USA so you would need to pack these in your own luggage.

To organise delivery of feed to your holiday destination the HETF supplier will ask for:

• A letter from a GP with details of the feeding regime
• A copy of the passport
• A copy of the tickets
• The social security number for US citizen if visiting USA (regulations imposed by the Federal Drug Agency)
• Some destinations will require a copy of the prescription.

‘Buffer stock’

It is important to ensure that you have at least a seven day supply of all equipment and feed with you on your journey plus a spare pump in case of unexpected delays; this is referred to as ‘buffer stock’.

Once the feed and equipment leaves the UK, HETF suppliers have no influence on its onward journey. However, if you experience a problem your co-ordinator should still be able to assist you. Therefore make sure you have taken all relevant contact details with you in your hand luggage.

It is important that you know the weight of buffer stock; the HETF supplier will be able to supply you with this information.

If using formula feed in a glass bottle, your child’s dietician may be able to help by providing a lighter weight packaged formula in the short term.

Packing-hand luggage

The security restrictions regarding contents of hand luggage do change, so please seek advice via The Department of Transport website.

Current advice regarding liquid medicines in hand luggage states that quantities above 100mls have to be accompanied by authentication and verification. Speak to your gastrostomy / jejunostomy care team (child’s community nurse or clinical nurse specialists) about letters of authentication as these need to be signed by a qualified medical professional. You require four copies of any authentication / medical letters for your journey (two for outbound and two for return). Having copies in the holiday destination’s national language are useful for less frequented destinations.

You must pack at least two days of buffer stock in your hand luggage: the pump, feed and administration sets, syringes, medication plus your support letters. The remainder of the feed and equipment should be packed in the luggage hold.

Essential medical equipment

You are permitted to carry essential medical equipment through the airport and most devices will pass through X-ray scanning unharmed but advise handlers of the fragile nature of equipment. Essential liquid dietary foodstuffs (formula feeds) will be subject to verification.

Medical treatment abroad

Following our countries departure from the European Union (EU), before you travel you must make sure all family members have either a valid European Health Insurance Card (EHIC) or UK Global Health insurance Card (GHIC) or travel insurance with health care cover and take on this on holiday with you for all EU holiday destinations.

For countries that are outside the EU ensure your holiday insurance is comprehensive.

Travel insurance

It is essential to obtain travel insurance, even for holidays in the UK, to cover for any unexpected problems or in case you need to cancel your trip. Check your policy very carefully as most will not cover existing conditions or any illness that can be attributed to an existing condition, unless a further premium is paid.

Other important things to consider

• Ensure you know the nearest hospital for all your holiday locations.
• Ensure you know the location of the local Embassy for holidays abroad.
• Please see the Foreign and Commonwealth Office website (opens in a new tab).
• Ensure you have an electrical adaptor if required. Check with your HETF supplier as in some countries, e.g. USA and Canada, you may need to borrow a pump modified for use in that country.
• It can be helpful to have an extension lead if your child’s feed is administered via a pump, to provide extra lead length to prevent accidents due to trips or falls.

Hygiene

Tap water may not be suitable for hand washing in some countries or situations, which is especially important for children who are jejunally fed or immunocompromised. Therefore take hand wipes, which can also be useful for spillages.

Prevent long exposure to the sun with ‘ready to hang’ and bottled products.

Take a cool bag if planning car journeys and picnics.

All feeds should be stored at room temperature (less than 30 degrees centigrade).

Useful resources

• Patients on Intravenous and Nasogastric Nutrition (PINNT) (opens in a new tab)
• British Association for Parenteral and Enteral Nutrition – (BAPEN) (opens in a new tab)
• Nutricia Homeward (opens in a new tab)
• Nestlé Health Science (opens in a new tab)

Who shall I contact for further advice or with any queries, concerns or questions?

Your nurse specialist (Monday to Friday 08:00 to 18:00): Call 01223 586973

Your community nurse: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .