Holiday insurance tube fed child

[Sprinkles211]

Sorry posting for traffic due to frustration!

Has anybody managed to get holiday insurance for someone with a feeding tube it's called a PEG percutaneous endoscopic gastronomy there are literally thousands of conditions on there but cannot find this and when we phone insurers they just go through the drop down list and it's not there. My daughters underlying cause for the peg is arfid but just telling them arfid does not insure her tube and if anything is going to be an issue on holiday it will be this so must be covered .... please help one already knackered parent!

The clinical nurse specialist at her paeds unit might know. Macmillan has lists of insurance companies that are good for those with cancer, so might also be worth trying them if they're generally more switched on. Failing that, go via a broker.

Thank you on hold on the phone with a broker now they are also on the phone with their support line I didn't think it would be this rare! Her paediatrician didn't know

Are there any Facebook groups for peg fed children or children with Arfid? They’re often useful for info.

My daughter had a tracheostomy and we found Axa the best company for covering her x

Thank you managed to get cover by staysure? Not cheap but at least we're covered

Yes we got staysure cover too for husband with cancer.

I know this struggle well! I have a feeding tube, and the condition to look for is dysphagia for swallowing issues. Never in a million years would I have thought it would come under that!

Join the PINNT the artificial nutrition support charity - it's free - which then means you can ask the question of other members on their Facebook group.

Pinnt.com

Staysure was going to be my suggestion too... many years of 'pre-exisiting conditions' they've always covered unless you're awaiting results of MRI etc...

Have you tried Fish Insurance? My daughter has a PEG too and this is who we've used in the past.

I see your sorted now but this is a good site https://www.moneyhelper.org.uk/en/everyday-money/insurance/travel-insurance-directory#

Dc1 has a peg I found ringing them and asking yhem to put it in the notes section has sorted it (never been able to get online cover).

Have you let your airline know, dc1 had an extra onboard luggage allowance and they also asked us to carry a letter from gp as well as prescription (as lots of fluid) which helped going through security. We have to go down the 'special lane' forget what it's called but staff are always helpful. They do however seem to unpack the bag so always takes us longer to get through.

Some airlines allow you an extra suitcase too, worth asking

Thank you everyone this is all so helpful!!

@TeaCosyApplePie the insurers have it down as deglutition dysfunction which I questioned them on a few times as I've literally never heard of it. My little girl has it due to arfid but doesn't actually have swallowing problems she will physically eat chips and pombears that's it now she's slowly whittled it down to these two foods has a whole host of diagnosis but all linked to her rare chromosome deletion 15q11.2, I'm still not really understanding how the feeding tube and stoma itself is covered by insurance if we are just putting it down as what they say but they are assuring me it is if emailed scope to see if they have heard of it.