Feeding Tube Awareness Week 2024 | let’s talk about tube feeding and challenge misconceptions
It’s Feeding Tube Awareness Week (4-10th February 2024) – a moment that’s marked internationally every year and designed to encourage people to talk about tube feeding.
Tube feeding is the process of supplying nutrients to people who are unable to eat or drink orally via a tube through the nose or directly into the stomach. But nearly a third (32%) of people in the UK have never heard of the term ‘tube feeding’ – according to a survey of 2,000 UK adults run by Talking Tube Feeding in January 2023. That’s equivalent to 4 million people if representative of the whole UK population! Others thought someone who is tube fed can’t eat in public, drive or take part in physical activity. Raising awareness about tube feeding and common misconceptions is therefore incredibly important.
Awareness comes in all shapes and forms. From educating those who haven’t heard of tube feeding or don’t know what’s involved, to helping families or friends support individuals who tube feed – whether they’re at the start of their journey or several years in, this week-long campaign hopes to spark new conversation and promote greater knowledge about tube feeding.
To celebrate Feeding Tube Awareness Week, we asked some of our community to share what they would like people to know about tube feeding.
Kerry Douse, Mother of Mila (aged 7), who has Dystonic Cerebral Palsy and is fed into her jejunum, believes being tube fed doesn’t limit your day to day life:
“Even with being fed via a feeding pump for 17 hours a day, Mila has the independence to play and experience everything that other children do. In her pump free hours, Mila has been able to enjoy roller coasters, ice skating, swimming, soft play and lots more. I don’t let her feeding tube hold her back, we still travel the world even if it comes with a lot of luggage.”
Eloise Hill, 25, who has Intestinal Malrotation and is fed into her jejunum, says that she wishes people knew that despite having a feeding tube she can get married and have a career:
“I wish people knew that despite having a feeding tube I can be in a happy relationship and get married and have a successful, stable career. I don’t share my tube feeding journey for sympathy, but to give other’s hope, because we can be happy and live long, healthy lives just like everyone else!”
Chloé Fuller, aged 24, has Ehlers Danlos Syndrome and is fed through via an NJ tube, wants to help others recognise that while tube feeding is a part of her, it is not all of her:
“In the beginning, I was so terrified about getting something wrong, like blocking the tube or breaking the feeding regime! I didn't dare unhook to do anything, whether that be walking my dogs, or going to training classes with them. However, I built my confidence up and now unhook for a few hours and perform with my dogs or present on TV for my job.”
Faye Bingham, aged 27, has ARFID and is fed via an NG tube into her stomach, finds it best to prioritise time in the day to enjoy ‘me’ time:
“My favourite thing to do is take some ‘me time’ by factoring into my evening routine a full skincare routine for some self care. I’m also a huge gamer, even when I am too fatigued to get out the house I jump onto my favourite video game, party up with a group of friends and this means I can maintain that social contact whilst immersing myself into a make believe world.”
Without any awareness or understanding, knowing how to appropriately communicate with tube feeding individuals can be challenging. Our survey found 13% of Brits would like to ask someone who tube feeds questions but wouldn’t feel comfortable doing so.
Lorenza, Mother of Eliza (aged 5), who has CHARGE Syndrome and is fed through a Gastrostomy tube, wants to encourage people not to be afraid to ask questions:
“Don’t assume that a tube fed child can’t have a piece of birthday cake with their friends. Ask their parents what they can eat or drink as every tube fed person is different”.
Georgia Gatherum, 26, who is fed through an NG tube, is keen for people to understand more about tube feeding:
“My little girl really enjoys helping me prep my feeds by pouring the feed into a bottle, screwing on the given set and priming the line. It is really important to me to have my children involved as I believe it helps them understand my condition/medical devices.”
We’d love to hear from you – what do you wish people knew about tube feeding? Drop us a message on Instagram @talkingtubefeeding or email us at talkingtubefeeding@uk.nestle.com.
And, if you’re new to tube feeding, why not read A Care Giver’s Guide to Tube Feeding and our Glossary of technical terms?
