Tube Feeding: a third of us haven’t heard of it, so it’s time to raise awareness
A recent study of 2,000 UK adults found nearly a third of Brits (32%) have not heard of the term “tube feeding”.
Tube feeding, 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, supports on average 40,000 adults and children in the UK.
6% of those surveyed – equivalent to 4 million people if a representative of the whole UK population – think that tube feeding is when someone is forced to eat because they refuse to themselves. Many more assume tube feeding is the result of a terminal illness, breathing problems or catching COVID-19.
What’s more, over a quarter (27%) of Brits think a person who is tube fed can’t eat in public. Other perceived limitations of tube feeding include not being able to drive (19%), not being able to work (16%) and not being able to take part in physical activity (9%).
The research was commissioned by Talking Tube Feeding, a website that exists to support those tube feeding by empowering choice and driving awareness. Talking Tube Feeding is a Nestlé Health Science initiative, created with healthcare professionals and tube-feedings families.
Jessica Moxham is a London-based mother whose son, Ben (13), has been tube fed since he was born. Ben has cerebral palsy and is tube fed through a gastrostomy.
Ben was vomiting at a very young age and had very bad reflux, which prompted Jess in collaboration with healthcare professionals to try Ben on a blended diet – starting off with baby food through his tube. His positive experience meant over the course of three years, Jess slowly increased Ben’s blended diet and decreased his formula feeds until he was only having these when in nursery or at school.
As blended diets are not suitable for everyone who tube feeds, it’s important to explore this option with a dietitian and/or healthcare professionals to determine if this is a safe route.
Ben’s blends have changed over the years as he has grown older, with supportive dietitians helping to check the foods are nutritionally complete with enough protein, carbs and fat for Ben to thrive. Ben has hit a healthy weight and seen significant improvements to his sickness, reflux and constipation. He joins the family at the table for mealtimes and can have occasional tasters of his favourite foods such as chocolate and custard, via a little bit on his lips.
Jessica credits tube feeding with ‘keeping Ben alive and allowing him to thrive over the past 13 years’, explaining that it would have been a huge challenge to keep Ben fed and hydrated without the aid of a tube.
“We are hugely grateful for Ben’s tube. It was intimidating at first, but now it has become our normal. Everyone’s daily life is different, so highlighting the lack of awareness around tube feeding will help change people’s perceptions and encourage people to be more understanding.”
In fact, the Talking Tube Feeding research revealed a demand for a greater understanding of tube feeding, as nearly a quarter of people (24%) say they’d like to ask someone why they are tube fed.
Jessica has found people are naturally curious about Ben’s tube and the reasons behind putting blended food or water through it.
“Once we have explained, people are always very understanding, and we feel comfortable feeding Ben in any location at any time.”
A Talking Tube Feeding spokesperson, Annina Whipp (Specialist Paediatric Dietitian), said: “The research highlights some surprising findings towards the general public’s awareness and preconception on the practicalities and indications of tube feeding. We hope by gathering the research we can help educate the public on the various routes and methods of tube feeding and emphasise that tube feeding does not have to negatively impact a person’s quality of life. With evidence-based guidance and support from healthcare professionals, alongside valuable resources, including the Talking Tube Feeding website, individuals requiring tube feeding can thrive.”
For more information about tube feeding, including professional guidance and blended diet recipes, visit talkingtubefeeding.com