For more than five years, Marjorie “Mardi” Carter has been reliant on receiving her nutrition through a feeding tube into her small bowel. Following treatment for oesophageal and breast cancer, it left her unable to eat and drink enough. Mardi, now 85 years of age and living with her daughter Liz says “once you get used to it, it’s really quite easy, but when you first start, you think, I’ll never learn how to do this.”
The home enteral nutrition (HEN) service allows people to access tube feeding formula and equipment at home. It involves a team of specialist dietitians, doctors, nursing and allied health care professionals. “I can’t imagine being left to do it without the team behind you, it would be very difficult” Mardi’s daughter Liz says. Children and adults requiring HEN have complex healthcare needs, provided under a number of services, often resulting in fragmented care.
Dr Russell Canavan, Gastroenterologist and Director of Digestive Health at Gold Coast Hospital says “HEN allows for patients to be managed in the community who otherwise would be stuck in facilities”. He identified one of the challenges, particularly for people living in remote areas is maintaining continuity of care between providers.
The Australasian Society of Parenteral and Enteral Nutrition (AuSPEN) led by Alfred Health Dietitian, Caroline Flood, is undertaking a survey across Australia and New Zealand to better understand how HEN services are provided across the region.
Professor Ibolya Nyulasi, AuSPEN President and Manager of Nutrition Services at Alfred Health, says “the integral role of nutrition in improving health is becoming increasingly recognised. We hope this project will help inform policy to ensure quality and timely care across services for people who require this lifesaving therapy to prevent and treat malnutrition”
Mardi says, “if you have to be tube fed, don’t be frightened of it because it works, it’s just fantastic, it’s a wonderful thing that someone has discovered”