Rob’s Story: Life with a feeding tube
Feeding tubes are used to help people in a number of different circumstances and may be required temporarily or permanently. They can be used to provide nutrition:
- for people who can eat and swallow, but just can’t eat or drink enough to meet their nutritional requirements
- for people who can’t swallow food or fluids safely. For example - the tube might be used for a short time whilst a person is having medical treatment or all the time if the person is permanently unable to swallow food or fluids.
The idea of needing and using a feeding tube can be confronting and challenging for patients and their families and they require ongoing support from a range of health professionals.
In 2014 the ACI Nutrition and Gastroenterology Networks, together with the Gastroenterological Nurses College of Australia (GENCA), released 'A Clinician’s Guide: Caring for people with gastrostomy tubes and devices'. This Guide provides up to date information and practical advice to help clinicians provide the best care for patients and families.
It is important that all health professionals consider the patient perspective. In this video Rob and his wife Lynne explain their experience of living with a gastrostomy feeding tube.
This video has been translated into community languages. Click on the tabs to hear the video in each language. Click on the subtitle icon to view the subtitles on each video.
Top tips for people with a feeding tube and their carers
- Work with your health professionals to develop a feeding plan that fits in with your lifestyle.
- Ask questions whenever you need to.
- Talk to your health professionals about any concerns or worries you have.
- Keep this information handy:
- type and size of the feeding tube and the date it was inserted or last replaced
- your feeding plan
- contact numbers for your health professionals.
Top tips for clinicians providing care for people with a feeding tube and their carers
- Discuss the different tube feeding options with the patient/carer
- Work with the patient/carer to develop a feeding plan that fits in with their lifestyle
- The patient should not be sent home without:
- Adequate education and written information about the tube and equipment, site care and their feeding regimen in their first language and in terms they can understand.
- Access to an adequate supply of equipment and nutrition formula and information about how to access ongoing equipment and supplies.
- Contact details of all relevant health professionals.
- Ensure there is a system for ongoing support and monitoring, especially for patients and families that are new to tube feeding. Provide these details to the patient/carer.
More information and support
- NSW Agency for Clinical Innovation (ACI)
- Gastroenterological Nurses College of Australia (GENCA)
- Gastroenterological Society of Australia (GESA)
- “AU Tubie Support” – a closed Facebook group
- Carers NSW
- Lifeline, phone: 131114
- The Oley Foundation (USA)
- Patients on Intravenous and Naso-gastric Nutrition Treatment (PINNT - UK)