During HAN Week 2021 we are pleased to update you on our Top Tips Guide for people using enteral nutrition
Background to Project
Ever been stuck with a blocked tube? Unsure how to tape your naso-gastric tube? Struggling to store all those feed supplies? Wondering how to accessorise that tube?
Being an enteral tube user comes with many questions such as these. When we first get a tube, we are given the basic information by healthcare professionals and sent on our way, but there is so much more to managing a tube than what they can tell us. Most of us pick up our own tips, tricks and techniques along the way. The little things we do that make it just that bit easier, our own expertise in what works and what doesn't in the real world, the things you can only really know by living with a tube yourself. Wouldn't it be great if you could pick up all that expertise from day one?
Aims of Guide
PINNT is producing a 'Practical top tips for Enteral Tube Users' guide aiming to do exactly this. The aim of the guide will be to troubleshoot problems around enteral tube use and as a source of ideas for living well with a tube. We also hope this guide will be a useful resource for discussions with health professionals, ensuring you have the right information to hand to help them to help you. We recognise that tube users are the experts on their own conditions, and that the best knowledge on managing an enteral tube only comes from really living with one and experiencing any problems yourself. It is this wealth of experience and knowledge that we are aiming to draw on to create the guide.
What have we been doing?
Using a questionnaire on SurveyMonkey, we have collected ideas and tips from PINNT members who are existing enteral tube users across a number of suggested topic areas. We have also collaborated with Gift UK, a charity for people with Gastroparesis, and opened the questionnaire up to their members. The questionnaire remains open and can be found at: https://www.surveymonkey.co.uk/r/TopTipsHENusers
The topic areas range from practical things such as feed setup and unblocking tubes, to lifestyle factors such as what to take when going out. We have also included topics that focus on feeling good about your tube, as this is a really important aspect of life as an enteral tube user. We are also monitoring the PINNT member's Facebook group to pick up on common issues and problems to address - we've found this identifies more specific details, the ‘nitty gritty’ that people may not think to mention unless specifically asked as often you don't realise the knowledge you have gained until prompted by someone else's questions. (Consent to use any specific ideas has been requested as appropriate).
What are we going to do next?
Your ideas and tips will be collected and collated into a guide of ‘Top Tips for Enteral Tube Users'. This will be a guide for both new and existing enteral tube users, as a place to go to troubleshoot problems, answer questions, and as source of inspiration for improving life with your tube. It will be shared via the PINNT website and social media. The guide will relate only to non-clinical aspects of managing tubes and should not replace advice given by medical professionals.
In the long term...
Going forward with this project, we are planning to involve health professionals. For example, where common problems and issues have been raised as a result of your comments, we plan to involve dietitians and nutrition nurses. With their input, we hope to be able to identify best tips or clinical responses to these common problems and publish these in future guides, creating a two-way dialogue between us as tube users and the health professionals who address these issues. This should be mutually beneficial giving an increased understanding of life with an enteral tube and how best to live with it day to day, from the very beginning.