myTube – a new educational website about feeding tubes in MND

April 2017

A new website is now been launched, aimed at supporting people who are thinking about getting a feeding tube fitted and people who would like advice about using one. Cathy Soreny (filmmaker and nurse) talks to us about a new project from SITraN that involved members of the SMND RAG.

Motor Neurone Disease can affect eating in various ways; such as affecting swallowing and chewing, or difficulties with using cutlery. People can start to choke, get chest infections and lose weight. A feeding tube may be suggested during a visit to clinic. Feeding tubes – often also called PEG, PIG or RIG tubes – enable liquid food to be passed directly into the stomach. Quite understandably people often feel a little alarmed and confused when a feeding tube is suggested. What will it look like? How will it feel? How will we cope with using it? There can be many questions, and sometimes people delay having a tube due to their concerns.

Dr Chris McDermott’s research team at SITraN in Sheffield has been very aware about these worries. They conducted a research study called ProGas to find out more about the pros and cons of feeding tubes in MND. One element of this study was interviewing people about how they felt about feeding tubes – first when they were deciding whether to have a tube or not, and then after they had had it fitted. Many useful ideas and themes came to light, and the SITraN team wanted to make sure that this information could be turned into easy to access advice for anyone thinking about a feeding tube.

Chris approached me and my team to tackle this, as we had made the myNIV website a couple of years ago, where people could learn more about using non-invasive ventilation machines. For myTube we again  worked with a group of people who were living with MND and their carers, so their ideas and voice would be at the heart of everything we did. The whole project was a collaboration between these people, filmmakers, web designers and clinicians. myTube has been funded equally by the MNDA (the local South Yorkshire branch and central office) and Sheffield-based Westfield Health Charitable Trust.

From February until July this year we held four half day workshops. We asked the patient and carer group for their detailed thoughts and reflection on the research findings, and how these issues affect them in their daily lives. One key idea really came out of our group discussions – everyone felt they never had the chance to meet someone with a tube before they had their own fitted. So they wanted the website to be a way to ‘meet’ people, hear about their experiences and see their feeding tubes in use.

The website developed into a collection of short films, featuring the myTube team in their own homes, talking about how they made their decision, how they feed with their tubes and useful troubleshooting tips. The films are supported by brief sections of text and a list of carefully selected resources from trusted organisations, such as the MNDA’s range of fact sheets.

We are extremely proud of how this project has come together over the past year and much credit is due to the wonderful group of patients and carers who contributed so much – ideas, insight, honesty, creativity and humour! We would like to thank them all for making myTube a success – Marlene and Trevor Leigh, Terry and Rose Hobbs, Jason & Liz Liversidge, Michael Hickman, Dave Booker and Brian Jackson.

myTube website

Participants at a myTube workshop
Screenshot of the myTube website