Alisa Brownlee, ATP, CAPS blog offers recent articles and web information on ALS, assistive technology--augmentative alternative communication (AAC), computer access, and other electronic devices that can impact and improve the quality of life for people with ALS.
Any views or opinions presented on this blog are solely those of the author and do not necessarily represent those of the ALS Association.
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Tuesday, March 14, 2017
myTube – New educational website about tube feeding and MND launches
A new website has launched aimed at supporting people who are thinking about getting a feeding tube fitted and people who would like advice about using one.
myTube has been made in collaboration with people living with MND who wanted a way to ‘meet’ people and see their feeding tubes in use. Hearing their experiences can help you to make your own choice about whether to have a feeding tube fitted or not.
The website also gives an insight into what life can be like living with a tube through personal stories and videos. The videos are supported by brief sections of text and a list of carefully selected resources from trusted organisations, such as our own range of information sheets.
Cathy Soreny (filmmaker and nurse) explains about the new project from SITraN came about:
Dr Chris McDermott’s research team at SITraN in Sheffield led a UK wide research study called ProGas to find out more about the pros and cons of feeding tubes in MND. The study involved clinical teams and researchers around the UK. 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 my team and I 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 MND Association (the local South Yorkshire branch and National Office) and Sheffield-based Westfield Health Charitable Trust.
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