MND patient website wins national award for helping others to make life-changing decisions

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A pioneering website on which Motor Neuron Disease (MND) patients across Yorkshire share their personal stories and the difficult care decisions they have faced has won a prestigious national award.

The unique online resource myTube, developed by the Sheffield Institute for Translational Neuroscience (SITraN) at the University of Sheffield and the MND Care Centre, scooped the Nutrition Resource of the Year Award from Complete Nutrition Magazine - the UK’s number one clinical, medical and health nutrition publication.

Mytube aims to provide support to patients as well as carers and their families who are facing difficult decisions about care interventions – specifically feeding tubes.

The website contains a number of pragmatic, honest and personal videos from MND patients and carers discussing their own views and experiences with feeding tubes.

The patients and carers took the research conducted at SITraN by Prof Chris McDermott’s team and made it real and relevant to everyday life for those affected by MND.

The myTube team included patients and carers and past members of the South Yorkshire MND Association and members of the Sheffield MND Research Advisory Group of patients and the public, SITraN researchers, and Registered Nurse filmmaker and videographer Cathy Soreny to record patient stories about having a Percutaneous endoscopic gastrostomy (PEG) tube fitted.

From thinking about it, deciding to have it, deciding not to have it, and the practical reality of living with and caring for someone with a gastrotomy feeding tube, a wealth of lived experience is conveyed in the collection of short videos on the user-friendly website.

Cathy Soreny from the myTube team said: “The current evidence about decision making prior to having a gastrostomy feeding tube placed was interpreted and presented under the expert guidance of our patients living with Motor Neurone Disease (MND) and their families.

“The collaborative process that followed, allowed the relevant clinical information to be translated through the words of the patient themselves in a series of short films.

We are so pleased that the health professionals who have voted for MyTube recognise the value of this resource, and we hope that they will continue to recommend it to patients living with MND who are making the decision about gastrostomy tube placement.

The myTube website is great example of what can be achieved to benefit patients’ and carers’ lives through their involvement in research, providing a great, independent online resource for those facing a similar challenge.

Additional information

For more information about myTube visit http://mytube.mymnd.org.uk/

The University of Sheffield

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