myNIV

Author: Lee Aplin

myNIV is a resource for people affected with motor neurone disease (MND) who use non-invasive ventilation to improve the quality of their lives.

MND is a term commonly used to group together disorders that affect neurones, including amyotrophic lateral sclerosis (ALS) which was at the forefront of the media this year when it received an enormous amount of financial support due to the phenomenon of the ice bucket challenge.

After several years conducting NHS funded research into people’s experience of using NIV the Sheffield MND Care and Research Centre created a detailed list of the things that help and hinder people when using it. This list was the basis for an online resource to aid NIV users in getting the most out of the care provided for them.

A common issue for people when they begin using NIV is that there is not always help instantly on hand if problems occur. During the research process, NIV users expressed a great deal of interest and enthusiasm in creating a resource which would be accessible at any time and could potentially help somebody to resolve issues that they might have when other support is not available.

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With help from Ammba and Optical Jukebox we conducted workshops to gather advice from a team of patients as well as carers who had extensive personal experience of using NIV in day-to-day life. It was designed to be quickly and easily accessible to anybody looking for help or information on how to get the most out of their NIV machine, and as such allows users to bookmark or favourite certain areas of the site for future reference as well as providing a clear and logical progression of content to navigate through the site.

To make the site as accessible as possible we optimised it for use on mobile devices and tablets, as well as ensuring it could be navigated with the tab key as easily as with a mouse or a track pad.

Providing visitors with top tips from experienced NIV users, videos and step-by-step guides, the site hosts a wealth of useful information directly from people who have experienced the same problems. Part of the appeal of a resource like myNIV is knowing that you are not alone and many other people have already overcome issues that you may have to face, and having content thoughtfully and accurately curated by such people makes myNIV a valuable website which we hope can prove to be helpful and informative.

myNIV was a sobering yet rewarding project to work on, and based on the success of this initial site we are hoping to address wider issues concerning MND in a future stage of development.

Visit the site at niv.mymnd.org.uk