About myNIV

About the myNIV website and tablet app

myNIV is a web-based resource about NIV (non-invasive ventilation) that has been designed by people living with MND and their carers – in collaboration with web designers, filmmakers and healthcare professionals.

We like to think of myNIV as an additional member of your care team – almost like a ‘virtual respiratory specialist’. At a time to suit you, you can check out some top tips, read background information or watch videos on technique – and then share these with your family and friends. It is the first stage of a project called myMND and will be joined by other web resources covering key aspects of living with MND.

Our team of patients and carers worked together over four design workshops in the spring and summer of 2014 to develop the first phase of this website. They all have extensive personal experience of using NIV in daily life and are well placed to ensure the design and content of this resource works well for new users. You can watch our short film about the making of myNIV and hear how people like you wanted to make a difference.

If you have any thoughts on the website we would love to hear your feedback – please take 5 minutes to fill in our quick questionnaire and you can help improve this site and share your top tips for using NIV.


Background to myNIV

The basis for the content of the website has come from several years’ worth of NHS funded research into people’s experience of using NIV.

The Sheffield MND Care and Research Centre interviewed many people about what worked or did not work for them when using NIV. This detailed list of things that help or hinder people when using NIV was the starting point for our design workshops and was fine tuned by our patient/carer design team into the website you are reading now.

The design team of Optical Jukebox and Ammba Digital facilitated the workshops and put the designs into action.

We are keen to develop it further – do fill in our quick questionnaire if you have any ideas or comments!

We are extremely grateful to Westfield Health Charitable Trust for their grant that enabled the development of this website.


Making the most of the myNIV website and tablet app

This resource covers a wide range of information on using NIV and is ideal for both new users and those who are more experienced.

We hope you find it easy to find your way around, but just in case, here is a quick overview:

Navigation: You can navigate through main sections using the tab across the top of the website.

Search: You can search the site for key words and info using the search boxes (magnifying glass symbol) at the top and bottom of the page.

Favourites: If you find a section you want to come back to and read or watch again, click the save to favourites button (star symbol) – it will now appear at the bottom of the site in the ‘Saved Favourites and Tips’ section for quick access. You can easily remove pages from your saved favourites by clicking the small cross, and add new ones.

Share: If you see a section that you want to share with friends, family or a carer click the share button (arrow symbol) – you can now email the link.

Accessibility: the website works fully with the tab key, as well as with a mouse, track pad or on a touch screen tablet. The next stage of development will address wider accessibility issues, and we would value your feedback.