MND Scotland has created videos using the voices and experiences of real people with MND to provide practical tips and advice on living with condition
A national charity has created a series of animated videos to help people living with motor-neuron disease (MND).
MND Scotland teamed up with NHS Lothian to create the films that use the voices and experiences of real people affected by MND.
The videos are aimed at helping people with MND and their families with practical tips and advice on living with MND. The three topics cover preventing falls, what to do when someone is choking, and considering having a feeding tube inserted.
This peer-to-peer approach of using real people affected by MND, means that those watching the videos will benefit directly from the experiences others who have been in these situations.
Research revealed the most common reason people with MND are admitted to hospital is because they have fallen at home.
On average they spend five days in hospital and in some cases people have lost their care package or even benefits because of this.
Therefore, the first video created – Don’t let MND trip you up – aims to give people with MND and their families practical tips and advice on how to avoid falls.
People with MND can often choke on air or saliva but it does not mean someone is choking on food or dying. However, it can be a very frightening experience not only for the person with MND, but also their loved ones.
The second video – Focus on breathing – gives advice to family carers who may witness a choking episode, provide tips on what they can do and reassure them the sensation will pass.
People with MND may need to have a feeding tube fitted. The third video – My decision, 100% – looks at one person’s experience of getting the feeding tube fitted and why it is beneficial to have the procedure before you need it, but also to highlight that it is up to each individual person what they choose to do.
These videos will be used by health professionals and MND Scotland to help improve the lives of those affected in Scotland, and beyond. MND Scotland also launched a video – You just have to ask – which highlights the support available from the charity.
Roslyn Scholarios, MND Scotland’s head of direct services, said: "These videos represent the first step in our commitment to develop new high-quality, accurate and accessible information that meets the needs of those affected by MND, allowing them to make informed decisions.
“I’d like to thank everyone who shared their personal experiences to help others in a similar situation and to the MND Clinical Specialists at NHS Lothian, who contributed their professional experience and knowledge to the project. It’s by working together that we can ensure people affected by MND receive the best information and support possible.”
Judith Newton, national nursing lead for MND, said: “I am delighted to have been part of this collaborative work and launch these videos with MND Scotland. The team of MND clinical specialists throughout Scotland aim to give as much information to people and families living with MND so they can make decisions that are the right ones for them. We aim to inform and communicate with people in a variety of ways and videos are a powerful resource. We can use these videos to introduce difficult themes with patients and families and develop our discussions from there.”
The videos and additional information can found at www.mndscotland.org.uk/living-with-mnd.
