Motor Neurone Disease Communications Campaign

By: A.C.

Motor Neurone Disease is a name given to group of similar conditions. These illnesses cause damage to the nerves called Motor Neurones, and the disease is increasingly debilitating until organs or muscles that support life no longer work.

Not everyone is affected in exactly the same way, but about 88% of those who have the disease find that their speech is affected and communication becomes impossible.

Professor Stephen Hawking is the most notable person who communicates solely by electronic means. You can see a very revealing documentary here made by Dara O’Briain when he met Professor Hawking on the BBC iPlayer (available for 30 days from date of broadcast). 

To read in text how Dara got on during his meeting with his childhood hero go here.

The award winning MND Scotland have mounted a campaign for those who support a move to change the way that such equipment is made available in Scotland. In England this vital communication equipment is made available through the NHS, but in Scotland that is not the case. MND Scotland explain in a press release:

“Those affected need to find alternative ways of communicating with loved ones and the professionals who care for them. This could be using a pen and paper or a range of Augmentative and Alternative Communication (AAC) devices. This ranges from i-Pads to sophisticated eye-gaze technology which allows the person with MND to control a computer by use of their eyes and a text-to-speech synthesizer. AAC equipment is a life line for many people with MND, yet too many are having to buy their own equipment or rely on charity services, such as our own communications equipment loan service. Use of this service has increased steadily over the last few years, as our charity finds it is, again, plugging an NHS gap. People with MND should be able to rely on the NHS to provide them with the equipment they need to communicate with their family, friends and professionals involved in their care. If dependent on NHS services, people with MND in Scotland could die without a voice.”

To lend your voice to the campaign or to show support, you could take part in the Silence Speaks campaign.

Or simply write to you MSP showing support. It’s easy just click here to find your MSP by postcode, then email them at the address provided.

First Minister Nicola Sturgeon – amongst other Political leaders – is quoted in the press release as saying;

“We’re keen to make sure that equipment like this, which is a lifeline for many people who have lost their voice through conditions like MND, is available routinely on the NHS.

“This is fantastic technology, the technology is developing all the time and we need to make sure that how we are dealing with these things on the NHS keeps pace with that.

“We’re looking actively at this just now. We are working with MND Scotland, just like we did through the provision of increased specialist nursing capacity”.

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