Christina McKelvie MSP, long-time campaigner on behalf of those suffering from Motor Neurone Disease (MND), says she is delighted to hear that an amendment to the Health Care (Scotland) Bill establishes a statutory right to the provision of communications equipment for patients.
Christina has put a Motion down at the Scottish Parliament.
“This is a vital amendment that recognises how isolating and devastating the loss of voice is for MND sufferers. The ability to communicate readily with family and friends is something most of us take absolutely for granted. Imagine if you gradually found you couldn’t do that any more.
“I’ve been working towards this statutory right for a long time time and I’m very glad to see that there is now available to every sufferer the means to cross the communications gap.”
Christina hosted the first MND voice bank at the Scottish Parliament, encouraging colleagues and staff to make voice recordings that can be used to emulate the natural voice tones. New technology allows speech patterns to more closely follow the voice of the user.
The voice bank at the Euan MacDonald Centre for MND Research in Edinburgh is working towards using the limited capacity of MND sufferers to record their own voices soon after diagnosis. Researchers hope to then create a synthetic voice that will sound more like the original person’s, copying their own inflexion and dialect or accent.
TEXT OF THE MOTION
Motion Number: S4M-15483
Lodged By: Christina McKelvie
Date Lodged: 27/01/2016
Title: Introduction of a Statutory Right to Communications Equipment
That the Parliament welcomes the introduction, on 26 January 2016, of an amendment to the Health (Tobacco, Nicotine etc. Care) (Scotland) Bill to establish a statutory right to the provision of communications equipment; understands that the voice loss for many people with motor neurone disease (MND) can have a devastating impact on their life and that this legislation will allow them to communicate and improve their conditions of care; congratulates MND Scotland on its sustained work and especially its Let me Speak campaign, which was launched in June 2015, and wishes both MND Scotland and the Scottish Government all the best in their work to improve MND car