Most people with MND will have their speech affected. Some may struggle to speak clearly while others will lose their ability to speak altogether.
Those affected need to find alternative ways of communicating with loved ones and the professionals who care for them. This could be pen and paper, an i-pad or, as someone becomes increasingly disabled and can potentially no longer use their hands, 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.
Communications equipment is a life line for many people with MND, yet too many have to buy their own or rely on charity services like our communication aids loan service. It’s use has steadily increased and MND Scotland found itself, again, plugging an NHS gap.
In England, a legal duty on the NHS to supply communications equipment to those who need it has existed since 2012 but there was no such duty in Scotland.
During MND Awareness Week in June 2015, MND Scotland launched it's 'Let Me Speak' campaign. We called on the Scottish Government to introduce a legal duty on the NHS to provide communications equipment to those who need it, highlighting that people with MND should be treated as a priority. A recurring fund for the provision of communications equipment was also needed.
We encouraged our supporters to get in touch with their local MSP asking them to back the campaign. We also asked people affected by MND and MSPs to pledge their support by taking part in a Silence Speaks sponsored silence and posting a #SilentSelfie on social media to help raise awareness.
With the backing of the First Minister, and other party leaders, the right to receive communications equipment became law in March 2016. On 19th March 2018 this law came into effect.