First Minister Nicola Sturgeon has agreed to a review of Motor Neurone Disease (MND) care for terminally ill patients after meeting Kirkcaldy man, Gordon Aikman.
Gordon, who was diagnosed with the rapidly progressing, terminal neurological disease in May at the age of 29, met with Ms Sturgeon last week.
He has launched a five-point fightback plan which includes campaigning for research funding into MND to be doubled, benefits to be fast tracked as well as a cancellation of care charges.
The former director of research at the pro-UK Better Together campaign is also calling for the Scottish Government to fully fund seven specialist MND nurses.
Speaking after the meeting, Gordon - who has raised £100,000 for MND research - said: ““We had a positive and productive meeting.
“The First Minister agreed to end the national scandal of charging terminally ill patients for personal care. We both believe the postcode lottery needs to end and Nicola Sturgeon says she will do whatever it takes.
“We discussed the shocking fact that specialist MND nurses are funded by charity - people running marathons and holding bake sales - instead of through our NHS. The First Minister has agreed to hold a review of specialist nursing across Scotland. MND kills – and fast. This review must happen fast and deliver for patients.”
Ms Sturgeon said: “I’ve been very moved by Gordon and his campaign to raise awareness of this terrible disease, and his reaction to his diagnosis has been nothing short of inspiring. We had a very constructive meeting and I am pleased Gordon and MND Scotland have agreed to work with us to map the provision of specialist MND nursing care and how this is supported.
“This will include looking at how specialist nursing care is provided and delivered.”
A number of events have been held over the last few months to raise awareness of Motor Neurone Disease and raise funding for research into the condition. These include a fundraising stand-up comedy night held during the Edinburgh Festival featuring Arthur Smith, Sara Pascoe and Patrick Monahan as well as a reception at 10 Downing Street in London last month. The special event was hosted by the Prime Minister’s wife Samantha Cameron.