Sue Ryder is calling for the Scottish Government to push health boards to ensure that progress is made
A Motor Neurone Disease (MND) campaigner has backed calls for improvements in neurological care in Scotland.
Calum Ferguson was diagnosed with MND in 2010 when he was just 46 years old.
The father of three from Dunblane continued to work for a further two years until he became wheelchair bound in March 2012. He was transferred to Strathcarron Hospice nine months later where he was ventilated, had a feeding tube fitted and was not expected to live for more than six weeks.
However, having originally been sent home to die with a care package in place from Stirling Council and NHS Forth Valley, a combination of round the clock care, equipment and physiotherapy led to Calum’s condition stabilising and he is looking forward to spending another Christmas with his family.
And now he is backing Sue Ryder’s Rewrite the Future campaign, which is calling for the Scottish Government to take forward improvements in neurological care in Scotland.
“I am living proof that having a good care package in place prolongs life,” he said.
“A life is a precious gift and due to the lack of care provisions many families are having less time to spend with their loved ones.
“I see myself as one of the few fortunate ones as there are many MND sufferers out there who, due to the postcode lottery, have limited access to much of this care and equipment.
“But this needs to change – everyone with a neurological condition should be entitled to far better care packages so that they can make the most of the life they have left.”
It found that while progress was being made at a national level, not much had changed on the ground for people with neurological conditions.
Despite being asked last time round if health boards had a neurological services plan, in line with the national clinical standards, this time round the situation hadn't improved.
Nine out of Scotland’s 14 health boards had no such plan, one said it had a draft plan and four had plans which expire this year.
A debate on the issue was held in the Scottish Parliament this week, with the government pledging to do everything in its power to address the situation.
Pamela Mackenzie, director of neurological care and Scotland at Sue Ryder, said: “The integration of health and social care, so far, has done little to improve services on the ground for people with neurological conditions.
“Indeed, they are at risk of being left behind as reforms continue.
“Sue Ryder welcomes the Scottish Government’s commitment to improving neurological care and believes the action plan, together with new standards for neurological care, has the potential to be a major step forwards in improving care.”
