Dad with 'twisted neck' condition urges Scottish Government to act for invisible patients
A dad who has lived with an excruciating "twisted neck" condition for decades has issued a plea to the Scottish Government to do more for people with 'invisible' neurological conditions who are falling between the cracks.
Donald MacPhee, 65, from Bishopton in Renfrewshire, suffers from spasmodic torticollis, also known as cervical dystonia — a neurological disorder that causes uncontrollable muscle spasms in the neck, twisting his head painfully to the side.
The retired Gaelic development officer, who first developed symptoms while working abroad in his 20s, says the condition has robbed him of confidence, independence and everyday comfort.
'It's like being stuck in purgatory,' Donald said. 'You want answers, but you know they're not there yet. It's tough, but you have to live with it day to day.'
Donald relies on regular botox injections and physiotherapy, but says even specialist neurological centres have offered little in the way of meaningful long-term treatment.
'Every NHS professional I've met has been caring— but the lack of knowledge of dystonia, especially at GP level, was clear. It has improved now but that's because they've learned it all from me.
'People don't realise how much it affects you. It's not life-threatening but it is life changing.
"Things like eating or driving become hard, and you lose confidence to go out. Even simple tasks around the house are quite difficult.
'Fatigue, sleep problems, and the way you're breathing, and your throat area can be affected too, so that makes it awkward for me to speak sometimes.
'The lack of treatment options, even in neurological centres, is striking.
'There's not enough investment in neurology. Neurological conditions affect more people than ever, yet funding and resources are limited.
'It's frustrating because better support could help people live healthier, more productive lives."
Donald's story comes as a damning new report said people with neurological conditions in Scotland are struggling to cope — and many feel abandoned by the healthcare system.
The Neurological Alliance of Scotland's survey, Today's Challenge, Tomorrow's Hope, gathered over 1,000 responses from adults, children and carers, exposing widespread hardship and mental health strain.
Key findings show 64% of adults are not coping well, while 87% say their condition negatively impacts their mental health — up from 80% in 2022. More than half feel unsupported by the NHS, and nearly one in three say they are not coping financially.
It also said carers are at breaking point. More than half provide over 50 hours of unpaid care each week, while 82% say children in their care suffer regular frustration and anger from symptoms.
Becky Duff of the Carers' Trust said people with neurological conditions and their families are 'still invisible,' with promises of support rarely matching reality.
She said: "We are seeing an increase in both the numbers of people caring and the hours of unpaid care being provided.
'We need to act now to ensure that those living with neurological conditions and those caring are properly supported."
The Scottish Government's five-year Neurological Care and Support Framework , which ended in March 2025, originally promised £4.5 million in funding — but only £3.2 million has been delivered so far. With Scotland's ageing population and the rise in complex neurological diagnoses, campaigners say urgent and sustained action is needed now — not later.
The Alliance is calling for urgent government action, including investment in neurological services, named care coordinators, and specialist training for social care staff.
Programme director Alice Struthers warned: "The time has come to prioritise investment into building the neurological workforce and increasing service delivery. If not now, then when?'
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