Borders campaigner welcomes Lewis Capaldi's decision to open up on struggles with Tourette's in new Netflix documentary
'Even now, it's the same as what it was when I was diagnosed in the '80s. You're given the diagnosis, you're sent on your way, and you're just kind of left to get on with it.'
Last updated 5th Apr 2023
There's a call for more support for people diagnosed with Tourette's syndrome.
It comes as Scottish singer Lewis Capaldi opens up on his struggles with the condition in a new Netflix documentary.
Borders campaigner John Davidson says clinical support hasn't changed much since he was first diagnosed in the 1980s.
He hopes the Brit-award winner's decision to share his experience will help raise awareness and make it easier for others to get help.
"Life can be a real struggle for anybody living with the condition," John told us. "But I think it will be especially so for Lewis, being in the public eye all the time.
"When you're diagnosed with the condition, GPs/consultants don't know where to send people because there are no NICE guidelines.
"We're fighting and campaigning at the moment with the government, trying to get as many people to sign petitions and the like. But it's a very slow process."
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NICE guidelines are evidence-based recommendations, which set out the care and services suitable for most people with a specific condition.
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John, who was awarded an MBE for his own efforts to raise awareness of Tourette's syndrome, continued: "Even now, it's the same as what it was when I was diagnosed in the '80s. You're given the diagnosis, you're sent on your way, and you're just kind of left to get on with it.
"So, I think having someone with such a high-profile, who's willing to talk about his condition and about how it affects him, will definitely help."
Tourette's syndrome is a neurological condition that causes a person to make involuntary sounds and movements called tics.
There's no cure, but treatment can help manage symptoms.
Speaking to Greatest Hits Radio, John said: "I struggle with pain at the end of every day; I've got muscle ache, joint ache; I've got damage to verterbrae in my neck; my knees aren't great. And it's just years and years of ticking, and fighting against what you're body really should be doing.
"Lewis is able to kind of normalise what things are about with Tourette's, and people get it because they look up to him as a pop star."
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When asked what advice he would give anyone who had recently been diagnosed, John, from Galashiels, revealed reaching out to people with lived experience of the condition helped him.
"It allows people to understand that they're not alone," he said. "There are other people out there.
"When I was coming to terms with my condition, there was only one (support) organisation in the UK at the time - the UK Tourette's Association.
"There wasn't as many members then, but now we're looking at thousands upon thousands of families who are affected. And we need to get a clinical pathway for people so they can get the aftercare they deserve."
'Lewis Capaldi: How I'm Feeling Now' is streaming on Netflix from today (Wednesday, April 5th).
Do you have a health-related story you'd like to share on the radio? Email our reporter: ally.mcgilvray@bauermedia.co.uk