Vital services for people in Glasgow with "one of the cruellest and most devastating diseases in the world" are set to be axed.
A charity claims that patients suffering from Huntington's disease and their families will lose support and care due to funding cuts.
Huntington's is a hereditary disorder that slowly damages the brain, affecting the ability to walk, talk, eat, drink, make decisions and live independently.
It resembles a combination of dementia, Parkinson's and motor neurone disease; there is currently no cure.
American folk singer and composer Woody Guthrie, who died from Huntington's in 1967, playing his guitar. (Image: John Springer Collection/CORBIS/Corbis via Getty Images)
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The Scottish Huntington's Association (SHA) states that around 800 people in Scotland have signs of the condition, and almost 3,200 are at risk of carrying the gene.
Every child of someone affected has a 50/50 chance of inheriting the neurodegenerative gene, which causes Huntington's disease (HD).
CEO of SHA, Alistair Haw, said: "In March, Glasgow City decision makers were briefed that specialist care and support could be ended without any detriment to Huntington's families.
"This conclusion was reached without any consultation with people who understand the service or the condition, and flies in the face of the Scottish Government-backed National Care Framework for Huntington's Disease.
"As things stand, our Glasgow City Service is due to end on 31 December 2025."
On Thursday, October 23, Nora Guthrie, the daughter of legendary folk musician Woody Guthrie, who passed away from the disease in 1967, visited Glasgow to back calls for the decision to cut the services to be changed.
CEO of Scottish Huntington's Association, Alistair Haw as 'Vital' healthcare services in Glasgow are 'to be axed' (Image: Supplied)
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Nora Guthrie at Glasgow's Clutha bar where her father Woody played in 1944 (Image: GordonTerris/Herald&Times)
Nora visited the Clutha, where Woody is believed to have played in 1944, and spoke with the Glasgow Times about the condition, calling the cuts "ridiculous" and "reprehensible."
She said it "didn't make sense" to cut services, even though earlier this year, a breakthrough treatment for the condition showed the disease was slowed by 75% in patients.
Her "whole relationship" with her father revolved around HD and his care for it.
Her mother, Marjorie, cared for her father and invented many ways to help him deal with the condition, which are commonplace today.
These included laceless workboots, because he couldn't tie shoelaces, and other "fashion" items which "set the trends" of the 1960s folk scene, including those of Woody's loyal friend, Bob Dylan.
After Woody's death, Marjorie started the first Huntington's disease organisation in America in 1968, and "she went on a mission to find a cure."
By the time of his death, Woody could not walk, talk, eat, or drink. Writing, playing the guitar and singing had long since become a thing of the past.
Yet, fellow musicians, including a starstruck Bob Dylan and Pete Seeger, continued to visit Woody in hospital, as depicted in the 2024 hit movie A Complete Unknown.
Speaking about the film, Nora said: "It was helpful in some ways because it just showed how devastating the disease was. Unfortunately, they didn't name the disease, which would have really helped awareness."
Nora also spoke about the "cruelty" of Huntington's, saying: "It's a very slow-moving disease, which makes it incredibly difficult also for the families because the families are busy taking care of people for 15, 20, 25 years."
"My dad couldn't really talk, and there was no physical contact because his body was always moving. I would hold his arms back to hug him.
"There could also be episodes of violence, which meant we couldn't be around, but my mom was always there to take care of Dad and looked after his wellbeing for the rest of his life."
She added that it felt "like one step forward and two back" to hear of the cuts, saying, "We need help, that's what governments are supposed to be doing."
Nora Guthrie next to the River Clyde in Glasgow (Image: GordonTerris/Herald&Times)
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A spokesperson for Glasgow's Health and Social Care Partnership (GHSCP) said: "At its meeting on March 19, 2025, the Glasgow Integration Joint Board approved its 2025/26 budget plan.
"This included a decision not to exercise an option to extend an expiring contract with Scottish Huntington's Association.
"This decision was taken on the basis that the Health and Social Care Partnership (HSCP) resources will be deployed to continue to support people with Huntington's Disease in the city.
"The basis for the IJB's decision has been subject to significant and detailed scrutiny.
"Arrangements are being made within the HSCP to determine the level of support and continuity of support that may be necessary."
However, SHA fears that specialist services and support will not be offered to those with Huntington's.
An SHA Spokesperson said: "If the HSCP does have plans for a specialist service, it would be good to know what they are.
"We meet regularly and have not been made aware of any that are planned or are in place.
A motion was tabled in the UK Parliament on June 16, 2025, against the cuts, during which six members "expressed concern over the proposal to end funding" and called for a consultation.
GHSCP confirmed that no consultation had taken place, but they "are contacting the patients directly as part of the transition."
CEO of SHA, Alistair Haw, said: "Despite repeated calls to stop the cuts, Glasgow City seems determined to double down on its original decision at all costs and in the face of all evidence and expert opinion that our proactive community-based support reduces crisis situations and saves both money and lives.
"It's not too late for decision makers to review this decision based on expert opinion, and save both money and lives as a consequence.
"Our preventative community-based services were established because generic crisis lead services were shown to be catastrophic.
"Our call is for Glasgow to learn the lessons of the past rather than repeating them at the expense of one of the most vulnerable groups in our society.
"That would be both entirely avoidable and unforgivable."
Nora Guthrie at Glasgow's Clutha bar with a replica of her father, Woodie Guthrie's, guitar (Image: GordonTerris/Herald&Times)
Nora added a final message to decision makers, she said: "Stop the cuts, it's simple logic. Get to work. Get the funding. Help your people."
And to those dealing with the disease, she said: "It might need care, but it's not despair.
"My dad lived a good and meaningful life, and so can anyone with Huntington's."