Scientists conducting research into motor neurone disease have not received a penny of the £50m funding pot promised by the UK Government.
Calls for the money to be made available have intensified following the death of Scots rugby legend Doddie Weir on Saturday.
The Motor Neurone Disease Association said none of the funding was in the hands of researchers, with campaigners saying people with the disease are “running out of time” as the cash is held back by “red tape and bureaucracy”.
Weir died on Saturday at age 52, following a six-year battle with the disease.
He was diagnosed with MND in December 2016 and went on to found the research charity My Name’5 Doddie Foundation (MNDF).
The foundation has committed almost £8m to research projects across the UK to help fight MND, a condition in which the brain and nerves progressively degenerate.
However, further funding from the UK Government has been delayed, with health secretary Steve Barclay insisting it was due to the “quality of the research bids” and that the money “is there”.
Rugby star Kevin Sinfield said he “can’t see any reason” why scientists cannot access the cash.
The former Leeds Rhinos player has raised millions for MND charities after being inspired by Weir as well as his former Leeds Rhinos teammate Rob Burrow and ex-Bradford City captain Stephen Darby, who both live with MND.
He told BBC Breakfast: “The most important thing for someone who has been diagnosed is time and they’re running out of time.
“I can’t see any excuse or reason why that money has been held back.
“And if we’re going to help them make a difference and shift the dial on this disease, that money needs to be available sooner rather than later.”
Burrow also accused ministers of holding back the cash.
In a Twitter post on Saturday he wrote: “So sad to hear the news of the passing of my MND hero Doddie Weir.
“I’m sorry to say, how many more warriors die before this stupid government give the 50m they said they would give.”
The demands come after the government committed at least £50m to help find new therapies, and eventually a cure for the disease in November 2021.
Tributes have continued to pour in for Weir, who was described by First Minister Nicola Sturgeon as “one of our nation’s sporting legends”.
Players and supporters from Preston Lodge and Leith Hawks came together for a minute’s silence, on Sunday while East Kilbride and Livingston’s U14 Boys joined in applause with the visitors donning Weir’s iconic blue and yellow tartan headbands.
Applause was also held at McKane Park by Dunfermline Women and Grangemouth Women while in the Highlands, Ross Sutherland and Caithness youth sides marked out the pitch to create a number five.
Responding to the calls for funding, Barclay, the MP for North East Cambridgeshire, said: “The funding is there, we have that funding, we’re ready to allocate it.
“The delays so far has been in terms of the quality of research bids, that has come in on MND – it’s not an area traditionally that has had a huge amount of medical research activity.
“So we’re working with the MND community to find the best way of getting that money allocated.
“It’s not an issue of finance, the money’s available, it’s ready to allocate.
“At the same time, we want to make sure that it goes on the right research and that’s what the chief scientific adviser within the Department of Health – Professor Lucy Chappell – is actively engaged on.”
Dr Brian Dickie, director of research development at the Motor Neurone Disease Association, said: “We share the frustrations of so many within the MND community that one year on from the promise of funds for targeted MND research – £50m over five years – none of it is in the hands of researchers.
“We have had reassurances from the top of government that the committed funds will be delivered in full – it’s developing the mechanism for researchers to access the money in the most effective and efficient way that is causing the delay.
“Along with neurologists, the people with MND who spearheaded the United To End MND campaign, and other charities – MND Scotland, My Name’5 Doddie and LifeArc – we are working closely with the government to develop a clear and streamlined process. We are doing everything we can to speed up those discussions.
“People with MND don’t have time to waste. The death of Doddie Weir at the weekend has demonstrated that graphically and we owe it to him, the 5,000 people currently living with MND and the six people who are diagnosed every day to get the promised funds into the hands of researchers to push forward the vital work towards finding treatments and a cure.
“In the meantime, we are pushing forward development of the virtual MND research institute, with work under way to establish the necessary processes and capacity.”