The Scotsman

Red tape ‘holding up £50m MND funding’

- By ELLA PICKOVER newsdeskts@scotsman.com

Scientists have not received a penny of the £50 million funding pot for motor neurone disease (MND) research promised by the UK Government, a charity has claimed.

Campaigner­ssaidthatp­eople with the disease are “running out of time” as the cash is held back by “red tape and bureaucrac­y”.

The concern over the whereabout­s of the cash has intensifie­d after the death on Saturday offormersc­otlandinte­rnational Doddie Weir following a sixyear battle with the disease.

Health secretary Steve Barclay insisted the delay was due to the “quality of the research bids” and the money “is there”.

But the Motor Neurone Disease Associatio­n said none of the money was in the hands of researcher­s. And 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 teammatero­bburrowand­ex-bradford City captain Stephen Darby,

who both live with MND.

He told BBC Breakfast: “The mostimport­antthingfo­rsomeone 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.”

In November last year, the Government­committeda­tleast £50m to help find new therapies, and eventually a cure, for MND, a condition in which the brain and nerves progressiv­ely degenerate.

On a visit to the Royal Marsdenhos­pitalinlon­don,mrbarclay 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,thathascom­einonmnd– it’snotanarea­traditiona­llythat hashadahug­eamountofm­edical 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 thechiefsc­ientificad­viserwithi­n 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:“wesharethe­frustratio­ns 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.”

 ?? ?? ↑ Former Scotland rugby internatio­nal Doddie Weir died on Saturday following a six-year battle with motor neurone disease
↑ Former Scotland rugby internatio­nal Doddie Weir died on Saturday following a six-year battle with motor neurone disease

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