Health Secretary releases motor neurone disease money after delays criticism

Steve Barclay said he will ‘slash red tape’ to fast-track funding and ensure it reaches frontline researchers more quickly.

Health Secretary Steve Barclay has said he will ‘slash red tape’ to fast-track funding for motor neurone disease research (James Manning/PA) (PA Wire)

The Health Secretary has said he is “fast-tracking” £50 million of funding for motor neurone disease (MND) research after the Government faced criticism for failing to release the promised money.

More than a year ago the Government committed at least £50 million to help find new therapies, and eventually a cure, for MND, a condition in which the brain and nerves progressively degenerate.

But the Department of Health and Social Care was accused of withholding the research funding following the death of former Scotland rugby international Doddie Weir in November.

The Motor Neurone Disease Association said none of the money has been released to researchers.

Rugby star Kevin Sinfield questioned why scientists cannot access the funding, while his former Leeds Rhinos team-mate Rob Burrow – who also has MND – also accused ministers of holding back the cash.

“How many more warriors die before this stupid Government give the £50 million they said they would give?” Burrow asked on Twitter.

Health Secretary Steve Barclay has now said he will “slash red tape” to provide the funding to biomedical research centres.

“Motor neurone disease can have a devastating impact on people’s lives, and I’m determined to help accelerate research to find a cure and develop innovative treatments,” he said.

“We’ve already invested millions to improve treatments and our understanding of this condition but there’s more we can do and that’s why I’m now slashing red tape to fast-track funding and ensure it reaches frontline researchers more quickly.

Our ideal scenario remains the same - to create a national MND research institute, as exists for many other diseases

The United to End MND campaign

“I’m grateful to the United to End MND campaign for their work raising awareness and I warmly congratulate Kevin Sinfield on his epic achievement completing seven ultra-marathons, as well as remembering the late Doddie Weir for his outstanding contribution over the past five years.”

Business, Energy & Industrial Strategy Secretary Grant Shapps said: “Some of the UK’s brightest and best scientific minds are battling to find treatments – and one day, a cure – for the cruel and devastating condition that is motor neurone disease.

“We have invested millions of pounds in supporting them in that fight, but we are committed to doing more.

“Today’s measures will cut unnecessary red tape, getting that vital funding to the front line faster, as well as investing more in the crucial work that our world-leading scientists and researchers are doing.”

The United to End MND campaign, which includes the MND Association, MND Scotland, My Name’5 Doddie Foundation and LifeArc, welcomed the funding but said it falls short of creating a national research institute that it has been campaigning for.

The MND community don’t have time to wait – over a third of people with MND die within a year of diagnosis

The United to End MND campaign

A spokeswoman said: “We are pleased that Steve Barclay has listened to the MND community and now outlined how the long-awaited £50 million investment in targeted MND research funding pledged by the Government will be made available to researchers.

“Our ideal scenario remains the same – to create a national MND research institute, as exists for many other diseases.

“While Mr Barclay’s plans stop short of that, they are a step forward and demonstrate a more streamlined approach to ensuring the funds reaching MND researchers.

“Although this roadmap gives us a reason to be cautiously optimistic, we would still like more clarity and to understand the detail, processes and timelines behind it. We’d welcome the chance to discuss the questions we have with Mr Barclay.

“And, of course, the MND community don’t have time to wait – over a third of people with MND die within a year of diagnosis. They need transparency, they need red tape removed, they need research to deliver treatments and ultimately a cure – fast.”