Red tape holding up £50m motor neurone disease research funding, say campaigners

Funding for motor neurone disease (MND) research is being held back by “red tape and bureaucracy” while people with the disease are “running out of time”, campaigners have said.

Former Scotland international Doddie Weir died on Saturday after a six-year battle with the disease.

Since his death, friends and campaigners have said that £50 million government funding promised to accelerate MND research was being held up.

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 team-mate 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 and I can’t see any excuse or reason why that money has been held back.

“There isn’t one in my own mind, because these people run out of time.

“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.

“I understand red tape and bureaucracy… but I just don’t see a valid reason at this point.”

He pointed to the money the Government has spent on Covid-19 since the start of the pandemic, and said that the £50 million for MND research was a “drop in the ocean”.

“That money is there and we want to provide hope and we want to provide a future for these this community,” he said.

In November 2021 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.

Officials said that the money is available “right now”.

But 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.”

Business Secretary Grant Shapps was asked about the cash when he appeared on BBC Breakfast.

“There is a lot of money and a lot of funded clinical trials on motor neurone disease,” he said.

“And there is the £50 million… I’m not as you’ll appreciate, as energy secretary, over the details of those trials.

“But it won’t be for want of trying – the NHS puts huge amounts of money into groundbreaking trials all of the time… it won’t be through lack of will or desire. I don’t know the specifics of MND trials.”

He added: “The way clinical trials are carried out is probably a little bit beyond my particular brief, but I do know that the NHS carry out unbelievable work when it comes to trials.

“We saw what they did with Covid and the way that vaccine trials were done so quickly and rolled out into other areas. I think it’s important that happens in other areas of medicine, of course including MND.”

A Department of Health and Social Care spokesperson said: “We have invested millions of pounds into motor neurone disease research – leading to major advances in how the disease is understood – and we remain committed to spending at least another £50 million to help find a cure to this awful illness.

“We’ve already funded clinical trials for various drugs which have shown promise in tackling motor neurone disease, and we encourage researchers to make applications for this funding – which is available right now.”