The Health Secretary has pledged to make an announcement on motor neurone disease (MND) research funding “in days” amid a row over the whereabouts of the 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.
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. I'm absolutely gutted to see my friendly giraffe die. You are the reason for being so positive RIP
— Rob Burrow MBE (@Rob7Burrow) November 26, 2022
The Motor Neurone Disease Association said none of the money was in the hands of researchers.
Rugby star Kevin Sinfield said he “can’t see any reason” 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 50m they said they would give,” Burrows said on Twitter.
Challenged about the statement on BBC Breakfast, Health Secretary Steve Barclay said: “It’s a massive priority because I have so much respect for what Rob has done, for what Kevin has done, for Doddie Weir and Ed Slater the Gloucestershire and former England and Leicester player.
“It’s something I’ve taken a huge personal interest in.
“The frustration was we’ve got the funding, the funding is all agreed, there was a concern among our science community in terms of the fact that some of the bids had come in and were not what they felt were needed from a scientific point of view.
“I prioritise that.
“I’m expecting to be in a position to announce something very, very shortly on that and really to address Rob’s concern.”
He said the announcement would be in “days not weeks”.
MND charities (MND Association, My Name’5 Doddie Foundation and MND Scotland) and LifeArc on behalf of the United To End MND coalition, said in a statement: “We look forward to hearing more from Steve Barclay following his comments on BBC Breakfast this morning that there will be a further announcement in ‘days not weeks’ around the £50 million pledged by the Government last year for targeted MND research.
“Work has already started to create a national MND research institute – the inaugural meeting last week was at capacity, a clear demonstration of the eagerness of the MND research community to work together to find treatments and a cure for this brutal disease.
“The first seed of funding was managed in a pragmatic and creative way, enabling one efficient application to be made.
“This approach could be a way to access the £50 million while ensuring appropriate peer review and value for money. We continue to want to work with Mr Barclay and his teams to ensure the funds are allocated efficiently and effectively without researchers being tied up in red tape.
“People with MND are desperate for progress and as we have always said, do not have time on their side. Time is of the essence.”