Response to Secretary of State Steve Barclay’s Comments

The following statement is from the MND charities (MND Association, My Name’5 Doddie Foundation and MND Scotland) and LifeArc on behalf of the United To End MND coalition which also includes people with MND, clinicians and researchers.

“We are surprised and disappointed with Steve Barclay’s comments made earlier today about access to the £50 million promised by the Government for targeted MND research.

We are unclear which bids the Secretary of State is referring to as our coalition partnership has only submitted one so far. This was met with glowing reviews, regarded as extremely high quality and, indeed, was funded in full, although most of those funds came from the charities involved in our coalition.

Researchers are now putting together several further bids in line with ongoing discussions with Government funders. And a kick-off meeting to discuss the first phase of the work and collate further scientific proposals is taking place tomorrow (Tuesday). That event is 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.

Contrary to the statement from the Secretary of State, the UK has a world-class MND research base, as well as a community of highly-experienced, collaborative and motivated scientists and clinicians. The reason we have asked for government funding now is because previous research activity has led to real breakthroughs. These need developing immediately so we can transform that progress into meaningful treatments as soon as possible.

We would welcome a face-to-face meeting with Mr Barclay to clarify this situation, enabling us to work together 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. The support the scientists are receiving from the patient community has shaped research plans and we are all keen to see this move forward as quickly as possible.

Lee Millard and David Setters, two patients who initiated the United To End MND campaign said, “Patients are growing increasingly frustrated at the delays in resolving the process of applying for the £50 million in a timely and efficient manner. Mr Barclay’s words imply that the leading UK neuroscientists who devised the detailed and co-ordinated scientific plan presented to Government are failing with the quality of their research. This is not the case! We would welcome the opportunity to meet face-to-face with the Secretary of State the next few days to discuss the issue.”

Although we are grateful for ring-fenced funding, we do not want to access it piece-meal; we need transformational funding to enable a large-scale national programme of co-ordinated work to build on the recent breakthroughs. None of the current Government funding streams will accept a large-scale proposal of the type we need and MND researchers will be forced to write in the order of 150 separate grants to access the ring-fenced funds. MND researchers have a strong track record of success with NIHR and MRC funding and have made significant progress to date, but now we need to convert that progress into meaningful treatments.

We have previously explained the limitations of the current funding streams to the Government. To overcome these limitations, UK MND scientists submitted a proposal outlining the programmes of work needed in July 2021, in time for the Autumn spending review. Part of this submission was subsequently funded largely by charities. The submission was externally peer reviewed and the science was recognised as outstanding and very worthy of funding. It was judged to offer excellent value for money.

Tomorrow sees the launch of the MND partnership that will build the National MND Institute. This 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 whilst ensuring appropriate peer-review and value for money. Even such a streamlined, non-traditional method still has a year’s delay built in, a year that people living with MND can ill afford.

We are surprised by the comments of the Secretary of State as we have been having constructive conversations with senior civil servants. We do however have some concerns that we have yet to find a mechanism to access the promised funds in a timely and coordinated manner.