Motor Neurone Disease campaigners say 'red tape' jeopardises £50m Government funding pledge

It follows a successful campaign, led by former Leeds Rhinos star Rob Burrow last year, which led to the Government pledging an extra £50m worth of funding for MND research.

But scientists face having to spend time and money putting together dozens of funding applications to even access this money.

MND researchers from across the UK met this week with government ministers to thrash out a deal to make the funding more accessible to researchers, but the government has urged researchers to bid for funding using the existing method.

Professor Ammar Al-Chalabi, a neurologist who is leading the research into MND, said: "Right now, we are at a critical stage for MND research. We are making huge strides, but we need the extra push this funding brings.

"What we want, is to write a single, detailed proposal, explaining exactly how the research would be carried out. It is important we only do this once at the start of the five years. We then have a focus for industry partners, such as drug companies, to be able to speak to all the key MND researchers in one place, we have a clear coordinated effort across the country that makes the most of each research team working together, and we can spend our precious research time doing research, not writing endless applications for funding.

"This does mean doing things a bit differently. At the moment we would need to write between 50 and 100 separate applications for funding to access the £50m, which defeats the whole purpose of our proposal and would tie us all up in red tape. We have an idea for how to move forward and we will be meeting with government representatives in the next two weeks to see if we can make that happen."

After discussion with Health Secretary Sajid Javid last year, and the intervention of the Prime Minister, funding was approved in November 2021, after a visit to Downing Street by Rob, along with fellow campaigner and former Bradford City captain Stephen Darby, who also suffers from the disease.

The United to End MND campaign met with Minister of State for Care and Mental Health Gillian Keegan this week to suggest the new funding model to help pay for research into Motor Neurone Disease. It is understood no firm "yes" or "no" was given.

A Department of Health and Social Care spokesperson said: “We have invested millions of pounds on research - which led to major advances in how the disease is understood - and remain committed to spending at least another £50million to help find a cure.

“Research funding is available now and researchers can apply to the National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI).

“We will support the motor neurone disease research community in making these applications and fully understand how important it is for funding to be allocated as soon as possible so even more progress can be made.”