Ministerial MND Research Roundtable – Our speech today

At todays ministerial roundtable hosted by the Secretary of State for Health and Social Care, Steve Barclay, David Setters, on behalf of patients United2endmnd gave the following speech. We will be providing a full report on the roundtable outcome in a few days. The roundtable was specifically organised to discuss the detail behind the December 2022 reported release of £29.5m towards the new National Institute for MND Research and we thank the Secretary of State for his support. The specific focus for patients is to ensure the timely, efficient and continuity of the release of funds.

Thank you for inviting me today to represent the patient community. Having been diagnosed for 10 years, & instigated the campaign with Lee, I feel privileged to speak for the vast majority who can’t, many of them progressing rapidly towards an inevitable conclusion.

We’re extremely grateful that the government responded positively to our request for totally NEW £50m investment in targeted MND research in November 2021. This brought us great hope.

We knew then that red tape might delay our mission to accelerate disease modifying treatments. The mission is set out in a comprehensive 5-year plan involving more than 20 research centres across the UK & co-ordinated by world leading UK neuroscientists, including Professor Dame Pamela Shaw, Professor Siddarthan Chandran and Professor Ammar Al-Chalabi.

Today, we hope to find out how the funding can be put to work on that plan as quickly and efficiently as possible.

Our request is that you simplify the processes further so that, hopefully, Nicola, Lee, myself, Chris, Emma and many thousands of patients can still be here in 5 years to see the fruits of our researchers work. The humanitarian case for cutting that red tape is clear. You have seen the devastation that MND brings to families like Rob Burrow’s and Doddie Weir’s.

Yet, I want to make 2 key points on efficiency and opportunity which are being held back by the current piecemeal grant application process

Firstly, it UNcoordinates what is already COordinated by world leading UK scientists. This is contrary to your desire for efficiencies in the governmental systems.

The scientists aren’t afraid of competition. Moreover, the peer review of the first 4 work packages for the plan by an international panel of experts including Sir Leszek Borysiewicz was glowing. We were disappointed therefore by your comments on the “quality of applications”.

For us, it’s vital there is no “mission creep” from the plan already in place. For example, we appreciate the crossover with dementia, but patients don’t want to see funds intended for MND diluted. This is why we welcomed your September 2022 announcement that funding would be “ring fenced” and managed through a “virtual Institute”. But today’s agenda hints at the fence being jumped! It doesn’t acknowledge what has already been achieved & highlights the challenges scientists face in accessing funding even before they start their day jobs!

Secondly, it hinders the huge potential for MND research to be a role model for research into other serious conditions at a similar translational phase and detracts from the opportunity to attract investment into UK Life Sciences more generally.

That’s why we’re delighted to see BEIS here today. We would very much like to meet to explore this potential, especially as the MRC is contributing 80% of the promised funding.

I also want to answer a common objection. Some will say “If we do this for MND, we’ll have to do it for everyone”. We’d reply “Why not?” If the condition has a plan agreed by leading scientists in the field, and is in a similar phase to MND. This will lead to further inward investment opportunities and hope for many patients with unmet needs.

Your December 2022 announcement was very welcome. It bears testament to how your officials and the scientists are proactively engaging in a real effort to find solutions for us. As patients, we have forensically examined the statement and, for us, it leads us to doubt if the promised NEW £50 million investment will be delivered to the scientific plan in full. We look forward to these discussions, but our current conclusion is that the most efficient way forward would be to award this funding in full in a single application to the collaborative partnership coordinated by LifeArc for which there is already a defined & trusted structure. But we are in your hands.

Mr Barclay, there is a fantastic opportunity for a “win win” story here, for patients and their families – & for the UK. Can you and your colleagues restore the hope your announcement gave us by simplifying processes still further to deliver this potential so we can fulfil Doddie Weir’s legacy and move closer to a world free from MND?

As with the Covid vaccine roll out, this is a unique opportunity to revolutionise medical research in the UK.

Thank you.

David Setters – on behalf of United2endmnd