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Motor Neurone Disease (Research)

12 July 2021

Lead MP

Martyn Day
Linlithgow and East Falkirk
SNP

Responding Minister

Helen Whately

Tags

NHSTaxationForeign AffairsScience & TechnologyMental Health
Word Count: 11501
Other Contributors: 11

At a Glance

Martyn Day raised concerns about motor neurone disease (research) in Westminster Hall. A government minister responded.

Key Requests to Government:

The Government should provide detailed information about specific MND-related projects funded by the NIHR and MRC in the past five years, explain the significant investment in MND research mentioned for the UK Dementia Research Institute, clarify the plans to double dementia funding (including MND), and detail how a pioneering MND research institute could attract targeted funding.

How the Debate Unfolded

MPs spoke in turn to share their views and ask questions. Here's what each person said:

Lead Contributor

Linlithgow and East Falkirk
Opened the debate
Motor neurone disease (MND) is a terminal and incurable progressive condition that rapidly progresses. One in every 300 people across all communities develops MND, with about 200,000 of the current UK population likely to die from it unless effective treatments are found. Currently, only one drug available—Riluzole or Rilutek—is limited and insufficient. The petition achieved over 110,000 signatures calling for targeted research funding. According to a parliamentary answer, no MND-related projects received funding from the National Institute for Health Research (NIHR) during 2019-20, while £5 million was allocated by the Medical Research Council (MRC). The government response cites £54m spent on MND research over five years but does not specify details of these projects. The lead MP is concerned that this funding includes general neurological research and lacks targeted focus.

Government Response

Helen Whately
Government Response
It is a pleasure to serve under your chairmanship, Ms Cummins. I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) and congratulate the petitioners on securing this important debate. I pay particular tribute to the petitioners and to the charities, the MND Association, MND Scotland and My Name'5 Doddie Foundation, for leading the campaign that has brought us here today. I also thank all hon. Members who have spoken so powerfully, sharing the stories of people suffering from this cruel disease and adding their voices to the petitioners' campaign. The petition was started in the name of Doddie Weir, the Scottish rugby legend, who has been an inspirational figurehead, campaigning for a world free of MND, since he revealed in 2017 that he was suffering from the disease himself. I had the good fortune to meet, virtually, Doddie and others with MND at a recent roundtable event and I, too, was inspired by their campaign for a brighter future for people living with MND. Doddie's charity, My Name'5 Doddie Foundation, works tirelessly to raise funds for research into a cure and to provide grants to people living with MND. I want to express my immense gratitude to Doddie and to everyone living with MND for giving their voices to this campaign and sharing their experiences of this awful disease and their hopes for the future. MND is a brutal condition that has a devastating impact on those who are diagnosed, and on their families and loved ones. As the petition has highlighted, MND can progress very rapidly, and tragically there is currently no effective treatment and no cure. We still do not know exactly what causes motor neurons to die off. Although a small percentage of cases are genetic, the majority of people with MND have no family history of the disease. There is only one drug treatment for MND, and it may slow the disease's progression for some people. The lifetime risk of developing MND is as high as one in 300 people. We are making great strides in research, which I will talk about shortly, but we still have a way to go in our research to understand the disease mechanisms and to identify effective treatments. Before I address that progress and our plan to accelerate MND research, I want to speak about how the Government are currently supporting people with MND. Through specialised services delivered by the NHS, people with MND are receiving treatment and support to ease their symptoms and to support their continued independence for as long as possible. In 2019, the National Neurosciences Advisory Group published a toolkit for improving care for people with progressive neurological conditions, including MND. That toolkit is helping commissioners to improve the pathways for people with MND, enabling quicker and more accurate diagnoses, services that are more co-ordinated, flexible and responsive to the rapidly changing needs of the patient, and improved choice in end-of-life care for people with MND. In recent years, researchers have made major advances in our understanding of MND. For example, we now know more about the types of MND that have a genetic cause, for which gene therapy might be an effective treatment. Although that accounts for only about 10% of people with MND and we still need treatments for the remainder, it is an important development. Researchers are also making progress in the development of the MND register and MND biobanks—data resources that are aiding researchers in understanding the disease. In 2019-20, UK Research and Innovation, through the Medical Research Council, spent £16 million on MND research. That included research that aims to increase understanding of the causes and genetic mechanisms of MND and amyotrophic lateral sclerosis—ALS—a form of MND. For example, scientists at the UK Dementia Research Institute are working to increase understanding of the root causes of ALS and frontotemporal dementia, and to identify ways of protecting brain cells from damage. Over the past five years, the Government have spent almost £60 million on research into MND and we are currently working on ways to boost this research even further. The hon. Member for Linlithgow and East Falkirk and other colleagues asked about the total figure of nearly £60 million over the five-year period from 2015-16 to 2019-20. I would be delighted to meet the proposers. I was just coming on to talk about a recent roundtable that I hosted, together with the NIHR Sheffield Biomedical Research Centre, which focused specifically on boosting MND research. It brought together researchers, charities, people with MND and funders to consider ways that we could boost research into MND. I end by again thanking the petitioners for bringing this issue to the forefront. MND has an enormous impact on individuals and families, and I pay tribute to everyone across the country who is supporting people diagnosed with the condition, and to the incredible and life-changing research that is being undertaken.
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About Westminster Hall Debates

Westminster Hall debates are a chance for MPs to raise important issues affecting their constituents and get a response from a government minister. Unlike Prime Minister's Questions, these debates are more in-depth and collaborative. The MP who secured the debate speaks first, other MPs can contribute, and a minister responds with the government's position.