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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
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.
Batley and Spen
Reiterated the need for additional research funding to support patient treatment, medicines, and find a cure for MND. Emphasized that 1,100 people in the UK are diagnosed with MND annually, and around 5,000 adults have motor neurone diseases at any given time. Advocated for investment in palliative care standards alongside research efforts.
Barbara Keeley
Lab
Worsley
She highlighted the transformative impact of medical research during the pandemic, noting that while £3.5 million was allocated to motor neurone disease by the Medical Research Council in 2019-20 and no funding from the National Institute for Health Research, much claimed investment went towards general neurological research rather than MND-specific programmes. Keeley argued that the lack of targeted funding meant condemning people to live with or die from motor neurone disease, given its high mortality rate within a year of diagnosis. She proposed £50 million in research funds over five years for an MND translational research institute.
Christine Jardine
Lib Dem
Edinburgh West
Christine Jardine highlighted the impact of motor neurone disease in her constituency and praised Doddie Weir for his awareness campaigns. She also stressed the importance of targeted research funding, advocating for a £50 million investment over five years to establish a virtual MND translational research institute.
Ian Byrne
Lab
Liverpool West Derby
Ian Byrne paid tribute to a constituent, Mark Maddox, diagnosed with motor neurone disease in 2010 and told he would live only one year. Byrne highlighted the impact of the disease on patients' lives and their families, urging for new Government investment of £50 million over five years to kickstart a pioneering research institute.
John Lamont
Con
Berwickshire, Roxburgh and Selkirk
Mr. John Lamont highlighted the support for Doddie Weir's petition in his constituency of Berwickshire, Roxburgh and Selkirk, which ranked second nationally for number of signatories. He acknowledged Doddie's efforts to raise awareness and funds for MND research through his foundation and mentioned various challenges completed by individuals in the Scottish borders to raise money. Mr. Lamont noted that motor neurone disease is a rapidly progressing condition with one in 300 people developing it, and a third dying within a year of diagnosis. He praised My Name'5 Doddie Foundation for providing practical help through grants and funding research into MND.
Hayes and Harlington
John Martin McDonnell urged the Government to address fragmented funding sources and lack of certainty in motor neurone disease research investment. He expressed optimism about being close to a breakthrough, suggesting that additional targeted funding could significantly advance MND research.
Liz Kendall
Lab
Leicester West
She thanked the petition signatories and organisations campaigning for MND research, highlighting the need to change the current funding model to a large-scale collaborative approach. She argued that this would not only benefit patients but also the economy through creating high-quality jobs.
Rachael Maskell
Lab Co-op
York Central
Ms Maskell highlighted the urgent need for more research funding for motor neurone disease (MND), noting that one in 300 people are at risk of MND and once diagnosed, life expectancy is short. She expressed gratitude to all those who have supported individuals with MND during the pandemic but stressed the frustration felt by clinicians due to a lack of means to deliver solutions despite seeing them. Maskell also pointed out the importance of international cooperation in medical research and emphasised that charities fund around 51% of medical research in the UK, supporting approximately 17,000 researchers. She asked the Minister to consider the benefits of a virtual research institute for better coordination and focus on MND research, suggesting that this could be addressed in the upcoming comprehensive spending review.
David Amess
Con
Southend West
Sir David Amess shared the story of a friend diagnosed with motor neurone disease, highlighting the need for better awareness and information about symptoms. He urged the Government to urgently reform the benefits system for terminally ill patients and called for increased research funding from less than £5 million annually to at least £50 million over five years.
Steven Baker
Con
Devizes
Mr Baker is delighted to serve under the chairmanship and expresses gratitude towards petitioners. He highlights a petition seeking £50 million over five years for a UK motor neurone disease translational research institute, signed by 185 of his constituents. Mr Baker argues that motor neurone disease, despite its relatively low prevalence, offers valuable insights into other neurodegenerative diseases like Parkinson's and Alzheimer's due to the rapid progression of symptoms. He invited the Minister to meet the proponents of the research proposal directly to understand its potential advantages over business as usual.
Mr. Tony Lloyd paid tribute to Rob Burrow's support for Doddie Weir's campaign, emphasizing the devastating impact of motor neurone disease on individuals like him who were once super-athletes. He shared personal experiences of friends who had suffered from MND and highlighted the importance of research in potentially finding pharmaceutical solutions that could control or cure the disease. Mr. Lloyd urged the Minister to provide proper answers regarding funding for MND research.
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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