Motor Neurone Disease (Research)

Helen Whately Excerpts

Monday 12th July 2021 Westminster Hall

[The Minister for Care (Helen Whately)]

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. I know that people living with MND will be listening to the debate today and looking for hope. It is to them and to the more than 100,000 people who stand in solidarity with them that I address my remarks.

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. That includes the prescribing of complex communication devices to help people with MND to communicate as effectively as possible; offering non-invasive ventilation to support respiratory function; and delivering personal care and support for the needs of the individual.

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. That is so that people with MND receive the best possible care. However, although the NHS is delivering that specialised treatment and support to people with MND, we know that it is not the same as a cure.

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. Through the development of novel biomarkers, scientists have more effective ways to monitor responses to treatment in clinical trials; and through innovative and flexible trial designs, researchers are able to conduct faster and cheaper trials, which will deliver potential new treatments to patients more quickly.

I can assure hon. Members here today that this Government are committed to supporting research into MND. I have heard the request from campaigners for Government to invest £50 million to create an MND research institute, and I understand why petitioners are asking for this. However, ring-fencing funding for particular diseases can stop great science. That is why the Government make funding available for researchers in all areas to apply for. Awards are granted in open competition and determined by the quality of the science. Through those funding mechanisms, the Government are supporting a wide range of research into MND.

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. There is significant overlap between the genetic causes of MND and some types of dementia, which is why the UK Dementia Research Institute, funded in partnership with Alzheimer’s Research UK and the Alzheimer’s Society, has made significant investment in MND research.

At the Francis Crick Institute, which is co-funded by the Medical Research Council, Wellcome and Cancer Research UK, researchers are working with stem cells to investigate the earliest molecular events of MND. With support from the Department of Health and Social Care, the National Institute for Health Research is directly funding MND research, for instance the Lighthouse phase 2 study, which is a clinical trial of a drug repurposed from the treatment of HIV. This study, involving 300 people with MND, will test the effectiveness of the repurposed drug in improving survival rate, function and quality of life for people with MND.

[Rachael Maskell]

I am grateful to the Minister for outlining all the research that is being done. However, the benefit of a virtual research institute would be co-ordination, to ensure that there was real focus on bringing about a real resolution for people with MND. Having a piecemeal approach will not provide the real focus that is required. Will she recognise that and therefore reflect on the ability to bring forward such a proposal in the comprehensive spending review in the autumn?

[Helen Whately]

I thank the hon. Member for her point; I will come on to say a bit more about that, and I assure her that I have absolutely heard her argument. However, I am addressing as I go some of the comments and questions raised by hon. Members during the debate, one of which was a request for some examples of research. I have just mentioned one, but there are a couple more that I want to give.

At the NIHR Sheffield Biomedical Research Centre, researchers are trialling the safety and efficacy of a drug called tauroursodeoxycholic acid, or TUDCA, as a treatment for people with ALS. The NIHR is also funding research to enhance support and care for people with MND, with ongoing studies looking at nutrition, diet and therapies to improve psychological health.

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. That includes research funded by the Government—through both NIHR and UKRI—focused solely on MND; research on MND and frontotemporal dementia, the causes and mechanisms of which have a substantial overlap with MND; research on neurodegenerative conditions that have many commonalities with MND; and spend on research infrastructure within NIHR, supporting MND studies. I hope that that provides some greater clarity on the research spending. In addition, the Government fund research on the structure of the nervous system, cell biology and genetics, and mental processes such as learning and memory. UKRI supports that research with around £30 million of funding per annum.

[Mr Steve Baker]

I am listening to my hon. Friend the Minister with great interest. Of course, following the relative merits of these different programmes is slightly beyond my capabilities in biological science, much as I try. May I invite her to meet the proponents of the research proposal—it compares business as usual, if I may call it that, with the potential results of the proposal —so that she can hear directly from them the advantages that could be gained from it?

[Helen Whately]

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. Government officials are now working with those who attended that roundtable to take things forward, and to encourage and support MND research proposals.

On the particular point about a research institute, applications for funding for research infrastructure, just as for research itself, can and should be made to NIHR or UKRI as appropriate. Bids can win funding through that process, which includes peer review and evaluation. A strong case for this institute has clearly been made in the debate. I am happy to meet my hon. Friend the Member for Wycombe (Mr Baker), and I assure all who are listening that the Government are working with MND charities and researchers on ways we can boost research.

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. The Government are committed to working together with the MND community to catalyse further investment and to accelerate progress so that, one day, we will achieve a world free from MND.