Motor Neurone Disease (Research)

Rachael Maskell Excerpts

Monday 12th July 2021 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

Thank you, Ms Cummins, for chairing this afternoon’s debate. I also thank the petitioners for their strength in putting forward the petition we are debating today: I know that for many of them, this issue will be personal. For myself, as a clinician who worked in neurology, I worked with many people with motor neurone disease. I am also a constituency MP who is supporting my constituents, and my uncle—a radical academic in his day—sadly was lost to MND.

One in 300 people is likely to have MND, and once diagnosed, life passes all too quickly, so in opening I put on record my thanks to all those who have supported people with MND over the past year, in what has been the most challenging of all years: the clinicians, the families, the carers, the Motor Neurone Disease Association, and the wider community. At times, it has seemed that covid-19 has been the only battle the NHS has had to face, but its dominance has compounded the challenges that others have had in other areas of medicine. Although we have seen so many miracles in the NHS over the past year, we are now calling for another miracle, which is for the Government to release vital research funding. As clinicians, we want to do everything we can for our patients, and it is frustrating and stressful when we can see the solutions, but do not have the means to deliver them.

As we have seen, when we put the necessary investment into prevention and cure, it provides hope, and our nation has been given that hope about covid-19 by the brilliant scientists who have developed the vaccine. We want that research to lead to a new path for people with motor neurone disease. Of course, we understand that scale matters, and that is why so much focus has been given to the pandemic. However, when a third of a million people at any one time across the globe has motor neurone disease, we can see that scale is important for that disease, too. As internationalists, we must work across borders to ensure we find the right science and solutions in medicine. To date, the cause of MND is largely unknown, and the cure is yet to be found. Most research has been based on bettering somebody’s prognosis over a shorter period, and enhancing their quality of life while they are able to hold on to it.

Although the Government are one source of funding, uniquely in the UK the charity sector funds medical research, accounting for about 51% of all funding through the generous donations of 7 million people, research trusts, and funds. That sector funds about 17,000 researchers in all, and the basis of research in the UK needs to be thought through again so that big pharma is not taking some of the resourcing and the long-term profits, to ensure reinvestment in research and more money going into that area.

Back in 2014, MND had a funding boost through the ice bucket challenge, which certainly increased research opportunities. However, this pandemic has had a significant chilling impact on medical research over this past year—one we can ill afford—as research scientists have had to find work elsewhere. Charities themselves have had fundraising opportunities stopped and their shops shut, and Governments have not stepped in to support the charities that are behind all of this important medical research, not least on motor neurone disease. That is why the proposal to create a bespoke £50 million fund over five years to invest in a specific MND research institute, making the UK a global leader yet again, is so important for all of us. I therefore urge the Minister to seriously consider this proposal, not least because the Association of Medical Research Charities came together last year and made a proposal for a life science charity partnership fund, with £310 million invested over a three-year period, to address the deficit that they have experienced during the pandemic. The Government have not come up with the resources to meet that challenge, which is grossly disappointing.

I trust that the proposal before us will be acknowledged, because for every £1 invested, there is a 25p life-time return in benefit, which far outstrips the value that other investments made by Government can bring. If health and science development and research is a major industry in the UK, valued investment in that research will bring long-term economic benefit, as well as real personal benefit for those involved.

As our melting pot of research enables world-class research to move forward, as well as enabling innovation here, I trust that the Minister will respond positively and bring real hope to the thousands of families who need to know that hope is on the horizon.

--- Later in debate ---

[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.