Motor Neurone Disease Research: Government Funding

Debate between Helen Whately and Chris Evans

Tuesday 13th December 2022 Westminster Hall

[The Minister of State, Department of Health and Social Care (Helen Whately)]

It is a pleasure to serve under your chairmanship, Mr Mundell. I begin by thanking the hon. Member for Kingston upon Hull East (Karl Turner) for securing this debate. I too pay tribute to Doddie Weir, an incredible man who sadly passed away at the end of November. My thoughts are with his wife Kathy, and their sons, Hamish, Angus and Ben.

I had the good fortune to meet Doddie during an online roundtable—online because it was during the pandemic—and I was inspired by his campaign for a brighter future for people living with MND. His charity, the My Name’5 Doddie Foundation, works tirelessly to raise funds for research and provide grants to people living with this cruel condition.

During the pandemic, and again since, I also met with my Mid-Kent MNDA branch as a constituency MP. Those meetings are vivid in my mind. The first call I had with them had literally everybody on the call in tears, as we talked about the experiences of those suffering with MND and their carers—usually family members—and how they were seeing their loved ones losing a bit of themselves day by day to MND. It is such a cruel disease, as the hon. Gentleman said. I am thankful to him and to several other Members of Parliament who have campaigned for research funding and actively lobbied me and other Ministers on that point.

[Chris Evans (Islwyn) (Lab/Co-op)]

I refer Members to my entry in the Register of Members’ Financial Interests, and I am a biographer of Don Revie. This is an important debate, because Don, who played for Hull City during his playing career, passed away from motor neurone disease in 1989. Like Doddie Weir and Rob Burrow, he played sport at a high level. If the Government are going to invest in research, will they look at the fact that sportsmen seem to be more likely than the rest of the population to develop motor neurone disease?

Secondly, I urge the Minister to tell GPs to ensure that people are tested for motor neurone disease early in their journey, because the problem is that it is one of the last things people test for. In the case of Don, he believed that the pain in his back was caused by slipped discs—tragically, it was motor neurone disease. I ask the Minister to look into those two asks.

[Helen Whately]

The hon. Member makes two really important points. As he says, several prominent sportsmen who have been effective campaigners have sadly been affected by the disease, and there is a potential relationship with head injuries. He also made a point about the challenge of diagnosis, which I will take away.

The hon. Member for Kingston upon Hull East rightly talked about the tenacity of campaigners such as Rob Burrow and how effective their visible campaigning has been at raising awareness of MND. The disease affects a significant number of people, with around 5,000 suffering from it right now. Sadly, we know that people do not live very long with MND, so a really significant number of people across the country are being affected over time. It is incredibly cruel for the individuals who suffer.

I heard the request of the hon. Member for Kingston upon Hull East for a meeting, and I will come to some of the plans to address his calls in a moment. As I said, MND has a huge impact on those who have been diagnosed, and it is devastating for them and their families. We have made real progress in research, but we are yet to learn why motor neurones die off. There is still no cure for the disease and only one drug is licensed in the UK to treat MND, which is why the Government committed back in November 2021 to make at least £50 million available for MND research over the next five years.

Before I go into more about research, I want to say something about how we are supporting people living with MND, which is a degenerative condition—often rapidly so—that requires complex and anticipatory care. For that reason, the majority of services for people with MND are specialised and commissioned nationally in the 25 neurological treatment centres across England. In the absence of a cure, we want to make sure that people with MND have access to the best health and care support available to meet their complex needs. It is really important for people suffering from MND and their carers to have specialised and targeted support, including devices to help people with MND to be able to continue to communicate effectively for as long as possible, as well as other types of care.

Since November 2021, we have invested £790 million in the National Institute for Health and Care Research biomedical research centres, which bring together experts to translate scientific breakthroughs into treatments for patients. At the Sheffield centre, researchers have already pioneered evidence-based interventions to manage the symptoms of MND. In September, the Sheffield researchers published promising clinical trial results for the drug tofersen. Professor Dame Pamela Shaw, the director of the NIHR Sheffield BRC, said:

“I have conducted more than 25 MND clinical trials and the tofersen trial is the first trial in which patients have reported an improvement in their motor function.”

I want to emphasise that because, until now, it has been very hard to be optimistic about developing a cure for MND or even effective treatment. The trial is, in fact, grounds for optimism against this cruel disease.

In June, the Government and charity partners invested in a £4.25 million collaborative partnership on MND, which includes LifeArc, the MND Association, the My Name’5 Doddie Foundation and MND Scotland. The Government are supporting groundbreaking research undertaken by the UK Dementia Research Institute. Seven of its 50 research programmes are dedicated specifically to MND, with world experts undertaking discovery science, translational and clinical research to drive medical progress.

There has already been work going on to invest in MND research, but I heard the impatience of the hon. Member for Kingston upon Hull East and have heard from other hon. Members. Indeed, my hon. Friend the Member for Northampton South (Andrew Lewer), who is here today, has also lobbied me and other Ministers on the desire for greater pace and so that money goes towards research quicker and then translates more quickly into treatments.

To that point, yesterday, we announced at the Department of Health and Social Care, together with the Secretary of State for BEIS, how we will deliver the full £50 million research commitment, which will build on our existing investments and successes to more rapidly fund MND research. In that regard, £30 million of Government funding will be invested immediately through specialist research centres and partnerships with leading researchers. That will include £12.5 million to the UK Dementia Research Institute to support groundbreaking research specifically into MND, a further £8 million investment into early-phase clinical research for MND via the NIHR biomedical research centres and £6 million for a translational accelerator that connects the DRI capabilities with those of the Francis Crick Institute, the Laboratory of Molecular Biology and the new MND collaborative partnership. We are investing a further £2 million in the MND collaborative partnership, which will specifically focus on data for MND research.