Motor Neurone Disease Research: Government Funding

Andrew Lewer Excerpts

Tuesday 13th December 2022 Westminster Hall

[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.

[Andrew Lewer (Northampton South) (Con)]

I am triggered by the reference to Francis Crick, who was also from Northampton, so there is quite a connection here, also given my great privilege to be the chairman of the all-party parliamentary group on motor neurone disease. I am grateful to the hon. Member for Kingston upon Hull East (Karl Turner) for having this debate, but particularly grateful to the Government for listening, making some really important announcements and pushing this forward. It has been received with great pleasure by the research community and MND sufferers. I hope the Minister will accept my thanks for that. I look forward to working further with her in taking this forward, now that we have the new announcements.

[Helen Whately]

It is good to hear from my hon. Friend. Credit goes to him for his campaigning, both personally and as chair of the APPG on motor neurone disease, together with that of other Members of Parliament, to push for investment to get out to the frontline on research. I look forward to working with him further so we can ensure this investment in research makes a difference for people suffering from MND and their carers, and for those in the future.

I have just mentioned the MND collaborative partnership, which is a mechanism by which the many initiatives that I just described will come together. The first meeting of this virtual institute took place at the end of November, and I am looking forward to hearing about further progress now that the funding is in place. The remainder of the committed £50 million of MND funding is available for researchers to access via the NIHR and the Medical Research Council. Government will support researchers in coming forward with ideas for new research via a joint highlight notice between NIHR and the Medical Research Council on MND. That will allow our funding to be responsive to progress in science and ensure breakthroughs reach patients in the quickest possible time. Further to that, the Secretary of State will shortly host leading researchers and patient groups at a roundtable to discuss MND research and help researchers make the best bids as quickly as possible. That addresses the call for a meeting from the hon. Member for Kingston upon Hull East.