Motor Neurone Disease Research: Government Funding

Tuesday 13th December 2022 Westminster Hall

11:00

[David Mundell (in the Chair)]

I will call Karl Turner to move the motion, and then call the Minister to respond to what is a timely debate following the sad death of Doddie Weir, who through his My Name’5 Doddie foundation was such a great campaigner on the issue. There will be no opportunity for the Member in charge to make a winding-up speech, as is the convention for 30-minute debates.

[Karl Turner (Kingston upon Hull East) (Lab)]

I beg to move,

That this House has considered Government funding for research into motor neurone disease.

It is an absolute pleasure to serve under your chairship, Mr Mundell. MND is a devastating, debilitating and untimely life-limiting disease. We saw that just two weeks ago with the tragic loss of Doddie Weir, to which you have referred. Doddie was a giant of a man, both on and off the field, but the MND Association estimates that in the UK six people a day die of MND. A third of them die within 12 months of diagnosis, but it is now more than a year since the Government pledged—in response to the tireless efforts of campaigners and following meetings between me and the then Business Secretary, the right hon. Member for Spelthorne (Kwasi Kwarteng)—to invest £50 million. We met the Secretary of State that day with campaigners, and he gave an assurance to us all that immediate action, meaning immediate money, would be forthcoming. It was not.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing forward this important issue. I have a close working relationship with MND campaigners back home, and ahead of the debate they got in touch to point out the lack of adequate care and provision in Northern Ireland. The Department of Health back home needs help to improve the standard for accessing clinical trials, and the same applies for people across the UK. Does the hon. Gentleman agree that it is imperative that people in all parts of this great United Kingdom of Great Britain and Northern Ireland are able to gain from research and be involved in clinical trials? We all stand to gain from that.

[Karl Turner]

I agree with the hon. Gentleman, who is an incredibly impressive campaigner on the issue. I pay tribute to him. He is knowledgeable on the subject, and he raises it both publicly in debate and privately with Ministers when given the opportunity. I commend him for that.

I very much welcome the Secretary of State for Health and Social Care commenting at the weekend that the money will be fast-tracked into the hands of researchers, but I am sorry to say that it feels as though the Government have dragged their feet. They have been dragged kicking and screaming to this point by the impressive dedication of MND campaigners—not least Rob Burrow, who is a rugby league legend—and it is disappointing that we have had to wait 12 months for anything. This debate was secured, then there was talk in the media that there would be funding available, but campaigners are entitled to be a little concerned and a little nervous about where and when that money will be forthcoming.

I pay tribute to the campaigners. I have briefly mentioned Rob Burrow; for all his brilliance on the pitch, the whole rugby league community has been blown away by his determination to raise awareness of MND. It is his tenacity that has brought us to where we are today. I have to be honest that I knew very little about MND. I am a rugby league fanatic; I support both of the rugby league teams in Hull. I am bound to say, being the Member for east Hull, that I support the red and whites a bit more than the black and whites on occasion. Rob is the person who brought this to my attention. Special mention should also be given to Rob’s former teammate and best pal, Kevin Sinfield, who has completed seven ultra-marathons in seven days to raise about £1.5 million for MND charities. That is an incredible effort from an incredible campaigner and man.

This debate was secured before the Secretary of State announced the money at the weekend. I want to mention that I have spoken with the MND Association at length, and my office has spoken with it in preparation for this debate. It has one single ask. It desperately needs a meeting with the Secretary of State for Health and Social Care and the Secretary of State for BEIS, so that it can get a timeline and some understanding of when the money will be made physically available. It is no good promising money and then not delivering it. The promise was made more than 12 months ago—nothing has been forthcoming.

I am quite annoyed at the fact that the debate was secured, and all of a sudden there is discussion in the media that the money is coming. People are asking me whether it means 50 million quid last year and 50 million again this year. The reality is that it is 50 million quid, which is much needed—the association and campaigners are grateful for it—but they need to know when and how the money is going to be made available.

I am going to rest there; I do not think I have anything further to add. It is a simple ask: will the Minister agree to speak to the Secretaries of State concerned and put the meeting together as quickly as possible, so that we can move forward?

11:07

[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.

[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.

[Karl Turner]

I am grateful to the Minister and I welcome everything that she has helpfully just announced. However, my researcher spoke yesterday to the association and it still requests that meeting. It is the only ask. I accept what she says about roundtables and all sorts of other things going on behind the scenes, but the association wants a meeting with the Secretary of State for Health and Social Care and the Secretary of State for Business, Energy and Industrial Strategy. Perhaps it is difficult to get them together, so there could be separate meetings. That is the only thing the association has asked me to ask for today, so it would be remiss of me if I did not push her to request that meeting after she leaves here.

[Helen Whately]

The hon. Member’s request is very clear. As I said to him a moment ago, the Secretary of State for Health and Social Care will meet researchers and patient groups at a roundtable about this issue. If that is not the same meeting as the one he wants, I am very happy to take that point away and find out exactly what meeting he wants and how we can make sure that it takes place as well as the planned meeting.

I have heard from my hon. Friend the Member for Northampton South over the past few weeks about red tape getting in the way of research, which we clearly do not want to be the case. To help cut red tape, research funders from NIHR and the Medical Research Council are working together so that MND proposals will go to the right scheme at the early idea stage and so that applications can be considered before they even have full sign-off from their universities and institutions.

We are also building on our recent announcement of £790 million for the NIHR biomedical research centres by putting in MND funding, so that it gets quickly to the most promising researchers already working on MND.

To sum up and return to where we started, there is no doubt that MND is a cruel disease that takes people before their time and, as it does so, takes them bit by bit from their loved ones. As yet, there is no cure. However, I say “as yet” because I have hope, and we have real grounds for optimism with the clinical trials. We also have £50 million going into MND research. I have outlined today how we are accelerating that funding to go to the frontline of research and to develop the treatments that will make a difference to MND sufferers, whether here and now or in the future.

In no small part, that is thanks to the late Doddie Weir and his family, Rob Burrows, Ed Slater, Kevin Sinfield, and all the other MND campaigners and carers who have worked so hard to raise awareness of MND and push for more action on MND research. I can assure them that their efforts are not in vain. I personally take inspiration from all their tireless work, which reinforces the Government’s commitment to fund and support research into MND. We owe it to people with MND, future sufferers, and all the campaigners and researchers to push ahead with the groundbreaking research that will help to develop effective treatments and, indeed, cures for this cruel disease.

Question put and agreed to.

11:23

Sitting suspended.