Motor Neurone Disease Research: Government Funding

Karl Turner Excerpts

Tuesday 13th December 2022 Westminster Hall

[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?

--- Later in debate ---

[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.