Motor Neurone Disease Research: Government Funding

Jim Shannon Excerpts

Tuesday 13th December 2022 Westminster Hall

[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?