Motor Neurone Disease (Research)

Tony Lloyd Excerpts

Monday 12th July 2021 Westminster Hall

[Tony Lloyd (Rochdale) (Lab) [V]]

It is a pleasure to serve under your chairmanship, Ms Cummins. Like me, you will be well aware of the position of Rob Burrow, the former Leeds Rhinos player, who had an illustrious career as a rugby league player. He is lending his strong support to Doddie Weir’s campaign for more work to be done on motor neurone disease because of the devastating effect on him, once a super-athlete. It has reduced him to someone who knows that he is enjoying the last of his days on a kind of borrowed time—not the way any super-athlete would expect to end.

I also want to talk about the sheer humanity brought out by motor neurone disease. I have lost friends to this horrendous disease. A very good friend of mine, Steve Mycio, who worked with me when I was a police and crime commissioner—he was the deputy chief executive at Manchester City Council—had a sharp brain and a keen intellect and was a very powerful runner, but when motor neurone disease struck him, it was not long before it had a devastating effect on him. Because he was such a strong character, he did everything he could to make sure life continued as normal. He described the consequences of losing the use of both arms and falling flat on his face as almost comical, but he lost the capacity to do things he had taken for granted for so long. It is such a cruel disease.

The wife of another friend of mine said to me after he died, “Actually, death was a blessing. He didn’t want to live locked into a condition that left him at the mercy of his brain, but not with the use of his body.” That is the reality of MND. That is why this debate and the petition are important. We need research, and I hope the Minister will be able to give us some proper answers today.



When I talk to neuroscientists they say that they believe it is possible to find, if not a cure, at least pharmaceutical solutions that can take people forward on their MND journey, and maybe control MND in the long run. The prospects are truly enormous. The hon. Member for Linlithgow and East Falkirk (Martyn Day) made a very good speech. It is right and proper that the funding for MND be there in its own right, not simply linked to other neurodegenerative diseases. Nevertheless, the possibility of cracking the code for MND gives hope, so neuroscientists tell me, that we can begin to look for cures and solutions to other neurodegenerative diseases.

We know that a third of those who contract MND will be dead within a year, and for others the prospects are not good. There may be 5,000 people at any one time suffering from this disease, so £50 million as an investment in stopping that kind of suffering makes human and societal sense. In the end, it makes financial sense, because if we invest now and concentrate efforts, there is a possibility of seeing results very soon. It could be world-advancing science, and this country has the neuroscientists and researchers capable of taking it forward. I join very strongly the demand of the e-petition that we make this investment in an MND translational research institute. It can make a material difference. It can stop the human suffering that MND causes. That is worth spending some of our money on.