Part of the debate – in the Senedd at 6:30 pm on 30 March 2022.
Can I thank Adam Price for bringing this debate today and allowing me a minute of his time, but also for the eloquent way in which you described the situation once again? This is a devastating disease that impacts families so terribly, as you've described, Adam, so well. And the problem that Bob and Lowri are facing is replicated in many families across Wales. It may only be a small number in the total, but it's such an important group of people who need our support.
I've done a lot of work with the MND Association over the last year and heard first-hand from people living with MND, as you have Adam, and it's a devastating disease that progresses at such a devastating pace, affecting young and old alike, and having a huge impact on the whole family. And they can't see any way out, because it just gets worse—there's no light at the end of the tunnel. It's extremely sad; time is not on their side.
Only 0.2 per cent of people selected for research in Wales had MND, meaning that less than £30,000 of the Welsh Government's money was spent on research for this specific condition. It's just not enough. MND research Wales is a new group, as Adam pointed out, aiming to improve clinical research across Wales and ensure the delivery of a model in Wales to be part of the national UK MND Research Institute as part of the £50 million awarded by the UK Government. I'd like to also ask the Minister if you would consider agreeing to meet with the representatives from the MND research Wales group to hear how a lead neurologist for Wales, specialising in MND, and with a care and research function, would make a real difference to the people living with MND in Wales.
We've raised this several times in the Chamber, or the plight of people with MND, and I think we need to keep doing that, because every day, every minute and hour we wait, those people are suffering longer and longer and there is no way out for them, so we have to act fast. Thank you.