Part of the debate – in the Senedd at 5:13 pm on 1 December 2021.
Thank you very much, Deputy Llywydd, and I thank the Conservatives for bringing this debate forward today. We agree with the clear message in the motion itself, and we ask for support for our amendment as well.
It's just a few words that I have here. I can summarise our position, in a way, by emphasising two things: first of all, the need for people who live with MND to be able to live with dignity and to live independently, and the second half, stemming from our amendment, is the need to ensure that we do increase our capacity within Wales to create and develop expertise in neurological diseases in order to improve the scale and quality of trials that are available and to improve access to treatment. In looking at the motion itself, as I said, the call is quite simple, around home adaptations. Looking at the 'Adapt Now' report by the MND Association earlier this year, they note very clearly that there are a number of failings in the process of providing home adaptations at present. The system that we have isn't fit for purpose, and there are a number of different elements that reflect that.
First of all, the process takes far too long between making an application and realising what's needed, particularly when we consider that the progression among patients is very rapid and that the adaptations need to happen quickly for their benefits to be felt. There is no financial equity in the process at present, and the means testing that is happening does decelerate the process further and has a detrimental impact on the lives of people with MND and their families.
And it's also clear that there is a lack of consistency across Wales. This is the second time today that I've referred to a postcode lottery, and we need that consistency in terms of the different definitions that are used by different local authorities across Wales. And in the processes that are in place, there is a lack of equity, I think, if we compare what happens in some areas compared with others. And there is general complexity, I think, and that's reflected in the 'Adapt Now' report. Taking everything together, the barriers are obvious to us on these benches, and they're far too large for those who need to see changes, which are small sometimes, but major at other times, that could make a big difference to their quality of life.
In turning to our amendment, we're calling for the Welsh Government to explore how we could develop centres here in Wales for trials to ensure that new treatments can—