Since then, Bob has received an invitation to be part of the SMART trial in Wales, and while this is a positive development, I understand that Bob still hasn’t been seen by a specialist as part of that process, around eighteen months—a year and a half—since he received his MND diagnosis. I refer back to the statistics I quoted at the beginning of this debate, which point to the fact that time is certainly against someone in Bob’s situation. You yourself, Minister, will understand that MND as a disease is unpredictable and develops rapidly, and, as a result, prompt access to services that are able to provide any treatment is vital. Time isn’t on the side of people like Bob who are living with MND. I spoke to Lowri about her experiences, and her family’s experience, and I want to read her words aloud to you, if I may:

'Personally, there are no words that can portray effectively what our family has experienced over the past year and a half since Bob received the diagnosis of motor neurone disease. How do you describe the relentless decline of personal freedom that comes with this disease, which prevents you from completing even the simplest of tasks—the tasks that define you and make you the person that you are? How can I begin to describe how it feels to watch the person you love tripping and falling time and time again, while they feel so frustrated and are so determined to be independent that they refuse help to get up again? How do you describe the courage that a person needs to be able to get up time after time, when every occasion is more difficult than the last, on a daily basis? How can I describe the impact of yet another letter stating that it isn’t possible to access the clinical trials, when your partner’s life expectancy is now a matter of months rather than years? How can I describe the strength needed to continue to battle for MND patients, when the response one hears back from the system every time is that it’s better to give up, say "thank you" for the wheelchair, and sit quietly in the corner?'

I’m sure that all of us here wish Bob, Lowri and the rest of the family all the very best as they continue to work and strive through such a challenging time. Of course, there are recent developments at a UK level, with £50 million promised in November of last year to develop a national MND research institute, and those developments are very much to be welcomed. For us in Wales to be part of this project with this new body, we must develop a satellite institute or centre, and then we could access this funding that is so vital.

For me, Minister, after hearing directly from Lowri, the best solution to the situation here in Wales is entirely clear—we need a lead neurologist on a full-time contract in Wales, funded or substantially supported by the Welsh Government. This role could develop the accessibility of the clinical research for those who live with MND, it could lead progress with trials and tests in Wales, and could ensure that Wales has a role in the new national MND research institute. Will you, therefore, Minister, to support those people in Wales, such as the Gledhill family, who are living with this cruel disease, and those who will receive an MND diagnosis in future, commit to this, so that we in Wales can build the capacity in Wales to give the best possible support to these entirely heroic families, who are dealing with the implications of motor neurone disease, and to alleviate the pain and pressure on them that I've seen directly? I know that you, Minister, have experience in your own family. Let us take this step that will mean so much to so many families across Wales.