According to the data, the risk of a person developing MND is around one in 300. In Wales, around 200 people are living with MND at any one time. This number is lower than expected, perhaps, as a result of the disease's ability to develop fairly rapidly. For a third of people who receive an MND diagnosis, this means that they will sadly die within a year of that diagnosis. Over half of those living with MND die within two years of receiving a diagnosis. It's very important to remember, of course, there is no cure for MND in existence at present, unfortunately. With such a serious situation facing those living with MND, it's entirely clear that research and clinical trials play a key role as we battle this terrible disease. The news that clinical trials are currently being undertaken in Wales is therefore positive, but unfortunately, the feedback arising from this process is that progress is very slow.

A report in January of this year noted that of the 50 people who had registered for the trials since September 2021, only one person had been seen. While I very much hope that the trials have accelerated since then, I would like to make it clear that this lack of progress is no criticism of the clinical specialists involved. The lack of progress demonstrates a lack of capacity in the system to be able to push this work forward. As I understand it, the individuals involved in this programme often do this work on top of a whole host of other responsibilities in their field of neurology. Isn't there a case to be made here for appointing a lead neurologist with a specific brief covering MND research and treatment, who could then drive this trial programme forward, such a key programme? The MND Association has said specifically that a lack of staff is a major factor, with insufficient numbers of neurologists to run the trials, which is a huge challenge, clearly. Professor of neurology Ammar Al-Chalabi has echoed this point, stating that Wales would derive great benefit from having a lead neurologist with these priorities clearly set out in their contract.

Another weapon that we have in our battle against the disease is the MND-SMART trial, which began at the end of last year in Wales. MND-SMART is an innovative trial that is seeking new drugs that can slow the development of MND with the intention of developing them further to be able to stop the disease, and ultimately, to reverse the disease for those who have developed advanced symptoms. Unfortunately, access to these trials is still proving difficult for people living with MND. At present, the brief of the south Wales MND network is to provide multidisciplinary care for people living with MND across south Wales, and the southern part of mid Wales, and they receive funding from the health service and the MND Association. The network is therefore responsible for undertaking the SMART trials while participating in other studies.

I have been speaking to a family in my constituency that has experienced the systematic issues that we currently have with MND research and treatment, namely the Gledhill family. Bob Gledhill received an MND diagnosis in October 2020, and unfortunately, the SMART trials were not available in Wales when he received that diagnosis. Bob's wife, Lowri, wanted to do everything she could to ensure that Bob could access the SMART trials. Lowri went as far as Oxford to try to register her husband in a SMART programme without success. Unfortunately, trial centres aren't eager to register people who live very far away, and this was obviously very frustrating for them as a family. As time went by, they continued to seek access to treatment that offered the very best possibility of alleviating the situation, no matter how small that possibility.