We will now move on to the short debate, and today's short debate is to be led by Adam Price.

Thank you very much, Llywydd. It's a pleasure to be able to present this debate today to draw attention to the current situation in Wales with regard to motor neurone disease and access to the treatment and facilities that are currently available in Wales. It's a pleasure to confirm that I have agreed to give a minute of my time to Peter Fox, who has led so much on this issue.

Motor neurone disease, or MND, as it is commonly know, is a deadly disease that develops particularly rapidly, affecting the brain and spinal cord. The disease attacks the nerves that control the body's movements to such an extent that muscles can no longer function. This leads to people being locked in bodies that are failing them, making speaking and moving impossible, meaning that they are, in the end, unable to breathe and die as a result of MND.

Joyce Watson took the Chair.

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.

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.

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.

I now call on the Minister for Health and Social Services to reply to the debate, Eluned Morgan.

Thank you very much. Firstly, I'd like to thank Adam Price for bringing this important issue to the Chamber and also to thank Peter Fox who I know has championed this cause since he entered the Senedd.

When we debated this last December, there was equally as much compassion as I've heard for people with MND and their families and loved ones as I've heard today. Some of us, as you've pointed out Adam, have personal experience of this. My wonderful uncle Robert suffered an incredibly cruel death. And I think that's one of the things that makes this so difficult, compared to other illnesses, is the cruelty of this dreadful condition and it's certainly a diagnosis that nobody wants to receive. And, certainly, I can't begin to understand what Bob and Lowri and the family are going through, but I did have a slight insight through the terrible, terrible suffering that my uncle went through. And thankfully, it isn't a common disease, but for those people who receive a diagnosis, that's no comfort at all. MND is a truly devastating and life-shortening disease with no treatment or cure, and life expectancy for many being only two to five years from the onset of symptoms. And as you pointed out, Adam, there are around 200 people in Wales living with MND at any one time, and they do. And we try and give them access to a suite of support for their physical, psychological and social needs, and I think it's critical to ensure that we continue to do that to enable them to live a dignified life and to maintain as much independence as possible.

Now, access to relational, physical and psychosocial support makes a really big difference to people's lives, and the range of physical and psychosocial therapies and medication can help to manage their symptoms and keep their skills, abilities and independence for as long as possible, and these can include assistive technologies, including equipment to support or replace speech, and mobility or adapting people's homes to make them as accessible as possible, so that they can continue to do the things that matter to them.

Now, our specialist augmentative and alternative communication service, supplemented by local support from a range of allied health professionals in every health board and access to specialist communication equipment services, is provided across Wales. In 2018 an additional investment of £608,000 was made to expand the service and increase speech and language therapy posts. So, whilst you point out that the money is not going into research in the way that you'd like, actually the money is going into making their life a bit better while they're still with us, and that ensures that that local multiprofessional team continues to support those people for as long as possible.

Continuity of care, co-ordination, partnership and collaboration between services and co-production with those who receive these services is also really important. In south Wales, a network model of care has been developed through the south Wales MND care network, and this is a model that other centres in the UK are now trying to replicate, and colleagues from Northern Ireland have spent time with the south Wales team to learn about the network model, with a view of adopting a similar approach. That network model is founded on collaboration and partnership, enabling flexibility and agility within the services to respond to the needs of patients and their families in a timely way. And in north Wales, Betsi Cadwaladr University Health Board have been awarded a certificate of partnership by the MND association, and that's in recognition of the constructive and highly successful partnership relationship over several years between the health board and the Motor Neurone Disease Association to improve the standard of service for people affected by MND. The health board and the association have successfully worked in partnership with people with MND, their families, carers and staff, to co-produce exciting and innovative opportunities to shape MND services in north Wales, and that includes the appointment of two MND care co-ordinators, who, alongside a range of other partners, support all people with MND in north Wales.

But as we know, there's always room to improve. The Welsh Government is continuing to work with the neurological conditions implementation group to improve services for all those with neurological conditions across Wales, including MND, and improved access to psychosocial support and multiprofessional clinical neurology expertise is being prioritised by this group. And in the absence of curative treatment options, the Welsh Government recognises that clinical trials will have a significant role to play as we seek a treatment for MND. And the Welsh Government, through Health and Care Research Wales, provides infrastructure to support and increase the research across Wales, and that includes funding of approximately £15 million to NHS organisations, to enable them to undertake high-quality clinical trials in a broad range of areas, including MND. And I'm aware, through my colleagues at Health and Care Research Wales, that there are several MND studies open in Swansea Bay University Health Board and Cardiff and Vale University Health Board. In some cases, support is also available for patients who are eligible for clinical research studies outside of Wales, for example in the Walton Centre NHS Foundation Trust, who provide specialist care to our patients with MND in north Wales.

I recognise that we need to grow the range of MND studies being carried out in Wales, building on that current SMART trial, which you emphasise is already recruiting. But I will give some thought to the idea of appointing a lead neurologist in this area.

In the budget in March, we added £2 million to the adaptation budget, with additional funds for care and repair for local authorities, so that people can adapt their own homes as their condition worsens. Most adaptations are small and are completed in a matter of days. Over the past two years, the Minister for Climate Change has added £2 million to the funding for local authorities.

I'm very grateful to the Minister, and I welcome what you've said, that you are going to consider this idea of having a lead neurologist. As part of that consideration, and as Peter Fox asked, would you be willing to meet with the MND research network to hear the arguments and the benefits that would emanate from that directly? I'm certain that it would be very much welcomed by the families if you were willing to commit to doing that.

I would be happy to do that, but let me look at the advice that I receive. But I'm more than happy to look into whether this is something we would want to see, and whether the expertise is available for this kind of development. So, I'm happy to do that, and I hope that I can meet with you and Peter Fox too.

It is worth saying in conclusion that small adaptations are available, but there are also major adaptations, but, unfortunately, people run out of time for those adaptations. So, the Welsh Government is committed to work with partners to find and take advantage of opportunities to make these improvements that are so important to those living with MND, so that nobody feels that they are isolated. Thank you.

And that brings today's proceedings to a close.

The meeting ended at 18:41.