The following amendment has been selected: amendment 1 in the name of Siân Gwenllian.

The next item is the second Welsh Conservative debate of the afternoon: motor neurone disease. I call on Peter Fox to move the motion.

Motion NDM7855 Darren Millar

To propose that the Senedd:

1. Recognises that motor neurone disease (MND) is a rapidly progressing disease that has no cure and that a third of people die within a year of diagnosis.

2. Welcomes the UK Government’s investment of £50 million to fund research into new treatments for MND.

3. Acknowledges that equitable and faster access to housing adaptations are essential to ensuring people living with MND can live safely, independently and with dignity in their own homes.

4. Believes that the impact of the delays in installation of housing adaptations and the means testing process has a huge impact on the time people living with MND have left.

5. Calls on the Welsh Government to simplify access to housing adaptations by creating a non-means tested, fast-tracked process.

Motion moved.

Diolch, Deputy Llywydd. I move the motion in the name of Darren Millar.

Before I begin, I would like to declare that I'm proud to be an MND champion for the Motor Neurone Disease Association, and would like to thank them for the help that they have given me to prepare for this debate. 

Members, just for a few seconds, imagine being robbed of your speech and mobility. Imagine feeling as if you're locked in a failing body, unable to move, talk and eventually breathe. For some people in Wales, they don't have to imagine this because they are living with this reality right now. Motor neurone disease, often known as MND, is a fatal, rapidly progressing disease that affects the brain and spinal cord, so that muscles no longer work. It affects up to 5,000 adults in the UK at any one time. In Wales, approximately 200 people currently live with MND. This may not sound like many people, but this awful disease has significant consequences for those living with it, as well as their family and their friends. Cruelly, it kills a third of people within one year of diagnosis, and more than half within two years. There is no cure, and the person's condition will worsen over time due to the progressive nature of the disease. I think we could all welcome the UK Government's investment of £50 million to fund research into new treatments for MND, and acknowledge Plaid Cymru's amendment today that we can do more to improve the scale and quality of clinical trials and increase patient access to new treatments.

Eventually, people with MND will need specialist equipment to help maintain dignity and independence, allowing them to remain in their own homes. Housing adaptations, therefore, support the provision of care close to home, reducing pressure on front-line services such as health and social care, and enhance well-being for the individual and their families. However, as an MND champion, I've heard from people living with the disease about the unnecessary challenges they face to have their homes adapted to meet their needs. Indeed, research by charities such as MNDA has found that the current housing adaptations process is far too long for people with rapidly progressing diseases. As the MNDA have said, these delays are an unintended by-product of the evolution of legislation, the variety of funding regimes that have existed previously, as well as the sheer numbers of organisations involved in delivering adaptations. The current process is also too complex and financially unfair. Means-testing for adaptations further slows down the process, whilst different councils have varying definitions and processes, leading to a postcode lottery of support across Wales.

Now, I understand that the Welsh Government has made some welcome progress on this matter, and I welcome the recent simplification of the process for people to get help with small and medium-sized adaptations to their homes. But I am concerned to hear that some councils are continuing to apply means-testing until there is a legal obligation not to do so, and I hope this is something that can be looked into further.

Deputy Llywydd, to conclude, we have made steps in the right direction in Wales, but need to go further. We need the Welsh Government, indeed all Governments, to work with councils and social care providers to put in place a fast-track housing adaptations process and to bring to an end the current means-tested system, so that people living with MND have the best quality of life possible. I hope all Members of this Welsh Parliament, regardless of their political membership, will support this debate and will work together as one Chamber to deliver the dignity and peace of mind that people living with MND deserve. I look forward to listening to the debate, Deputy Llywydd. Thank you.

I have selected the amendment to the motion, and I call on Rhun ap Iorwerth to move the amendment tabled in the name of Siân Gwenllian.

Amendment 1—Siân Gwenllian

Add as new point at end of motion:

Calls on the Welsh Government to explore the establishment of Wales-based centres of expertise for neurological diseases to improve the scale and quality of clinical trials and increase patient access to new treatments.

Amendment 1 moved.

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—

Rhun, you need to conclude now. 

—be made available to those with MND. I think that's what's going to contribute towards the quality of life. Too many people have to travel across the border for treatment, and we need to see how we can strengthen the provision here in Wales.

Thank you to my colleague Darren Millar for submitting this really important debate. As outlined by my colleague Peter Fox, who opened our debate today, motor neurone disease is a rapidly progressing disease that, sadly, has no cure. And I'm sure many Members across the Chamber will know of someone who has been affected by this awful disease. And, Deputy Presiding Officer, I'd like to take this opportunity to remember and briefly pay tribute to a friend of mine, the late Councillor William Knightly MBE, who sadly lost his battle to MND in 2014. Following the Member for Aberconwy's elevation to the Senedd in 2011, Councillor William became my group leader at Conwy County Borough Council, and I was his deputy. So, we worked together closely for a number of years—a poor man's Batman and Robin, you might say. He was an excellent, though, local councillor and group leader. And I still remember the times that we used to laugh together in the early months of his MND diagnosis. When he lost his ability to speak, in true Councillor William style, he decided to use a text-to-speech machine in council meetings, which at times—the machine, apparently, used to say all sorts of unintended things. [Laughter.] Now, if anyone knows Councillor William, I'm sure it wasn't the machine's fault that those comments came out in those meetings.

But, it has been pleasing to see, of course, awareness of MND raised in recent times. Indeed, in the last week or so, I noted that Kevin Sinfield, a former rugby league player for Leeds Rhinos, ran an incredible 100 miles in 24 hours—an absolutely unbelievable achievement—and all in aid of his friend and ex-team mate Rob Burrow, who was also a professional rugby player for over 16 years and who was sadly diagnosed with MND in December 2019. As of today, this challenge has raised a whopping £1.8 million, raising money directly for people living with MND. And causes like this deserve a huge amount of credit from this Chamber here today. 

As I mentioned, there is no cure currently for MND, but what our motion seeks to provide is equitable and faster access to housing adaptations, which are essential to ensure that people living with MND can live safely, independently and with dignity in their own homes. And this is why we need a non-means-tested fast-track process for housing adaptations. I was really pleased to see that the Government haven't put forward an amendment to the motion today, and I'm pleased also to see Plaid Cymru call for Wales-based centres of expertise for neurological diseases to improve the scale and quality of clinical trials and increase patients' access to new treatments. Therefore, I do hope that, today, the Government will support our motion and that we can see long-lasting changes to support those who are suffering with MND and their families. Diolch yn fawr iawn.

Laura Anne Jones.

Did you say my name then? Yes. I couldn't hear you. Your microphone was muted. Okay, thank you very much, Deputy Presiding Officer.

I welcome the debate here today, and I'd like to thank Peter Fox for bringing it forward; it is absolutely crucial that we talk about this. Although rare, there are few conditions as devastating as motor neurone disease, a rapidly progressing condition in the majority of cases, which is always fatal. Sufferers will usually experience losing the ability to speak, swallow and the use of their limbs. It is because of this that accessible housing and housing adaptations are most important to provide the best quality of life and to maintain a level of dignity and independence as the disease progresses.

Unfortunately, due to the lack of accessible housing, waiting lists for home adaptations, and the costs of those adaptations, many people with motor neurone disease are trapped in their houses, which do not meet their needs. Considering that a third of people die within one year of that diagnosis, it is an injustice to sufferers, their families and carers that some people have had to wait up to 40 weeks for adaptations to be completed. Because of these difficulties, many people with MND have had to spend prolonged periods of time in hospital, as their homes are not suitable or because they have sustained injuries such as falls or fractures. When this disease itself robs people of their quality of life, it is appalling that they have to wait such a length of time.

The Equality and Human Rights Commission found that only one out of Wales's 22 local authorities have actually set targets for accessible and adaptable housing. In the twenty-first century, when we're so acutely aware now of the need for adaptations—as Rhun said and as Peter said—a postcode lottery across Wales is just not on any more and it needs to be urgently addressed. An overly complex grants application system to install home adaptations only exacerbates these inequalities that people with disabilities face.

There is a significant way to go to support people with MND and other disabilities, and we must see reactive measures from this Welsh Government to provide the best quality of life possible for these people. We welcome the Welsh Government's announcement of the £15 million investment for NHS organisations to help undertake more clinical trials in areas such as MND, and the Conservative UK Government, who have created a £50 million research fund with the aim of curing MND. But more needs to be done, and more needs to be done now. We can't continue letting down people with MND and their families who are suffering horrendously day on day. We must do more and I urge you, everyone in this Chamber, to support this motion today, which will go some way to creating long-term help for these people.

I call on the Minister for Health and Social Services, Eluned Morgan.

Diolch yn fawr, Dirprwy Lywydd. First of all, I'd like to thank Peter Fox for bringing this important issue to the Chamber and Members who have contributed to the debate today. I have listened carefully to all the speakers and I think there have been many valid points made.

Motor neurone disease, as so many have said, is a devastating disease and I know this because my dear uncle Robert suffered from this cruel affliction and it was absolutely heartbreaking to watch his physical disabilities increase on a daily basis to a point where he literally couldn't move a muscle, whilst his mind remained as alert as ever.

For the most common form of motor neurone disease, life expectancy is usually two to five years from the onset of symptoms. Unfortunately, at this time, motor neurone disease can't be stopped or reversed, but therapies, equipment and medication can help to manage symptoms alongside adapting people's homes to make them as safe and as accessible as possible. As Peter Fox has said, there are around 200 people in Wales living with MND at any one time and, thankfully, it isn't a common disease, but for the people who receive a diagnosis of MND, of course, this is no comfort at all.

I firmly believe that providing good-quality services for people living with neurological conditions, such as MND, is absolutely vital, and this needs to be balanced with keeping people safe and well. 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.

As part of the treatment option offered to patients, the Welsh Government recognises that clinical trials will have a significant role to play, as we seek a treatment for MND. I recognise the benefits that Wales-based centres of expertise for neurological disease could bring, but I don't believe we need specialist research centres to improve the scale and quality of clinical trials and to increase patient access to new treatments. It is, however, vital that we are linked to any new research under way from across the whole of the UK and internationally, and we're already doing this, and that's why, I'm afraid, I won't be supporting the amendment tabled by Plaid Cymru to today's motion.

The Welsh Government, through Health and Care Research Wales, provides infrastructure to support and increase research across Wales, and this includes funding of approximately £15 million to NHS organisations to enable them to undertake high-quality clinical trials in a broad range of areas, which includes MND. I'm aware, through my colleagues at Health and Care Research Wales, that there are several MND studies already 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.

People suffering from MND and other degenerative conditions, along with their partners, families and carers, rightly expect us to do our utmost to help them maintain their independence and to live with dignity. We have comprehensive adaptation programmes in Wales involving councils, housing associations and care and repair agencies. Together, our total annual spend is approximately £60 million.

It's a requirement for all providers to adhere to the standards of service for housing adaptations that we published in 2019. These include targets for waiting times for different kinds of adaptations. Most are small adaptations, which are completed within a few days, but the biggest group of adaptations in terms of value is the medium-sized adaptations. These include the most common adaptations, such as a stairlift, an accessible shower, a wet room downstairs and large ramps, or a combination of all of these things. On average, a medium adaptation takes a little over four months to complete.

This year, the Minister for Climate Change is providing £1 million in additional funding to local authorities to avoid using means tests for medium adaptations. The response from local authorities has been very positive, but the adoption of new policies through the councils' procedures does take time. We expect that the vast majority of councils, if not every one, will have adopted a policy of not using means testing by April of next year.

Only a few major adaptations are done every year, and these include substantial changes to the fabric of the building, for example, an extension that perhaps would need planning permission. It's no surprise that these take more time because of these complexities, and on average they take around 40 weeks. Now, for those with MND, this timescale poses great difficulties, and I understand, of course, that 40 weeks can be too long for them to wait to help these people. We provided a discretion in April of this year for regional partnership boards to use capital from the integrated care fund to add to the disabled facilities grant for adaptations costing more than the statutory threshold of £36,000.

Of course, doing major building works at such a difficult time isn't always desirable, so it's important that those with MND can access a range of allied health professionals who can provide different approaches and therapies, allowing people to live as comfortably as possible for as long as possible. They will work with people and families to find other possible options instead of adaptations. 

The specialist care provided by the service in Wales will also support people with MND by providing mobility and communication equipment, as is required. Community occupational therapy, physiotherapy and speech and language therapy can also assist people with MND to manage their symptoms, and to reduce the impact of the illness on their daily lives. Allied health professionals are working together with social workers and colleagues in the third sector to provide integrated services, and that's from diagnosis to end-of-life care. Caring for the whole family is crucial, and our professionals take great care in ensuring that all provision is provided in a timely manner, and that it isn't intrusive on families who want to make the most of the little time they have left, very often. To conclude, I want to encourage the Chamber to support the motion. 

I call on Gareth Davies to reply to the debate. 

Diolch yn fawr iawn, Dirprwy Llywydd, and thank you to everyone who has taken part in this debate this afternoon, and a very important debate. And a huge thank you especially to my colleague Peter Fox for taking forward the motion we have before us this afternoon. As Peter highlighted, motor neurone disease is a terrible illness, without any cure and a shockingly rapid progression that tragically robs its victims of their life in such a short and painful time. Half of all sufferers lose their battle to this disease within two years of diagnosis. During this short fight, MND robs the brain of the ability to communicate with the body. It can affect how you walk, talk, eat, drink and even breathe. The last thing MND sufferers need is to have to fight with their local authority for the adaptations needed for them to live safely and with dignity in their own homes.

But this is the reality that those living with MND have to face in today's Wales. Despite actions from the Welsh Government, we have a postcode lottery of home adaptations, and if, like me, you want to end that lottery, I urge you to support our motion today. We will be supporting Plaid Cymru's amendment, as we too believe that Wales is being left behind when it comes to medical research, particularly into neurological conditions. As Rhun ap Iorwerth pointed out, housing adaptations for people with MND is poor. Laura Anne Jones expanded on that with the postcode lottery, and the exacerbations that happen as a result of that. Sam Rowlands mentioned a personal story with the late, great Councillor William Knightly from Towyn. I remember him fondly, as many probably from north Wales on our benches will do, too.

Minister, it was promising to hear the Welsh Government's work on clinical trials for treatment, and recognising the need for clinical trials, because I think if we're going to take this forward and really look towards treatments on this, we need to be leading on trying to develop some research on this so that we're heading in the right direction. It was sad to hear about your uncle Robert and his personal struggle with the disease. I'd just like to tie up today's debate by urging Members to support our motion this afternoon. Thank you very much.

The proposal is to agree the motion without amendment. Does any Member object? No. [Objection.] Yes, there is an objection. I will therefore defer voting until voting time. 

Voting deferred until voting time.