We now move to the next item on our agenda, which is the short debate, and I call on Nick Ramsay to speak on the topic he has chosen. Nick Ramsay. 

Diolch, Dirprwy Lywydd. I'm delighted to, once again, be able to raise the issue of motor neurone disease in the Senedd, and I've agreed to Mark Isherwood and Dai Lloyd that they can have a minute of my time. 

In 2014, I held a short debate on the plight of people living with motor neurone disease and called on the Welsh Government to recognise some of the challenges that people in Wales are facing and look at ways it can better support the MND community. While some progress has been made, and for that I know that I and people living with MND are very grateful, there's still much more than can and should be done. Today's debate specifically is about the need to support people living with MND by adapting the current process and making it easier for them and their families to adapt their homes in response to living with the condition.

Undoubtedly, MND is a cruel disease. It's one that robs people of their dignity and, unfortunately, carries quite literally a death sentence. And so if one message is taken from this debate, it's that time is critical for people living with MND. It's believed that MND kills a third of people within a year and more than half within two years, and so time is so important in ensuring that they can live in a safe and suitable home. Housing adaptations and the process by which they are made to a property need to be quicker, more joined up and ultimately need to recognise the importance of swift action to ensure that people living with MND can live as comfortably as possible. 

Now, in 2018, the Auditor General for Wales published a very important report on housing adaptations more generally, and that report highlighted a number of significant issues. Indeed, that report states that user satisfaction with housing adaptations masks a hugely complicated reactive and inequitable system that is not delivering for all those who may need it, and public bodies are not taking opportunities to improve value for money. The report also highlights that the current system for delivering adaptations reinforces inequalities for some disabled and older people, and addressing need is complicated by the different sources of funding. And people living with motor neurone disease are very much within the umbrella of people living with complex neurological problems who are struggling to adapt their homes quickly enough. 

Now, following the auditor general's report, the Public Accounts Committee, which I chair, also undertook a short inquiry into housing adaptations to focus on some of the themes and established ways in which we could help guide the Welsh Government to improve its processes. What the committee found was that there were so many sources of funding and policies for adaptations it results in disabled and older people receiving different standards of service and therefore the Welsh Government needed to set standards for all adaptations to ensure disabled and older people receive the same standard of service irrespective of where they live, who their property owner is, and whether indeed they own their own home. 

Now, to the Welsh Government's credit, some very important work has been done to review and implement changes to the adaptations process, and I fully appreciate, and the MND Association fully appreciate, that this is a process that will take time. As I understand it, the Welsh Government has established service standards that apply to all adaptations irrespective of tenure, provider or source of funding, and that's been in force since April 2019. Secondly, the Welsh Government has attempted to review the policy on means testing and implement changes, and I know that some work has been done with the housing adaptation steering group, the HASG, looking at how means testing should not be applied to less complex small and medium adaptations or individuals receiving palliative and end-of-life care. The Wales Centre for Public Policy was then tasked to take this forward, involving significant engagement with local authorities. However, the current COVID-19 pandemic has meant that the work has been paused, and the research done by the Wales Centre for Public Policy has not been able to progress as planned. In the meantime, people in Wales living with motor neurone disease and other neurological conditions continue to struggle to get home adaptations done quickly, and, as a result, some are living in homes that are neither safe nor suitable for them. And this is having a very direct impact on health and well-being, which may lead to isolation, lack of physical activity, disengagement from family and community, and unsafe environments contributing to accidents and falls.

Now, I'm sure that the Minister and the Members present listening this evening understand that home adaptations can help mitigate these risks and ensure accessibility requirements are met. For people living with motor neurone disease, these adaptations range from smaller aids, such as very basic adaptations, grab rails or ramps, which are commonplace, to then more complex, expensive changes, such as wet rooms, stairlifts or even, these days, through-floor lifts.

Of course, schemes like the disabled facilities grants, which are administered by local authorities, can provide vital support to people who need to adapt their homes but can't afford to do so. However, the COVID-19 pandemic has meant that work has now been paused and the progress being made on this front pre-pandemic has been halted. Now, of course, I accept fully—it's understandable—that coronavirus has had an overwhelming impact on the Welsh Government's work, but the reality is that, in the meantime, there are people living across Wales with motor neurone disease who are living in properties that aren't equipped to help them live out their days comfortably and safely, and, of course, we are here talking about a terminal illness, so what makes a difference in those last weeks and months of life can make an incredible difference to sufferers and their families.

As the Welsh Government's vaccination programme continues to make strides across Wales, it's time for the Welsh Government to start returning to its work on these issues, so that the progress that was made before the pandemic is not lost. People living with MND do not have the time to wait. Due to the rapid progression of MND, people living with the condition don't have time to wait months on end for adaptations to be made. What's more, a lack of information about what help is available, what to expect from the process and who to talk to, can add difficulties for people with MND, their families and carers, when managing their often rapidly changing lives.

Three years ago, the Welsh Government published its neurological conditions delivery plan, with the aim of securing improvements in the delivery of health and social care. The references, however, to housing are vague in general, stating that people should be able to engage in the design of their own services. Unfortunately, there is nothing about the need for action in providing adaptations so that people can live with MND and other neurological conditions more comfortably. And that brings me to the heart of my short debate this evening, which supports the MND Association's adapt now Welsh homes for MND campaign, which had its Welsh launch earlier today, and I hope that Members of the Senedd will join me in supporting that campaign. That campaign calls for a clear commitment from the Welsh Government to increase funding for local authorities, so that more people with accessibility needs are supported to live as safely and independently as possible. At a local level, councils must put in place a fast-track non-means-tested process to help to ensure low-cost, high-impact adaptations are delivered in a timely way for people living with MND.

The social and economic benefits of investing in accessible housing are clear for all to see: Care and Repair Cymru, who deliver minor adaptations in Wales, estimate that, for every £1 spent, a cost saving of £7.50 is made for health and care, so that's something we should strive for. But, as well as adapting existing homes, more new homes need to be built with higher accessibly standards by default, and a minimum of 10 per cent must be built to higher wheelchair accessibility standards, as recommended by the Equality and Human Rights Commission in 2018.

As more people could live longer with neurological conditions—although, for MND, the future is still pretty bleak—we need to ensure that more homes are built ready to support those whose mobility is impaired. In 2019, Welsh Government put in place a housing adaptation service standard, setting out the level of service expected for the delivery and installation of the housing adaptation that service users, regardless of their location and tenure, can expect. 

I'm asking for the Welsh Government to develop appropriate outcome measures on good practice, to time the installations of adaptations, and to monitor and report outcomes against this delivery tool. That's a very complex way of saying that we're asking for the Welsh Government to review this so that adaptations are more accessible, more timely and that people living with end-of-life care, and towards the end of life, get the support they need to live life more comfortably. If the service standards are to have any meaning, then we need to be able to judge progress in securing what people need. People living with MND and their carers have enough to worry about without having to navigate complex systems to secure these adaptations, so we have a duty to deliver housing solutions quickly for those most in need.

In closing, I hope the Minister will accept the sincerity of today's debate and take back the message that time is critical and that action is desperately needed to support people living with MND in Wales. Let's do what we can to make sure that people living with this condition and, indeed, other neurological conditions, live the final months and weeks of their lives as comfortably and as safely as possible. Diolch.

In addition to safe and accessible homes, carers are key to the maintenance of independence, dignity and quality of life for people living with MND. As stated by Carers Wales, unpaid carers are saving the Welsh Government £33 million every day of the pandemic, but this comes at high personal and economic cost. A report by the Motor Neurone Disease Association found that a third of MND carers spent more than 100 hours each week providing care, more than double the average working week. Forty-five per cent received no benefits at all, and the reduction or closure of many local services because of the pandemic has made a bad situation far worse. Unpaid carers are under increasing pressure to provide more care with less respite and formal support. We must therefore recognise and invest in third sector organisations providing key support services to unpaid carers, particularly during this difficult time. Once local authorities' duties are fully reinstated, it's important they're monitored to ensure they're supporting carers' rights by offering all unpaid carers an assessment to see what support packages might be available to them, including respite care. Thank you.

Can I commend Nick Ramsay and support wholeheartedly all that he's said about timely housing adaptations? In MND, time is of the essence. And I congratulate the Motor Neurone Disease Association on all its work, particularly in this context its Adapt Now campaign. 

A person living with MND needs a considerable amount of complex care generally, particularly when it comes to continuing healthcare. Part of that is the adaptations, but it's more than that as well. Continuing healthcare towards the end of life can make a real difference, but, for too many, the CHC system is not working. That was the result of a report from the Motor Neurone Disease Association in 2019. So, the challenges as regards staffing to enable the continuing healthcare package to succeed remain, as obviously so do the home adaptation timeliness. Diolch yn fawr. 

Thank you. Can I call on the Minister for Housing and Local Government to reply to the debate? Julie James.

Thank you, Deputy Presiding Officer. I also want to extend my thanks to Nick Ramsay, the Member for Monmouth, for introducing this very important debate this evening. As he has said, motor neurone disease is a devastating disease. For the most common form of motor neurone disease, life expectancy is usually two to five years from the onset of symptoms, so I entirely agree with him that we need to do something very swiftly to make people able to live with such a debilitating illness. At the present time, as he also said, motor neurone disease cannot be stopped or reversed, but therapies, equipment and medication can help manage symptoms alongside adaptations to people's homes to make them as safe and accessible as possible.

There are around 200 people in Wales living with MND at any one time. Thankfully, it's not a common disease, but, for people who receive a diagnosis of MND, of course, this is no comfort at all. People suffering from MND, their partners, families and carers rightly expect us to do our utmost to help them maintain their independence and live out their lives with dignity. While the focus today is on people with MND, there are other debilitating and degenerative conditions too, as Nick Ramsay also said. If we can improve the way the system works for people with MND, that will obviously benefit that wider group of people too. 

We already have a very comprehensive adaptations programme in Wales. They do involve local government, local housing associations, and care and repair agencies across Wales. Together, our total annual spend is around £60 million. All providers are required to adhere to the housing adaptations service standards that we issued in 2019. These include target waiting times for different kinds of adaptations. We are also now reporting annually on the performance of providers, and we will shortly be issuing the report for 2019-20, which will include comparisons with previous years for the first time. 

I do want to say at this point that I do understand, of course, that the pandemic has slowed this down, as Nick said. But, just be clear, we have been encouraging people where at all possible to continue with care and repair adaptations right through the pandemic. There have, of course, been areas where somebody is self-isolating or the person hasn't been happy with the work going on in their home, but ,just to be clear, we have been encouraging the work to continue all the way through. 

We continue to refine and improve the data monitoring. I've met myself with Care & Repair a number of times around what data we capture, and, from next year, we will have sufficient data to move to a dashboard, which will clearly highlight key trends, including waiting times. 

Again, as Nick said, adaptations are mostly small. The most significant group of adaptations by value is medium-sized adaptations. These include the most common adaptations that were also mentioned—stairlifts, walk-in showers, downstairs wet rooms and large ramps, or combinations of those types of adaptation. On average, a median adaptation takes around four months to be complete.

There are only a small number of very large adaptations each year. They involve substantial alterations to the property, including extensions that require planning permission. Not surprisingly, therefore, these take longer to complete due to the complexity, and the average is about 40 weeks. For many people, this is an acceptable timescale for major changes to their home, but I can fully understand, in the case of a person diagnosed with MND, 40 weeks can be a very long time indeed. 

Most medium and large adaptations are currently provided through the mandatory disabled facilities grant, which is administered, as Nick said, by local authorities from their capital funding settlement. In 2018-19, local authorities spent around £22 million on DFGs, providing improvements to just over 4,000 properties. In over 90 per cent of cases, the grant fully covered the cost of the works. DFGs in Wales are more generous than in the rest of the UK. In Wales, the upper limit that the local authority is required to fund is £36,000. This compares with £30,000 in other parts of the UK. If the adaptation costs more than £36,000, local authorities already have the discretion to provide a top-up from their own funds. In 2018-19, two thirds of them did so, spending over £2 million. Local authorities can also make top-ups from the Welsh Government Enable grant, which gives them an additional £4 million of flexibility each year.

The most complex and costly cases can be the most pressing and urgent, such as building an extension to enable someone with MND to continue to live independently. However, due to the large sums of money involved and the financial pressures on families in need, this can also be difficult and time-consuming to resolve. As Nick rightly said, this is against what we're all trying to achieve. So, because of that, I amended the guidance for the integrated care fund capital programme for 2021-22, which I issued in January. The regional partnership boards are now able to use their discretion to meet the additional costs of adaptations that cost more than £36,000.

I will be monitoring how much use is made of this flexibility as we go forward but, as we all know, DFGs don't always run as smoothly as they might, and this has been a matter of ongoing concern. For example, we know the means test can lead to delays, even though only 307 out of over 4,000 DFGs in 2018-19 led to the householder making any contribution. This begs the question whether there is justification for conducting a means test in the vast majority of cases. So, I have recently received the research that I commissioned on the means test and disabled facilities grant that Nick also mentioned. The research will be published very shortly, and I hope to make an announcement in the very near future about steps we can take as a result of that research to address that issue. 

Planning is also said to be another cause of delay, but planning permission is only required for the largest adaptations that are not covered by permitted development rights. For the majority of large adaptations, planning should normally be granted within eight weeks, but we know it can take longer and some councils perform better than others. So, if people who are suffering from NMD are currently experiencing particular problems with planning, I would really welcome further information on that. So, Nick, if you do have any information on cases of that sort, please do let me know immediately and we will see whether we can shift them for the specific cases in point. The guidance, you're right, to local authorities on DFGs has not been updated for some time, and I will consult on revised guidance shortly to ensure it deals with the issues that you've raised for the future, going forward.

Can I just finish by saying that I am very grateful indeed to Nick for bringing, once again, this important subject to the floor of the Senedd? I would like to send my best wishes to all the people in Wales who have motor neurone disease and to their families, and to say that we are very grateful to have had this raised this evening, and we fully intend to make sure that people with MND can live out their lives in comfort and security with the best adaptation that we can manage. So, diolch yn fawr iawn. 

Thank you very much. Thank you, Minister. That brings today's proceedings to a close. Thank you. 

The meeting ended at 18:10.