 The final item of business is a member's business debate on motion 3, 777, in the name of Bob Dorris, on MND Scotland, report No Time to Lose, addressing the housing needs of people with MND. This debate will be concluded without any questions being put. I invite members who wish to participate to press the request-to-speak buttons now or as soon as possible. I call on Bob Dorris to open the debate for around seven minutes, Mr Dorris. Thank you very much, Presiding Officer. In today's global MND awareness day, people affected by motor neurone disease all over the world will remember those who have loved and lost to this devastating terminal disease. Here in the Scottish Parliament as a community, we will be no different. There will be friends and loved ones no longer with us and during the course of this evening's debate, we will no doubt hear about some of those people. For some colleagues in this chamber, that will also include Gordon Aitman, who has lost his style very felt in this place. This evening's debate is focused on housing and how we better support those with us today living with MND. On that front, I am sure that we will agree that there remains much still needing to be done. I would like to thank the many MSPs who have signed my parliamentary motion until I meet them to secure this debate this evening and addressing the housing needs of people with motor neurone disease. I also wish to thank MND Scotland for their powerful, very sobering and challenging report No Time to Lose, which gathers much of the vital data and, importantly, captures the crucial lived experience in reality of individuals living with MND and their families. My thanks to the families who have shared their stories, including Marie, whose husband Ian had MND, Beverly, whose husband Alan had MND and Lynne, whose father-in-law Drew had MND. They played pivotal roles in this research and in the public gallery here this evening, and I thank them for their attendance and for their contribution. That is exactly where the debate must begin. I want to quote two lived experiences direct from the report. The first one that I raised at First Minister's Questions a few months ago, Marie, whom I mentioned earlier, told MND Scotland. My husband lived in the living room with no shower facilities at all. We were washing him out on the decking with buckets of water. No dignity in that whatsoever. 11 per cent of people affected by MND reported waiting more than a year for a wet room. For some, the wait is longer than the time they have left. We should just let that sink in. We must do better. Of the local authorities who responded to MND Scotland, the average waiting time for wet rooms to be fitted in 2020-21 was 158 days. However, one local authority reported an 80.7-day average waiting time at another, it was 256 days. That is three months compared to eight and a half months. Every local authority must strive to do better, but the regional variations demonstrates that improvements can surely be made by learning from best practice. On requiring a ramp, a family member of another MND sufferer said, we got in touch to apply for a ramp and we were asked by the local council if he could still walk. He said yes, and so they said, we will not look at it until you can't walk. He asked how long the waiting list was and it was nine months, so they wanted us to wait nine months from the point that he couldn't get out. There has to be a better way to deal with adaptations like this. It needs to be proactive, not reactive or heavily delayed. People cannot be prisoners in their own homes. For ramps, there is an average waiting time of 149 days. However, one local authority said that they had an average waiting time of just 23 days, with another local authority has an average waiting time of 475 days. Again, the regional variations are stark. It cannot be right to have a way of 15 and a half months to have a ramp installed when the average prognosis for someone living with MND following diagnosis is just 18 months. There are various recommendations in the MND Scotland report regarding adaptations. Understandably, MND Scotland has called on the Scottish Government to acquire local authorities to formally fast-track applications for adaptations for people with MND. They have suggested that certain social security forums can be used to underpin such a scheme. That is a powerful call. Of course, there may be resource implications and increased investment in resource may be required. I do not doubt the challenge in identifying and securing that resource. We should not pretend otherwise. However, with a cross-party purpose, I very much hope that we can find a way forward. We also need to ensure that, even if a property is not externally accessible, that can not be used as a justification not to adapt the property internally. MND Scotland has reported that that happens far too often. It is hardly surprising that MND Scotland has called the report no time to lose. Anything that we can do in this place to live as much of the precious time that those living with MND have left to make invaluable memories with loved ones, rather than having a prolonged fight to have their housing needs met, we must do it. The properties that we built today must be future proof to be fit for the purpose in years to come. As our life circumstances change, including our health, we must increasingly have housing stock, which is accessible and easily adaptable. That should be dealt with at the design and build stage. Looking for imperfect housing solutions to support accessibility both internally and externally, which can be difficult to resolve, we must increasingly become a thing of the past, so must having to move properties in the first place. I know that that is something that Glasgow City Council has been keen to see, having championed the Glasgow standard for developments, attracting public subsidy and also seeking to ensure that 10 per cent of new properties are wheelchair-accessible across all tenures. I should note, though, Presiding Officer, that I could not get data in relation to waiting times in Glasgow, and I looked to meet them as soon as we can work in partnership with them and housing associations to get that data and to drive improvements there. I also acknowledge the work of the Scottish Government in this area. With around £16 billion being invested by the Scottish Government to deliver 100,000 additional affordable homes by 2032, with a minimum of 70 per cent of those being for social rent, there is a real opportunity to make sure that we future proof all new properties for families across all tenures. I know that that is something that the Scottish Government is keen to see happen as it develops a common housing standard as part of its work on housing to 2040. In the meantime, however, there remains significant issues over agreed definitions of what constitutes an accessible home in the first place, and in various other matters, more must be done. Likewise, much more needs to be done to ensure better alignment between the various allocation policies of councils and various housing associations, and we need to ensure that they are more consistently taken into account of the housing needs of those living with MND within those allocation policies. For my part, as I have said, I will be arranging to meet colleagues at Glasgow City Council to see what more they can do in partnership with housing providers to better meet the housing needs of those living with MND. I know that the First Minister pledged the Scottish Government to take the time to consider the various recommendations that are contained within the MND Scotland report No Time to Lose. I look forward to hearing the thoughts of colleagues this evening on this, as well as an update from the Cabinet Secretary on how the issues contained within the report are being addressed. In particular, we need robust, reliable, comparable and routinely collected data on the wait for adaptations across all 32 local authorities. We need to see the waiting times to reduce and the significant gaps in performance across local authorities narrow. That needs to include fast tracking, as required also. We need similar meaningful comparisons on how local authorities and housing associations use their allocation policies to support the housing needs of those living with MND, and we need to build homes fit for the future. I know that there is much good work on going. As I am conscious, the title of the report is No Time to Wait. In conclusion, for some of the people in the gallery here today, time ran out for them and their loved ones, but together, across party and across parliament, we must do better. I thank you for taking the time to listen to my contribution here this evening. Thank you very much indeed, Mr Doris. I now call Graham Simpson, who will be followed by Mark Griffin for around four minutes. Thank you very much, Deputy Presiding Officer. Can I start by congratulating Bob Doris for securing this very important debate? Indeed, for his speech, which was very considered, I know that he feels strongly about the issues. I also want to thank MND Scotland for giving a presentation to the cross-party group on housing, which I am looking enough to convene about this report, No Time to Lose. It was a very powerful presentation indeed, and I welcome MND Scotland and their guests to the public gallery as well. Now, as Bob Doris has said, today is Global MND Awareness Day. Well, actually, every day should be MND Awareness Day because we should be alert to the issues all the time, full stop, and be doing something about it. We shouldn't need a special badge to do that. The report raises a number of issues, and there are some stark statistics in it. There's a 1 in 300 risk of getting MND in your lifetime. That sounds quite high to me, as Bob Doris has said, the average life expectancy after diagnosis is just 18 months. That's a really short period of time, and that tells you that when you are diagnosed, you need fast action. Really, in too many parts of Scotland, we're not getting that. In the report No Time to Lose, which was carried out in 2021, a number of points were made. There are extensive waiting times for adaptations, ramp waiting times are particularly lengthy. The wait across local authorities was, on average, 149 days to get something done to your property. One council reported an average wait of 256 days to fit a wet room, which is vital. 11% of people with MND waited for a year for a wet room. People with MND faced barriers to accessing adaptations. I want to, as I come to a close, just mention something in my own patch, some figures from north and south Lanarkshire. Before I do, I watch with interest. Bob Doris mentioned Marie, that's Marie Cartwright, and she featured on the BBC actually talking about her own situation with her husband Ian. I remember she stood outside her house and she was demonstrating how she had to throw buckets of water over Ian to wash him outside, which was quite heartbreaking when you think of it, that someone actually has to do that. When north and south Lanarkshire were asked, what is your definition of accessible housing, north Lanarkshire do not reference external documentation, south Lanarkshire referred to housing for varying needs, what percentage of your local authority or social housing stock is accessible or wheelchair accessible, north Lanarkshire says wheelchair livable properties 0.45% only of council stock and 0.34% of all social housing stock, not really good enough, south Lanarkshire 0.8% wheelchair accessible housing, and that includes sheltered housing, really poor figures. I could go on because I'm well aware I'm over time, but the figures across both councils in my patch are really not good enough, the postcode lottery has to end, I think government and councils have to work together to address this problem so that we do not have to put up with this any longer, thank you. Thank you very much Mr Simpson. I now call on Mark Griffin who joins us remotely who will be followed by Elena Whitham for around four minutes Mr Griffin. I'm grateful to speak in today's debate on global MND awareness day. The work of MND Scotland in driving the issue of the availability of accessible housing up the agenda is fantastic. Their report, No Time to Lose, has been vital in understanding the changes that are needed to secure accessible housing and adaptations that fit for purpose ahead of the promised review of the housing for various varying needs design guides. I also thank Bob Doris for getting the debate to the chamber today so that we can all talk about it this evening. It's certainly disheartening, though, that the report's recommendations are not already a reality. The postcode lottery of support people with MND are struggling with, just to get the housing that works for them, while battling rapidly progressing neurological illness. Some of their final months are nothing short of cruelty. I hope that when the cabinet secretary speaks, she can confirm that the Government is working across Government and with partners to pursue these badly needed changes. The fast-track applications have a common and consistent definition of accessible housing, a 10 per cent target for wheelchair-accessible new-built homes, and real increased resources for adaptations across Scotland. The research that MND Scotland conducted for the report is so valuable to understand the task, and I do not think that the Government's own statistics are up to the job. Like the patchwork of policies, the data is inconsistent and itself requires a real overhaul if central Government wants to truly make our housing system accessible. In my own region in central Scotland, MND Scotland found that, in Falkirk, just 1 per cent of stock is wheelchair-accessible. There is only an aspiration to build accessible properties in new-builds, but there is no target for people who are terminally ill, for people who are terminally ill and are not prioritised. The average weight in 2020-21 was 675 days, almost two years. The game Simpson previously cited the situation in North and South Lanarkshire, while it only takes 272 days for a disabled person to be housed in North Lanarkshire. Last year, it took two and a quarter years in South Lanarkshire. Those are devastating figures for disabled people and people with MND. Longer than 18 months from a diagnosis, underline just how important today's debate is. As a party, Scottish Labour has gone into the last two elections, committing to a 10 per cent target for new homes to be wheelchair accessible. I welcomed the Government's commitment last week to deliver a target for all 10 years, but I would be interested to hear whether there have been any discussions across Government, particularly with the planning minister, so that we could secure that target in the upcoming MPF4, which is making its way through Parliament at the moment, and looking specifically at making a requirement in the affordable housing supply programme. There are amazing contributions by being made by some RSLs and councils up in the country to build more accessible homes, but it needs national co-ordination and doing it through the affordable housing supply programme would be one way to do it. The idea of fast-track allocations and adaptations is an excellent one, and it is commendable of MND Scotland to pursue that. Building on the successes of MND Scotland during the passage of the Social Security Act 2018 to get fast-tracked benefits for those who are terminally ill, I am pleased to see that the charity is now pushing this concept further. It is an absolute necessity for fast progress in MND Scotland, and it is an area where national and local government can make strides in providing a real impact in supporting people. We can all agree that the last thing that someone who is terminally ill needs to be doing is battling with public sector bureaucracy, but the work done by MND Scotland and the recommendations that we have been able to debate today will undoubtedly have benefits for all disabled people in Scotland, especially those requiring wheelchair-accessible housing. I hope that the Government can undertake to make sure that more support comes in time for people with MND Scotland. Thank you, Mr Griffin. I now call on Eleanor Whitham to be followed by Gillian Mackay for around four minutes. First, I thank my colleague Bob Dorris for securing this important debate. I recently had a meeting with MND Scotland to discuss their report No Time to Lose, which addresses the housing needs of people with motor neurone disease, and to hear of the lived experience of my constituent Lynn McCartney, who is the surviving daughter-in-law of MND's sufferer, Drew McCartney. I welcome Lynn McCartney to the public gallery today. At this meeting, I heard of how too many people with MND cannot get adaptations or an accessible home quickly enough because systems are not designed for people living with a rapidly progressive terminal illness, and that some local authorities waiting lists for adaptations in accessible housing are longer than the average life expectancy for somebody with MND, which we have already heard is approximately 18 months from diagnosis. As a consequence of that, people with illness can be trapped in unsafe homes, sometimes in a single room, living without the dignity and care that every person is entitled to. I heard first hand from Lynn about the challenges that she and her family faced when trying to secure suitable accommodation for her father-in-law Drew when their own home was deemed unsafe. Of the immense anxiety and stress that caused the family during the precious time that they had after Drew's MND diagnosis, which was regrettably an all-too-familiar experience, the McCartney resorted to residing in their towing holiday caravan without central heating or running hot water outwith their local authority area and support network for nearly a year. Some of you may remember that this was on the news in order to provide the most accessible accommodation as quickly as they could once it became apparent that, with many external and internal stairs, their own home was no longer safe. Drew and his wife Helen were eventually rehoused in a lovely accessible bungalow back in Cumnock near family where he was able to live his remaining life to the full, surrounded by friends and family. His daughter-in-law Lynn was at pains to explain to me that Drew got many more months than the average MND patient and had that not happened he could have well have passed away whilst living in that caravan. I cannot escape the valid points that my constituent and MND Scotland make with regards to the housing struggles people who receive an MND diagnosis face and I am particularly struck by the desperately short life expectancy of 18 months from diagnosis. I raised this family's plight to the cabinet secretary's attention and she advised me that the housing to 2040 strategy sets out our vision for housing in Scotland and we have a route map set out to help us achieve this and the aim is to ensure that everyone has a safe good quality and affordable home that meets their needs in a place that they want to be. This includes all aspects of housing and independent living for disabled people. I am glad to note that actions being progressed include improvements to streamline and accelerate the adaptation system and that part of that work, the adaptations process will be made simpler and quicker, including options for fast tracking those with MND and other life limiting illnesses. There will also be a focus on promoting awareness of and greater use of the scheme of assistance to fund adaptations and consideration of passporting, grid practice and allocations processes that offer options to directly match people with MND and other life limiting illnesses to suitable accommodation. Additionally, that review work will also consider the requirement for a consistent nationally agreed definition of what an accessible home is and progress in delivering wheelchair housing targets. We have heard across the chamber that that is a postcode lottery at the moment and we really do need to have an agreed definition. I am also pleased as Mark Griffin has pointed out that our new adult disability payment from Social Security Scotland will ensure that those who face this illness will be financially supported in a respectful and dignified way. I have also been engaging with the newly appointed head of housing and communities at Eastershire Council who has agreed to work closely with MND Scotland to ensure that their next housing needs and demand assessment, which informs their local housing strategy, has MND fully in mind. Those living with MND have no time to lose and it is incumbent upon us in this place and across our council chambers to find solutions that will enable them to spend what time they have left pursuing what makes them happiest with those they love the most. I thank Bob Doris for bringing this debate to the chamber. I spoke in his member's debate on the last MND awareness day and I recognise Mr Doris' efforts to raise awareness of this condition. As others have said, MND is a rapidly progressing condition and average life expectancy is just 18 months from diagnosis. Diagnosis of MND can be devastating for people and their families who have to come to terms with the fact that their loved one may lose the ability to walk, talk, eat, drink or breathe unaided, sometimes in a very short time frame. According to MND Scotland, most people with MND will need adaptions to their homes such as handrails, ramps or wet rooms. If those adaptions cannot be made, they may need to move into another more accessible home. However, as we have heard, there are major issues around the availability of accessible housing. According to Inclusion Scotland, many disabled people in Scotland do not live in a home that meets their needs and 86,000 households in Scotland that include a disabled person need an adaption but do not have one. Waiting lists can often be longer than life expectancy for people with MND, which means that people are spending the time that they have left with their family and friends fighting for accessible housing that meets their needs, with some unfortunately dying before they get it. In the report No Time to Lose, MND Scotland emphasised the importance of early intervention. Too often, local authorities are fitting adaptions reactively. People are being asked not to apply until they need them and then are faced with a long waiting list. The report highlights that adaptions that we know someone with MND will need such as wet rooms, ramps or handrails to form part of forward planning from the point of diagnosis. However, although there is evidence of good practice across some local authorities, the current coast code lottery means that some people are being told that they are asking for adaptions too soon. Given the rapidly progressive nature of MND, there should be no such thing as too soon. MND Scotland is calling for improved understanding of the condition among people working in local authorities. Good understanding can mean that people with MND miss out on support that they are entitled to and can be traumatised by having to explain their condition over and over again for multiple key workers. When good practice is taking place, it is often because an individual practitioner such as an occupational therapist has a good understanding of the condition and how it progresses and has pushed for adaptions to be installed more quickly. I want to highlight that the report did find that some key workers such as occupational therapists were doing great work in that regard and acting as excellent advocates for their patients. In community awareness and understanding of MND, only more people will receive that level of support. As I have said, where adaptions cannot be made, people with MND may have to move to other accommodation. Leaving your home can be a very stressful emotional time and we need to support people through that process where it is necessary. However, the report highlights that applying for an accessible home is often an arduous time-consuming process. To quote the report, people are left spending time and energy fighting for homes that meet their accessibility needs and requirements. For many bereaved family members and carers, that meant that there was less time spent with the person diagnosed. Instead, navigating forms and arguing for needs took up time that they did not have but timely from doing things together and making memories. The report for people with MND who are applying for adaptions or new accommodation must be greatly improved. Processes should be streamlined where possible and people with MND and their families should be supported by well-informed key workers to appreciate the rapidly progressing nature of the condition. It will help people to spend time that they have left with their loved ones, not fighting for housing that meets their needs. Thank you very much indeed, Ms Mackay. I now invite Shona Robison to respond to the debate. Cabinet Secretary, for around seven minutes please. Thank you very much and I welcome Global MND Awareness Day and to thank Bob Doris for bringing this important debate here today. I'm really pleased to be able to respond on behalf of the Government and try to address as many points as I can. I think that this Parliament has a proud record of raising issues around MND and, more importantly, making progress on them. Of course, Gordon Eaklin was a pivotal figure in doing that. Bob Doris was quite right to pay tribute to his work. The important contributions that we've heard today have all raised awareness of MND. We've also heard about the work that MND Scotland, and particularly its report No Time to Lose, addressing the housing needs of people with MND. A very significant report indeed, and members have highlighted the housing needs and aspirations of those diagnosed alongside their families and carers. We want everyone with a life-limiting condition such as MND to be given the support that they need to live at home or in a property that meets their needs. I recently met Rachel Maitland, the chief executive officer of MND and her team, to discuss the recommendations of the report. It was a very helpful meeting, certainly from my perspective and, hopefully, from there as well. I got some very useful feedback about some of the good practice around, for example, speedy access to adaptations and the practical approaches to finding suitable, accessible homes for people with MND. What is important is that we replicate that good practice. I plan to discuss that with the new COSLA team to ensure that we continue to support the spread of good practice across Scotland. I am very clear that we need to make improvements. I have heard a number of members make those points this evening. I am aware of the complex cases where people with profound mobility issues of whatever nature have struggled to find suitable, accessible affordable housing. There are lessons to be learned from those experiences so that our homes can fully support our changing needs and expectations. I thank the cabinet secretary for taking the intervention. She said that she will be in discussions with COSLA, which is entirely right, because most of the recommendations in the report relate to councils, it seems to me. However, there are some that are aimed at government, one of which is that the Scottish Government should establish a common and consistent definition of accessible housing. Can she say which of the recommendations she will be able to take forward? Many of those are already being worked on. I am happy to provide updates to that. Of course, I will come on to two of those in a second. On the point of being able to live independently, it is what we would want for ourselves and our loved ones. Living independently helps ease the pressure on services as well as family members. To support that, our homes should be accessible, flexible and easily adapted to changing needs. We have set the strategy housing to 2040, which sets out our long-term vision for housing, which includes the delivery of homes built to housing for varying needs. That guidance remains central to our affordable housing supply programme. We are reviewing the guidance to ensure that it continues to be ambitious and meets the needs that it needs to meet. That will help to inform a new 10-year neutral housing standard for Scotland, which was included in housing to 2040. Initial engagement with stakeholders is already under way, and we aim to produce a draft standard next year and to progress legislation after that. As you know, local... Bob Doris. I thank the cabinet secretary for giving way. It is a really good work taking place, but I know that this can be prolonged when there are consultations, drafts and legislation before things become statutory. Will you be working in partnership with all housing providers in the construction sector and planning authorities so that those draft standards, even though they may alter, will be aiming to implement them at the earliest stage even before they become statutory? I am happy to do that. I think that it would point me, Mark Griffin, about using all the leavers such as NPF4, for example, on new housing developments that are coming forward. Of course, the importance of the affordable housing supply programme, I will come back to that in a second. Local authorities, as people have recognised, are responsible for assessing the housing needs in their area quite rightly because they know their local areas and, importantly, setting out in their local housing strategies how that will be met. Our guidance for councils to assist them with preparing those strategies ensures that specialist and accessible homes are central to their housing planning and delivery process locally. Informed through the joint working with partners, including MND Scotland, we have put in place requirements for local authorities to set targets for the delivery of wheelchair-accessible homes across all tenures. I guess that is a case of us, leading from the centre, working with local authorities to make those changes. I am pleased to say that 28 of the 32 local authorities have identified wheelchair-accessible targets and the remaining four are in the process of finalising targets. That is important. Increasing the supply will support more choice and flexibility for people. Of course, it is fairer as well. Backing that up in terms of the affordable housing supply programme is, of course, the £3.6 billion that is being made available for this parliamentary session. Housing providers have had those five-year allocations, so they know what they have. What we need to make sure is that the range of homes that are built through that investment are able to meet everybody's needs. We need the plans locally. We need the targets to be set based on local needs. Most importantly, we need those targets to be met. However, we know that the majority of people in Scotland do not live in social housing, so although we are making progress with the affordable housing supply programme, we need to make sure that everyone, regardless of tenure, has a home that meets their needs now and into the future. We know that there are issues with the way that adaptations are being accessed and delivered locally. We are considering how the process can be streamlined and made easier for people who need adaptations when they ask, not months later. That is really important in terms of the fast-tracking for people who, where time is literally of the essence and there is no time to wait for months for those adaptations to be done. We understand that, and we need to make sure that action is taken to address that. We also know that technology is now playing an increasingly important role in supporting people's independent living. The ability to remotely control household action through the touch of a button can make life so much easier. We want to ensure that advances in technology and the responses to the recent consultation on community equipment and housing adaptations, the draft guidance, inform our work to improve the adaptation system. Meantime, through our housing strategic partners grant, we provide funding to organisations such as Housing Options Scotland and Care and Repair Scotland to provide specialist advice to people with disabilities to help them to find the right house or to make relevant adaptations so that they can live in a home that meets their needs. I encourage people to use those sources of advice, because they are really, really good. We know that the best way to resolve the disconnect between adaptations and timing is to ensure that housing, health and social care services are working together to streamline and accelerate the adaptation system. Embedding the person at the centre is essential. That will be essential for the new national care service as it goes forward. Obviously, significant steps on the creation of the national care service have been taken this week, and we need to get that right to address many of the issues. I can tell you that Kevin Stewart, as a minister responsible, is acutely aware of that need. You need to wind up. Yes, I want to close the debate by thanking those who have contributed all of the examples and to assure you that the Scottish Government will give full consideration to the report's recommendations to improve the housing outcomes for those living with MND. Thank you very much indeed. That concludes the debate, and I close this meeting of Parliament.