The final item of business is a members’ business debate on motion S6M-03777, in the name of Bob Doris, on the MND Scotland report, “No time to lose: Addressing the housing needs of people with MND”.
The debate will be concluded without any question being put. I invite members who wish to participate in the debate to press their request-to-speak buttons now or as soon as possible.
Motion debated,
That the Parliament welcomes the MND Scotland report, No time to lose: Addressing the housing needs of people with MND, which outlines the challenges that people with MND, including those in the Glasgow Maryhill and Springburn constituency, face when trying to obtain the accessible home that they need through adaptations or an alternative accessible property; understands that MND is a rapidly progressing terminal neurological disease, which can cause those with the illness to lose the ability to walk, talk, eat, drink or breathe unaided, with the average life expectancy being just 18 months from diagnosis; acknowledges that many waiting lists for adaptations and alternative accessible homes are reportedly too long for people with MND with, it understands, some longer than the average life expectancy with the illness; believes that this can leave people with MND unable to spend the precious time that they have left safely and with the dignity that everyone is entitled to, and that, for some, support never comes in time; understands that speed in service provision is critical for people with MND, and notes the expectation that the Scottish Government and local authorities will give meaningful and early consideration to implementing the report’s various recommendations, which include fast-tracking people with MND for adaptations and accessible homes, a proactive, not reactive, approach to adaptations, establishing a national definition of accessible housing, and building more wheelchair accessible housing across Scotland.
17:10
Today is motor neurone disease global awareness day, when people around the world who are affected by motor neurone disease remember those whom they have loved and lost to that devastating terminal disease. Here in the Scottish Parliament, we, as a community, will be no different—there will be friends and loved ones who are no longer with us. During the debate, we will no doubt hear about some of those people. For some colleagues in the chamber, they will include Gordon Aikman, whose loss is still very much felt in this place.
This debate is focused on housing and on how we better support those who are currently living with MND. On that front, I am sure that we will agree that much remains to be done. I thank the many members who signed my motion, allowing me to secure a debate on addressing the housing needs of people with motor neurone disease. I also thank MND Scotland for its powerful, sobering and challenging report “No time to lose”, which gathers much of the vital data and, importantly, captures the crucial lived experience and reality of the individuals who are living with MND and of their families.
My thanks also go to the families who have shared their stories. That includes Marie, whose husband Ian had MND; Beverley, whose husband Alan had MND; and Lynn, whose father-in-law Drew had MND. They all played pivotal roles in MND Scotland’s research, and they are in the public gallery this evening. I thank them for their attendance and their contribution. That is exactly where the debate must begin.
I will quote two examples of lived experience directly from the report. The first is one that I raised at First Minister’s question time a few months ago. Marie, whom I just mentioned, 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”.
The report notes that,
“11% of people affected by MND reported waiting more than a year for a wetroom”.
For some, the wait is longer than the time they have left—we should let that sink in. We must do better.
Among the local authorities that responded to MND Scotland,
“the average waiting time for wetrooms to be fitted in 2020-2021 was 158 days.”
However, one local authority reported an 80.7-day average, while another reported a 256-day average—that is three months in comparison with eight and a half months. Every local authority must strive to be better, but such regional variations highlight that improvements can surely be made by learning from best practice.
With regard to the requirement for a ramp, a family member of another MND suffer 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’ll not look into it until you can’t walk ... He asked how long the waiting list was and it was 9 months. So, they wanted us to wait 9 months from the point that he couldn’t get out”.
There has to be a better way to deal with adaptations like that. The approach 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, the report notes that
“one local authority said that they had an average waiting time of”
just
“23 days, while another local authority had an average waiting time of 475 days.”
Again, the regional variations are stark. It cannot be right for people to face a wait of 15-and-a-half months to have a ramp installed when the average prognosis for someone who is living with MND following diagnosis is just 18 months.
The MND Scotland report makes various recommendations regarding adaptations. Understandably, MND Scotland calls on the Scottish Government
“to require local authorities to formally fast-track applications for adaptations for people with MND”,
and it suggests that certain social security forms could 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 that there is a challenge in identifying and securing that resource, and we should not pretend otherwise. However, I very much hope that, with cross-party purpose, we can find a way forward.
We also need to ensure that, even if a property is not externally accessible, that cannot be used as a justification not to adapt it internally. MND Scotland has reported that that has happened far too often. It is hardly surprising that MND Scotland has called its report “No time to lose”. We, in this place, must do anything that we can to allow those who are living with MND to spend as much of the precious time that they have left making invaluable memories rather than having a prolonged fight to have their housing needs met.
The properties that we build today must be future proofed to ensure that they are fit for purpose in years to come. As our life circumstances change, including our health, we increasingly need housing stock that is both accessible and easily adaptable. That should be dealt with at the design-and-build stage. Trying to look for imperfect housing solutions to support accessibility both internally and externally, which can be difficult to resolve, must increasingly become a thing of the past, as must the need for people to move properties in the first place.
I know that Glasgow City Council has been keen to see such future proofing, having championed the Glasgow standard for developments, along with attracting public subsidy and seeking to ensure that 10 per cent of new properties are wheelchair accessible across all tenures. However, I note that I could not get data in relation to waiting times in Glasgow. I am looking to meet the council soon to discuss how we can work in partnership with it and with housing associations to get that data and drive improvements in that regard.
I also acknowledge the Scottish Government’s work in this area. The Scottish Government is investing around £16 billion to deliver 100,000 additional affordable homes by 2032, with a minimum of 70 per cent of those being for social rent. That offers a real opportunity to ensure that we future proof all new properties for families across all tenures. I know that the Scottish Government is keen to see that happen as it develops a common housing standard as part of its work on the strategy outlined in “Housing to 2040”.
In the meantime, however, there remain significant issues over agreed definitions of what constitutes an accessible home in the first place, as well as various other matters on which more must be done. Likewise, much more needs to be done to ensure that the various allocation policies of councils and various housing associations are better aligned and that the housing needs of those who are living with MND are more consistently taken into account within those policies. For my part, I will—as I have said—arrange to meet colleagues in Glasgow City Council to see what more they can do, in partnership with housing providers, to better meet the housing needs of those who are living with MND.
I know that the First Minister pledged that she would take the time to consider the various recommendations in the MND Scotland report “No time to lose”. I look forward to hearing the thoughts of colleagues on the issue this evening, as well as an update from the Cabinet Secretary for Social Justice, Housing and Local Government on how the issues in 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 reduced and the significant gaps in performance across local authorities narrowing. That needs to include fast tracking as required.
Similarly, we need meaningful comparisons in respect of how local authorities and housing associations use their allocation policies to support the housing needs of those who are living with MND. We also need to build homes that are fit for the future. I know that there is much good work going on, but I am conscious that, as the title of the report suggests, we have no time to wait.
For some of the people who are in the gallery today, time ran out for their loved ones. Together, across parties and across Parliament, we must do better. I thank them for taking the time to listen to my contribution here this evening.
17:19
I congratulate Bob Doris on securing this important debate and on his speech, which was very considered. I know that he feels strongly about the issues.
I thank MND Scotland for giving a presentation to the cross-party group on housing, which I am lucky to convene, about the report “No time to lose”. It was a powerful presentation indeed. I welcome representatives of MND Scotland and their guests to the public gallery.
As Bob Doris said, today is global MND awareness day. 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 them. We should not need to give the issue a special badge to do that.
The report raises a number of issues, and there are some stark statistics in it. There is a one-in-300 risk of a person getting MND in their lifetime. That sounds quite high to me. As Bob Doris said, the average life expectancy after diagnosis is just 18 months. That is a really short period of time. That tells us that, when someone is diagnosed, they need fast action. In too many parts of Scotland, we do not get that.
The research was carried out in 2021 and the report makes a number of points. There are extensive waiting times for adaptations. Waiting times for ramps are particularly lengthy. Across local authorities, the wait for getting something done to a person’s property was, on average, 149 days. One council reported an average wait of 256 days to fit a wet room, which is a vital facility, and 11 per cent of people with MND waited a year for a wet room.
People with MND face barriers to accessing adaptations. I will mention some figures from my own patch of North and South Lanarkshire. Bob Doris mentioned Marie Cartwright, who featured on the BBC news talking about her situation with her husband Ian. She stood outside her house and demonstrated how she had to throw buckets of water over Ian to wash him outside. It is heartbreaking that someone had to do that.
North Lanarkshire Council and South Lanarkshire Council were asked for their definitions of accessible housing. North Lanarkshire Council did not reference external documentation. South Lanarkshire Council referred to “Housing for Varying Needs: a design guide”. They were asked what percentage of their local authority or social housing stock is accessible or wheelchair accessible. North Lanarkshire Council said that wheelchair-accessible properties were only 0.45 per cent of council stock and 0.34 per cent of all social housing stock. That is not good enough. In South Lanarkshire Council, only 0.8 per cent of housing, including sheltered housing, is wheelchair accessible.
Those are really poor figures. I could go on, but I am aware that I am over my time. The figures across both councils on my patch are not good enough. The postcode lottery must end. Government and councils must work together to address the problem so that we do not have to put up with it any longer.
I call Mark Griffin, who joins us remotely.
17:24
I am grateful for the opportunity to speak in the debate on global MND awareness day. The work of MND Scotland in driving the issue of the availability of accessible housing up the agenda has been completely fantastic. Its report “No time to lose” has been vital in understanding the changes that are needed to secure accessible housing and adaptations that are fit for purpose ahead of the promised review of the “Housing for Varying Needs” design guide. I also thank Bob Doris for bringing the debate to the chamber so that we can all talk about the matter.
It is utterly disheartening that the report’s recommendations are not already a reality. The postcode lottery of support with which people with MND struggle just to get the housing that works for them while battling a rapidly progressing neurological illness, sometimes in their final months, is nothing short of cruelty. I hope that, when the Cabinet Secretary for Social Justice, Housing and Local Government speaks, she will confirm that the Government is working across Government and with partners to pursue the badly needed changes: fast-track applications; a common and consistent definition of accessible housing; a 10 per cent target for wheelchair-accessible new-build homes; and real, increased resources for adaptations across Scotland.
The research that MND Scotland conducted for the report is valuable for understanding the task. The Government’s statistics are not up to the job. Like the patchwork of policies, the data is inconsistent and requires a real overhaul if central Government wants to make our housing system truly accessible.
In Falkirk, in my region, MND Scotland found that just 1 per cent of stock is wheelchair accessible. There is only an aspiration to build accessible properties in new builds; there is no target and people who are terminally ill are not prioritised. The average wait in 2020-21 was 675 days, which is almost two years. Graham Simpson cited the situation in North and South Lanarkshire. Although it takes only 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. They mean that some people wait more than 18 months from diagnosis, which underlines how important the debate is.
Scottish Labour has gone into the past two elections committing to a target of 10 per cent of new homes being wheelchair accessible. I welcome the commitment that the Government made last week to deliver a target for all tenures, but I am interested to hear whether there have been any discussions across Government, particularly with the Minister for Public Finance, Planning and Community Wealth, so that we can secure that target in the national planning framework 4, which is making its way through Parliament at the moment, and, specifically, consider making the accessible housing target a requirement in the affordable housing supply programme. Some registered social landlords and councils up and down the country are making amazing contributions to building more accessible homes, but the policy requires national co-ordination. Addressing that through the affordable housing supply programme would be one way of doing it.
The idea of fast-track allocations and adaptations is excellent. It is commendable of MND Scotland to pursue it, building on the charity’s success in securing fast-tracked benefits for terminally ill people during the passage of the Social Security (Scotland) Act 2018. I am pleased to see the charity push that concept further. It is an absolute necessity for people with fast-progressing MND and is a policy area where local and national Government can make strides in making a real impact in supporting people. I am sure that we all agree that the last thing that someone who is terminally ill needs to do is battle with public sector bureaucracy.
The work that is done by MND Scotland and the recommendations that we have debated today will undoubtedly have benefits for all disabled people in Scotland, especially those who require wheelchair-accessible housing. I hope that the Government can undertake to ensure that more support comes in time for people with MND in Scotland.
17:30
I thank my colleague Bob Doris for securing this important debate. I recently met MND ScotIand to discuss its 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 sufferer Drew McCartney. I welcome Lynn to the public gallery.
At that meeting, I heard about how too many people with MND cannot get adaptations or an accessible home quickly enough because the systems are not designed for people who are living with a rapidly progressive terminal illness. I heard that waiting lists for adaptations and accessible housing in some local authorities are longer than the average life expectancy for somebody with MND, which—as we have heard—is approximately 18 months from diagnosis. As a consequence, people with the illness can be trapped in unsafe homes, sometimes in a single room, living without the dignity and care to which every person is entitled.
I heard at first hand from Lynn about the challenges that she and her family faced when they were trying to secure suitable accommodation for her father-in-law, Drew, after their home was deemed unsafe and about the immense anxiety and stress that that caused the family during the precious time that they had after Drew’s MND diagnosis. That experience is, regrettably, all too familiar.
The McCartneys resorted to residing in their towing holiday caravan without central heating or running hot water, outwith their local area and support network, for nearly a year—some members might remember that their story was on the news. They did so to provide Drew with the most accessible accommodation as quickly as they could, once it became apparent that, with many external and internal stairs, their home was no longer safe.
Drew and his wife Helen were eventually rehoused in a lovely accessible bungalow 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. Had that not happened, he might well have passed away while living in the caravan.
I cannot escape the valid points that my constituent and MND Scotland make with regard to the housing struggles that people who receive an MND diagnosis face. In particular, I am struck by the desperately short life expectancy of 18 months from diagnosis.
I drew the family’s plight to the cabinet secretary’s attention, and she advised me that “Housing to 2040” sets out our vision for housing in Scotland, with a route map to help us achieve that. The aim of the strategy is to ensure that everyone has a safe, good-quality and affordable home that meets their needs, in a place where they want to be. The strategy covers all aspects of housing and independent living for disabled people.
I am glad to note that actions that are being progressed include improvements to streamline and accelerate the adaptations system and that, as part of that work, the adaptations process will be made simpler and quicker and that there will be options for fast-tracking those with MND and other life-limiting illnesses. In addition, there will be a focus on promoting awareness and greater use of the scheme of assistance to fund adaptations, and consideration of passporting good practice in the allocations process, such as offering options to directly match people with MND and other life-limiting illnesses with suitable accommodation.
The review work will also consider the requirement for a consistent, nationally agreed definition of what an accessible home is and progress on delivering wheelchair housing targets. We have heard from members of all parties that there is currently a postcode lottery in support. We need to have an agreed definition. I am pleased that, as Mark Griffin has pointed out, our new adult disability payment from Social Security Scotland will ensure that those who are facing 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 East Ayrshire Council, who has agreed to work closely with MND Scotland to ensure that their next housing needs and demand assessment to inform the council’s local housing strategy will have MND fully in mind.
Those who are living with MND have no time to lose. It is incumbent on us, in this place, and on those in our council chambers to find solutions that will enable those people to spend what time they have left in pursuing what makes them happiest, with those whom they love the most.
I call Gillian Mackay, who joins us remotely.
17:34
I thank Bob Doris for bringing the debate to the Parliament. Last year, I spoke in his members’ business debate on MND awareness day, and I recognise his efforts to raise awareness of the condition.
As members have said, MND is a rapidly progressing condition and the average life expectancy is just 18 months from diagnosis. Diagnosis of MND can be devastating for people—and for their families, who have to come to terms with the fact that their loved one might lose the ability to walk, talk, eat, drink or breathe unaided, sometimes in a very short timeframe.
According to MND Scotland, most people will need adaptations to their home, such as hand rails, ramps and wet rooms. If such adaptations cannot be made, the person might need to move into another, more accessible home. However, as we heard, there are major issues with the availability of accessible housing. According to Inclusion Scotland, many disabled people do not live in a home that meets their needs, and 86,000 households that include a disabled person need an adaptation but do not have one.
For people with MND, waiting lists are often longer than life expectancy, which means that they spend the time that they have left with their family and friends fighting for accessible housing that meets their needs. Unfortunately, some people die before they get such housing.
In its report “No time to lose”, MND Scotland has emphasised the importance of early intervention. Too often, local authorities fit adaptations reactively. People are asked not to apply until they need them and are then faced with a long waiting list. The report suggests that adaptations that a person with MND will need, such as wet rooms, ramps and hand rails, could form part of forward planning from the point of diagnosis.
Although there is evidence of good practice in some local authorities, the current postcode lottery is such that some people are told that they are asking for adaptations too soon. Given the rapidly progressing nature of MND, there should be no such thing as “too soon”. MND Scotland is calling for improved understanding of the condition among people who work in local authorities. Poor understanding can mean that people with MND miss out on support to which they are entitled and can be traumatised by the experience of having to explain their condition over and over again to multiple key workers.
When good practice takes place, that is often because an individual practitioner, such as an occupational therapist, has a good understanding of the condition and how it progresses, and they have pushed for adaptations to be installed more quickly. The report found that some key workers, including occupational therapists, are doing great work in that regard and are excellent advocates for their patients. Increased awareness and understanding of MND will mean that more patients receive such levels of support.
Where adaptations cannot be made, people with MND might have to move to other accommodation. Leaving one’s home can be a stressful, emotional time, and we need to support people through the process when it is necessary.
MND Scotland’s report highlights that applying for an accessible home is often an arduous and time-consuming process. MND Scotland said:
“people are left spending time and energy fighting for homes that meet their accessibility needs and requirements. For many bereaved family members and carers, this meant there was less time spent with the person diagnosed. Instead, navigating forms and arguing for needs took up time that they did not have and took time away from doing things together and making memories.”
Support for people with MND who are applying for adaptations 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 who appreciate the rapidly progressing nature of the condition. That will help people to spend the time that they have left with their loved ones rather than fighting for housing that meets their needs.
17:39
I welcome global MND awareness day and thank Bob Doris for bringing this important debate to the Parliament today. I am pleased to be able to respond on behalf of the Government, and I will try to address as many points as I can.
This Parliament has a proud record of raising issues to do with MND and, more important, making progress on them. Gordon Aikman was a pivotal figure in doing that, and Bob Doris was quite right to pay tribute to his work.
The important contributions that we have heard today have all raised awareness of MND. We have also heard about the work of MND Scotland and, in particular, its significant report “No time to lose”. Members have highlighted the housing needs and aspirations of those who are diagnosed, alongside those of 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 Scotland, and her team to discuss the report’s recommendations. It was a helpful meeting—it certainly was from my perspective, and I hope that it was from theirs, too. I got some very useful feedback about the good practice around speedy access to adaptations and the practical approaches to finding suitable accessible homes for people with MND. It is important that we replicate that good practice; therefore, I plan to discuss the matter with the new Convention of Scottish Local Authorities team to ensure that we continue to support the spread of good practice across Scotland. I am clear that we need to make improvements—I have heard a number of members make that point this evening.
I am aware of complex cases in which people with profound mobility issues of whatever nature struggle to find suitable and accessible affordable housing. There are lessons to be learned from that experience so that our homes can fully support our changing needs and expectations.
The cabinet secretary says that she will be in discussions with COSLA, which is entirely right, because most of the recommendations in the report relate to councils. However, some of them are aimed at the Government, one of which is that the Scottish Government should
“establish a common and consistent definition of accessible housing.”
Will the cabinet secretary say which of the recommendations she will be able to take forward?
Many of them are already being worked on, and I am happy to provide updates. I will come on to one or two of the recommendations in a second.
On the point about being able to live independently, that is what we would want for ourselves and our loved ones. Living independently helps to ease the pressure on services and on family members. To support that, our homes should be accessible, flexible and, importantly, easily adapted to suit changing needs.
On what we are doing, “Housing to 2040” sets out our long-term vision for housing. The delivery of homes built to housing for varying needs guidance remains central to our affordable housing supply programme. We are reviewing the guidance to ensure that it continues to be ambitious and that it meets needs. That work will help to inform a new tenure-neutral housing standard for Scotland, which was included in the “Housing to 2040” strategy. Initial engagement with stakeholders is already under way. We aim to produce a draft standard next year and to progress legislation after that.
Really good work is taking place, but, when there are consultations and draft legislation before things become statutory, the process can be prolonged. Will the cabinet secretary be working in partnership with all housing providers, the construction sector and planning authorities, so that those draft standards, even though they might be altered, can be implemented at an early stage, even before they become statutory?
Yes, I am happy to do that. Mark Griffin made a point about using all the levers, such as NPF4, with regard to new housing developments and the importance of the affordable housing supply programme, which I will come back to in a second.
As members have recognised, local authorities are responsible for assessing the housing needs in their area, and that is quite right, because they know their local areas. They are also responsible for setting out how those needs will be met in their local housing strategies.
Our guidance for assisting councils in preparing their strategies ensures that specialist and accessible homes are central to the local housing planning and delivery process. Informed through 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 that is a case of us leading from the centre and working with local authorities to make those changes.
I am pleased to say that 28 of the 32 local authorities have identified wheelchair-accessible homes targets, and the remaining four are in the process of finalising targets. That is important, because increasing, the supply will support more choice and flexibility for people and, of course, it will also be fairer.
Backing up the affordable housing supply programme is the £3.6 billion that is being made available in the current parliamentary session. Housing providers have had their five-year allocations, so they know what they have. We need to ensure that the range of homes that are built with that investment meet everybody’s needs. We need local plans, we need the targets to be set on the basis of local need, and then, most important, we need those targets to be met.
However, we know that the majority of people in Scotland do not live in social housing. Therefore, 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 in the future. We know that there are issues with the way in which adaptations are being accessed and delivered locally, and we are considering how the process can be streamlined and made easier for people who need adaptations when they ask for them, not months later. It is really important to fast-track people when time is of the essence and people cannot wait for months for their adaptations to be done. We understand that and we need to make sure that action is taken to address it.
We also know that technology is now playing an increasingly important role in supporting independent living. The ability to remotely control household actions 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 the draft guidance on community equipment and housing adaptations will inform our work to improve the adaptations system.
In the meantime, through our housing strategic partners grant, we provide funding to organisations such as Housing Options Scotland and Care and Repair Scotland so that they can provide specialist advice to help people with disabilities to find the right house or make relevant adaptations so that they can live in a home that meets their needs. I encourage people to use those advice sources, because they are 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 adaptations system. Embedding the person at the centre of that is essential, and it will be essential for the new national care service as it goes forward. 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 these issues. I can tell members that Kevin Stewart, as the responsible minister, is acutely aware of that need.
You need to wind up, please.
I close by thanking those who have contributed examples and assure them that the Scottish Government will give full consideration to the report’s recommendations to improve the housing outcomes for those who are living with MND.
Meeting closed at 17:49.Air ais
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