Meeting of the Parliament (Hybrid)

Meeting date: Tuesday, June 22, 2021

Official Report 1107KB pdf

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MND Scotland (40th Anniversary)

While members are leaving the chamber, I remind them that social distancing measures are in place in the chamber and across the Holyrood campus. I ask members to take care to observe those measures, including when entering and exiting the chamber. Please use only the aisles and walkways to access your seats and when moving around the chamber.

The final item of business is a members’ business debate on motion S6M-00070, in the name of Bob Doris, on MND Scotland’s 40th anniversary. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes the 40th anniversary of MND Scotland, which was founded by John MacLeod in 1981 following his MND diagnosis; congratulates MND Scotland on its campaigning achievements and legislative changes agreed in the Parliament that have improved the lives of people with MND, including the late Gordon Aikman’s campaign to double the number of MND specialist nurses, the statutory provision of augmentative and alternative communication for people who have lost their voice, and, most recently, the effective fast-tracking of terminally ill people for Scottish social security benefits; notes the belief that there is still more to do in the Parliament, including the establishment of a national care service and the prioritisation of accessible housing, and further notes the view that Members should work together to continue this progress and help find a cure for this devastating terminal illness.

19:13  

I thank the members who signed my motion to secure a debate celebrating the 40th anniversary of MND Scotland, which was called the Scottish Motor Neurone Disease Association when it was founded in 1981. It is a privilege to lead the debate.

MND Scotland was founded by a 33-year-old police officer, John Macleod, and his wife, Peigi, after John had been diagnosed with motor neurone disease. He soon learned that health professionals had little knowledge of MND, which is a rapidly progressing and terminal neurological disease, and that support services were limited. In the year in which MND Scotland was founded, the first service was set up and research into the disease was funded. That was a hugely successful beginning for John Macleod, who was a remarkable and humble man. There have been many successes since, and I am sure that MND Scotland would want me to stress that there is much more to do—not least, ultimately, to find a cure for MND.

Over the years, MND has been blessed with inspiring campaigners who have faced the most adverse circumstances following their diagnoses. One such campaigner was Gordon Aikman, whom members of the Parliament, especially Labour colleagues, knew well. He was diagnosed with MND in May 2014 and launched the Gordon’s fightback campaign. He campaigned with great dignity and worked to secure from the Scottish Government a significant funded increase in MND nurses. Sadly, Gordon lost his battle with MND in 2017, but his legacy continues in many ways, including the Gordon Aikman scholarship, which is an annual research fund of £50,000 that is met by MND Scotland and the Scottish Government.

In 2014, MND Scotland launched a campaign highlighting the postcode lottery of personal care charging in Scotland for people who live with MND and other terminal conditions. MND Scotland won the support of the Scottish Government, and the Convention of Scottish Local Authorities subsequently updated guidance. Local authorities eventually complied, after the Scottish Government committed to changing the law if local authorities did not follow the COSLA guidance.

Another successful MND Scotland campaign was the “Let me speak” campaign, which highlighted the fact that people with MND had to buy their own communication equipment or rely on charity services. After hugely effective campaigning, an amendment was made to a health bill in Parliament, and a right to free communication aids from the national health service became law in 2016.

The success of MND Scotland as an effective and constructive campaigner continues to this day. With Marie Curie, MND Scotland helped to shape Scotland’s social security system to make it how we all want it to be. Together, the organisations successfully campaigned to ensure that the Social Security (Scotland) Act 2018 included the right for terminally ill people to be fast tracked for benefits on the basis of clinical judgment rather than on their having an estimated life expectancy of just six months.

Another remarkable campaigner is the rugby legend Doddie Weir, who was diagnosed with MND in 2017. He has bravely shared his story with the world and has set up the My Name’5 Doddie Foundation. He works with MND Scotland and others to improve the lives of people with MND, and to provide funding for research into a cure. In 2020, MND Scotland joined the My Name’5 Doddie Foundation and the MND Association to launch the “United to end MND” campaign, which calls on the United Kingdom Government to invest £50 million over five years in targeted MND research and a virtual centre of excellence. That campaign is on-going, and I am sure that members will all wish to support it. In 2021, Doddie’s foundation has donated an incredible £380,000 to MND Scotland’s grants programme to help families with the financial costs that are associated with the illness, including the costs of equipment, home adaptations, clothes and utility bills, or funding a holiday.

I mentioned at the start that there is still much to do. Indeed, MND Scotland recently launched the “It’s about time” campaign and a manifesto for the Scottish Parliament elections, which challenges all of us in Parliament about the sufficiency of social care, adaptions and accessible housing. As MND Scotland has put it, the harsh truth about MND is that those with the illness do not have the time to wait. People who are living with MND need support to ensure that the precious time that they have left is spent making memories with loved ones instead of battling for services that they urgently need.

I am pleased that the Scottish Government will develop a new national care service, for which MND Scotland has called. People who are living with terminal conditions must be involved in developing and shaping the service.

I am also pleased that the Scottish Government will seek to deliver an accessible housing standard in order to future proof new-build properties for people whose housing needs change, which can often happen dramatically over a short period. That should be linked to an accessible housing strategy—not just for new-build homes, but for the homes that people who are living with MND stay in right now. That is why MND Scotland has rightly called for a national accessible housing strategy. That must surely involve serious consideration of whether council and housing association adaptation budgets are sufficient, and a serious look at the speed at which assessments, including occupational therapy assessments, are made and adaptations secured.

The strategy must also look at the allocations policies and practices of social landlords, who at times struggle to provide adequately for people who are living with terminal conditions such as MND. It is not easy, but they must do better. I would very much welcome a meeting with the minister to explore some of the matters further.

This evening, we celebrate an incredible 40 years of achievement by MND Scotland. That has been secured through the efforts and campaigning of remarkable individuals and their families, often after an MND diagnosis. Sadly, of course, many of those people are no longer with us.

I thank everyone who has been associated with MND Scotland, past and present, for the past 40 years. I look forward to working with all MSPs in the months and years ahead—constructively, across Parliament and party—with MND Scotland and with all stakeholders to do the right thing for all those who live with terminal conditions, including MND. I look forward to hearing members’ contributions this evening.

I call Kenneth Gibson, to be followed by Craig Hoy, for speeches of up to four minutes, please.

19:20  

I congratulate my colleague Bob Doris for bringing this important issue to the chamber, and I congratulate, on its 40th anniversary, all those who work so hard at MND Scotland.

Motor neurone disease is a rapidly progressing terminal illness, and each case is unique. My Aunt Eileen, who was my dad’s older sister, died after suffering for two long years with MND. She lost the ability to walk, talk, eat and drink, and even to breathe unaided. It was a tragic and deeply upsetting end to a life well lived. Others with MND might experience changes in their behaviour, personality and how they think, which can affect their ability to plan tasks or communicate with others.

Around 400 people in Scotland live with MND. Their average life expectancy is just 18 months from diagnosis. For many of them, the work that is done by MND Scotland is invaluable. MND Scotland funds vital research, with the ultimate aims of improving the lives of those who are affected by the condition and eradicating the disease. Researchers work in partnership with organisations around the world to explore new drugs and to facilitate clinical trials.

Such trials bring us closer to a cure, and data collection through initiatives such as the Scottish MND register paint a clearer picture of who is suffering. The register was set up in 1989 to collect and store information about people with MND throughout Scotland, and it has been online since 2016. It holds information on more than 90 per cent of the people in Scotland who have the condition, and it helps through logging of accurate information, including on the gender, age and location of sufferers. That helps researchers to understand better the causes of MND and why they affect some people and not others. It can also be used to audit care standards across health boards and local authorities.

Although behavioural research might not bring us closer to a cure in the way that clinical research does, studying the human side of MND—for example, the phenomenon of apathy in sufferers—is also hugely beneficial in identifying ways of making it easier to live with MND.

MND Scotland has made incalculable contributions over its 40-year history in terms of research, campaigning for legislative change and providing practical information and advice for thousands of sufferers. Despite that excellent work, MND remains extremely difficult to diagnose, because in its early stages so few cases follow exactly the same pattern. The muscles that are affected, the progression of the illness through different groups of muscles, and even the way in which those muscles are affected vary so much among individuals that there is almost no way of predicting how any one case will develop.

There is no test to confirm positively whether someone has MND; rather, tests are used to rule out other possible conditions, until MND is eventually left as the likely diagnosis. That process can be long and understandably frustrating and upsetting for patients. The progressive nature of MND also makes diagnosis a lengthy and time-consuming process, because neurologists must witness the symptoms developing over time.

Despite all the research that has been done over the past 40 years, MND remains a cruel and devastating disease for those who suffer from it, as well as for their families. Therefore, the care and practical support that is provided by MND Scotland will be, for most sufferers, the most important aspect of its work.

MND Scotland offers advice and information about living with MND on a case-by-case basis, and it provides support to help to improve the quality of life of people who are affected. That support constitutes a huge range of services that include counselling, physical therapy and advocacy. Throughout the Covid-19 pandemic, it has given practical advice and information on shielding, staying safe and caring for people with MND. Above all, it has offered friendship and support from people who understand what patients and their families are going through.

MND Scotland’s ultimate aim is a world without MND. It is impossible to know how far we are from that goal but, in the meantime, the research, information and support that MND Scotland provides are vital for sufferers and their loved ones. I again commend Bob Doris’s motion and thank him for providing an opportunity to celebrate the work of such an important organisation.

Also, with just 35 minutes until kick-off, I would like to wish Scotland all the very best in the match against Croatia this evening.

Thank you, Mr Gibson. I suspect that that view is shared by everybody present. I call Craig Hoy, to be followed by Paul O’Kane. You have up to four minutes, Mr Hoy.

19:24  

Thank you, Presiding Officer. With 35 minutes to kick-off, I will take only four minutes. I thank Bob Doris for bringing forward this important debate.

In a call with MND Scotland yesterday, I learned more about how the organisation raises awareness and supports research into this terrible disease. Motor neurone disease involves a rapid and debilitating slide into paralysis. As Kenneth Gibson just said, there is no effective treatment or cure. Average life expectancy from diagnosis to death is, sadly, just 18 months.

MND is a disease that strikes at the middle aged, but it does not discriminate between the young and the old. As Bob Doris said, that is why it is vital that, from the point of diagnosis to the formation of a care plan to the adaptation of a sufferer’s home, the response is smooth and swift. Therefore, as we consider the creation of a national care service, we must ensure that the system can rapidly respond to the needs of patients.

Today, I would like to talk about the remarkable work of three Scottish men, all of whom were diagnosed with MND. The motion refers to Gordon Aikman. Sadly, Gordon died from MND in February 2017, aged just 31. After his diagnosis, he devoted his time to fundraising to find a cure for MND. His fightback campaign raised more than £550,000 for research, and he secured a doubling of MND nurses, which was a game changer for people with the condition. However, we should remember that finding treatment and a cure for MND will take a herculean effort. Campaigners are pressing the UK Government for up to £50 million to fund much-needed research.

Many of us will recall the images of Doddie Weir charging down the rugby pitch at Murrayfield. Like all MND sufferers, Doddie and his family continue to come to terms with the devastating turn of events since he was diagnosed with the condition in 2017. Since its inception, the My Name’5 Doddie Foundation has raised more than £5 million. The foundation supports medical research, and it has given more than £500,000 in grants to help MND sufferers.

I want to thank Rachael Hamilton MSP for her work with Doddie Weir in pursuing automatic access to the blue badge scheme for people who are living with MND. I implore the Cabinet Secretary for Net Zero, Energy and Transport, Michael Matheson, to ensure that the relevant work to bring that to a satisfactory conclusion is not delayed, so that we can deliver dignity and independence to those who are living with MND.

The third person I would like to talk about is Euan MacDonald, who was diagnosed with MND in 2003, at the age of just 29. In 2007, Euan founded the Euan MacDonald Centre for motor neurone disease research, in partnership with the University of Edinburgh. Along with his sister, Kiki, he created Euan’s Guide, which is a disabled access review website that is used to review, share and discover accessible places to visit.

While work continues to improve treatments and find a cure, it is important that people with MND, their family and their friends receive the best possible care and support, and I thank MND Scotland for everything that it does in that regard. The Scottish Conservatives support changes to social security benefits for people who are diagnosed with a terminal illness. A living wage for carers will help people who care for some of the most vulnerable in our society.

I recently visited Leuchie House National Respite Centre, which provides respite care for people who are living with long-term conditions, and I commend it for the work that it does.

As we consider the creation of a national care service, I make it clear from the outset that a one-size-fits-all approach to social care is unlikely to succeed. Any service that falls prey to a slow-moving bureaucracy or which removes localism from the core of care will likely fail MND sufferers. We all want to find a cure for this disease. We all want to get to a point where no doctor has to tell a man or a woman that they have this terminal condition—a disease that may cause them to lose the ability to walk, to talk, to eat, to drink or to breathe unaided.

As the motion highlights, we are committed to cross-party collaboration with members here at Holyrood and with MND Scotland and organisations across the UK and globally to help to find a cure for this terrible disease. That should be our goal; it is a fitting goal to mark the 40th anniversary of MND Scotland.

I commend MND Scotland for its work over four decades and commit to supporting its future efforts.

19:29  

I thank Bob Doris for securing the debate, and I congratulate and thank MND Scotland on its 40th anniversary. It has done 40 years of outstanding work in improving the lives of people who live with motor neurone disease, supporting families and campaigning for change.

We have already heard about the impact that MND has, not just on the people who are diagnosed with it but on the friends, families and loved ones of those who live with it. It has robbed many people of their future, and the Parliament must do all that it can to support people whom it affects.

We remember and pay tribute to the incredible individuals who have done much to advance the care of those with MND, and I will give specific mention to two people this evening. The first is Gordon Aikman. Like so many in the chamber, I had the great honour of knowing Gordon, in my case through the Scottish Labour Party. I fondly remember his warmth and generosity and the many great conversations and laughs that we had, particularly during the 2014 referendum campaign, when Gordon received his diagnosis.

Gordon was inspiring—the courageous way in which he faced his illness was one of the bravest things that I have ever seen. He became a ferocious campaigner for change, working with MND Scotland. He made people stop and think, and he made the Scottish Government invest and change policy. His legacy is every single person whose life has been made better due to more MND nurses, voice equipment or drug trials. I pay tribute to Gordon’s husband, Joe, and his friends, especially Lawrence Cowan, for continuing that work, which we will endeavour to support in any way in Parliament. We on the Labour benches are all proud of Gordon. He was the very best of us, and we miss him every single day.

As we have heard, further inspiration is found in Euan MacDonald and his father Donald. Euan’s drive to create the Euan MacDonald Centre at the University of Edinburgh, which focuses on finding a treatment for those living with MND, is inspiring. Beyond that, his drive to make a positive difference in the lives of disabled people is shown in the creation of Euan’s Guide, which is a website that makes it easier for disabled people to find great places to go to without having to worry about any accessibility issues there.

Due to the work of people such as Gordon and Euan, we have seen a growing public understanding of MND, how it affects people and how we can tackle it head on, and through the renewed drive to defeat MND, there has been scientific progress. Colleagues will be aware of the recent news of the scientific breakthrough by researchers at the Euan MacDonald research institute that could lead the way to the discovery of a cure. If that research bears fruit, we must all collectively step behind the science and ensure that it is supported in every way possible.

We must look to provide further support to those who live with MND in the here and now. Colleagues across the chamber will be aware of the on-going campaign, which leads on from the work of people such as Euan MacDonald, to ensure that more changing places are available for those who suffer from illnesses such as MND. There are too few changing places toilets available in Scotland. A lack of appropriate facilities is a barrier to disabled people, their families and those with lifelong conditions accessing simple things such as a day out or a holiday. I hope that colleagues will join me in creating a changing places cross-party group to consider some of the issues that directly impact the lives of people with MND every single day.

I praise the hard work of campaigners, including Angela Dulley, and people who live with MND, who have undertaken work on the matter already. I hope that members will join me in that work, and I ask them to get in touch with me if they can.

Once again, I pay tribute to the work of MND Scotland over the past 40 years. I honour the memory of those whom we have lost, and I commit to doing all that I can to fight for those living with MND, so that we can achieve the cure that we all desperately want to see.

19:33  

I welcome the opportunity to speak in the debate, and I congratulate Bob Doris on bringing it to the chamber, and on his excellent contribution. I also acknowledge and thank Christina McKelvie for the huge amount of work that she has put into raising awareness of MND, and for previously leading the debate in Parliament over a number of years.

My contribution will focus on the fantastic work of MND Scotland, both nationally and across my South Scotland region, the groundbreaking medical advances that have been made over the past 12 months, and on some points of interest in my region.

As Bob Doris said, this June marks 40 years since police officer John Macleod and his wife, Peigi, first launched MND Scotland from their living room, after John was diagnosed with motor neurone disease. Since then, many people—activists, healthcare professionals, researchers and those who have been diagnosed with MND—have helped to create a movement to fight back against MND through research and clinical trials. They have also helped to power MND Scotland’s life-changing support services through fundraising, donations and political action.

Across Scotland, including in my South Scotland region, MND Scotland provides support services for those who are living with MND, including through face-to-face support services, emergency financial grants, advocacy services and, during the current Covid-19 pandemic, video support and one-to-one phone calls. The charity’s work has been a lifeline for many, and I thank John and Peigi and all at MND Scotland, past and present, for the outstanding job that they do.

I highlight that Dumfries and Galloway in my South Scotland region has a particularly high prevalence of MND—higher than in other areas of Scotland. Across Dumfries and Galloway, an average of 15 people per 100,000 are diagnosed with MND, which compares with a United Kingdom average of five to seven people per 100,000. Figures show that the issue is particularly acute in Stranraer, where the statistics translate to 57 people per 100,000 being diagnosed with MND. I am thinking of my colleague the former MP Richard Arkless, his wife Anne and their family at this time, because both Richard and Anne have lost close members of their family to MND. No one knows exactly why MND is so prevalent in Dumfries and Galloway. MND has such a profound and devastating impact on the lives of so many, and there is a clear need for further research across the south-west of Scotland.

I welcome the significant advances in MND research over the past 12 months. Currently, almost everyone in Scotland who is living with MND is participating in MND Scotland’s new clinical trial, MND-SMART. Although typical clinical trials focus on a single drug, MND-SMART will allow more than one treatment to be tested at a time, which will give patients a higher chance of receiving an active treatment rather than a placebo. The project, which is being led by researchers at the Euan MacDonald Centre at the University of Edinburgh, has been developed to find effective medicines more quickly. The clinical trial will include as many people who have been diagnosed with MND as possible, regardless of how the disease or current treatments affect them.

The first trial is looking at amyotrophic lateral sclerosis and involves interleukin-2, which is used for treating some types of cancer. The study will focus on immune cells in the blood, which can influence the speed at which ALS progresses. I welcome the research and agree that it will improve the life chances of people who are living with MND in Scotland.

I wish MND Scotland a happy 40 years and every success as it moves forward. Again, I highlight the high levels of MND across Dumfries and Galloway, and I ask the minister to bear that in mind as policies move forward.

19:37  

I, too, thank Bob Doris for bringing the debate to the chamber. Yesterday was global MND awareness day, so I am grateful to have the opportunity to speak in the debate.

I pay tribute to MND Scotland and the late Gordon Aikman for their incredible efforts to secure better care for people with MND, and it would be remiss of me, as an avid Scotland rugby fan, not to mention Doddie Weir’s foundation. The Gordon’s fightback campaign raised more than £500,000 for MND Scotland to invest in vital research. As the motion states, it aimed to

“double the number of MND specialist nurses”,

guarantee MND patients a voice and outlaw care charges. Given the conversations that are taking place on the establishment of a national care service, it is right that we pay tribute to Gordon’s work.

One of the defining characteristics of motor neurone disease is how rapidly it progresses. As we have heard, the average life expectancy is just 18 months from diagnosis. That is why it is so important that people with MND can access the care and support that they need, when they need it. They cannot be placed on a waiting list, because they simply do not have the time to wait, but too many people do wait. People with MND are being forced to cope with their rapidly deteriorating health without the care that they need while statutory services struggle to meet demand.

The motion refers to the

“fast-tracking of terminally ill people for ... social security benefits”.

That would ensure that people with MND would not have to wait months to receive the benefits that they are entitled to. As the motion notes, however, we still have far to go before people with MND can access all the support that they need equally and fairly. MND Scotland is calling for people with MND to be fast tracked for access to housing and social care services so that they are not left without support for weeks, or even months, while their condition deteriorates.

Long waiting times can have a devastating impact on people with MND and on their loved ones. While people with MND are waiting to be allocated a care package, unpaid carers are often required to step in and care for them, with little or no support. That can impact on the physical and mental health of carers, who may struggle to cope with providing care that should be delivered by social care services. Too often, unpaid carers are used to fill gaps of care and, according to Carers Scotland, that has been exacerbated by the pandemic. Many carers have had to significantly increase the hours of care that they provide, and nearly 400,000 people have taken on a caring role for the first time. We need to recognise the value of unpaid carers and ensure that they have access to the training, equipment and respite breaks that they need. The Scottish Greens would also like to see the introduction of health checks and access to flexible healthcare appointments for unpaid carers.

The Scottish Greens want to see a national care service that is person centred and based on human rights—one that recognises the specific needs of individuals, including those with rapidly progressing conditions such as MND. MND Scotland is calling for a national care service that prioritises carers and recognises that, due to the rapid degenerative nature of the disease, people with MND require fast-tracked access to care and anticipatory care planning. People with MND often face further delays when trying to increase their care packages or gain access to 24-hour care as their condition deteriorates. Conversations about the level of care that individuals will need in the future must take place early, so that they do not face further waits for essential care when they begin to experience paralysis.

Early planning for housing adaptations must also take place. People with MND can wait months for adaptations, such as wet rooms and stair lifts, or be forced pay for them themselves. In 2021, it is unacceptable that people with a terminal illness are paying thousands of pounds for the adaptations that they need to help them to live with their condition. Adaptations can help people stay out of hospital and maintain their independence for longer, and help carers to look after them safely. Ensuring that people with MND are fast tracked for such adaptations and that the process is simplified will be an important step in reducing delays and improving care.

The motion states that we must “help find a cure” for MND, and that must be the ultimate goal. However, in the meantime, we must urgently improve MND care so that no one with this devastating illness is left waiting for the help that they need.

19:42  

I am very pleased to be able to respond on behalf of the Government as we mark MND Scotland’s 40th anniversary. I thank Bob Doris for lodging his important motion, and I join members in recognising the tremendous work that MND Scotland does in providing people with invaluable support and in driving efforts to find a cure for this devastating condition.

As we continue to reform delivery of health and social care, with priorities such as the national care service, MND Scotland will remain a key partner for us. Working in partnership will help us to ensure that we focus completely on what matters most to people with MND—people who look to us for care, support and treatment.

We whole-heartedly share the charity’s vision of a world without MND, and that is why we are currently investing £286,000 in clinical research projects at the University of Edinburgh that are focused on developing a drug pipeline for MND and on studying the progression of the condition. We recognise that innovation remains crucial to finding a cure for MND, and we have committed £423,000 to the motor neurone disease and multiple sclerosis PhD programme. That fund covers both conditions and is supporting six PhDs, and an additional seven PhDs are match funded by the participating universities.

Our work over the past few years has seen us deliver on pledges that were made to the Gordon’s fightback campaign—many members have mentioned Gordon Aikman this evening. That has included doubling the number of MND specialist nurses, ensuring faster access to social security benefits for those with terminal conditions and extending free personal care to people under the age of 65. We continue to further support Gordon’s legacy through the annual Gordon Aikman scholarship fund, and we aim to make progress on all the pledges that Gordon asked us to commit to.

One of the cruellest impacts of MND is that it robs people of their ability to speak. I am proud that, since 2018, national health service boards in Scotland have had a legal duty to provide communications equipment to people who cannot speak or who have difficulty speaking. It applies to adults and children of all care groups, and there is no comparable law anywhere else in the UK.

A number of members raised the issue of MND specialist nurses and their incredible value to sufferers. There are 15 such nurses across Scotland. That represents an approximate ratio of one nurse to 38 patients, which is excellent. Although some health boards share a nurse, funding is being sought to increase nursing hours to full time in Fife, Forth Valley and Dumfries and Galloway.

Due to the rapid progression of the disease, which many members have mentioned, MND nurses are best placed to deliver bespoke care and to anticipate care needs. They provide a vital service for individual sufferers. There is also an MND nurse consultant, who is co-funded by the Scottish Government, who oversees equity of assessment and MND care, as well as ensuring access to MND research in Scotland.

On the issue of affordable housing supply, the Scottish Government is absolutely committed to delivering housing that is fit for purpose, now and in the future. Many of us will want to grow old and frail in the places that we live in. In 2019-20, 95 per cent of the homes in the affordable housing supply met the basic requirements that are outlined in “Housing for Varying Needs: a design guide”. Since integration, health and social care partnerships have been responsible for the planning and delivery of adaptations. As is set out in “Housing to 2040”, we intend to streamline and accelerate the adaptations system, to take action to reduce the time that it takes to apply for and receive support, and to maximise the available resources. That is the issue on which Bob Doris asked for a meeting, and I would be more than happy to meet him.

We have a good track record of making progress with MND, but we also have a good track record of using quality improvement methodology in the health service in Scotland to tackle such issues and to make sure that delivery is as speedy, efficient and effective as we would hope that it would be.

Several members mentioned a number of heroic sufferers of MND, including Gordon Aikman, who was mentioned by almost all speakers in the debate, John Macleod, who started MND Scotland, Euan MacDonald and, of course, Doddie Weir. I am a massive Scottish rugby fan—I am not sure that, as the minister for sport, I should say that on the evening of such an important football fixture. Doddie has done incredible work to raise awareness of the condition and to share his experience. The previous health secretary met him in 2019 to discuss his experience of MND and to explore the quality of MND care.

It is important to pay tribute to all those people, who have used what little time has been left to them to improve the care of those who have followed them. It is quite humbling for all of us, as politicians, who might think that we make a massive difference, to see the incredible difference that those individuals have made in the 40 years of the existence of MND Scotland. They have certainly left Scotland in a better position to meet the needs of future sufferers.

I thank those members who have shared stories and experiences in their contributions this evening. I assure the chamber that we will continue to work with partners across health and social care, social security and housing to continue to achieve real transformational change for people with neurological conditions such as MND. The on-going progress that is being made on MND speaks to the value of cross-party working, and I whole-heartedly endorse Bob Doris’s statement that members should work together to continue that progress.

I congratulate MND Scotland on its 40th anniversary. I commend the dedication and commitment of its staff and supporters in making a difference every day to improve the quality of life for people who live with MND and their families and carers, and I hope that, one day, they will no longer be needed.

Meeting closed at 19:49.