Motor Neurone Disease Global Awareness Day

– in the Scottish Parliament on 21st June 2017.

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Photo of Christine Grahame Christine Grahame Scottish National Party

Good afternoon. The first item of business is a members’ business debate on motion S5M-05761, in the name of Christina McKelvie, on motor neurone disease global awareness day. The debate will be concluded without any questions being put.

Motion debated,

That the Parliament notes the work of Motor Neurone Disease (MND) Scotland and the Global MND Awareness Day, which takes place on 21 June 2017; further notes the Parliamentary reception, which is sponsored by MND Scotland, taking place in the evening that day; greatly commends MND Scotland for its inspiring and life-changing work in searching for a cure for the disease; pays tribute to the late campaigner, Gordon Aikman, who raised over £600,000 in the pursuit of finding a cure; notes the recently introduced £25,000 Gordon Aikman Scholarship from the Scottish Government, which will fund individuals and professionals to develop practical improvements to the way care is provided to people with MND; believes that this fund will help people with MND in the Hamilton, Larkhall and Stonehouse constituency and throughout Scotland; reiterates its praise for the work of MND Scotland, and hopes that there is as great a support as possible for MND Scotland’s Global MND Awareness Day 2017.

Photo of Christina McKelvie Christina McKelvie Scottish National Party

Before I kick off on the substance of the debate, I give my grateful thanks to all the members from across the chamber who took the time to sign my motion so that I could bring it to the chamber today. I am sure that those members will also have the grateful thanks of the community that supports and looks after people with motor neurone disease.

As I rise today to mark motor neurone disease global awareness day, as part of motor neurone disease global awareness week, I thank all the members who have come to the chamber today to show their support. I also thank them for their continued support in helping the motor neurone disease community, and in fighting to find a cure.

I also warmly invite members to the parliamentary reception that I will host in the garden lobby of the Parliament building at 6 o’clock this evening, where we can hear directly from MND Scotland, its patrons and people whom it supports.

As you know, Presiding Officer, motor neurone disease is indiscriminate. It knows no borders, no class, no race and no gender. It does not discriminate based on income or status, nor does it hold judgment on rich or poor. It is unrelenting, it is terminal and it is cruel.

However, as events of the past week at Grenfell tower and in Finsbury Park have shown, in the face of cruelty, we find community. Motor neurone disease global awareness day is such community; it is a specific day that binds people together—a day on which we all stand united in awareness of motor neurone disease and, of course, united in search of a cure.

This awareness day does exactly what it sets out to do: it gets people talking about MND in order to spread awareness of the issue, to campaign and to raise money. That money is vital, as always. It is precisely why the Scottish Government listened to MND Scotland and why we listened to the late Gordon Aikman, who was a friend to many people in this chamber.

The Scottish Government pledged to invest more in research for motor neurone disease and, as far as I can see, it is beginning to deliver that. The Scottish Government pledged to double the number of motor neurone disease nurses, and we now seem to be in a position where that is being delivered too. The Scottish Government also pledged to give motor neurone disease patients a voice, and through the inspirational work of Professor Siddharthan Chandran—whom I have met many times—and his inspiring team at the Euan MacDonald centre for motor neurone disease research, it is delivering on giving motor neurone disease patients a literal voice as well as an holistic care approach.

We will not stop there, because we cannot stop there. The work of MND Scotland will guide the Government to further action. I know that it is pretty insistent on doing that—as are many of us in the chamber—for which I commend it.

Presiding Officer, as you know I have a long-standing relationship with MND Scotland. Its support, advice and advocacy not only for me, but for the 450 people in Scotland who currently live with MND, have been invaluable, not just to my family but to many families.

Let us make no mistake about it—people who live with MND do not have long, so we do not have long. It is a race against time, and until this moment, that race has only ever had one outcome. The average life expectancy after diagnosis is 14 months. I repeat: 14 months. That is all. In real terms, that is nothing. It is mere hours with loved ones, and brief moments with friends. Some might say that in Scotland and the United Kingdom it is the equivalent of at least three general elections. I say that just to try to bring a bit of lightness to the debate. That shows how short a time people have. Every moment of that time is utterly precious; every moment is accounted for.

Although we celebrate in the time that we have left, we must also make the reality better for those who must go through the MND journey. That journey has just been made a little bit easier. I am talking about a literal journey. In partnership with ScotRail, MND Scotland yesterday announced its “Journey to a cure”, which includes a pledge from ScotRail to increase accessibility of its trains for passengers living with MND and many other conditions.

We must also realise that MND is not just a neurological condition. Where possible, it is incumbent on us all to make that journey just a little bit more comfortable for those with MND and those who care for them. That is why I am reiterating my call to the Scottish Government—“Let’s Get Benefits Right” for MND patients. Let us grant lifetime welfare awards for people who live with lifelong terminal illnesses, because that lifetime is quite short.

Time is precious. For the 14 months from diagnosis, time is running out. It is a countdown—the clock is ticking. MND patients should not be available at the behest of Department for Work and Pensions officials: they should not have to rely on the mercy of individuals in the welfare system. Let us all, together, ensure that the precious moments that they have left on this earth are spent in happiness and dignity, and not in a state of destitution and worry about their welfare.

My relationship with MND has been well told in this chamber and more widely. Members are well-versed in it, and I make no apologies for that. For 10 years, I have been raising the issue in Parliament, and in those 10 years I have seen good advances.

For me, since the age of nine, MND has been an all-too-familiar disease in my family. Now, at the age of 21—maybe I am a bit older than 21—I have become much better versed in how MND affects other people’s families, too.

What do we do? We honour those people. We honour my dad, we honour my friend Owen McGhee, and we honour our friends and others’ friends, including Gordon Aikman, Euan MacDonald and Jimmy Johnstone. My family sends heartfelt best wishes to the family of Doddie Weir and we honour him and his brave decision to come out and tell us yesterday of his trials with MND.

How do we honour them? We do so with debates such as this one, with the reception that everyone is welcome to come to tonight, with skydiving, with fire walking, with zip sliding, and with everything else that MND Scotland seems to be able to get us all to do, including monthly charitable donations and contributions to research, development and support. All those things matter; all that help matters.

When our friends and their families lose their voices to MND, we honour them by raising our voices in this chamber and outwith it at any opportunity. We raise our voices higher to seek better systems and to seek support for that research, and to maintain hope—yes, hope—when for some people, all hope was gone. It is up to us to pick up the issue and run with it. We can do that together in Parliament, across this land and all around world on this global awareness day. Together, we can cure MND.

Photo of Kezia Dugdale Kezia Dugdale Labour

I remind members of my entry in the register of members’ interests stating that I give all my external earnings to MND Scotland. I thank Christina McKelvie very much indeed for hosting today’s debate. As she mentioned, she has a long-standing, passionate interest in the disease and a long-standing commitment to finding a cure for it.

Christina McKelvie referenced the news that we heard today about Doddie Weir, that great Scotland giant of the rugby field, who faces his own MND diagnosis. She mentioned that this is not the first sports star we have heard of who has the condition. We can think of Fernando Ricksen, Jimmy Johnstone, Joost van der Westhuizen—the South African rugby player who used to torment Scotland on the rugby field—and even Lou Gehrig, who was an American baseball player in the 1920s who got the disease. For many years in America, MND or amyotrophic lateral sclerosis—ALS—was called Lou Gehrig’s disease in his memory.

There is undoubtedly a link between MND and sport—at least, we think that there is; we do not know, because we do not really know enough about MND and why people get it. That is why we have to do more research to find out about the disease and to find a cure.

We think that there is a link between getting head and neck injuries and getting MND, but again, we do not know, which is why we need more research money. We think that 5 to 10 per cent of people who get MND get it genetically and about 90 per cent of people get it through environmental factors, but again, we do not know.

My dear friend Gordon Aikman was an international gymnast for Scotland. He could have been one of the sports stars who get the disease because of their history of competitive sport, but we do not know, and he will never know.

The last time I saw Gordon was at the Euan MacDonald centre, when I was visiting to see much of the work that I know Christina McKelvie has seen over the years. Gordon and I were shown fantastic new research that the University of Edinburgh had done using zebrafish. Those tiny little fish can grow motor neurone cells that regenerate themselves; in humans, those cells affect muscle tissue, speech and many other functions. Experts at Edinburgh university now think that they can produce drugs that will help zebrafish to multiply those cells in their bodies. Once the experts have cracked that, they will be able to use that technology in humans and perhaps get humans to regenerate their own motor neurone cells, which could lead to finding a cure for the disease.

It was truly inspirational to see that work, which has global and world-leading potential, but it is poorly funded. Three countries in the world could find a cure for motor neurone disease: Canada, Israel and Scotland. Would it not be fantastic if Scotland set a national ambition to be the country that finds the cure to motor neurone disease? I appeal to the Scottish Government to take on that idea.

When I left the Euan MacDonald centre, I kissed Gordon goodbye and said that I would see him later, but I never did. For as long as we debate motor neurone disease in this chamber, I will speak in his memory and say some of the things that he would want us to talk about.

Christina McKelvie touched on my next point. We cannot ignore the fact that today is the day of the Queen’s speech, which will contain further cuts to the social security system that we collectively built as a nation. One of the things that the Tories will cut is the Motability scheme, which Gordon used. He got a Jeep—a high car that he could climb into without having to move his legs too much. It was adapted so that he could use the gear stick, and it had additional sensors that acted faster for him whenever there was a danger, so that he could respond in time. That car gave him the freedom and independence that he needed for three months when he was still able to drive. I am not sure that he would get that today under the Tories, and I sincerely regret that.

We have powers in this place over personal independence payments, disability living allowance, attendance allowance and carers allowance. We have the power to guarantee automatic entitlement to benefits. Like Christina McKelvie, I very much hope that the Scottish Parliament will grab that opportunity and run with it.

Today is MND global awareness day. We must remind ourselves why we have to keep explaining what MND is and keep telling its story. As Christina McKelvie said, we do that because many people who get MND die so quickly. It is not commercially viable to spend money on researching the disease because people die too quickly to get the drugs that are needed to cure it. That is why each and every one of us who has been affected by MND needs to use that experience to speak up about the disease and aspire to find a cure here in Scotland.

Photo of Clare Haughey Clare Haughey Scottish National Party

I thank Christina McKelvie for securing the debate, which allows us the opportunity to recognise the important and inspiring work that MND Scotland is doing. There can be no doubt that Gordon Aikman’s brave and very public battle with this progressive condition, while at the same time fundraising more than £600,000 for MND research, raised public and political awareness of the disease and of the profound effect that it has on patients and their families.

Gordon was full of praise for his specialist nurses and carers and, through his Gordon’s fightback campaign, he succeeded in securing his primary objective of getting the Scottish Government to agree to double the number of MND specialist nurses in Scotland. Those nurses are now paid by the national health service, which allows the charitable donations through which MND nurses were previously paid to be channelled into better support and care and into research for a cure.

We can only imagine how devastating an MND diagnosis is for the individual who receives it. Learning about how the condition progressively impacts all physical functions will be terrifying, and having to come to terms with experiencing a loss of mobility—and indeed with the inability to move at all—is unimaginable. They must understand that intimate personal care will be required, and they must fear that the time will come when communication may come down to electronic aids, signals or even just the blink of an eye. They must understand that intensive support and loss of independence will be inevitable. Then there is the realisation of the impact that that will have on family and friends, who have to witness it all, and the absolute knowledge that they cannot do anything to stop this progressive disease.

The diagnosis has an enormous impact on the lives and wellbeing of the patient’s family and loved ones. There is no certainty about the future, as patients experience the progression of the disease differently and at different rates of acceleration.

Twenty-four-hour care will always be inevitable, and the financial implications of loss of earnings will bring added stress to already unimaginable suffering. Because people face a future of no certainty, psychological and emotional support are essential for the patient and their loved ones. MND Scotland offers important counselling services and complementary therapies for patients and their families. In addition to the excellent care that NHS healthcare professionals give, MND Scotland provides a wide range of other support for patients and their families to help them to cope not only with the physical aspects of the condition—through things such as equipment loan services—but with practical aspects such as welfare and benefits.

Although good progress has been made on several of the objectives that are promoted by the Gordon’s fightback campaign, work is still required in other areas. One of those is the fast tracking of benefits. It is simply not acceptable that people with terminal diagnoses of illnesses such as MND should have to wait long periods before receiving the Department for Work and Pensions benefit awards that they are due and urgently require. I therefore welcome the work that is being done on the Scottish Government’s behalf by the disability and carers benefits expert advisory group to look at automatic and lifetime awards for those with terminal conditions.

With our new powers over social security, the Scottish Government wants to stop the revolving door of assessments and the stress and anxiety that that brings for those with long-term illnesses, disabilities or conditions. In building a new Scottish social security system that is based on dignity and respect, the Government is committed to introducing long-term awards.

As we have heard, MND currently has no cure. Research is vital to help to find a cure and to improve the lives of those who are living with MND. On MND global awareness day, it is right for us to commend the work of MND Scotland. This week, it announced a further £583,000 of MND Scotland-funded research into this devastating illness. It is right, too, that members across the chamber should support the efforts of MND Scotland to increase research investment across the United Kingdom, to bring more clinical trials to Scotland and to ensure that, as a society, we strive to provide a sensitive and dignified support system for those who are living and coping with motor neurone disease.

Photo of Donald Cameron Donald Cameron Conservative

I am delighted to contribute to the debate and I thank Christina McKelvie for bringing it to the chamber. Although we debated issues around motor neurone disease back in February, when the Parliament commemorated the life and achievements of Gordon Aikman, it is crucial that we keep such matters in the public domain. Pressure and momentum must be maintained. I commend the will of parliamentarians across the chamber to keep motor neurone disease to the fore.

The debate is particularly poignant after we learned in the news yesterday that one of Scotland’s rugby legends, Doddie Weir, announced that he has been diagnosed with MND. Doddie Weir was one of my childhood heroes. Many rugby fans and others will remember his athletic prowess as he towered above others in the line-out. He was a true talisman in the Scottish rugby teams of the mid-1990s. This will understandably be an extremely hard time for his family and friends, but we can all be heartened by his commitment to spend as much time as possible supporting research of the condition through his support of the Euan MacDonald centre, which members have mentioned, and by raising awareness and funds.

As Clare Haughey mentioned, the diagnosis of such a condition must be a devastating hammer blow, so it is truly incredible for someone to have the ability to see light at the end of the tunnel and go out make the best of the situation. What is especially inspiring about Doddie Weir is that he revealed his diagnosis yesterday in order to mark global MND awareness day and to raise public awareness. As the motion states, today is that day.

I commend the Scottish Government for establishing the Gordon Aikman scholarship, which the Cabinet Secretary for Health and Sport announced in February. As she noted at the time, the scholarship

“will fund professionals or individuals with knowledge of MND to take forward research into new and better ways of caring for people with the condition.”—[

Official Report

, 22 February 2017; c 33.]

I think that I am right in saying that MND Scotland has matched that funding, which is wonderful and welcome news.

In my view, supporting research is one of the most important ways in which we can support people with MND. The short-term aim is to extend life expectancy and, with that, allow people greater personal freedom and dignity. Crucially, investment in research will assist with the long-term aim of finding a cure.

With that in mind, I commend the work of MND Scotland and its focus on research. I welcome the news that it is committing a further £583,000 to research projects that will look at several things, including protecting motor neurones, investigating issues around apathy in MND, links between metabolism and MND, and how gene mutations react with proteins that help to protect motor neurones.

I am particularly intrigued by the research into apathy, because even those who have taken on Herculean projects to support MND research while living with the condition will have days when they are too mentally and physically fatigued to do anything at all and lack motivation. The aim of the research is to assess the real-life impact of specific types of apathy on people living with MND and their families, through the course of their illness.

As MND Scotland notes, that area has not yet been explored to any great extent and

“such demotivational problems are rarely assessed in clinical practice”.

Hopefully, such research will help to guide intervention and management of symptoms so as to improve the lives and care of people living with MND and their families. That is just one snapshot of the important work that is going into MND research. I know that other members will go into more detail about other areas.

It is important that members of the Scottish Parliament continue to talk about MND and the work of the many charities and individuals involved in research, fundraising and awareness. I once again commend the efforts of organisations such as MND Scotland that work day in, day out, to improve the lives of those with MND and to find treatments so that, eventually, the condition can be cured.

Photo of Monica Lennon Monica Lennon Labour

I give heartfelt thanks to Christina McKelvie for bringing this important issue to the chamber and for all her tireless campaigning over many years.

Motor neurone disease has a devastating and sudden impact on the lives of those who are diagnosed with it, and the lives of those who love them. Being diagnosed with MND—with its cause unknown and there still being no cure—is a truly life-altering event. The uncertainty of the illness, its pace, and the different way in which it affects different individuals, in addition to the finality of the diagnosis, all contribute to what makes MND so difficult to cope with. The all-too-quick deterioration from being able-bodied and healthy to succumbing to MND and then being unable to walk, or even speak, is a cruel and difficult experience for anyone.

Gordon Aikman—we are all familiar with his name—was incredibly brave in the final years of his life following his diagnosis with MND. His relentless pursuit of a cure and the fundraising that has resulted from his efforts are a fitting legacy and a testament to his character.

I congratulate MND Scotland on its tireless campaigning work, and I add my good wishes to everyone who is looking forward to the reception that will be hosted by MND Scotland in the Parliament this evening.

I will use the rest of my speech to talk about someone I know who has MND—a constituent of mine whose family I have known for many years, and who I have had the fortune of being reacquainted with over the last few months, for perhaps the most unfortunate of reasons.

Frank Lyons, who lives in Hamilton in South Lanarkshire, was diagnosed with MND in September 2014. Just months after Frank took part in the famous ice-bucket challenge to raise awareness of the condition, he started experiencing difficulty swallowing and soon after began to find difficulty with his speech. He was in Australia at the time, where he had lived and worked with his wife Rae since 2007. When he first went to a doctor, Frank was initially told he had had a minor stroke and Rae thought that perhaps he had multiple sclerosis or Parkinson’s.

It was almost another year before Frank received a formal diagnosis of MND, just before he was due to return to Scotland for a family wedding. He puts the length of time between his symptoms first appearing and his receiving a formal diagnosis down to the fact that MND appeared to be less well known about in Australia. At first, navigating the nuances of a foreign healthcare system was another barrier to the Lyons family. Confused by the difference between public and private healthcare and unsure about where to go or who to ask for help, Frank’s wife said that their private healthcare often felt like they were paying more for no extra care or service.

To begin with, they always had different people coming to their home, with no consistency or continuity of care. That made a difficult situation all the more challenging. Diagnosed with a life-limiting condition in a foreign country with few friends or family to support him, the very least that Frank needed was someone in his healthcare team who could oversee his care. Once he had a permanent point of contact who visited once a month, things got better. That experience of the Lyons family underlines how important specialist MND support is; no matter where we are in the world, continuity of care brings peace of mind, knowing that there is one specialist point of contact who can direct specialist care.

Gordon Aikman’s success in doubling the number of MND nurses in Scotland and paying them from the public purse simply cannot be praised enough. The difference that that will make to people like Frank Lyons across the country and in the years to come is simply immeasurable.

Frank has now returned to live in Hamilton, where he has been attending Kilbryde Hospice, which serves South Lanarkshire, as a day patient over the past year. Like Gordon, Frank has not been slowed down by MND. Although he has lost the use of his voice, he has been campaigning hard to expand in-patient provision at the hospice, sending countless emails and getting the backing of the local paper, the

East Kilbride News

, for his campaign. The work of the staff at Kilbryde Hospice has given Frank and Rae a better understanding of the condition. He is certain that Kilbryde is where he wants to stay towards the end of his illness, should he require in-patient care. Frank is an inspiration, and I hope that he will be successful in his wish to remain at Kilbryde Hospice at the end of his illness.

Support for the work of campaigners such as Frank Lyons and of MND Scotland to improve the lives of those with the condition—with automatic entitlement and lifetime awards of benefits and free social care provision for all who need it—has to be the priority for us in the Scottish Parliament.

Photo of Brian Whittle Brian Whittle Conservative

I thank Christina McKelvie for bringing this debate to the chamber.

Why are we here today? Members’ business debates often present Holyrood at its best. The chamber gives us a powerful platform to speak not only for ourselves, but for others. Today’s debate will be watched online, our speeches will be entered into the public record and journalists will report what was said through social media. All that will help to spread knowledge and awareness of important issues that should not be obscured by the fog of party politics.

Scotland is arguably more aware of the realities of motor neurone disease than most, thanks in no small part to the work of Gordon Aikman. I am sure that my colleagues across the chamber will agree that one of the most important legacies of his campaign—Gordon’s fightback—is the greater awareness of MND not only among parliamentarians but among the public at large.

The desire to spread awareness about MND that Gordon Aikman embodied continues today. Yesterday, my friend—[

Interruption

.] He is going to call me such a big jessie.

The Deputy Presiding Officer:

That is the last thing that you are, Mr Whittle.

Photo of Brian Whittle Brian Whittle Conservative

My friend, the former Lions and Scotland rugby international Doddie Weir announced yesterday that he has motor neurone disease. He is going to call me a big jessie—or a small jessie, as he is the only man who could get away with calling me “wee man”. I was supposed to be playing golf with him this weekend—he plays golf like a giraffe going for a drink.

Doddie’s announcement highlights the indiscriminate nature of this horrible disease, and his decision to speak out and commit to raising awareness about the condition is admirable. I intend to help him to do that in any way that I can. MND sufferers such as Doddie and Gordon who choose to speak out about their condition give us an incredible insight into the world of an MND patient.

They say that a problem shared is a problem halved. It must surely follow that the more widely a problem is shared, the more manageable that problem becomes. Events such as motor neurone disease global awareness day are vital if we are to address the complex problems of tackling diseases like MND and of how to support patients and work to find a cure.

I welcome the Scottish Government’s creation of the Gordon Aikman scholarship as part of this country’s efforts to make life easier for MND patients. If the scholarship proves successful in generating innovative new ways to improve care for MND patients, I hope that we might see support for similar initiatives for other life-changing conditions such as Huntington’s, MS or dementia.

In addition to improving our understanding, today gives us the opportunity to recognise the work that is already being done across Scotland, and the world, to help people with MND.

To MND nurses, researchers and campaigners, I say thank you. Perhaps the biggest thanks should go to the thousands of people across Scotland who go out of their way to raise funds for causes such as MND Scotland. Their willingness to run marathons, pour freezing water over their heads or to do anything else to raise funds should never be underestimated or taken for granted. To each and every one of them, I say thank you. Most of those people will go through life never meeting anyone with MND, but that has not stopped them. Those people do not need to know someone with MND to understand the effect that it has on those who have that disease, and they do not need to have someone in their family with MND to understand the heartache of watching a loved one’s body fail, even if their mind remains strong. They do not need those things because they have awareness, and that awareness is thanks to the work of MND Scotland, Gordon Aikman and others who have chosen to speak out about their battles with MND.

One of the oldest axioms in politics is that knowledge is power. That is true not only in politics, because the more of us who have knowledge of conditions such as MND, the more power we have to do something about it. That is why today is important, that is why the work of MND Scotland is important and it is why the Gordon’s fightback campaign makes such a difference. By sharing their knowledge of MND, people give us the power to change things.

I began by asking why we are here today. We are here to change things. It is only by talking about MND and conditions like it that we can change things for the better. Winston Churchill said:

“If you have an important point to make, don’t try to be subtle or clever. Use a pile driver. Hit the point once. Then come back and hit it again. Then hit it a third time—a tremendous whack.”

I intend to keep hammering away until things get better, and I hope that colleagues across the chamber will do the same.

Photo of Maureen Watt Maureen Watt Scottish National Party

I am pleased to be able to respond on behalf of the Government this afternoon as we mark MND awareness week and MND global awareness day. I thank Christina McKelvie for moving the motion and securing this important debate. Since entering Parliament in 2007, Christina McKelvie has tirelessly championed MND awareness, as the result of her father being diagnosed with the disease.

In the speeches that we have heard from across the parties there have been powerful and personal stories of how MND touches the lives of many families across the country. As Brian Whittle mentioned, just yesterday, his friend Doddie Weir revealed that he had been diagnosed with MND. I am sure that the thoughts and prayers of all of us are with him and his family.

So many members in this chamber are knowledgeable about MND that I think we should be able to crack it, as Kezia Dugdale so clearly said that we should be able to do. It is clear from the remarks of many members how much of an inspiration the late Gordon Aikman was, and how great an impact his work with MND Scotland has had in transforming care for people living with the condition.

As others have said, the Gordon’s fightback campaign has raised in excess of £600,000 for MND Scotland. That is an exceptional sum that will be invested in research that is aimed at finding a cure for MND. This Government is proud to have worked with Gordon and MND Scotland on the hugely successful campaign, and we are honoured to have played our part in helping to achieve some goals that he set not for his own sake but to make life better for others. We have invested an extra £2.5 million annually in the specialist nursing and care fund. As Clare Haughey said, that has more than doubled the number of MND specialist nurses across the country and has ensured that all of them are now funded by the NHS.

Photo of Rachael Hamilton Rachael Hamilton Conservative

Monica Lennon made an important point about specialist nursing care. NHS Borders accesses MND nurses from NHS Lothian, and there are 14 MND patients in the NHS Borders area just now. Adding the NHS Borders patient numbers to those in NHS Lothian results in a ratio of one MND nurse to every 1.36 patients. Can the minister tell us whether there are any plans to lower that ratio to ensure that patients with MND receive the best possible care?

Photo of Maureen Watt Maureen Watt Scottish National Party

In relation to numbers, each and every health board will have specialists, and cross-border health board working can ensure that we have access to a larger body of nurses. That is important. On the question the member asked, I will try to find out whether there are any specific plans to reduce the ratio and, indeed, whether that is necessary.

As I said, we have doubled the number of MND specialist nurses across the country and ensured that they are all funded by the NHS. We have legislated to give a statutory right to communication equipment and support in order to give a voice to people who do not have a voice or are at risk of losing theirs. We are also paying a real living wage to social care workers, which was another key aspect of the campaign.

We have provided local authorities with £6 million in 2016-17 to increase the thresholds at which people start to pay for their care and, working with the Convention of Scottish Local Authorities, we have already ensured that no one in the last six months of a terminal illness pays for the care that they receive at home. As we have set out in both our manifesto and our programme for government, we are carrying out a feasibility study on extending free personal care to people under the age of 65, regardless of their medical conditions. The findings of that study will be given to ministers at the end of the summer.

Significantly, we are investing in MND research, which we all know was hugely important to Gordon. Over the next three years there will be six newly funded MND-dedicated PhD posts in our universities as a result of Gordon’s campaign. Kezia Dugdale and others will want to know that we are working with the chief scientist office to hold an MND research symposium later this year, bringing together experts committed to finding a cure.

Members may also recall that during the debate following Gordon’s passing in February, the Cabinet Secretary for Health and Sport announced that we would create the Gordon Aikman scholarship programme. That programme will commemorate Gordon’s contribution to improving the provision of specialist care and research for those with MND. I am pleased to confirm that the scholarship, which is a joint partnership with MND Scotland, is now open for applications. Furthermore, thanks to MND Scotland matching the Scottish Government funding of £25,000, the scholarship will be doubled to £50,000.

The fund will support individuals and professionals to develop, implement and evaluate practical interventions to improve the quality of life for people who are affected by the condition. The scholarships will continue to drive forward the improvements to MND care that Gordon had kick-started in Scotland and they will be a fitting tribute to a truly inspirational person. The scholarship scheme will be administered by the nursing, midwifery and allied health professions research unit at the University of Stirling. I am especially committed to learning from those affected by MND and a significant amount of the funding will be invested in a project led by people with MND or their carers. I want to make sure that the momentum that Gordon created and the good work that followed continues to be taken forward.

Christina McKelvie mentioned social security, and I underline our commitment that when the powers for disability benefits transfer to this Parliament, a fast-track system will be in place for those who are terminally ill so that payments can get to those people as soon as possible. In building our own social security system in Scotland we have committed to a rights-based approach that will exemplify the founding principles of dignity, fairness and respect. We will do that from the ground up, basing our policy, design and delivery decisions on the lived experience of those currently using the UK benefit system, those with expertise in providing advice and support and those with experience in delivery.

The recruitment of more than 2,000 volunteers to our experience panels will help us to design and test our communication channels, application processes, appeals framework, decision making, assessment process and information technology systems. We agreed to on-going engagement with MND Scotland to ensure that it is involved in the development of our policies on disability benefits eligibility and assessment, particularly in relation to award duration and automatic entitlement.

I pay tribute to the work of MND Scotland and the tireless efforts of the late Gordon Aikman. I give my commitment that we will continue to work with MND Scotland and others to ensure that Gordon’s legacy of lasting, practical improvement in the lives of people with MND is delivered.

The Deputy Presiding Officer:

I thank members for their very personal and heartfelt contributions. As Mr Whittle said, they show the Parliament to the public in a different light.

13:55 Meeting suspended.

14:00 On resuming—