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.
13:23