Meeting of the Parliament 22 February 2017
It is a special honour to take part in this debate and, at the outset, I inform members that the Scottish Conservatives will support the Government motion and the Labour amendment.
I start in the same vein as Shona Robison and Kezia Dugdale by paying tribute to Gordon Aikman, and offering my sincere condolences to his family. I should say early on that, regretfully, I never had the opportunity to meet Gordon, either during his time working in Parliament, on the better together campaign, or in more recent years when he worked for MND Scotland. I know that my colleague Miles Briggs knew Gordon and will offer more personal reflections on him as an individual.
Unlike other colleagues across the chamber, who I am sure will share wonderful memories of Gordon today, I do not have any such tales to tell. I am very sorry that I never met him, because he was clearly a quite remarkable person. However, those of us who did not know him in person knew him in other ways. First, we knew him in terms of the incredible work that he carried out for motor neurone disease. Secondly, we knew him through his writing, notably his column in The Sunday Times.
As many have noted, after his diagnosis, Gordon Aikman channelled his energy into an astonishing and dynamic campaign. His work for MND is well known but it bears repeating. His fundraising to support research, his raising awareness of the condition and his influencing the direction of Government policy were all major achievements.
Gordon raised more than £500,000 to support research into the condition. Let us think about that. He raised half a million pounds single-handedly. He effected real change and did so in a powerful and inspirational manner. We are lucky to be able to serve our constituents and be in a position to influence change, but when all is said and done, when we are long gone from this place and our contributions are measured and weighed up, I doubt whether any of us will achieve so much in such a short space of time as he did.
Just as striking were Gordon Aikman’s monthly columns for The Sunday Times, in which he documented his life with MND with searing honesty. He was never sentimental and he showed an endearing good humour. That was where many of us saw at first hand a quality of his that perhaps underscored much of his work—his courage, which shone through every word, phrase, and sentence.
Notwithstanding his terminal diagnosis, Gordon wrote freely of his fears and his feelings. He wrote of his fierce sense of independence and how he mourned its loss. He wrote of his everyday trials and the challenges that were thrown up by the decline in his faculties. Most powerfully of all, he wrote of his impending death, how often he thought about it, and how it might affect his loved ones. He wrote that death was no longer something that he feared and that death was what gives life meaning—it gave him a chance to “conclude” his life. I know that his husband, Joe Pike, said at Gordon’s funeral that Gordon taught him and others how to live. However, in his graceful writing, and in the example he set to strangers like me, I would venture that Gordon Aikman also taught us how to die.
I want to focus momentarily on motor neurone disease itself, and to highlight the challenges that are faced by people with MND and what needs to be done by the Scottish Government to ensure that everyone in Scotland who lives with the condition gets the right support, regardless of circumstance or location.
We know that there are more than 450 people in Scotland living with the disease and that, typically, there are more than 160 new cases of MND each year. What more can be done? Gordon’s fightback campaign has commendably stated that it will continue in Gordon’s memory, with the purpose of trying to transform care for people with MND and of funding a cure.
In its briefing for this debate, MND Scotland identifies two immediate areas of focus. It talks about the need for a fast-track benefits system, which I note that the cabinet secretary has accepted; and about the need for clinical trials to be brought to Scotland so that we can initiate a research revolution in MND here, bringing together academia, pharmaceutical companies and Government in order to realise that.
There are other points that the Government could consider. I ask the Scottish Government to see what it can do to move neurological conditions higher up the list of priorities of the new integration joint boards—recently, the cross-party group in the Scottish Parliament on MS learned that neurological conditions are some way down the pecking order for IJBs. In my view, they deserve to have greater prominence.
In closing, it is right to return to the man himself. Gordon wrote that, when our physical existence is over, we need not be, and that we can live on in the minds of those we love. In a similar vein, I can do no better than to end with the words of Aleksandr Solzhenitsyn, who wrote:
“Some are bound to die young. By dying young a person stays young in people’s memory. If he burns brightly before he dies, his brightness shines for all time.”