Meeting of the Parliament 22 February 2017
I, too, thank the Government for bringing forward this debate and for giving Parliament the opportunity to mark Gordon Aikman’s truly outstanding contribution. I send our love and thoughts to his husband, Joe, and his friends and family who are with us in the chamber.
I became friends with Gordon over 12 years ago when I started to work for a fellow North East Scotland MSP to Claire Baker’s husband, Richard. Gordon’s charisma and loving, cheeky and vibrant personality were infectious to anyone who met him. From listening to Claire’s moving tribute and speaking to many of Gordon’s other friends and political acquaintances at his funeral on Saturday, I know that it was that joie de vivre that made him such a wonderful person to know and be around.
The last time I met up with Gordon was at a silent auction in Stockbridge to raise funds for MND Scotland. Apart from trying to force me to bid for a hideous orange finger-knitted hat—luckily, I was outbid on that—he told his personal story to around 200 people who had gathered there, most of whom he did not know.
Gordon began his speech with just four words: “I’m dying—and fast.” There was not a dry eye in the room after he told his personal story, and it left everyone with the will to support Gordon and his campaigns. As with every time Gordon spoke about his MND, he was an inspiration to everyone who met him that evening.
As has been mentioned, Gordon knew how political decisions and the prioritisation by Government ministers of issues can transform people’s lives. Perhaps it is because MND came to take away Gordon’s life that so many people in Scotland with MND today, and for as long as there is no cure, will owe the advancement in research and improvement in services and care for MND to Gordon’s passionate and determined campaigning.
When I met Gordon in Parliament after the election to discuss some of his concerns surrounding the changes to home ventilation services in NHS Lothian, it was clear just how passionate he was to see and support improvements to care and nursing teams across Scotland for all life-limiting conditions. I had hoped to meet Gordon to discuss the Frank’s law campaign—sadly that meeting will not take place.
However, as Kezia Dugdale and Anas Sarwar have said, I know Gordon would not forgive me for letting the opportunity of this debate to pass without raising the plight of those individuals in our country who are under the age of 65 and require personal care for MND, dementia, Parkinson’s disease, MS and cancer.
Shockingly, in some parts of Scotland, terminally ill patients under the age of 65 are being charged for the help that they need with basic things such as washing, dressing and feeding themselves. That is despite clear guidance to local authorities that terminally ill patients should not be charged for personal care. As Christina McKelvie has mentioned, when a person is on their deathbed, worries about where they will find the money to pay for the vital care that they need are the last thing that they or their loved ones should have on their minds.
I very much welcome the fact that the cabinet secretary has agreed that the feasibility study on extending free personal care to people under 65 who have been diagnosed with dementia will be widened to include all medical conditions. I look forward to the study being completed and published in the summer. We on the Conservative benches will work positively with ministers, as I know will other parties in the chamber, to take forward the policies that we need to end the current unacceptable situation.
The previous session of Parliament was dominated by the debate over the constitution—a campaign that Gordon was at the heart of before he was diagnosed with MND. That campaign and debate not only divided our country but saw a huge amount of political time and political energy used on both sides of the argument. This fifth session of Parliament can and should be about progressing policies together to improve the lives of the people whom we serve, such as Frank’s law and other policies that can transform people’s lives.
Like members, I feel privileged to have known Gordon. I will never quite comprehend how, at the age of just 31 and after receiving what amounted to a death sentence, he managed to be the amazing person that he was right to the end of his life. He undertook his three-year battle with MND and, at the same time, focused his energy and efforts on raising funds and awareness for MND Scotland. For those who have not already donated to Gordon’s fightback, I hope that they visit the website and encourage others to do so. His mission statement is what should inspire all of our work in the Parliament—Alex Cole-Hamilton has already mentioned some of it:
“I don’t want pity. All I want is for you to take action to help fund a cure and fight for better care for people with MND.
It’ll be too late for me, but we must—and with your help we will—find a cure for the next generation.
With your help I can turn a negative into a positive.”
Gordon’s legacy is one that he will never truly know. For me as a friend, and I know for colleagues across the Parliament, he will go on inspiring the work that we do as MSPs for the rest of our own lives.
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