Meeting of the Parliament 22 February 2017
I offer my sincerest condolences to Joe and the family and friends of Gordon Aikman. I offer these mere words as a comfort to them as a daughter who has loved and lost someone dear to me to motor neurone disease. No words can ever express enough the depth of our grief, but please know that these words are filled with the experience of a family who face every day with the knowledge that this terrible disease has taken our loved one. My family share our grief with Gordon’s family and friends.
Many in this chamber are familiar with my MND story. At the age of nine, I was faced with the reality that my big, strong, funny, talented singer of a dad—an iron moulder to trade—had a terminal illness. He was 45 years old, my mum was 37 and there were four of us kids in the house. The immediate impact was drastic. After a short period, my dad had to give up work. He was the breadwinner in our house, as my mum had had to give up her job when she had her kids—those were the days when that was what people did. My family went through a range of emotions: loss, anger, fear, anxiety and heartbreak.
The benefits system then—as now—was almost impenetrable. With our family losing a significant amount of income, my mum went to work at night and we looked after my dad when she was out. What a huge difference a fast-track benefits system would have made to my family at that very difficult time. I have campaigned along with Gordon and MND Scotland for such a system, so it was amazing to hear the cabinet secretary’s words today.
In difficult times such as the ones that we are discussing, the last thing that a family needs is to spend those last precious days fighting for the dignity of having enough to live on. Automatic lifelong awards can make a huge difference to those families, and I urge the Scottish Government to ensure that that is realised when the benefits that will be devolved to this place come here.
The amazing work of Professor Chandran and his inspiring team at the Euan MacDonald research centre brings us new and exciting breakthroughs, not just in the scientific field but in improved care for people with MND. That better care needs to be delivered by MND-qualified nurses, and the Scottish Government’s commitment to funding those nurses is welcome. However, I ask the Government not to stop at a doubling of the numbers and to think about training more. I urge it to listen to what Kezia Dugdale said about the value of an MND-qualified nurse.
Another aspect of MND is losing your voice, which is a huge part of your personality—that is a huge blow. I have never been prouder of this place than when we enabled the voice bank to be housed here. It was supposed to be here for only a month, but so many names came forward that it was here for four months. There are many different voices in this place, and we all like to hear the sound of our own voice, but the benefit that it can give to someone who is losing their voice is immeasurable.
When it comes to scientific research, we need to have the best and most creative minds working together to advance understanding and eventually find a cure for this horrible disease. That is why the Scottish Government-funded PhD places and the fellowship programme are so important. The more minds that there are working on the research, the bigger chance there is of finding a cure. The Gordon Aikman scholarship adds brilliantly to that aim.
Finally, I will say a bit more about Gordon and the many inspiring people I know who campaign every day for MND Scotland. Gordon brought us hope, which is a very powerful motivator. It can move mountains, but more importantly it can move hearts. It moved my family, and many members in the chamber, to walk on fire, abseil off buildings and take the ice-bucket challenge, and it can move other people to do amazing things in order to raise funds.
Hope can always push people that wee bit harder, and I believe that we have moved the Government to make some changes. Transformational changes to people’s lives after their diagnosis with MND—some of which are very short, maybe only 14 months—will ensure that the last precious days they have with their families are filled with love and quality time rather than worry and despair.
That is Gordon Aikman’s legacy: hope. It is hope for the people with MND, for the families that are supporting them and for my family, and for Joe and Gordon’s family, who are left behind to carry on the fight to find a cure, make nursing care better and ensure that people have financial dignity.
Hope can move mountains: all we have to do is move a Government, and we have pushed it in the right direction. I ask the Government, in memory of Gordon Aikman and all our loved ones whom we have lost to MND, to be moved to take those actions.
15:47