Hansard

It is an honour to be part of today’s debate to recognise Gordon Aikman’s work and achievements. Based on the contributions from members that we have listened to this afternoon, it is clear how much of an inspiration he was.

Like some of the speakers today, I never met Gordon, but I was privileged to meet his family and husband today. I pay tribute to their courage and strength in being here today, at a time that must still be incredibly raw for them, as it is for all who knew and loved Gordon and continue to miss him terribly.

Today’s debate has seen the Parliament at its strongest—when we put to the side the baggage of party politics and unite with a voice determined to do what motivated us all to get involved in politics and what inspired Gordon to do so: to make life better, to make our country better and to make a difference. In each and every contribution, from across each and every party, we have heard passion, commitment and powerful personal testimonies.

Gordon made a huge difference. In her beautiful article about him, Kezia Dugdale wrote that, when he was first diagnosed with MND, he was clear that he could respond in one of two ways: to sit down or to stand up and fight. For Gordon, she wrote, there was only ever one option. That spirit—that tenacity and strength—was truly inspirational.

That is why the Scottish Government is proud to have worked with Gordon and his fellow campaigners to deliver the pledges that he set out in his campaign to improve MND services and research. We are honoured to have played our part in helping to achieve some of the 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 specialist nursing. We have doubled the number of MND specialist nurses across the country and ensured that all of them are now funded by the NHS. We have legislated to give a statutory right to communication equipment and support to give a voice to people who do not have a voice or are at risk of losing it. We are paying a real living wage to social care workers, and we are investing in MND research. Over the next three years, there will be six new MND-dedicated PhD posts in our universities.

Although it is always good for a Government to have a list of actions that are being delivered, and that is always useful for a debate, the contributions by Kezia Dugdale, Christina McKelvie and Claire Baker brought to life what those improvements mean—whether that is the tangible and material difference of what specialist nurses have brought to the speed of accessing feeding tubes, which Kezia Dugdale described, or being able to go back to the nine-year-old Christina McKelvie and say to her mum and her family that we will fast-track the help that they need, and we will do it as quickly as we can. We cannot go back in time for Christina—or for too many others—but today’s debate and the Government’s actions show our resolve to do our very best to make improvements.

I also want to thank Claire Baker for her bravery in describing so fully what her family are coming to terms with. I have worked with Claire for a number of years through education committees and we have shared stories about what our wee kids are up to and what they are doing at school. I thank her very much for being so brave in disclosing so much about what she is going through at this time.

However, we will not stop with the actions that we are taking forward. We cannot be content with the progress that is being made. That is why we are creating the scholarship programme—to commemorate Gordon’s contribution to improving the provision of specialist care and research for those with MND. We will provide £25,000 a year to support individuals and professionals to develop, implement and evaluate practical interventions to improve the quality of life of people who are affected by the condition. The scholarship programme will be administered by the nursing, midwifery and allied health professionals research unit at the University of Stirling. Those who are awarded a scholarship will be hosted in the Euan MacDonald centre at the University of Edinburgh. Euan MacDonald was another inspirational figure who did so much to improve the lives of people living with MND and to improve research.

Of course, Gordon was an advocate for people with MND, but his impact went far beyond MND and spread into creating improvements for other neurological conditions. As George Adam has made clear in his comments, and from what I know Stacey, his wife, would demand of us, we need to continue to work on a number of fronts to make things better for people with all neurological conditions, including MS. I also thank Clare Adamson for bringing her personal experience of MS to the chamber and the debate today.

We have also provided funding to and worked with the Scottish Huntington’s Association to develop a national framework for the care of those who are diagnosed with Huntington’s disease. While that work is still being developed, there has been much positive feedback, particularly from other third sector organisations that represent people with a range of neurological conditions. I look forward to receiving updates on the progress of that work.