Hansard

I thank the Government for scheduling the debate to allow Parliament to acknowledge the transformative and truly effective campaigning work of Gordon Aikman. The thoughts of the Scottish Greens are with Joe and Gordon’s family and friends, and we are pleased to support the motion and the amendment.

In the chamber, there can be a tendency to use—indeed, to overuse—hyperbolic positive language, sometimes inappropriately, but that is not a concern this afternoon, because Gordon Aikman deserves the fullest praise not just for what he achieved but for the way in which he went about it.

I most recently met Gordon in the Parliament’s garden lobby, where he was in his extremely well-used wheelchair, and we enjoyed a lively chat. It struck me that that was incredible, given that motor neurone disease progresses so quickly. As we have heard, more than half the people with that neurological condition die within 14 months of diagnosis. I cannot imagine how cruel and shocking that diagnosis must feel. Gordon spoke publicly and bravely about that aspect of the experience. In one article that I read, he commented on how innocuous his first symptoms seemed and how confusing it was to receive the initial diagnosis.

In her contribution at Gordon’s memorial service, the First Minister described an exhausting set of achievements and his contribution to public life, and today the cabinet secretary has left us in no doubt about his impact, which is rightly and deservedly to be marked with the creation of a new scholarship. What energy, what purpose and what strength of mind it must have taken to use his precious time to lead such a successful campaign. Kezia Dugdale’s eulogy was a beautiful tribute to Gordon as a person—to his joy, his energy and his tenacity.

The results of Gordon’s dedicated campaigning are tremendous—not least the funds that he raised to tackle the disease and lead research into it. He raised some £500,000 for MND Scotland, which will fund essential work towards finding a cure. As Kezia Dugdale’s amendment rightly points out, investing in scientific research is essential. I am glad that the Scottish Government has committed funding to at least 16 PhD studentships in neurological research, because training and developing future scientists is vital to our medical research landscape, and I welcome all such steps.

Although research into a cure for this life-limiting illness should give us all hope, we must ensure that those who are living with MND are supported well and enabled to make the most of the irreplaceable time that they have with their families and friends. As we have heard, securing the living wage for carers was one of the aims of Gordon’s fightback. Sadly, our society often places too little value on the incredible work that carers do day in, day out, but Gordon’s fightback made the value of that caring very clear. Gordon said:

“My carers not only make my life liveable, but make my life worth living. They are: my arms, my legs, my independence. It is only right that carers get paid a Living Wage for the life-changing work they do”.

I am glad that the Government has introduced funding to support the living wage for carers. Gordon played no small part in the success of that campaign. It is now incumbent on all of us in the Parliament to take the most care to ensure that the living wage is implemented fully and fairly, that it benefits all care workers and that we do not stop fighting for better working conditions, professional opportunities and recognition for carers.

Gordon’s campaign also focused on the need for better specialist medical support for people with MND and for improved palliative care. One of his most outstanding achievements was to secure the Scottish Government’s commitment to double the number of motor neurone disease nurses and to fund them through the NHS, which means that patients will be able to see a specialist nurse more often.

Kezia Dugdale and Christina McKelvie spoke about the difference that MND nurses make, as did many other colleagues. Specialist nurses help to plan essential care as, sadly, the symptoms of the neurological disease become severe all too quickly and palliative care can become important very soon. Introducing appropriate palliative care early, which means leading meaningful and difficult conversations about people’s true preferences for treatment almost from the day of diagnosis, can do much to support people throughout their illness.

We need not only to fund medical research and social care workers but to build a culture that is more understanding and is more open and willing to discuss death and dying. Gordon’s campaign was a great step forward in that regard. The success of his fightback can be measured not only in the funds that he raised and in the huge changes to policy that he helped to lead but in his reflective words and honesty about his condition and experiences.

Gordon’s fightback has a lasting legacy. Let us ensure that we build on Gordon’s incredible work with urgency and commitment. That is the least that we can do to properly honour the memory of that unique young man.