Meeting of the Parliament 22 February 2017
I offer my deepest condolences to Gordon Aikman’s family and friends. The debate is an opportunity to reflect on Gordon’s inspiring and selfless campaign. He generated unprecedented awareness of the challenges that are faced by those who live with debilitating neurological conditions, and he kept motor neurone disease in the public eye. For people living with the condition, that has surely helped to challenge the isolation of MND. The legacy of his campaign will make a huge difference to generations to come by transforming the way in which people are treated.
I know that the debate is a tribute to Gordon Aikman and the legacy that he left but, as a keen rugby fan, I must also pay tribute to South African scrum half Joost van der Westhuizen, who died this month of motor neurone disease, aged just 45. The 1995 world cup final was the most momentous game in the history of rugby union. It was the match that helped to unite Nelson Mandela’s South Africa, and at the heart of the Springboks’ victory was the scrum half Joost van der Westhuizen, who not only tackled Jonah Lomu in full flight—not many people have done that and survived—but gave the pass for the winning drop goal. As a player, he was supremely physical, and his diagnosis in 2011 absolutely shocked the rugby world and showed yet again just how indiscriminate the illness is.
We know that MND is a rapidly progressive and debilitating disease. It is cruel, relentless and indiscriminate, and currently there is no cure. Because it is rare and progresses so quickly, it has been difficult to raise awareness. In contrast, our progress in understanding the disease has been painfully slow. At least there is now one drug with a modest effect that slows progression and we have a better understanding of the multiple underlying genetic and environmental triggers. Many of the symptoms of MND can be helped with the proper combination of medical treatment, specialised equipment and nursing and psychological support.
As others have done, I want to highlight some of the really positive steps that the Scottish Government has taken, thanks to Gordon’s tireless campaigning. The first of those steps is the right to a voice. As others have pointed out, one of the worst aspects of MND is that patients lose their voice, and the statutory duty on ministers to secure communication equipment as well as funding for research into voice banking is helping to tackle that.
The second step is a living wage for carers. Tomorrow’s budget sets out an investment of £107 million to continue to support the delivery of the living wage for social care workers, in recognition of the invaluable contribution that they make.
The third step relates to specialist nurses. Thanks to Gordon’s campaign highlighting the lack of MND nurses, the Scottish Government funded the national health service to replace charity funding for MND nurses and to increase their number from six to 12.
Finally, on research funding, Gordon raised almost £0.5 million to help find a cure for MND, and the Scottish Government is also providing funding to deliver PhDs in neurological conditions. The PhDs offer a unique opportunity to develop an integrated national PhD training programme that recognises the shared underlying biological mechanisms in MND and multiple sclerosis, and they demonstrate that Scotland continues to lead the way in clinical research and innovation.
Medical science has long been dumbfounded by MND. Its cause is not known, but a huge amount of research is being carried out, and advances are being made in understanding the disease process and the way in which motor neurons function.
Gordon’s legacy will be long and lasting. He is no longer with us, but his campaign shows no signs of slowing. That, indeed, is a lasting tribute to him.
15:56