Meeting of the Parliament 22 February 2017
Unlike many previous speakers, I cannot talk about Gordon Aikman from a personal point of view. We met only once, and that was in a taxi queue after an event—hardly the best circumstances in which to meet someone for the first time. However, I can talk about the impact of his campaigning during his final years.
We were all aware of motor neurone disease, but it was not part of the public consciousness. Unless a friend or family member had been diagnosed with MND, people had little involvement. My involvement came because of two friends of mine from the political world. One encouraged me to run the Paisley 10k for MND Scotland—well, to say that I ran might be a slight exaggeration, but I briskly completed the course. It was Christina McKelvie, who campaigned about MND after the death of her dad, and Councillor Lorraine Cameron in Paisley who made the condition real for me. Lorraine’s mother, Eileen Clark, was diagnosed with MND and went from being a very active woman to death within a couple of years. The illness took its toll on mother and daughter, as Lorraine struggled with her own health issues during that period.
That is what MND can do to families. From diagnosis, the clock is ticking, but what people do and how they are supported during their limited time is important. Some people who are faced with adversity take on superhuman qualities and strength. Gordon Aikman did that as he set up his fightback campaign, campaigned for MND Scotland and pursued the case for having more specialist nurses for all neurological conditions.
A knock-on effect of Gordon’s fightback campaign was investment in other neurological conditions, as the cabinet secretary said. Members will be aware of how close I am to multiple sclerosis—we could say that I am married to it, because my wife, Stacey, was diagnosed with MS when she was 16. She has the same quality of never giving up. She does not allow herself to be defined by her long-term neurological condition. She is a woman of strong ideals and an extremely positive outlook on life, and she believes that we must live every day as if it were our last.
Stacey’s mum tells the story of one time when Stacey, in her late teens, was feeling sorry for herself. Her mum brutally asked her, “Who would want to know you with an attitude like that?” Those were harsh words, but they were spoken out of love for her daughter, who would have to live for the rest of her life with MS—because, as with MND, there is no cure.
MS is a highly individual, often fluctuating and always progressive condition that affects more than 11,000 people in Scotland, and people need specialist support to manage it appropriately. In 2015, thanks to Gordon Aikman and campaigning groups, additional funding was found for MS specialist nurses in the NHS. However, because of factors such as the increased availability of treatments and the consensus about the need for early treatment and continued condition monitoring, the workload of MS specialist nurses continues to increase. Research from the MS Society suggests that MS nurses are the most common key contact for people with MS and that the role of the MS nurse increasingly extends far beyond a clinical role into areas such as employment, welfare and whole-life support.
Further investment is needed in neurological nursing, particularly for those who are living with MS. That will be the focus of this year’s MS awareness week, which is the last week in April. If we want to honour Gordon’s memory—if we want to say all these good things and leave a legacy—the best way to do that is to continue his campaign. We must ensure that those who have neurological conditions continue to get the support that they require.
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