First published in Progress magazine
Gordon Aikman wants nothing left unsaid | Richard Angell and Adam Harrison
Gordon Aikman has been busy of late. The former Labour party staffer-turned-director of research for the unionist referendum campaign Better Together has met Hillary Clinton, been in and out of No 10, received wide coverage in national newspapers and, most recently, his partner, Joe, proposed after a day visiting the White House and the Oval Office.
In the final weeks of the independence referendum campaign Aikman found out he had motor neurone disease. The condition was recently propelled into the news thanks to the Oscar-winning film The Theory of Everything. Unlike Stephen Hawking, Aikman’s strain of the disease means he has just months to live. ‘I think we could all learn from Philip Gould [the New Labour pollster] and others about making the most of every day. Life is finite.’ ‘With the progressive nature of MND, I know that today is my healthiest day; I am only going to get worse. I’ve been living life and enjoying life as much as I can.’
A big supporter of Jim Murphy, the new Scottish Labour leader, and a close friend and former colleague of Kezia Dugdale, his Murphy’s deputy, Aikman thinks they ‘are a great combination’. They have ‘got Labour back on the pitch in Scotland. People are listening to what Labour is saying’. He is struck by how, under the pairing, ‘how many fresh ideas and how much quality’ is coming out of the party. ‘The backroom staff that they have put together – it’s formidable, it’s an incredibly strong team.’ ‘They’re just beginning their climb … they have a long way to go’ but he strongly believes Murphy and Dugdale are the right people to ‘take on the fight’.
He says, ‘The challenge for Jim is to get the balance right: work with Ed [Miliband] and get the right policies for the whole of the United Kingdom’ and ‘not be scared to disagree and [support] a different approach in Scotland’. Does he see the logical conclusion being more autonomy, even separation for Scottish Labour? ‘It would be sad to see the Labour party in the UK broken up but … we should never be fearful of change’. At the end of the day, ‘the challenge for the Labour party is to get the right policies and the vehicle through which we that I’m less interested in’.
Aikman has the CV of would-be professional politician – sabbatical officer, Labour party, independent campaign. Sadly MND has robbed either Westminster or Holyrood of a great parliamentarian. He is using his skills in politics and recent personal experience to launch his campaign. ‘I wasn’t just willing to just sit there and go, “Hey ho, it’s been OK for me”. There are so many things that need to be fixed. I know what they are [and] I know how the system works.’ He has already raised just short of a quarter a million pounds for MND Scotland and achieved huge changes in policy: MND nurses paid from the public purse and a doubling of their number.
‘It’s really restored my faith in politics. It’s been so successful but partly [the success lies] in the speed at which it all happened. Politics and policymaking tend not to be fast.’ But time is not on Aikman’s side. ‘The fact that Nicola Sturgeon agreed to meet me, when was it? December? November? And she has delivered a policy ask by January – it was just incredible. Civil servants and government do not move that quickly.’
So what is he fighting for now? ‘Three things’, he answers assertively. ‘First, phase out personal care charging in Scotland for people who are terminally ill. At the moment, it’s just wishy-washy guidance that council ignore.’ Second, ‘fast-track benefits for people who are terminally ill. For example, people with MND do not live long. Half of people die within 14 months of diagnosis, yet it can take seven months for personal independence payments to be progressed.’ ‘Finally,’ he says, ‘we are far from understanding what causes MND. Researchers do not know why I’ve got it, why Hawking got it, never mind what we need to cure it.’ He believed other parties should follow Labour and commit to ‘a doubling of monies spent on MND research funding. I think the more we invest, the quicker we’ll find a cure’. ‘I am so determined, while I have got the time and the energy and the fight in me, I will continue to fight for these changes … I want to see them delivered.’
He talks affectionately about the ‘modern, on the whole, very slick operation’ he has experienced in the NHS. He heaps praise on the ‘human interaction’ and says ‘imagine being an MND specialist nurse knowing that every single patient you meet is not going to get better, every single one will die and die fast.’ ‘It’s an incredibly difficult thing.’ The NHS’ mechanisms, however, can be a different experience. Aikman is waiting for an appropriate wheelchair as the one provided by the NHS is too ‘basic’. He is also waiting for a feeding tube to be inserted as the simple act of raising his fork to his mouth is too tiring. The operation was supposed to be ‘scheduled for February, but it’s probably going to be March now’. His wedding to Joe is in March and nothing can get in the way of that. Time is everything for both of them.
‘Eighty per cent of people [with MND] experience loss of voice, and it’s scary.’ He has recorded his voice as an ‘insurance policy’ that ‘hopefully I’ll never need to use’. ‘Not everybody does lose their voice and fingers crossed I don’t … It’s the cruellest thing.’
‘I don’t want anything to go unsaid. I want all my family and all my friends to know that I love them deeply. I am dying, but I am lucky in many ways, l’ve found love and for that I am hugely grateful.’
To donate to Gordon’s Fightback text ‘MNDS85 £10’ to 70070 or visit JustGiving.com/GordonAikman