Ian Murray: Gordon Aikman gave a voice to motor neurone disease patients; in death, his own voice speaks on

This is an edited version of the speech given by Ian Murray, MP for Edinburgh South, in a Commons adjournment debate on motor neurone disease to mark the legacy of Gordon Aikman, research director of the Better Together campaign, who died earlier this month.

I want to talk about the dreadful disease that is motor neurone disease and to pay tribute to the life of Gordon Aikman. I wish we were not having this debate, because that would mean Gordon Aikman was still with us. He sadly passed away on 2 February, aged just 31.

I want to do three things this evening: first, pay tribute in this House to Gordon Aikman and what he achieved both in his life and in his death; secondly, give more exposure to what MND is and how the disease affects those stricken by it; and, thirdly, discuss what we can all do and what the Government can do to help find a cure.

Gordon Aikman was only 29 when he was diagnosed with MND. He was given 14 months to live but, as was usual with Gordon, his dedication and determination made sure he doubled that to 28. Gordon died leaving behind a loving husband, Joe, who is with us this evening, a doting mother, Nancy, and a devoted sister, Lorraine. He has become a twinkling star in the sky for his young niece Ailidh and young nephew Murray, who would describe Gordon as “Uncle Gordon with wheels” when he was in his wheelchair. He leaves behind friends whose lives will forever have a Gordon Aikman-shaped hole in them. All our thoughts at this time go out to everyone who knew him.

Gordon leaves a legacy that few of us will ever be able to match. Gordon was an inspiration: dedicated, intelligent, meticulous and simply a lovely person to be around. He touched the lives of everyone who had the pleasure of getting to know him and spend time with him. He was a graduate of the University of Edinburgh and a former gymnast who represented Scotland. He was working as director of research for Better Together, the campaign to keep Scotland in the UK, during the Scottish independence referendum in 2014 when he fell ill. He had gone to the doctors with recurring numbness in his hands. He was beginning to find it difficult to tie his shoelaces and button his shirts. He anticipated, as we all do, that a pack of pills and a bit of rest would do the trick. How wrong could he be?

I cannot do justice to what happened to Gordon, so I will let Gordon tell his own story in his own words, quoting from the moving Scotland on Sunday article he wrote in the week he was given the sad news. He wrote:

“I am lying on a cold hospital bed, stripped down with electrodes stuck all over my skin. A doctor quietly takes notes as pulses race through my body. After almost an hour I get back into my suit, ready for a packed day of calls and meetings.

“The doctor steps out to speak to my consultant. I flick through the morning’s headlines on Twitter and quickly check my email as I wait. In my job as director of research at Better Together, I have got to be up to date. The doctor is gone some time. My appointment has already overrun. I’m irritated. He returns and says: ‘Your neurologist would like to see you at 1.15 tomorrow.’

“‘Tomorrow won’t work. I have meetings. Meetings I can’t miss.’ He tilts his head to one side, holding my stare for what seems like an eternity, before stressing: ‘Your neurologist will see you tomorrow. 1.15.’ The penny starts to drop. Suddenly that conference on the economics of independence seems far less important. Fast-forward 24 hours and I am back at Edinburgh’s Western General. This time I sit opposite my consultant neurologist; a young, caring face looks back. He speaks softly, but this time the atmosphere is different. He talks slowly. He pauses. I know it isn’t good news, but nothing could prepare me for what he is about to say.

“Tears form in his eyes as he explains that all the diagnostic tests point to something called Motor Neurone Disease or MND. I’m confused. ‘That doesn’t sound good,’ I respond awkwardly, thinking to myself: ‘I don’t have time for this.’ He asks what I know about MND. ‘Very little,’ is my honest answer.

“‘It is a rare, progressive and debilitating disease,’ he explains, ‘that attacks the brain and spinal cord.’ I don’t believe what he is telling me. I shake my head in disbelief. ‘In time,’ he says, ‘it will lead to weakness, and muscle wasting,’ affecting how I walk, talk, eat, drink and breathe. How could this be? My symptoms seemed so innocuous. ‘Why me? Why now?’ I ask. He bites his lip, before replying candidly: ‘We just don’t know unfortunately.’

“When I press further, he concedes: ‘There is no cure.’ I cut to the chase: ‘What is the prognosis? How long will I live?’ Hesitant, he prefixes his answer with ‘everybody is different’ and ‘it is difficult to predict’. He then wells up before admitting that we are talking ‘just a few years’. My head is a mess. I stand up, walk across to the window, run my hands through my hair and stare out into the middle distance. My mind goes blank. I don’t know what do. I’m 29 years old and I have just been given a death sentence.”

Gordon went on to write:

“When you are told you are dying you face a choice: you can wallow in self-pity, or you can make the most of what you’ve got”.

And my goodness, Gordon certainly made the most of what he had. He married his husband Joe and travelled extensively. As we heard at the funeral and the celebration on Saturday, he travelled to New York, Boston, Amsterdam, Dublin, Stockholm, Madrid, Tenerife, Prague, Tuscany, Newquay, Paris, Cork, Munich, Orkney, Fort William and California, as well as Israel, South Africa, Switzerland, and had a trip on the Queen Mary II and a break in Iceland to see the northern lights. If I have missed any, I apologise. He also spent as much time as he could with his family and his friends.

With all of that, Gordon was determined to ensure that those who suffered from MND got the best care, the best deal and the hope of a cure in the future. Understanding lies at the root of all human endeavour. In order to defeat something, we must find out what it is first, so here is what we do know and, most importantly for tonight’s debate, what we do not know about MND.

Researchers have yet to discover how or why people develop the disease. In Gordon’s case and in around 95 per cent of diagnoses, there is no family history of the condition. MND is a fatal, rapidly progressing neurological disease that affects the brain and spinal cord. It can leave people locked in a failing body, unable to move, talk or, eventually, breathe. It kills a third of people within a year and more than 50 per cent within two years of diagnosis. It affects up to 5,000 adults at any one time in the UK and kills six people every day in the UK.

Some people may experience changes in thinking and behaviour, with a proportion experiencing frontotemporal dementia, which is a rare form of dementia. This is the key thing about MND, though: it has no cure. It is that last point that drove Gordon on. He was a tireless and courageous campaigner on behalf of people living with MND, as well as their families and loved ones. He created his Gordon’s Fightback campaign, which we have heard about tonight, and his tenacious work with MND Scotland was inspirational to many and helped to raise awareness of MND across the country.

Gordon had raised over £500,000 by the time he died—more now, incidentally—but he had also put MND on the map.

I do not think there was ever an end-point to the ice bucket challenge… That, then, was the summer campaign when we all soaked each other with iced water in the name of MND awareness and fundraising. It was through campaigns such as these that Gordon doubled the number of specialist nurses in Scotland, paid for by the NHS rather than by charitable donations. Among Gordon’s more recent achievements was ensuring that MND patients with communication difficulties had access to their own voice synthesizers on the NHS. It was Gordon’s biggest fear—not just losing his own voice, but the synthesisation of his own voice being someone else’s. He fought for that and got it changed.

Despite those and other improvements, however, there is still much more to be done in the battle to defeat MND. First and foremost, if we are to find a cure for MND, we must vastly improve our understanding of its root causes, and it is here that I hope the Minister can help us this evening. MND is a question to which we have yet to find a suitable answer. Researchers still do not know what causes the disease. A key recommendation of the Gordon’s Fightback campaign is to double public investment in MND research from its current level of £5 million a year to £10 million a year. Unlike some of Gordon’s wonderful achievements that we have highlighted this evening, there has to date been no action taken to meet that goal. At present, MND research relies heavily on the support and contributions of the voluntary sector.

The MND Association, sister associations in England and Wales and MND Scotland have a research portfolio comprising over 80 projects, totalling over £14 million of charitable funds, including £5 million raised by the very ice bucket challenge in which you will participate, Madam Deputy Speaker, in the next seven days.

The association’s support for MND research focuses on five key themes… The five themes are identifying the causes of MND; developing models of MND; identifying markers of disease progression; developing treatments; and improving healthcare and disease management for those affected.

We have a real opportunity to embrace the leading research base in this country to do just that. For centuries, major leaps forward in medicine and science have been made in the UK. With the right investment and support, we could find a cure for MND here now. Scotland is uniquely placed to become a hub for innovative research into the disease for a number of reasons. Edinburgh University’s Euan MacDonald centre is already undertaking cutting-edge research into MND. Patients already have a unique patient identifier, which means those with MND can be more easily identified and monitored throughout their interaction with the health service. The increased number of specialist MND nurses will allow better, more detailed tracking of how the disease progresses in patients.

Progress has been made. The Euan MacDonald centre thinks it might have found a potential reason why motor neurons are vulnerable to stress and disease, which could be one of the very first steps to avoiding or halting the progression of MND. This collaborative project, involving the universities of Edinburgh and Cambridge and institutions as far afield as Japan, is also helping understand how motor neurons develop and regenerate. The cure could be in this generation’s hands. Funding in the United States—where the ALS Association, the US equivalent of the MND Association, has identified a key genome with funds raised by the US bucket challenge—could be the first step towards a cure.

As well as doubling public research funding, the Minister could help by making “fast-track” benefits fit for purpose. People with MND do not live long—we know that—but it can take several months to process applications for the benefits that they need, such as personal independence payments. Currently, the “fast-track” system applies only to people who are judged to have less than six months to live. That needs to be extended to 12 months, or, indeed, the system should apply at the time of diagnosis.

Let me also pay a brief tribute to another friend of mine who died from MND. Robert Wilson died in August last year. He was a former partner at Deloitte in Edinburgh, and became the first chair of the Scottish Premier League in 1998 after helping to set it up. I got to know Robert when he advised the Foundation of Hearts to be in a position to take Heart of Midlothian football club out of impending liquidation. His straight-talking style was direct. He said things as he saw them. He was always challenging, and always hugely helpful. We were lucky to have him, and so was the club. It is thanks in large part to Robert that it survives and thrives today; it would have disappeared had it not been for people like him. Robert and I subsequently served together on the board of Hearts football club. Everyone was really fond of him. We were robbed of his intense intellect, his passion for the club, and his companionship when MND took his life. He was respected and admired by all, and will be very sadly missed, especially by his wonderfully supportive family.

Gordon had a nickname when he worked at the Scottish Parliament. His nickname was “14 per cent”. Many people may ask why that was. It was because when he worked as a researcher for the Scottish Labour Party, he was responsible for 14 per cent of all the freedom of information requests submitted to the Scottish Government. That fact was even mentioned by the former First Minister, the right hon. Member for Gordon (Alex Salmond), at First Minister’s Questions. The right hon. Gentleman was rather irritated by it. If Gordon is to leave any legacy, irritating the former First Minister is very high up in my book. Tonight, however, I want us to change Gordon’s nickname. I want us to change it from “14 per cent” to “100 per cent”, and we can do that by doubling the annual research budget for MND from £5 million to £10 million a year.

Gordon, in his death, transformed the lives of so many. The world is a better place for his having been in it. The understanding of MND is enhanced by his dedication to educating. The care of those suffering is enshrined in his having fought for it. The rights of those affected are secured because he demanded that. The cure for MND is closer after his fundraising for it. Gordon did so much in such a short space of time, and now it is our time to find a way to honour that legacy. I say this to the Minister: let us pledge tonight to be a little more like Gordon, and double the MND research budget.

In life, Gordon gave a voice to MND patients; in death, Gordon’s own voice speaks on. It speaks on in the words that he wrote, in the things that he achieved, and in the lives that he touched. I opened my speech in Gordon’s words, and I will finish with them, as echoed by the Scottish Labour leader Kezia Dugdale at his funeral on Saturday. Gordon said:

“What I have lost in strength of body, I make up for in strength of mind. I am more determined and driven than ever… I want to make every day count.

My love is deeper. I find joy in simpler things and in different places. I am more chilled out, at peace with the fact that there is so much in life that is out of our control.

Let’s celebrate the rich, diverse and complicated world we live in. Let’s savour each day. Let’s measure life not by length but by depth.”

Gordon Lewis Aikman, born on 2 April 1985, died on 2 February 2017, aged 31. May he rest in peace, but may his legacy live on.

More from LabourList