Motor Neurone Disease/Gordon Aikman

Chris Stephens Excerpts

Monday 20th February 2017 Commons Chamber

[Ian Murray]

I am delighted that the hon. Gentleman was able to intervene to emphasise the good work that MND associations, including MND Scotland, do across the country. I pay tribute to him for highlighting that good work in the House and I ask him to pass on our best wishes to his constituents who are stricken by this dreadful disease.

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 of Gordon’s life 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.

[Chris Stephens (Glasgow South West) (SNP)]

I congratulate the hon. Gentleman on securing this debate. I agree with him that Gordon Aikman was indeed an inspiration. Does he agree that his campaigning work, particularly with the First Minister of Scotland, ensuring changes to the law around voice therapy, for example, and doubling the number of specialist nurses, was important to his campaign?

[Ian Murray]

I do agree, and I am delighted that the hon. Gentleman was able to make that point, but as the First Minister said on Saturday at the celebration of Gordon’s life, all the credit for those changes to care in Scotland goes to Gordon and his campaign. There is a need for us all now to take that campaign and make sure that the rest is delivered.

Researchers have yet to discover how or why people develop the disease. In Gordon’s case and in around 95% 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% 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.