Motor Neurone Disease/Gordon Aikman

Baroness Laing of Elderslie Excerpts

Monday 20th February 2017 Commons Chamber

[Ian Murray]

I am delighted at the hon. Gentleman’s intervention; he is indeed right. Many people have drawn inspiration from Gordon’s Fightback, the way in which he dealt with the disease, the dignity with which he did so, and the fact that he spent his remaining time fighting to raise over half a million pounds for the things that he believed in, when most of us would have been lesser human beings and wallowed in self-pity or done something else. It is testament to that that we have the Secretary of State for Scotland and the Minister in the Chamber tonight listening to the debate. Hopefully, the Minister will be able to respond with some positive developments to keep Gordon’s memory alive.

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. Do you remember the ice bucket challenge, Madam Deputy Speaker? I do not know whether you participated yourself—if not, we could maybe go into Palace Yard after this debate and relive what happened in 2014—but that was the summer campaign, where we all soaked each other with iced water in the name of MND awareness and fundraising. It was with campaigns such as these that Gordon doubled the number of—

[Madam Deputy Speaker (Mrs Eleanor Laing)]

Order. For the avoidance of doubt, I am glad that the hon. Gentleman has mentioned this. Never was there a better campaign to draw attention to something that needed attention drawn to it. Although I managed to avoid it myself, I did engineer other people’s participation. The hon. Gentleman has done very well to mention this issue today. I had not realised that the two things were connected. What an absolutely brilliant campaign.

[Ian Murray]

I am delighted, Madam Deputy Speaker, that you are now able to make the connection between that campaign and Gordon’s Fightback, and are aware of the significant amount of money that was raised in 2014. I do not think there was ever an end-point to the ice bucket challenge. If there was an end-point, perhaps someone from MND Scotland could let me know. I think the way it went was that if someone was soaked, they nominated others, as indeed you have done, Madam Deputy Speaker. With the grace of the House, therefore, I would like to nominate Madam Deputy Speaker to do the bucket challenge. I think the terminology is, Madam Deputy Speaker, “You have seven days”.

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 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. I am conscious, Madam Deputy Speaker, that this might be my last ever speech in this Chamber, but I shall carry on regardless.

The association’s support for MND research focuses on five key themes: 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.

The hon. Member for Dumfries and Galloway (Richard Arkless) hoped to attend the debate, but he is stuck on a train somewhere between Wigan and London, and the main business ended early today. Let me just mention that his mother and brother-in-law both died of MND. I believe that he met the Under-Secretary of State for Health, the hon. Member for Warrington South (David Mowat), just before Christmas, with the aim of ensuring that when a DWP assessment was completed for someone suffering from MND, that person would not be reassessed. However, I understand from the hon. Gentleman that the Department for Work and Pensions is still issuing letters about reassessment. I should be grateful if the Minister wrote to the hon. Gentleman, and me, to update us on what progress has been made in relation to not issuing such letters when people have been diagnosed with MND and a proper assessment has already been carried out.

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%”. 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% 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%” to “100%”, 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.