Meeting date: Wednesday, February 22, 2017
Meeting of the Parliament 22 February 2017
Agenda: Portfolio Question Time, Social Security, Motor Neurone Disease (Gordon’s Fightback Campaign), Digital Economy Bill, Business Motion, Parliamentary Bureau Motions, Decision Time, Industrial Strategy
- Portfolio Question Time
- Social Security
- Motor Neurone Disease (Gordon’s Fightback Campaign)
- Digital Economy Bill
- Business Motion
- Parliamentary Bureau Motions
- Decision Time
- Industrial Strategy
Motor Neurone Disease (Gordon’s Fightback Campaign)
The next item of business is a debate on motion S5M-04122, in the name of Shona Robison, on motor neurone disease and Gordon’s fightback campaign.15:16
I welcome the opportunity to open this debate on celebrating the life and work of Gordon Aikman and the Gordon’s fightback campaign. I start by offering my and the Parliament’s condolences on their loss to Gordon’s husband, Joe Pike, and his friends and family who are present today. I welcome them to the gallery.
I met Gordon on a number of occasions and was always struck by his determination to make things better for not himself, but others. I am aware that many members across the chamber attended Gordon’s memorial service on Saturday and that the First Minister and Kezia Dugdale paid their tributes then. Although I recognise that the debate might at times be a sombre occasion, particularly for members who knew Gordon very well, I hope that members will take this opportunity to pay their own tributes to Gordon and, importantly, to celebrate his life and achievements. I am, of course, happy to accept Kezia Dugdale’s amendment.
Gordon was born in Kirkcaldy in 1985 and attended Kirkcaldy high school, where he was head boy. He went on to graduate from the University of Edinburgh in 2007. In the next year, he started work in the Parliament as a researcher for the Labour Party. He quickly established himself in the Parliament and gathered respect across parties as someone with an eye for detail who had huge passion for his work. He went on to earn the nickname “Mr Fourteen Percent” after it was revealed that 14 per cent of all freedom of information requests that the Government had dealt with had come from him. I am sure that members would agree that a debate in Parliament is a fitting tribute to him. When I met Gordon’s husband, Joe, earlier today, he told me that Gordon’s inbox is still receiving email responses to his recent FOI inquiries.
Sadly, we know that Gordon’s career in politics was eventually and inevitably cut short, but he did not accept that his contribution to public life was over; in fact, quite the opposite was the case. He galvanised efforts and went on to lead the incredibly successful Gordon’s fightback campaign with MND Scotland. Many of us across the chamber took part in the ice bucket challenge, which helped to raise in excess of £550,000 for MND Scotland. That is an exceptional sum, which has been invested in research that is aimed at finding a cure for MND.
In the time that followed his diagnosis, Gordon achieved a huge amount; in fact, it could be said that he achieved more in those years than most people would achieve in a whole lifetime. As he said in one of his newspaper columns:
“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.”?
The Gordon’s fightback campaign initially had five pledges, which grew to a total of seven as his campaign expanded. One of the most important aspects of that campaign was his call for action on MND specialist nurses. He wanted the number of nurses in Scotland doubled and for those nurses to be paid from the public purse. Gordon was very persuasive and the Government listened to him. We invested £2.5 million of additional recurring funding, enabling us to more than double the number of MND specialist nurses in Scotland, while ensuring that they are indeed paid from NHS Scotland funds.
Furthermore, the Scottish Government, MND Scotland and the University of Edinburgh jointly developed and funded a new national lead/consultant nurse for MND, who will develop a strategic approach to delivering services for people with the condition. That will be a lasting legacy of Gordon—improved care and, ultimately, a better quality of life for people who are diagnosed with MND and other long-term conditions.
We know that research was also a hugely important aspect of Gordon’s campaign. The desire to find a cure for MND was, of course, significant for Gordon. He said:
“It’ll be too late for me, but we can and we must find a cure for the next generation.”
In our 2016 manifesto, we committed to funding three research PhDs in MND and a further three in multiple sclerosis. As such, we are funding a bid from the University of Edinburgh that involves the universities of Aberdeen, Dundee, Glasgow and St Andrews. Our total investment is in the region of £575,000 over the five-year duration of the programme. The bid combines MND and MS PhD studentships in an integrated training programme. The universities involved agreed to a matched funding arrangement, meaning that overall, a cohort of 16 PhDs will be created for work in neurodegenerative disease research.
Bringing MND clinical trials to Scotland was an important aspect of the improvements in research that Gordon wanted. Our Chief Scientist Office funds NHS Research Scotland’s dementia and neuroprogressive disease network. The role of the network is to support the delivery of clinical research in neurodegenerative conditions, including MND, so I have asked the Chief Scientist Office to request that the network organise a research event to discuss how best to respond to the challenge of bringing such clinical trials to Scotland.
I hope that those commitments and the research that is being undertaken around Scotland will help us to work towards the day when Gordon’s dream of a cure for MND is realised.
One of the worst aspects of MND is that up to 95 per cent of patients eventually lose their voice. Gordon called on us to guarantee MND patients a voice by changing the law around access to augmentative and alternative communication equipment. He was instrumental and played a leading role in driving forward improvements to the lives of people who use and need alternative and augmentative communication.
An outcome of the dedicated efforts and commitment of Gordon and all those whom he worked alongside—especially members of the augmentative and alternative communication collaborative—was this Parliament passing part 4 of the Health (Tobacco, Nicotine etc and Care) (Scotland) Act 2016, in March of last year. For the first time, ministers in Scotland have a legal duty, which gives people a statutory right, to provide communication equipment and support for all children and adults who have lost their voice, are at risk of losing their voice, or have difficulty speaking.
We have reconvened the AAC advisory group, which is formed of people who use AAC equipment and people from a wide range of backgrounds who have expertise in this area. Gordon was a much-valued member of the advisory group and he will be greatly missed by his friends and colleagues in it.
As part of our on-going work, we recognise that voice banking—the recording and storing of people’s voices—could be a valuable additional service, especially as people who use augmentative and alternative communication tell us that it is vital that patients get back not just a voice, but their own voice. As such, we have awarded £200,000 of funding to the Euan MacDonald centre research project Speak:Unique to pilot voice banking at sites in the NHS. That work began last year. Preserving one’s own unique voice is invaluable in enabling people to retain their personal identity, as well as enabling family and friends to continue to develop lasting memories of their loved one and their voice.
Gordon valued the relationships that he formed with all those involved in his care, including professionals. He was constantly striving to seek out treatments and approaches that would improve the quality of his own and other people’s lives. That is why I am delighted to announce today that I have established a scholarship programme in honour of Gordon. The Gordon Aikman scholarship will fund professionals or individuals with knowledge of MND to take forward research into new and better ways of caring for people with the condition. It will provide £25,000 a year to support individuals and professionals to develop practical improvements in the way in which people with MND are cared for, such as sharing best practice, specialised physiotherapy or developing a better understanding of carers’ educational and support needs. The scholarship scheme will accept applications from people who work in health care, from those affected by MND and from their carers, whose experience and expertise are invaluable in helping continually to improve care. I very much hope that the programme will continue to drive forward the improvements in MND care that Gordon has kick-started in Scotland, and will be a fitting tribute to his memory.
Gordon was also passionate about the social and economic impacts of MND. He campaigned for changes to the living wage for carers, to have care charges outlawed for those with terminal illnesses and for benefit applications and assessments to be fast tracked. Gordon has made a difference in all those areas.
The living wage will be paid to all adult social care workers in Scotland. That will mean a pay rise to £8.45 per hour from May this year, which will benefit up to 40,000 care workers.
In 2015, we agreed, in partnership with COSLA, that no one under the age of 65 in the last six months of a terminal illness should be charged for the care that they receive at home. That was a step towards the vision that Gordon campaigned for.
I have committed to working with councils to ensure that there is a fairer system of charging by local authorities. On 6 December 2016, I committed to conducting a feasibility study and to extending free personal care to all those who require care and who are under the age of 65. I expect the study to report to me in the summer.
Finally, on social security and the disability benefits to be devolved to Scotland, I confirm that, when the powers for disability benefits transfer to this Parliament, we will ensure that a fast-track system is in place for people who are terminally ill, so that payments can get to those people as soon as possible.
In closing, it is absolutely clear to me that Gordon Aikman’s campaign has transformed care for people with MND. His huge achievements will have a practical, everyday impact on the lives of people with the condition and, indeed, other conditions. The credit for that lies absolutely with the tireless, selfless efforts of Gordon and everyone who worked with him.
It gives me great pleasure to move the motion in my name, and also to say that the work is not over. The commitment that I want to give to Gordon’s family, to his friends and to the chamber, is that we will strive to continue to make the lives of people with MND better and, importantly, to make sure that we keep his family informed of the progress being made.
That the Parliament recognises the outstanding contribution of Gordon Aikman in improving care, services and research in Motor Neurone Disease (MND); pays tribute to his work to raise awareness of MND and the challenges faced by those who live with debilitating neurological conditions; recognises the many committed individuals who continue to work on improving quality of life for people who live with MND, and believes that the legacy of Gordon’s Fightback campaign will bring benefit and comfort to the lives of people with MND, and their loved ones, for many years to come.15:28
I thank the Government and the cabinet secretary for using the debate time this afternoon to talk about Gordon’s life and work. I know that that is very much appreciated by his family, who sit in the public gallery behind the cabinet secretary, and, indeed, many of his friends, who I can see across the length and breadth of the gallery. I genuinely thank the cabinet secretary for that.
I paid a very personal tribute to my very close friend, Gordon Aikman, at his funeral and memorial on Saturday. I am not going to do that again today. He would not want me to. He would think that if he had the whole Parliament at his disposal, and the ears of all these politicians, I should talk about what he did, but, perhaps most importantly, about what he might have liked to see happen next. I intend to talk a little bit about two of his campaign achievements and then about what else the Government could do to support people with MND. If I have any time left after that, I would like to say a little bit about what he taught me in general about living with a disability in Scotland today.
The first thing that is worth recognising—the cabinet secretary referred to this—is the work that Gordon did to guarantee people a right to communication aids. In particular, the cabinet secretary referenced the use of voice-banking technology. She might not be aware, though, that every single party leader in the chamber actually went and recorded their voices at the Anne Rowling clinic in Edinburgh, for an hour. Just speaking and reading excerpts from the Herald for an hour can allow the results to be synthesised to give people their voices back. The more voices that the clinic has—especially with particular accents or dialects—the more realistic those voices can be when they are given back. It does, however, mean that it is possible for the voices of all the party leaders to be merged into one voice and to be given to an individual. [Laughter.] Think about the power or indeed the trouble that could be caused with that capacity; I know that Gordon certainly contemplated the benefits if that could have been put to use in his time.
The second most significant of his campaign achievements was around doubling the number of MND nurses in Scotland. Until I spoke to Gordon about his campaign, I did not fully understand what MND nurses actually do. It is worth taking a moment to reflect on that. I thought that they were just really good at cleaning feeding tubes or really good at fixing ventilators. No, no, no—it is much bigger and much more thorough than that. I have an example to share with members in the chamber.
In Edinburgh, in NHS Lothian, just a few months ago, it was possible that somebody who had MND and required a feeding tube—because quite often MND takes away someone’s muscle capacity to chew food or it attacks their stomach and they need to have a feeding tube inserted—might have to wait 22 weeks for that procedure. Very often, in the passage of that 22 weeks, an individual’s ability to be well enough to undergo that procedure would deteriorate. They would be too sick for the anaesthetic. They therefore could not get the feeding tube that they needed to extend their life.
An MND specialist nurse studied the whole process of trying to access that healthcare and realised that the blockage that led to that 22 week wait was because of the wait to see a nutritionist; that was the only problem. The waiting time did not need to be 22 weeks. If the wait for the nutritionist could be speeded up, the total waiting time could be crunched right down to two or three weeks.
Rather than speeding up the time to see a nutritionist, the MND specialist nurse said, “Why don’t we just train all the MND specialist nurses to give that nutritional information?” That way, the individual would not have to see a nutritionist at all. As a consequence, people no longer need to wait 22 weeks to get a feeding tube—they wait two weeks. That is a material difference that having more MND specialist nurses has made. It is important to recognise that not only is that increasing and improving the care for people living with MND, it is saving the NHS a tremendous amount of money. If we think about how many other conditions there are in Scotland where we argue the case for specialist nurses, what a difference it could make if we applied that preventative approach across the board.
Gordon gave me a passionate interest in MND and in trying to understand it, although very few people do understand it because we do not know why people get it and we do not know how to cure it. Wherever I travelled during the last Scottish Parliament election campaign, I tried to seek out MND sufferers. I met one woman when I was in the Western Isles, who was called Margie MacLeod. I do not know whether Alasdair Allan is in the chamber, but he may be familiar with her. She has sadly passed away since I met her during the election campaign last year. The Western Isles have a close affiliation with MND—in fact, the MND association in Scotland was founded by a guy called John Macleod, who was a Strathclyde police officer. He founded it in 1981 after becoming ill with the disease and it is much to his credit that that work continues to this day. Margie would tell me about how difficult it was to live with MND in the Western Isles. She would often have to travel to Glasgow to get treatment. Whether she could get that treatment or that service depended on how well she was that day.
Now, people see their MND nurse in the Western Isles far more regularly. There is an MND nurse in Orkney; there is an MND nurse in Shetland. There are 10 people in Shetland with MND and they have a nurse who is able to help them live their lives because Gordon argued for that, this Parliament listened to him, and those roles are now in place.
I will say to the cabinet secretary, however, that there are still problems in the islands in relation to MND patients being able to access services around ventilation. They still have to travel to the mainland to be assessed for their ventilators and if they are not well enough to do that, they cannot get that help. If the cabinet secretary could ask her civil servants to examine other means by which people could get that help, that would be greatly appreciated.
In the time that I have, I will put two more challenges to the Scottish Government. I became very aware, following Gordon’s campaign, that we have a big problem with the information technology system in the NHS. Primary care does not talk to secondary care, which is a real problem, because an MND nurse who is with a patient cannot update the patient’s medical file. The nurse has to write up whatever the latest developments are and send the information to the patient’s general practitioner. Only the GP can put the information on the computer. If that does not happen fast enough and that MND patient gets ill, they can end up in hospital but the latest information is not on those computer systems for the doctors to respond to. Surely in an age when we can get a man on the moon, we can have a care system where one IT system can speak to the other IT system. I know that the Government is looking at that issue but perhaps it needs to increase pressure around it.
The worst scenario in that particular situation, cabinet secretary, is that people can put together palliative care plans—plans on how they would like to die—with their MND nurse but the plans do not get to the GP. Suddenly there is a crisis, an ambulance is called, and a patient ends up in the intensive care unit and dies in a hospital bed when there is a palliative care plan that allows them to die at home, the way that they want to. That is all because the computer says no. Surely we can do better than that?
The final challenge that I would put to the Scottish Government is about ambulances. Currently not every ambulance in Scotland has a key information summary, or KIS, system built in, so not every ambulance driver can look up a patient’s name and see the information that is available about their medical history. I know that the Government has plans to increase that scheme, but could the cabinet secretary tell us today by what date the Government would like to ensure that every single ambulance has that KIS system?
Finally, I have one thing to say about disability. Gordon taught me a lot during the time that he was ill, and I reflected on much of that in the speech that I gave at his funeral on Saturday. However, one thing that I did not manage to get in was about his attitude to disability and how politicians talk about disability. Rather than paraphrase what he said, I will just read it out. I will end after this direct quote of an article from The Sunday Times, which Gordon wrote in the context of the Paralympics:
“And while branding Paralympians as ‘superhuman’ might seem positive, it unhelpfully suggests success equals beating disability. It paints a partial, rose-tinted picture of what it really means to be disabled. The reality is all disabled people are forced to be superhuman—Paralympian or not—because of the inaccessible world and anti-disabled attitudes we must battle every day simply to exist. The taxi driver who refuses to pick you up because you are in a wheelchair. The restaurant up a flight of stairs. The pub with no accessible loo. Day after day, that takes record-breaking resilience.
It is time for a new narrative. We get the body we are given and no amount of positive thinking or screaming “Yes I can” will change that—boy, I wish it could.
Let’s stop portraying disability as something that has to be conquered. Let’s remember that it takes superhuman levels of strength to accept what you cannot do. And let’s start a new story where success comes in many shapes and forms, and where the onus is on society to tear down the barriers that disable us.”
What a great challenge for the Parliament.
I move amendment S5M-04122.1, to insert at end:
“; recognises that MND is a terminal illness for which there is no cure, and believes that there is every possibility that a cure could be found by ground-breaking clinicians and researchers in Scotland, working collaboratively with experts across the globe.”
I am not allowed to clap, but I am clapping.15:36
It is a special honour to take part in this debate and, at the outset, I inform members that the Scottish Conservatives will support the Government motion and the Labour amendment.
I start in the same vein as Shona Robison and Kezia Dugdale by paying tribute to Gordon Aikman, and offering my sincere condolences to his family. I should say early on that, regretfully, I never had the opportunity to meet Gordon, either during his time working in Parliament, on the better together campaign, or in more recent years when he worked for MND Scotland. I know that my colleague Miles Briggs knew Gordon and will offer more personal reflections on him as an individual.
Unlike other colleagues across the chamber, who I am sure will share wonderful memories of Gordon today, I do not have any such tales to tell. I am very sorry that I never met him, because he was clearly a quite remarkable person. However, those of us who did not know him in person knew him in other ways. First, we knew him in terms of the incredible work that he carried out for motor neurone disease. Secondly, we knew him through his writing, notably his column in The Sunday Times.
As many have noted, after his diagnosis, Gordon Aikman channelled his energy into an astonishing and dynamic campaign. His work for MND is well known but it bears repeating. His fundraising to support research, his raising awareness of the condition and his influencing the direction of Government policy were all major achievements.
Gordon raised more than £500,000 to support research into the condition. Let us think about that. He raised half a million pounds single-handedly. He effected real change and did so in a powerful and inspirational manner. We are lucky to be able to serve our constituents and be in a position to influence change, but when all is said and done, when we are long gone from this place and our contributions are measured and weighed up, I doubt whether any of us will achieve so much in such a short space of time as he did.
Just as striking were Gordon Aikman’s monthly columns for The Sunday Times, in which he documented his life with MND with searing honesty. He was never sentimental and he showed an endearing good humour. That was where many of us saw at first hand a quality of his that perhaps underscored much of his work—his courage, which shone through every word, phrase, and sentence.
Notwithstanding his terminal diagnosis, Gordon wrote freely of his fears and his feelings. He wrote of his fierce sense of independence and how he mourned its loss. He wrote of his everyday trials and the challenges that were thrown up by the decline in his faculties. Most powerfully of all, he wrote of his impending death, how often he thought about it, and how it might affect his loved ones. He wrote that death was no longer something that he feared and that death was what gives life meaning—it gave him a chance to “conclude” his life. I know that his husband, Joe Pike, said at Gordon’s funeral that Gordon taught him and others how to live. However, in his graceful writing, and in the example he set to strangers like me, I would venture that Gordon Aikman also taught us how to die.
I want to focus momentarily on motor neurone disease itself, and to highlight the challenges that are faced by people with MND and what needs to be done by the Scottish Government to ensure that everyone in Scotland who lives with the condition gets the right support, regardless of circumstance or location.
We know that there are more than 450 people in Scotland living with the disease and that, typically, there are more than 160 new cases of MND each year. What more can be done? Gordon’s fightback campaign has commendably stated that it will continue in Gordon’s memory, with the purpose of trying to transform care for people with MND and of funding a cure.
In its briefing for this debate, MND Scotland identifies two immediate areas of focus. It talks about the need for a fast-track benefits system, which I note that the cabinet secretary has accepted; and about the need for clinical trials to be brought to Scotland so that we can initiate a research revolution in MND here, bringing together academia, pharmaceutical companies and Government in order to realise that.
There are other points that the Government could consider. I ask the Scottish Government to see what it can do to move neurological conditions higher up the list of priorities of the new integration joint boards—recently, the cross-party group in the Scottish Parliament on MS learned that neurological conditions are some way down the pecking order for IJBs. In my view, they deserve to have greater prominence.
In closing, it is right to return to the man himself. Gordon wrote that, when our physical existence is over, we need not be, and that we can live on in the minds of those we love. In a similar vein, I can do no better than to end with the words of Aleksandr Solzhenitsyn, who wrote:
“Some are bound to die young. By dying young a person stays young in people’s memory. If he burns brightly before he dies, his brightness shines for all time.”
We move to the open debate. We are a little tight for time, so I ask for speeches of up to five minutes.15:42
I offer my sincerest condolences to Joe and the family and friends of Gordon Aikman. I offer these mere words as a comfort to them as a daughter who has loved and lost someone dear to me to motor neurone disease. No words can ever express enough the depth of our grief, but please know that these words are filled with the experience of a family who face every day with the knowledge that this terrible disease has taken our loved one. My family share our grief with Gordon’s family and friends.
Many in this chamber are familiar with my MND story. At the age of nine, I was faced with the reality that my big, strong, funny, talented singer of a dad—an iron moulder to trade—had a terminal illness. He was 45 years old, my mum was 37 and there were four of us kids in the house. The immediate impact was drastic. After a short period, my dad had to give up work. He was the breadwinner in our house, as my mum had had to give up her job when she had her kids—those were the days when that was what people did. My family went through a range of emotions: loss, anger, fear, anxiety and heartbreak.
The benefits system then—as now—was almost impenetrable. With our family losing a significant amount of income, my mum went to work at night and we looked after my dad when she was out. What a huge difference a fast-track benefits system would have made to my family at that very difficult time. I have campaigned along with Gordon and MND Scotland for such a system, so it was amazing to hear the cabinet secretary’s words today.
In difficult times such as the ones that we are discussing, the last thing that a family needs is to spend those last precious days fighting for the dignity of having enough to live on. Automatic lifelong awards can make a huge difference to those families, and I urge the Scottish Government to ensure that that is realised when the benefits that will be devolved to this place come here.
The amazing work of Professor Chandran and his inspiring team at the Euan MacDonald research centre brings us new and exciting breakthroughs, not just in the scientific field but in improved care for people with MND. That better care needs to be delivered by MND-qualified nurses, and the Scottish Government’s commitment to funding those nurses is welcome. However, I ask the Government not to stop at a doubling of the numbers and to think about training more. I urge it to listen to what Kezia Dugdale said about the value of an MND-qualified nurse.
Another aspect of MND is losing your voice, which is a huge part of your personality—that is a huge blow. I have never been prouder of this place than when we enabled the voice bank to be housed here. It was supposed to be here for only a month, but so many names came forward that it was here for four months. There are many different voices in this place, and we all like to hear the sound of our own voice, but the benefit that it can give to someone who is losing their voice is immeasurable.
When it comes to scientific research, we need to have the best and most creative minds working together to advance understanding and eventually find a cure for this horrible disease. That is why the Scottish Government-funded PhD places and the fellowship programme are so important. The more minds that there are working on the research, the bigger chance there is of finding a cure. The Gordon Aikman scholarship adds brilliantly to that aim.
Finally, I will say a bit more about Gordon and the many inspiring people I know who campaign every day for MND Scotland. Gordon brought us hope, which is a very powerful motivator. It can move mountains, but more importantly it can move hearts. It moved my family, and many members in the chamber, to walk on fire, abseil off buildings and take the ice-bucket challenge, and it can move other people to do amazing things in order to raise funds.
Hope can always push people that wee bit harder, and I believe that we have moved the Government to make some changes. Transformational changes to people’s lives after their diagnosis with MND—some of which are very short, maybe only 14 months—will ensure that the last precious days they have with their families are filled with love and quality time rather than worry and despair.
That is Gordon Aikman’s legacy: hope. It is hope for the people with MND, for the families that are supporting them and for my family, and for Joe and Gordon’s family, who are left behind to carry on the fight to find a cure, make nursing care better and ensure that people have financial dignity.
Hope can move mountains: all we have to do is move a Government, and we have pushed it in the right direction. I ask the Government, in memory of Gordon Aikman and all our loved ones whom we have lost to MND, to be moved to take those actions.15:47
I am glad to have the opportunity to speak today, and I commend the Government for changing the subject of today’s debate. It is a privilege to be involved in some small way in recognising the incredible achievements of Gordon Aikman, and I am pleased to speak about the drive to defeat the disease that took him from his friends and family all too soon. In a few short years, Gordon Aikman achieved more meaningful change in Scotland than perhaps most of us are likely to do during our entire careers in the chamber.
Gordon Aikman’s legacy is not only the vastly improved support for other MND sufferers throughout Scotland; the more than £0.5 million that he raised; or even the knowledge that, thanks to his tireless campaigning for greater access to voice equipment, MND patients are no longer faced with becoming trapped inside their own bodies, unable to communicate with those closest to them. Gordon did all that, but he did something else too. He made us ask ourselves whether we were doing enough for people with MND and, in comparison to a man who chose to lead a campaign for a cure knowing that it would come too late for him, we found ourselves wanting.
People around the world associate MND with the ice-bucket challenge. It is hard to believe that the act of pouring buckets of freezing-cold water over each other could change the world, but it has. In excess of $100 million was raised, and already that money has been turned into results. Scientists recently discovered a gene that is linked to MND, which takes us one step closer to a cure—maybe not today, but, I hope, not too far in the future.
In Scotland, however, a bucket of freezing water was not the only thing that woke us up to the damage that MND does. We had Gordon Aikman. There are very few people in this world who can change the dynamic and feeling of a room when they come into it. It is a rare gift, and it is one that Gordon Aikman definitely had. He had the ability to make politicians and Governments listen and take heed—one of his many talents that, I have to say, I rather envy.
I was not fortunate enough to know Gordon personally, although many in the chamber did. Despite never having met him, I, like so many, admired him greatly. Anyone who can be given the news that his lifespan can most probably be measured in months and who chooses not only to fight the condition but to fight for his fellow MND sufferers deserves our admiration and respect.
My knowledge of Gordon comes mostly from reading his straight-talking Sunday Times column chronicling his disease and from the testimonials written in the past few days by those nearest to him. I might be wrong but I imagine that, if Gordon, who himself confessed to being “ruthlessly rational”, were still with us, he would be demanding that we stop talking about how we admire and respect him and his achievements and instead start talking about how we can carry on what he started.
One thing that always struck me about Gordon’s campaign was the name that he chose—Gordon’s fightback. There are many other names that he could have chosen, such as Gordon’s appeal or Gordon’s MND campaign, but he chose the word “fightback”. It was a good choice. He did not just fight back against his own disease; he fought back against a lack of support, against a lack of public knowledge and against anyone who told him that something could not be done. Gordon began this fightback, but it is ours to finish.
Motor neurone disease and a whole host of other genetic neurodegenerative conditions such as Huntington’s disease have blighted lives for too long. Now, for the first time, our science and technology have reached a point where the possibility of defeating those diseases is within our grasp. Professor Colin Blakemore from the University of Oxford has said:
“The vision of a world free from MND is hugely ambitious, but I agree with the MND Association that the skill and dedication of scientists make this goal achievable in our lifetime.”
I believe that we in the Parliament have a responsibility to do whatever we can to support that goal, not only for the end result but for the potential discoveries and knowledge that we will accrue along the way.
In this chamber, there will be days when we agree on nothing, but today is not one of those days. Gordon Aikman’s greatest legacy is the commitment and determination that we are hearing in the chamber to defeat MND once and for all. Gordon Aikman’s resolute determination has brought the cure for MND that much closer and I have no doubt that we in the Parliament and others across Scotland and globally will continue the fightback. One day, I hope within my lifetime, we will not be talking about Gordon’s fightback any more; we will be talking about his victory.15:52
I offer my deepest condolences to Gordon Aikman’s family and friends. The debate is an opportunity to reflect on Gordon’s inspiring and selfless campaign. He generated unprecedented awareness of the challenges that are faced by those who live with debilitating neurological conditions, and he kept motor neurone disease in the public eye. For people living with the condition, that has surely helped to challenge the isolation of MND. The legacy of his campaign will make a huge difference to generations to come by transforming the way in which people are treated.
I know that the debate is a tribute to Gordon Aikman and the legacy that he left but, as a keen rugby fan, I must also pay tribute to South African scrum half Joost van der Westhuizen, who died this month of motor neurone disease, aged just 45. The 1995 world cup final was the most momentous game in the history of rugby union. It was the match that helped to unite Nelson Mandela’s South Africa, and at the heart of the Springboks’ victory was the scrum half Joost van der Westhuizen, who not only tackled Jonah Lomu in full flight—not many people have done that and survived—but gave the pass for the winning drop goal. As a player, he was supremely physical, and his diagnosis in 2011 absolutely shocked the rugby world and showed yet again just how indiscriminate the illness is.
We know that MND is a rapidly progressive and debilitating disease. It is cruel, relentless and indiscriminate, and currently there is no cure. Because it is rare and progresses so quickly, it has been difficult to raise awareness. In contrast, our progress in understanding the disease has been painfully slow. At least there is now one drug with a modest effect that slows progression and we have a better understanding of the multiple underlying genetic and environmental triggers. Many of the symptoms of MND can be helped with the proper combination of medical treatment, specialised equipment and nursing and psychological support.
As others have done, I want to highlight some of the really positive steps that the Scottish Government has taken, thanks to Gordon’s tireless campaigning. The first of those steps is the right to a voice. As others have pointed out, one of the worst aspects of MND is that patients lose their voice, and the statutory duty on ministers to secure communication equipment as well as funding for research into voice banking is helping to tackle that.
The second step is a living wage for carers. Tomorrow’s budget sets out an investment of £107 million to continue to support the delivery of the living wage for social care workers, in recognition of the invaluable contribution that they make.
The third step relates to specialist nurses. Thanks to Gordon’s campaign highlighting the lack of MND nurses, the Scottish Government funded the national health service to replace charity funding for MND nurses and to increase their number from six to 12.
Finally, on research funding, Gordon raised almost £0.5 million to help find a cure for MND, and the Scottish Government is also providing funding to deliver PhDs in neurological conditions. The PhDs offer a unique opportunity to develop an integrated national PhD training programme that recognises the shared underlying biological mechanisms in MND and multiple sclerosis, and they demonstrate that Scotland continues to lead the way in clinical research and innovation.
Medical science has long been dumbfounded by MND. Its cause is not known, but a huge amount of research is being carried out, and advances are being made in understanding the disease process and the way in which motor neurons function.
Gordon’s legacy will be long and lasting. He is no longer with us, but his campaign shows no signs of slowing. That, indeed, is a lasting tribute to him.15:56
I rise with a heavy heart to speak in the debate, which, with its many beautiful contributions from so many members, reflects the Parliament at its best. This is a proud moment; Gordon Aikman would have been proud, and I am sure that his family are.
As Kez Dugdale said, Gordon would not have wanted us to talk about him; he would have wanted us to talk about the issues. He would not have wanted us to talk about what we have done; he would have wanted us to talk about what we should do for the future. He would not have wanted us to focus on the past; he would very much have wanted us to focus on delivering for future generations.
I will touch on the future for a second. One of the most amazing things about Gordon was that, when he got the most tragic news, he did not focus on himself or on the past. Instead, he dedicated every moment of what remained of his life to campaigning for the future of others who would follow him.
On that note, we should say to his husband, Joe, and his wonderful family that we share their loss. Gordon was a loving man, a caring man, a happy man, a positive man and a man who—every single time I saw him, whether in person or in a picture—was always smiling. That is the way that we would all like to remember him.
Gordon was a fantastic colleague to have in the Labour Party—we were proud to say that he was one of us. I have often reflected on what a phenomenal parliamentarian—an MP or an MSP—he would have been and how much more he would have achieved, speaking up for people across the country.
The ice bucket challenge has been mentioned. One of my claims to fame will always be that I was one of the four people whom Gordon nominated to take the challenge, and my kids took great pleasure in pouring the bucket of ice over my head. Gordon and all the campaigners alongside him have helped to increase knowledge of MND and have put on record all the challenges that we continue to face in palliative care and the need for a greater focus on such care for the future.
We have already heard about some of the things that Gordon achieved in his all-too-short but absolutely remarkable life—a very full life, in which he delivered more than many people deliver in a lifetime. We have heard about Gordon’s fightback campaign, through which he raised £500,000 for MND Scotland; about the doubling of MND nurses, as well as the funding for them coming directly from the NHS; and about the securing of the legislation that guarantees people a right to a voice if they lose their own.
However, as many others have said, Gordon would have wanted us to focus on the future, which is why we should look at how we can continue to invest properly in new models of MND care, how we can bring clinical trials to Scotland, how we deal with MND and how we can have the fast tracking in the benefits system that the cabinet secretary outlined. On that point, I thank her for the tribute to Gordon that she said will exist in the form of further research in the years to follow. That is a fitting tribute to and legacy for a truly amazing man.
I will reflect for a moment on Kez Dugdale’s comments at the end of her speech about those who live with a disability. It is important that we all reflect on the basic, everyday things that we take for granted, such as stepping out of our homes; dropping our kids off at school; being able to walk, cycle or run; and accessing restaurants or bars. Many people with a disability have to plan for days ahead to be able to sit in a restaurant and have a meal with their family. If we can take one fundamental thing from today, it is that we must consider how we can support all those superhumans in their daily lives. Every single person with a disability is a superhuman, as Gordon Aikman said.
The reality is that the world is a poorer place without Gordon Aikman, but it is also a better place because of him.16:02
I thank the Government for scheduling the debate to allow Parliament to acknowledge the transformative and truly effective campaigning work of Gordon Aikman. The thoughts of the Scottish Greens are with Joe and Gordon’s family and friends, and we are pleased to support the motion and the amendment.
In the chamber, there can be a tendency to use—indeed, to overuse—hyperbolic positive language, sometimes inappropriately, but that is not a concern this afternoon, because Gordon Aikman deserves the fullest praise not just for what he achieved but for the way in which he went about it.
I most recently met Gordon in the Parliament’s garden lobby, where he was in his extremely well-used wheelchair, and we enjoyed a lively chat. It struck me that that was incredible, given that motor neurone disease progresses so quickly. As we have heard, more than half the people with that neurological condition die within 14 months of diagnosis. I cannot imagine how cruel and shocking that diagnosis must feel. Gordon spoke publicly and bravely about that aspect of the experience. In one article that I read, he commented on how innocuous his first symptoms seemed and how confusing it was to receive the initial diagnosis.
In her contribution at Gordon’s memorial service, the First Minister described an exhausting set of achievements and his contribution to public life, and today the cabinet secretary has left us in no doubt about his impact, which is rightly and deservedly to be marked with the creation of a new scholarship. What energy, what purpose and what strength of mind it must have taken to use his precious time to lead such a successful campaign. Kezia Dugdale’s eulogy was a beautiful tribute to Gordon as a person—to his joy, his energy and his tenacity.
The results of Gordon’s dedicated campaigning are tremendous—not least the funds that he raised to tackle the disease and lead research into it. He raised some £500,000 for MND Scotland, which will fund essential work towards finding a cure. As Kezia Dugdale’s amendment rightly points out, investing in scientific research is essential. I am glad that the Scottish Government has committed funding to at least 16 PhD studentships in neurological research, because training and developing future scientists is vital to our medical research landscape, and I welcome all such steps.
Although research into a cure for this life-limiting illness should give us all hope, we must ensure that those who are living with MND are supported well and enabled to make the most of the irreplaceable time that they have with their families and friends. As we have heard, securing the living wage for carers was one of the aims of Gordon’s fightback. Sadly, our society often places too little value on the incredible work that carers do day in, day out, but Gordon’s fightback made the value of that caring very clear. Gordon said:
“My carers not only make my life liveable, but make my life worth living. They are: my arms, my legs, my independence. It is only right that carers get paid a Living Wage for the life-changing work they do”.
I am glad that the Government has introduced funding to support the living wage for carers. Gordon played no small part in the success of that campaign. It is now incumbent on all of us in the Parliament to take the most care to ensure that the living wage is implemented fully and fairly, that it benefits all care workers and that we do not stop fighting for better working conditions, professional opportunities and recognition for carers.
Gordon’s campaign also focused on the need for better specialist medical support for people with MND and for improved palliative care. One of his most outstanding achievements was to secure the Scottish Government’s commitment to double the number of motor neurone disease nurses and to fund them through the NHS, which means that patients will be able to see a specialist nurse more often.
Kezia Dugdale and Christina McKelvie spoke about the difference that MND nurses make, as did many other colleagues. Specialist nurses help to plan essential care as, sadly, the symptoms of the neurological disease become severe all too quickly and palliative care can become important very soon. Introducing appropriate palliative care early, which means leading meaningful and difficult conversations about people’s true preferences for treatment almost from the day of diagnosis, can do much to support people throughout their illness.
We need not only to fund medical research and social care workers but to build a culture that is more understanding and is more open and willing to discuss death and dying. Gordon’s campaign was a great step forward in that regard. The success of his fightback can be measured not only in the funds that he raised and in the huge changes to policy that he helped to lead but in his reflective words and honesty about his condition and experiences.
Gordon’s fightback has a lasting legacy. Let us ensure that we build on Gordon’s incredible work with urgency and commitment. That is the least that we can do to properly honour the memory of that unique young man.16:07
It is my great privilege to offer the Liberal Democrats’ support for the Government motion and the Labour amendment. We offer our condolences to Gordon’s family and to everyone who is in the public gallery to pay their respects to that fine man.
I did not know Gordon very well and I met him only a few times. The time that I remember most was when I was wearing a ridiculous string vest and inappropriate footwear because I was about to run 2 miles on a treadmill, through the fug of a festive hangover, to build publicity for a Christmas day marathon that our mutual friend Rob Shorthouse was running in aid of MND Scotland. That one encounter sums up Gordon’s impact on Scottish society: he had an uncanny ability to talk people into things that they would not have otherwise done voluntarily. He was also able to pull off events and stunts at every level of Scottish society to raise awareness about his condition and the needs of those who suffered with him.
While Gordon’s body was failing him, he displayed a strength of character that represents the finest qualities of our people and, by so doing, he put motor neurone disease and the tragedy that it inflicts on more than 400 Scots each year on to household agendas and ensured that the subject was rarely out of the headlines.
Gordon revealed his diagnosis around the time of the international ice bucket challenge and, almost overnight, he took that as his own. Around Scotland, people took up the challenge for MND, such was their affection for Gordon, who had—rightly—become the poster boy for the campaign. The campaign and his personal journey raised more than £500,000 and touched the lives and hearts of millions of people—not solely through his crusade to raise awareness and bring resources to bear in the fight against motor neurone disease but through his dignified acceptance of the course that his illness took and its ultimate destination. He owned that reality, but he never let it define him.
It shows the measure of the man that, at the age of 29, he wrote:
“I don’t want pity ... It’ll be too late for me, but we must—and with your help we will—find a cure for the next generation.”
That speaks volumes about his character and his uncommon grace in the face of his own mortality. His example is a continuing comfort, not just to people in the MND community but to many people who are confronted with the reality of a diagnosis of a terminal illness of any kind.
As well as showing the bravery that is reflected in those words, Gordon showed a steely determination to deliver on the commitment to leave a legacy that would ensure that, when someone receives a diagnosis of motor neurone disease in the future, they might expect to beat the disease. To that end, beyond the colossal impact of his fundraising achievements, he captured the Scottish Government’s attention. To its credit, the Government has delivered a range of measures—particularly on MND nurses, as we have heard. I thank the cabinet secretary for the additional commitments that she made in opening the debate.
Motor neurone disease is classless and indiscriminate. It shreds function in the brain and spinal cord, and it does so with voracious and horrific speed. Until Gordon launched his fightback campaign, there was fairly low awareness of the condition in Scottish culture. His legacy is to have helped to reverse that deficit in public knowledge and to ensure that—again thanks to the good offices of the Scottish Government—research will take place to close the gaps in our clinical and scientific understanding of the condition. We heard about the PhDs and scholarships that will do that.
When I think of all that Gordon achieved, prior to and in the months following his diagnosis, I am reminded of the words of Bobby Kennedy, who said:
“Few will have the greatness to bend history; but each of us can work to change a small portion of the events ... It is from numberless diverse acts of courage ... that human history is thus shaped.”
Although his physical capacity was diminished, Gordon’s strength shaped events and will help to bring hope to and shape the futures of MND sufferers everywhere. Gordon’s life was all too short, but it was utterly inspiring, and he leaves the world and the cause for which he fought in better shape than he found them.
My thoughts and those of my party are with the people whom he leaves behind, some of whom are gathered here to celebrate his life. In particular, my thoughts are with his husband, Joe, and with my friends and colleagues in the Labour Party.16:12
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.16:16
I have been moved by the debate so far. I did not know Gordon personally but, from hearing the words of his colleagues and other members in the chamber, I would say that he was a remarkable individual. In particular, I commend Kezia Dugdale for her speech and for quoting Gordon’s comments at the end of it. As someone who is now obviously “superhuman”, I expect the chamber to listen even more carefully.
MND is devastating not only for the person who is diagnosed with it but for the husband, the wife, the mum, the dad, the son, the friend and the good neighbour—people who do not recognise themselves as carers but who look after someone in their family or a friend who has that disability.
Without the right support, the personal cost of caring can be high, with many carers experiencing poor health and disadvantage. That was brought into stark reality for me when I was waiting to collect a prescription at a local chemist’s just a few weeks ago. I overheard an MND nurse explaining to the pharmacist that, normally, the patient’s wife would collect his prescription but she was having a crisis that day, so the nurse had stepped in to offer some practical support. I often think about that lady and try to imagine what her life is like as her husband’s prognosis gets worse, as the number of activities that they would normally share starts to decrease and as she has to take on additional responsibility for his care and help him with the most basic things such as dressing, feeding and drinking. I imagine that, at times, the stress must be unbearable for that individual.
Gordon spoke of carers making his life not only liveable but worth living. In his articles, he referred to carers as his arms and legs—his independence. I am pleased that, as a result of his campaign, carers are now paid a living wage. In the past, the Scottish Conservatives argued for a national carers break guarantee to be introduced, which would guarantee a fully funded flexible week of respite for any carer who cared for more than 50 hours a week. Previously, there was no provision in place for local authorities to provide time away for unpaid carers, although respite is consistently identified by carers themselves as the most helpful form of support.
In early February 2016, the Parliament passed the landmark Carers (Scotland) Bill. As a consequence of a former colleague’s amendment to the bill, local authorities will provide short breaks for those who look after others. The new legislation will see unpaid carers given much-needed time away, bringing benefits for quality of life, wellbeing and family relationships. As someone who has a carer who looks after them—and who could not be here without her care—I know how important that will be for all those with such a disability.
A person’s care plan needs to be agreed as soon as possible. It will involve all parts of local services, including the NHS. Even with council cuts, we must seek to protect services and to make sure that they work for each family and each individual.
Gordon’s life was taken far too soon by this cruel, horrible disease. His drive to fight for the rights of others will be a lasting legacy that is felt across not only this nation, but the whole of the UK and much further afield. As sufferers and carers, we thank Gordon for what he has done, and we pass on our deepest sympathy to his husband and family.16:21
I extend my condolences to Gordon’s husband, Joe, and to his friends and family. I was not Gordon’s friend. That was not by choice, and it is to my regret that I am also one of the people who did not know him when he was alive. However, I have heard the remarkable stories of this young man who was taken so tragically at the age of only 31.
As Gordon’s body failed him and his disease progressed, he never failed in his determination to leave a legacy that would improve the lives of other MND sufferers. His fightback was an incredible, selfless achievement.
Alex Cole-Hamilton and others have talked about the cruel, indiscriminate nature of the disease. Maree Todd mentioned Joost van der Westhuizen, who died so suddenly. Such deaths raise awareness of MND. I know that one of Gordon’s wishes was for people to understand the disease better, and it is important that we develop that understanding.
MND can strike anyone. In the United Kingdom, six people a day are diagnosed with motor neurone disease, but the rates of MND in the rest of the world are not readily understood. If we struggle here to cope with the rapidity of the disease’s progress and to care for people, we can only imagine how it must be for people in third world countries who are diagnosed. The lack of understanding, and the lack of palliative care, should concern us all.
Of course, there are remarkable people whose journey has not been representative of people with motor neurone disease, such as Stephen Hawking, who is a hero to many of us. The biopic film, “The Theory of Everything”, in which Eddie Redmayne documents Stephen Hawking’s early struggles and MND diagnosis, is particularly moving. I hope that the film has contributed to raising awareness of the disease.
As the rugby world was rocked by the death of Joost van der Westhuizen so, too, the football world was rocked by Fernando Ricksen’s diagnosis of MND. No one who saw the interview in which he revealed his diagnosis could fail to be moved. Like Gordon, he turned that diagnosis into something positive by founding a foundation to raise awareness and funding.
Euan MacDonald, another motor neurone disease sufferer, has turned his time to developing, with his sister, Kiki, Euan’s Guide, a website that addresses some of the issues related to living with disability that were important to Gordon. Euan’s Guide seeks to give advice to people about visiting attractions and areas in Scotland, removing some of people’s worries about not knowing what to expect, such as how accessible a venue will be and whether there will be accessible toilets. Euan’s Guide takes away some of the difficulties faced by people suffering illness and disability.
We all took part in the ice bucket challenge; although we lived to regret it, we raised lots of money, which is commendable. I draw attention to the work of my friend and colleague Christina McKelvie in this area. A few years ago, I sponsored her to do a fire walk to raise money for motor neurone disease; I am sure that there are many who would like to have held her feet to the fire more than I did—I suspect that Gordon might have been one of them.
No one who is close to me suffers from MND, but my sister Eileen suffers from multiple sclerosis. She is 10 years older than me and she still works as a GP. I thank Kezia Dugdale for making the point that the superheroes are not the people who climb Kilimanjaro, but those who every day cope with and accept the diseases that life has thrown at them. That is why I am particularly pleased that the Scottish Government is providing funding for additional PhDs on MND and MS—which are strongly linked—at Aberdeen, Dundee, Glasgow and St Andrews universities. I am very grateful to the Government for that. Dedicated funding is also being provided at the University of the West of Scotland. I am sure that that will show that Scotland is leading the way in finding a cure.
I was not Gordon’s friend, but Gordon is my friend. He is a friend to everyone who has been touched by MND, MS or other neurological conditions, because his work will work towards finding a cure. What a wonderful legacy to have left to Scotland.
We move to the closing speeches.16:26
Today’s motion reflects on an extraordinary life and an extraordinary campaign that achieved so much for people with motor neurone disease. Gordon Aikman’s response to his crushing diagnosis has resulted in better services for people who face that terrible illness.
Today we are discussing all that Gordon has achieved and the on-going legacy of his campaign—on which we have had many excellent and very considered speeches—but in these early days since losing him, all of us who knew him are still hurting at seeing someone with such ability, commitment, passion and warmth being lost to us at so young an age.
If members have read Gordon’s moving article about his experience of receiving the news of his diagnosis or spoke to him while he was waiting for confirmation of it, they will know just how devastated he was to get the news just as he was starting a new relationship with his husband Joe. For someone to receive that diagnosis and choose not to retreat into themselves and not to curl up and pretend that the nightmare was not happening was a huge achievement. Such a response would have been understandable, but that was not Gordon’s choice—that was not who he was—which is why people and families who are affected by MND are benefiting from his strong legacy today.
On Saturday at Gordon’s funeral, I sat next to one of the MND nurses. We had met before. She was one of the nurses who helped to care for my mum when she was diagnosed with MND. It had taken more than a year for us to get the diagnosis. It is a complex disease and, for many families, the road to diagnosis can be confusing and frustrating. Perhaps that is also the case for members of the medical profession, but it seemed that there needed to be a greater level of knowledge and awareness of the indicators of the condition. My mum was diagnosed not long after Gordon and, at the time, that nurse spoke to me about how stretched the service was and the importance of the work that Gordon was doing.
Gordon’s response tells us so much about the man he was, but it is important that, while we recognise what he did on MND, we do not lose sight of how talented and brilliant a person he was before his diagnosis. From being head boy at Kirkcaldy high school, he went on to the University of Edinburgh, where he was an activist who was committed to playing his part in fighting for a better society. That took him into student representation and, from there, to working here in the Parliament for my husband Richard Baker MSP. That was when I first met Gordon, and I often talked to him more than I did to Richard in the Parliament—he was a more reliable source of information on Richard’s diary than Richard was.
Gordon was a positive, funny and charming man. He had many friends in Parliament, and he was a good matchmaker. We all enjoyed his and Joe’s wedding, and seeing him as happy as he had made other people.
In his work for Richard, Gordon quickly established himself as intelligent, resourceful and tenacious. He was then poached away to work for the Labour group. He was happy to work late nights and for long hours, and he could achieve more in one day than many of us could achieve in a week. Every task was done efficiently, effectively and inventively. If some piece of research needed to be done or some important fact needed to be found out, he would find a way to get that information—as the Scottish Government well knows.
Gordon was a great communicator, writing speeches, columns or news releases. While everyone else was throwing out ideas haphazardly, he would put together a focused and effective campaign plan. Before his diagnosis, he was already one of the best political operatives of his generation. It was no surprise that he was promoted to such a senior position as director of policy in the better together campaign. It was a huge blow to the campaign when he could not continue in the role.
Gordon used all his experience, talent and skills to amazing effect in his fightback campaign but, if he had not developed MND, he would still have achieved great things in his life. He had a passion for life. Although the disease must have brought him pain and heartache, he took lots of pleasure, excitement and love from his life. I enjoyed seeing the many pictures on social media of his travel adventures—and woe betide the airline that stood in their way. Gordon turned on his campaigning skills and exposed an airline for its treatment of wheelchair users, showing that his commitment to positive change reached beyond specific MND issues to equality for all people with a disability.
This afternoon, we are celebrating a great campaigner, but we mourn the loss of a talented young man and a wonderful person; a great friend full of humour, fun and warmth; and a cherished husband, son, brother and uncle full of love for his family. He was also a political animal. He was part of the Labour family, and I know that he would have loved Kezia Dugdale’s speech this afternoon, which reflected much of who he was.
MND is a brutal and cruel disease that takes lives all too soon and leaves behind devastated families. Let us pay tribute to Gordon’s bravery and brilliance not only by improving services and support for people with MND, vital as those things are; let us also work together to ensure that there is far more research in the future to find a cure for the disease. Gordon also felt passionately about that. He raised significant sums of money to help with research for future generations.
With the scientific excellence that we have in Scotland and our world-leading research in life sciences, we should aspire to be the country that finds the cure for motor neurone disease. We should seek to lead in research to provide effective treatment. Scotland should be the place where we finally beat the disease. That would be a fitting tribute to Gordon. It would be fitting recognition of someone who achieved so much in such a short life.
For all of us who hold his memory dear and miss him so much, let us all pledge to work together in the Parliament to ensure that his campaign does not stop today, but goes on until we have realised the future that he fought so hard for.16:33
I, too, thank the Government for bringing forward this debate and for giving Parliament the opportunity to mark Gordon Aikman’s truly outstanding contribution. I send our love and thoughts to his husband, Joe, and his friends and family who are with us in the chamber.
I became friends with Gordon over 12 years ago when I started to work for a fellow North East Scotland MSP to Claire Baker’s husband, Richard. Gordon’s charisma and loving, cheeky and vibrant personality were infectious to anyone who met him. From listening to Claire’s moving tribute and speaking to many of Gordon’s other friends and political acquaintances at his funeral on Saturday, I know that it was that joie de vivre that made him such a wonderful person to know and be around.
The last time I met up with Gordon was at a silent auction in Stockbridge to raise funds for MND Scotland. Apart from trying to force me to bid for a hideous orange finger-knitted hat—luckily, I was outbid on that—he told his personal story to around 200 people who had gathered there, most of whom he did not know.
Gordon began his speech with just four words: “I’m dying—and fast.” There was not a dry eye in the room after he told his personal story, and it left everyone with the will to support Gordon and his campaigns. As with every time Gordon spoke about his MND, he was an inspiration to everyone who met him that evening.
As has been mentioned, Gordon knew how political decisions and the prioritisation by Government ministers of issues can transform people’s lives. Perhaps it is because MND came to take away Gordon’s life that so many people in Scotland with MND today, and for as long as there is no cure, will owe the advancement in research and improvement in services and care for MND to Gordon’s passionate and determined campaigning.
When I met Gordon in Parliament after the election to discuss some of his concerns surrounding the changes to home ventilation services in NHS Lothian, it was clear just how passionate he was to see and support improvements to care and nursing teams across Scotland for all life-limiting conditions. I had hoped to meet Gordon to discuss the Frank’s law campaign—sadly that meeting will not take place.
However, as Kezia Dugdale and Anas Sarwar have said, I know Gordon would not forgive me for letting the opportunity of this debate to pass without raising the plight of those individuals in our country who are under the age of 65 and require personal care for MND, dementia, Parkinson’s disease, MS and cancer.
Shockingly, in some parts of Scotland, terminally ill patients under the age of 65 are being charged for the help that they need with basic things such as washing, dressing and feeding themselves. That is despite clear guidance to local authorities that terminally ill patients should not be charged for personal care. As Christina McKelvie has mentioned, when a person is on their deathbed, worries about where they will find the money to pay for the vital care that they need are the last thing that they or their loved ones should have on their minds.
I very much welcome the fact that the cabinet secretary has agreed that the feasibility study on extending free personal care to people under 65 who have been diagnosed with dementia will be widened to include all medical conditions. I look forward to the study being completed and published in the summer. We on the Conservative benches will work positively with ministers, as I know will other parties in the chamber, to take forward the policies that we need to end the current unacceptable situation.
The previous session of Parliament was dominated by the debate over the constitution—a campaign that Gordon was at the heart of before he was diagnosed with MND. That campaign and debate not only divided our country but saw a huge amount of political time and political energy used on both sides of the argument. This fifth session of Parliament can and should be about progressing policies together to improve the lives of the people whom we serve, such as Frank’s law and other policies that can transform people’s lives.
Like members, I feel privileged to have known Gordon. I will never quite comprehend how, at the age of just 31 and after receiving what amounted to a death sentence, he managed to be the amazing person that he was right to the end of his life. He undertook his three-year battle with MND and, at the same time, focused his energy and efforts on raising funds and awareness for MND Scotland. For those who have not already donated to Gordon’s fightback, I hope that they visit the website and encourage others to do so. His mission statement is what should inspire all of our work in the Parliament—Alex Cole-Hamilton has already mentioned some of it:
“I don’t want pity. All I want is for you to take action to help fund a cure and fight for better care for people with MND.
It’ll be too late for me, but we must—and with your help we will—find a cure for the next generation.
With your help I can turn a negative into a positive.”
Gordon’s legacy is one that he will never truly know. For me as a friend, and I know for colleagues across the Parliament, he will go on inspiring the work that we do as MSPs for the rest of our own lives.16:39
It is an honour to be part of today’s debate to recognise Gordon Aikman’s work and achievements. Based on the contributions from members that we have listened to this afternoon, it is clear how much of an inspiration he was.
Like some of the speakers today, I never met Gordon, but I was privileged to meet his family and husband today. I pay tribute to their courage and strength in being here today, at a time that must still be incredibly raw for them, as it is for all who knew and loved Gordon and continue to miss him terribly.
Today’s debate has seen the Parliament at its strongest—when we put to the side the baggage of party politics and unite with a voice determined to do what motivated us all to get involved in politics and what inspired Gordon to do so: to make life better, to make our country better and to make a difference. In each and every contribution, from across each and every party, we have heard passion, commitment and powerful personal testimonies.
Gordon made a huge difference. In her beautiful article about him, Kezia Dugdale wrote that, when he was first diagnosed with MND, he was clear that he could respond in one of two ways: to sit down or to stand up and fight. For Gordon, she wrote, there was only ever one option. That spirit—that tenacity and strength—was truly inspirational.
That is why the Scottish Government is proud to have worked with Gordon and his fellow campaigners to deliver the pledges that he set out in his campaign to improve MND services and research. We are honoured to have played our part in helping to achieve some of the goals that he set—not for his own sake but to make life better for others. We have invested an extra £2.5 million annually in specialist nursing. We have doubled the number of MND specialist nurses across the country and ensured that all of them are now funded by the NHS. We have legislated to give a statutory right to communication equipment and support to give a voice to people who do not have a voice or are at risk of losing it. We are paying a real living wage to social care workers, and we are investing in MND research. Over the next three years, there will be six new MND-dedicated PhD posts in our universities.
Although it is always good for a Government to have a list of actions that are being delivered, and that is always useful for a debate, the contributions by Kezia Dugdale, Christina McKelvie and Claire Baker brought to life what those improvements mean—whether that is the tangible and material difference of what specialist nurses have brought to the speed of accessing feeding tubes, which Kezia Dugdale described, or being able to go back to the nine-year-old Christina McKelvie and say to her mum and her family that we will fast-track the help that they need, and we will do it as quickly as we can. We cannot go back in time for Christina—or for too many others—but today’s debate and the Government’s actions show our resolve to do our very best to make improvements.
I also want to thank Claire Baker for her bravery in describing so fully what her family are coming to terms with. I have worked with Claire for a number of years through education committees and we have shared stories about what our wee kids are up to and what they are doing at school. I thank her very much for being so brave in disclosing so much about what she is going through at this time.
However, we will not stop with the actions that we are taking forward. We cannot be content with the progress that is being made. That is why we are creating the scholarship programme—to commemorate Gordon’s contribution to improving the provision of specialist care and research for those with MND. We will provide £25,000 a year to support individuals and professionals to develop, implement and evaluate practical interventions to improve the quality of life of people who are affected by the condition. The scholarship programme will be administered by the nursing, midwifery and allied health professionals research unit at the University of Stirling. Those who are awarded a scholarship will be hosted in the Euan MacDonald centre at the University of Edinburgh. Euan MacDonald was another inspirational figure who did so much to improve the lives of people living with MND and to improve research.
Of course, Gordon was an advocate for people with MND, but his impact went far beyond MND and spread into creating improvements for other neurological conditions. As George Adam has made clear in his comments, and from what I know Stacey, his wife, would demand of us, we need to continue to work on a number of fronts to make things better for people with all neurological conditions, including MS. I also thank Clare Adamson for bringing her personal experience of MS to the chamber and the debate today.
We have also provided funding to and worked with the Scottish Huntington’s Association to develop a national framework for the care of those who are diagnosed with Huntington’s disease. While that work is still being developed, there has been much positive feedback, particularly from other third sector organisations that represent people with a range of neurological conditions. I look forward to receiving updates on the progress of that work.
The minister will know that Gordon would encourage me to push her just a little further on some of the issues that I mentioned in my speech. Perhaps she is coming to this but, if she is not able to address it today, will she write to me specifically about the information technology problems that I raised in my speech and, separately, about ensuring that we have the KIS service in all ambulances?
I was coming to that. I was also going to say that I will come back to the member with further clarity on that. I will perhaps jump ahead and say that we are making progress on IT systems and on e-records. I understand that KIS and the emergency care summary—ECS—system have been available in all ambulances since last year. I will confirm that to her in writing, but I hope that it gives some reassurance that significant progress has been made on the points that she raised.
I recently had a meeting with Epilepsy Scotland in the Parliament at which we discussed access to social security for people with epilepsy. Since the meeting, we have awarded funding to Epilepsy Scotland to support the development of a benefits advice service that is specifically designed to support people who live with epilepsy. It is hoped that the service will be operational later this year.
Our national advisory committee for neurological conditions is looking at models of care that incorporate all the aims of Gordon’s campaign—person-centred care and support, specialist care provided by skilled nurses, therapists, doctors and care teams, access to specialist services, and opportunities to participate in research into new treatments. I have asked the committee to report to me on progress in all those areas.
Maree Todd and Clare Adamson also mentioned how MND has robbed the world of sport, with the tragic loss of Joost van der Westhuizen, and I understand that Rangers fans have raised funds to help with a movie about the football star Fernando Ricksen’s current battle with MND. They hope to show it in Scotland. I hope that all the work that Fernando Ricksen is carrying out will continue to raise the profile of the condition.
I offer my thanks to members for their contributions to the debate and I again offer condolences to Gordon’s husband, Joe, and his family, friends and supporters who are in the public gallery. We will remain resolute in our commitment to make good on achieving Gordon’s aim of finding a cure and we will continue to look at what we can do better—how we should transform and improve care and how we can equip ourselves to deliver even better health and social care services in the future for those who live with MND and other neurological conditions.
Finally, I just want to say—rest in peace, Gordon, but please know that you are remembered in all our hearts and that you have made Scotland a better place. [Applause.]