 The next item of business is a debate on motion 4122 in the name of Shona Robison on motor neuron disease, Gordon's fight back. Can I invite members who wish to speak in this debate to press their request to speak buttons now? I call on Shona Robison to speak to and move the motion. Cabinet Secretary, 10 minutes are there abouts please. Thank you, Presiding Officer. Can I just start by moving the motion in my name and welcome the opportunity to open today's debate celebrating the life and work of Gordon Aitman and his campaign, Gordon's fight back. I would like to start by offering my condolences and those of Parliament to Gordon's husband Joe and his friends and family who are present today for their loss and to welcome them to the gallery. I met Gordon on a number of occasions and I was always struck by his determination to make things better, not for himself but for others. While I recognise that this may be at times a somber occasion, particularly for members who knew Gordon very well, I am also aware that many members from across the chamber attended Gordon's memorial service on Saturday. Both the First Minister and Kezia Dugdale paid their tributes then. I hope through this debate that members will take the opportunity to pay their own tributes to Gordon and, importantly, to celebrate his life and his achievements. Of course, in saying that, I would be happy to accept the amendment in Kezia Dugdale's name. Gordon was born in Cercoddy in 1985 and he attended Cercoddy high school, where he was head boy and went on to graduate from the University of Edinburgh in 2007. The next year, Gordon started working 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 and a huge passion for his work. He went on to earn the nickname Mr 14 per cent after it was revealed that 14 per cent of all freedom of information requests that the Government had dealt with had come from Gordon himself. I am sure that members 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. However, Gordon did not accept his contribution to public life. It was over—quite the opposite. In fact, he galvanised efforts and went on to lead an incredibly successful campaign with MND Scotland's fight back. 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 an exceptional sum that has been invested in research aimed at finding a cure. In the time following his diagnosis, Gordon achieved a huge amount. In fact, he could be said that Gordon achieved more over those years than most people would in a whole lifetime. As Gordon himself said in one of his newspaper columns, let's celebrate the rich, diverse and complicated world we live in. Let's savor each day, let's measure life not by length but by depth. Gordon's fight back campaign initially had five pledges. That eventually grew to a total of seven pledges as his campaign expanded. One of the most important aspects of the campaign was his call for action on MND specialist nurses. He wanted the number of nurses doubled in Scotland and for those nurses to be paid from the public purse. Gordon was very persuasive of the case 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 paid from NHS Scotland funds. Furthermore, the Scottish Government, MND Scotland and the University of Edinburgh jointly developed and funded a new national lead nurse consultant for MND, who will develop a strategic approach to delivering services for people with the condition. That will be a lasting legacy for Gordon through 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 will be too late for me, but we can and we must find a cure for future generations. 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 involving 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. This bid combines MND and MS PhD studentships in an integrated training programme. The universities involved agreed to a match funding arrangement, meaning that overall a cohort of 16 PhDs will be created working in neurodegenerative disease research. Bringing MND clinical trials to Scotland was an important aspect of the improvements in research that Gordon wanted to see. Our chief scientist office funds the NHS research Scotland dementia and neuro-progressive disease research network. The role of the network is to support the delivery of clinical research in neurodegenerative conditions, including MND. Therefore, 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 do hope that those commitments and the research being undertaken around Scotland will help us 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 can 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. Outcome of the dedicated efforts and commitment of Gordon and all those that he worked alongside, especially members of the AAC Collaborative, resulted in this Parliament passing part 4 of the Health, Tobacco, Nicotine, etc. Care Scotland at 2016 in March of last year. For the first time, we now have a legislative duty in Scotland that gives a statutory right to communication equipment and support for all children and adults who have lost their voice, who are at risk of losing their voice or who have difficulty speaking. We have reconvened the AAC advisory group, which has formed of people who use augmentative and alternative communication equipment and people with expertise in this area from a wide range of backgrounds. Gordon was a much-valued member of this advisory group and will be greatly missed by his friends and colleagues on that group. As part of our on-going work, we recognise that voice banking, the recording and stoning 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 do not just get a voice, but get their own voice back. As such, we awarded £200,000 of funding to the Ewan Macdonald Centre voice banking research project, which speaks unique to pilot voice banking at sites in the NHS, and this work began last year. Preserving one's own unique voice is invaluable in enabling people to retain their own personal identity, as well as enabling family and friends to continue and 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, and was constantly striving to seek out those treatments and approaches that would improve how the quality of life 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. Gordon Aitman's 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 and specialised physiotherapy, or developing a better understanding of carers' educational and support needs. The scholarship scheme will accept applications from people working in healthcare and from those who are affected by MND and their carers, whose experience and expertise is invaluable in helping to continually improve care. I very much hope that it will continue to drive forward the improvements in MND care that Gordon had kickstarted in Scotland and will be a fitting tribute to his memory. Gordon was also passionate about the social and economic impact 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, benefiting 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, and I have committed to working with councils to ensure that there is a fairer system of charging by local authorities. Of course, I committed on 6 December last year to conduct a feasibility study into extending free personal care to all those who require care who are under the age of 65. I expect the study to report to me in the summer. Finally, in respect of social security and the disability benefits to be devolved to Scotland, I can 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 those payments can get to the person as soon as possible. In closing, it is absolutely clear to me that Gordon Aitman's campaign has transformed care for people with MND. The huge achievements that he has made will make a practical everyday impact on the lives of people with the condition and, indeed, other conditions. The credit for this lies absolutely with the tireless, selfless efforts of Gordon and everyone who worked with him. It gives me great pleasure to have moved the motion in his name, but also to say that the work is not over and the commitment that I want to give to Gordon's family and his friends and this chamber is that we will strive to continue to make the lives of people with MND better and to make sure, importantly, that we keep his family informed of the progress that is being made. I thank the cabinet secretary and the cabinet secretary for using the debate time this afternoon to talk about Gordon's life and his work. I know that that is very much appreciated by his family who sit behind him and, indeed, many of his friends who I can see the length and breadth of the gallery. I paid a personal tribute to my close friend, Gordon Aitman, at his funeral and memorial on Saturday. I will not 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 those politicians, I should talk about what he did but, most importantly, perhaps what he might like to see happen next. I intend to talk a little bit about two of his campaign achievements and a little bit about what else the Government could do to support people with MND. If I have any time left, I would like to say a little bit about what he taught me about living with a disability in general in Scotland today. The first thing that is worth recognising in the cabinet secretary's reference is the work that Gordon did to guarantee people a right to communication aids. The cabinet secretary in particular referenced the use of voice banking technology. She might not be aware though that every single party leader in this chamber went and recorded their voice at the unrhyling centre in Edinburgh for an hour. Just by speaking and reading excerpts from the Scottish Herald for an hour, that can all be synthesised to give people their voices back. The more voices they have, particularly of particular accents or dialects, the more realistic those voices can be when they are given back. It does, however, also 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. If you think about the power or the trouble that could be caused with that capacity, I know that Gordon certainly contemplated the benefits that 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 do not think that I fully understood what MND nurses actually do, and I think that it is worth taking a moment to reflect on that. I think 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. If I can share an example with 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 motor neuron disease takes away your muscle capacity to chew food or attack your stomach, you need to have a feeding tube inserted. The waiting time to have that procedure could be 22 weeks. Very often, in the passage of that 22 weeks, that 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. A specialist MND nurse studied that whole process of trying to access that healthcare and realised that the blockage in that 22-week period was actually waiting to see a nutritionist. That was the only problem. It did not need to be 22 weeks. If they could speed up the time that they got to nutritionists, they could really crunch that right down to a matter of two or three weeks. Rather than speeding up the time to see a nutritionist, the MND specialist nurse said, why do not we just train all the MND specialist nurses to give that nutritional information, and then they will not have to go and see a nutritionist at all? As a consequence of that, you do not wait 22 weeks to get a feeding tube now, but you wait two weeks for a feeding tube now. That is the material difference that having more specialist MND nurses has made. It is important to recognise that not only is that increasing and improving the care for people living with MND is saving the NHS a tremendous amount of money. If you think how many other conditions there are in Scotland where we argue the case for specialist nurses, the difference that that could make if we applied that preventative approach across the board. Gordon gave me a passionate interest in MND trying to understand it, although very few people do, because we do not know why you get it and we do not know how to cure it. So whenever I travelled throughout the last Scottish Parliament election campaign, I tried to seek out other MND sufferers. I met one woman when I was in the Western Islands—I do not know if Alistair Allen is here—a woman called Margie McLeod, who has sadly passed away since I met her during the election campaign last year. The Western Islands have a close affiliation with MND. In fact, the MND Association in Scotland was founded by a guy called John McLeod, who was a Strath Cloud 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 McLeod would tell me about how difficult it was to live with MND in the Western Isles and how she would very often have to travel to Glasgow to get treatment, whether or not she could get that treatment or that service, depending 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 today in Shetland with MND, and they have a nurse able to help them and live their lives because Gordon argued for that. This Parliament listened to him and those roles are now in place. I would say to the cabinet secretary however that there still are problems in the islands with MND patients accessing 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 she 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 have put two more challenges to the Scottish Government. I became very aware following Gordon's campaign that we have a big problem with our IT system in the NHS. Primary care does not talk to secondary care, and that is a real problem, because an MND nurse with a patient cannot update their medical file. They have to write up whatever the latest developments are and send it to the GP, and only the GP can put it on the computer. If that does not happen fast enough, and that MND patient gets ill, they can end up in hospital, and 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 this, but perhaps it needs to increase the pressure on that. 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. They will make them with their MND nurse, they will not get to the GP, suddenly there is a crisis, an ambulance is called, a patient ends up in ICU and they die in a hospital bed when there is a palliative care plan at home that allows them to die at home in 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 put to the Scottish Government is one around ambulances. Currently at this moment, not every ambulance in Scotland has a kiss system built into it, so not every ambulance driver can look up a patient's name on a computer and see what information is available about their medical history. I know that the Government has plans to increase that, but could you tell us today what date the Government would like to ensure that every single ambulance has that kiss system at the heart of it? Finally, Presiding Officer, if you would let me just say one thing about disability, thank you. Gordon taught me a lot in the time that he was ill and much of what he taught I reflected on in the speech that I gave at his funeral on Saturday, but it was one thing that I did not manage to get in, which is about his attitude to disability and how politicians talk about disability. Rather than trying to paraphrase it, I would just like to read it out. This is a direct quote from The Sunday Times, and I will end after this, Presiding Officer. This is in the context of the Paralympics. It says that, while branding Paralympians as superhuman might seem positive, it unhelpfully suggests that success equals beating disability. It paints a partial rose-tinted picture of what it really means to be disabled. The reality is that all disabled people are forced to be superhuman, Paralympians are 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 that is 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, we will change that, boy, I wish it could. Let's stop betraying disability as something that has to be conquered. Let's remember that it takes superhuman levels of strength to accept what you cannot do. 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 to this Parliament. Thank you very much. I'm not allowed to clap, but I'm actually clapping. Thank you, Deputy Presiding Officer. It is a special honour to take part in this debate. At the outset, I should inform the chamber that the Scottish Conservatives will be supporting the Government motion tonight and the Labour amendment. I'd like to start in the same vein as Shona Robison and Kezia Dugdale by paying tribute to Gordon Nakeman and offering my sincere condolences to his family and friends. I should say early on that, regretfully, I never had the opportunity to meet him, either during his time working in Parliament or on the Better Together campaign or in more recent years when he worked for MND. I know my colleague Miles Briggs did know Gordon and will offer more personal reflections on him as an individual. Unlike other colleagues across the chamber who I'm sure will share one full memories of Gordon today, I don't have any such tales to tell and I'm very sorry I never did meet him because he was clearly a quite remarkable person. For those of us who did not know him in person, we did know him in other ways. Firstly, we knew him in terms of the incredible work that he carried out for motor neurone disease. Secondly, we knew him in terms of his writing, notably his column in The Sunday Times. As many have noted following his diagnosis, he channeled his energy into an astonishing and dynamic campaign. His work for MND is well known but bears repeating. His fundraising to support research, his raising awareness of the condition and his influencing the direction of government policy. These were all major achievements. He raised over £500,000 to support research into the condition. Think about that, half a million pounds single-handedly. He affected real change and did so in a powerful and inspirational manner. We in this chamber 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 any of us will achieve so much in such a short space of time as he did. Just as striking were Gordon Naikman's monthly columns for The Sunday Times in which he documented his life with MND, with a searing honesty, never sentimental, but with an endearing good humour. I think that was where many of us saw first-hand a quality of his which perhaps underscored much of his work, that is, his courage. Through every word, phrase and sentence, Sean, his courage. Notwithstanding his terminal diagnosis, he wrote freely of his fears and his feelings. He wrote of his fearsense of independence and how he mourned its loss. He wrote of his everyday trials and the challenges 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, that it gave him a chance to conclude his life. I know that his husband Joe Pike said at his funeral that Gordon taught him and others how to live. But in his graceful writing and in the example that 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 highlight the challenges faced by people with MND and also what needs to be done by the Scottish Government to ensure everyone in Scotland who lives with this condition gets the right support, regardless of circumstance or location. We know that there are over 450 people in Scotland living with a disease and typically more than 160 new cases each year. What more can be done, the Gordon's fight back campaign has commendably stated that they will continue in Gordon's memory with the purpose of trying to transform care for people with MND and funding a cure. In their briefing for this debate, they focus on two immediate areas. They talk about a fast-track benefit system, which I note that the cabinet secretary has accepted. They also talk about seeking 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. In terms of priorities for the new integrated joint boards, I would ask the Government to see what it can do to move neurological conditions higher up the list of priorities. The recent cross-party group on MS learned that they are somewhere down the pecking order for IJBs and they deserve to have greater prominence in my view. In closing, it is right to return to the man himself. Gordon wrote that when our physical existence is over, we need not be 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 Alexander Solzhenitsyn, who wrote that 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. Thank you very much. I now move to the open debate. Speeches have up to five minutes. Please, a little tight for time now. Christina McKelvie to follow by Brian Whittle, please. I add my sincere condolences to Joe and the family and the friends of Gordon Aitman. I offer those mere words, Presiding Officer, as a comfort to Joe and those who have loved Gordon as a daughter who has loved and lost someone dear to me to more to neuron disease. No words can ever express enough the depth of our grief, but please know that they are words filled with experience of a family who faced every day with the knowledge that this terrible disease has taken our loved one. My family share that grief with Gordon and his friends. Presiding Officer, the chamber is mostly familiar with my own MND story. At the age of nine, I was faced with the reality that my big, strong, funny, talented singer of a dad and iron moulder to trade had a terminal illness. He was 45 years old. My mum was 37 and there were four years of kids in the house. The immediate impact was drastic. My dad, after a short period, had to give up work. He was a breadwinner in our house, as my mum in those days had to give up work when she had her kids. My family went through a whole range of emotions, loss, anger, fear, anxiety and, of course, heartbreak. The benefit system then, as it is now, was almost impenetrable. With our family losing a significant level of income, my mum went to work at night and we looked after her dad when she was at work. What a huge difference a fast-track benefit system would have made to my family at that very difficult time. I have campaigned alongside Gordon and others in MND Scotland for such a fast-track system, so to hear those words today are amazing. In those difficult times, the last thing 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 that family, and I would urge this Government to make sure that that is realised when the benefits that they will have devolved to this place comes here. Presiding Officer, the most amazing and inspirational work of the UN McDonald's research centre with Professor Shandran and his inspiring team bring us new and exciting breakthroughs, not just in the scientific field but with the better care of 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 very welcome indeed, but please don't just stop at doubling them. Please think about training more, listen to Kezia Dugdale's words when she talked about the value of an MND nurse. One of the other aspects of MND is to lose your voice. It's a huge part of your personality and it's a huge blow, and I have never been prouder of this place when we enabled the voice bank to be housed here. Supposedly, only for a month, there were so many names that came forward that it was here for four months because there are so many different voices in this place, and we all like to hear the sound of our own voice, but the benefit that that gives to someone who is losing their voice is insurmountable. When it comes to scientific research, we need to have the best and most creative minds working together in advance to understanding and eventually to cure this horrible disease. That's why the Scottish Government's funded PhD places in the fellowship programme are so important. The more minds working on this, the bigger chance for a cure, and Gordon Aitman's scholarship just adds brilliantly to the same. Finally, Presiding Officer, let me talk a bit more about Gordon and the many inspiring people I know campaigning every day for MND Scotland. What Gordon brought us was hope. Hope is a very powerful motivator. It can move mountains, but more so, importantly, it can move hearts. It moved my family to walk on fire, up sail off buildings, take ice bucket challenge and many, many more people in here, and it can move people to do amazing things in order to raise those funds. Hope pushes people that we bit harder, and I believe that we have moved this Government to make some changes, transformational changes to their lives, some very short, some only 14 months, for people with MND will make those last precious days that they have with their families filled with love and equality time rather than worry and despair. That's Gordon Aitman's legacy, Presiding Officer. It's hope. It's hope for the people with MND. It's hope for the family supporting them. It's hope for my family, Joe and Gordon's family, who are left behind to carry on the fight to find a cure, to make us and care better and to ensure that people have financial dignity. As I said, hope can move mountains. All we have to do is move a Government and we've pushed it in the right direction. I ask this Government, in memory of Gordon Aitman, all of our loved ones that we have lost to MND, that you, our Government, are moved to take those actions. Thank you very much. Paul Bryan Whittle, to be called by Marie Todd. Mr Whittle, please. Thank you, Presiding Officer. I'm glad to have the opportunity to speak today, and I'd like to commend the Government for changing the subject of today's debate. It is indeed a privilege to be involved in some small way in recognising the incredible achievements of Gordon Aitman, and I'm pleased to speak about the drive to defeat the disease which took him from his friends and family all too soon. In a few short years, Gordon Aitman achieved more meaningful change in Scotland, perhaps, than most of us were likely to do during our entire careers in this chamber. His legacy isn't only vastly improved support for other MND sufferers across Scotland, it isn't just the more than half a million pounds that he raised. It's not 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 if we are 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. Around the world, people associate MND with the ice bucket challenge. It's 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 linked to MND that takes us one step closer to a cure. It may be not today, but hopefully not too far in the future. In Scotland, though, a bucket of freezing water wasn't the only thing waking us up to the damage MND does. We had Gordon Aitman. There are very few people in this world that 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 Aitman definitely had. He had the ability to make politicians and Governments listen and take heed. One of his many talents, I have to say, I rather envy. I wasn't fortunate enough to know Gordon personally, although many in this chamber did. Despite never having met him, like so many, I admire him greatly. Anyone who could be given the news that his lifespan can probably be measured in months and 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 columns chronicling his disease and the testimonials written in the last few days by those nearest to him. I might be wrong, but I am as in it if Gordon, who himself confessed to being ruthlessly rational or still with us, he would be demanding that we stop talking about it, stop talking about how we admire and respect him and his achievements and instead start talking about how we carry on what he started. One of the things that always struck me about Gordon's campaign was the name he chose, Gordon's Fight Back. There are many other names that he could have chosen, Gordon's appeal or Gordon's MND campaign, but he chose Fight Back. It was a good choice. He didn't just fight back against his own disease, he fought back against the lack of support, he fought back against the lack of public knowledge and he fought back against anyone who told him that something could not be done. Gordon began this Fight Back, but it is ours to finish. Motor neuron disease and a whole host of other genetic neurodegenerative conditions such as Huntington's disease have lighted lives for too long, but now for the first time our science and technology have reached a point where the possibility of defeating those diseases are within our grasp. Professor Colin Blakemore from the University of Oxford is quoted as saying, the vision of a free world 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 have a responsibility in this Parliament to do whatever we can to support this goal, not only for the end result but for the potential discoveries and knowledge that we accrue along the way. In this chamber there will be days when we will agree on nothing. Today, though, is not one of those days. Gordon Aitman's greatest legacy is the commitment and determination that we are hearing in this chamber today to those to the defeat of MND once and for all. Gordon Aitman's resolute determination has brought the cure for MND that much closer and I have no doubt that we in this Parliament, others across Scotland and globally, will continue to fight back. One day, Presiding Officer, hopefully within my lifetime we won't be talking about Gordon's fight back anymore, we will be talking about his victory. Thank you very much. Will you talk before we go? Anna Salwar has talked please. Thank you Presiding Officer. I want to start by offering my deepest condolences to Gordon Aitman's family and friends. The debate this afternoon is an opportunity to reflect on Gordon's inspiring and selfless campaign. He generated unprecedented awareness of the challenges faced by those who live with debilitating neurological conditions. He kept motor neurone disease in the public eye. For people living with this condition, this 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 today's debate is a tribute to Gordon Aitman and the legacy that he left, but as a keen rugby fan, I have to also pay tribute to South African Scrum Half, used van der Vesthausen, 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 spring box victory was the Scrum Half, used van der Vesthausen, who not only tackled Jonah Lomw in full flight, which not many people have done and survived it, 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 this illness is. We know that MND is a rapidly progressive and debilitating disease. It's cruel, it's relentless, and it's indiscriminate, and currently there is no cure. Because it's rare and because it progresses so quickly, it's been really difficult to raise awareness about it. Our progress in understanding the disease has in contrast been painfully slow compared to the progress of the illness. There's now a drug, at least one drug, with a very modest effect which 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 proper combination of medical treatment, specialised equipment, nursing and psychological support. I want to take the opportunity to highlight, like others have done, some of the really positive steps taken by the Scottish Government, thanks to Gordon's tireless campaigning. Firstly, the right to a voice. As others have said, one of the worst aspects of MND is that patients lose their voice, and a statutory duty on ministers to secure communication equipment, as well as funding for voice banking research, is helping to tackle this. Secondly, a living wage for carers. Tomorrow's budget sets out an investment of £107 million, which will continue to support the delivery of the living wage for social care workers, and that recognises the invaluable contribution that they make. Thirdly, specialist nurses. Thanks to Gordon's campaign highlighting the lack of MND nurses, the Scottish Government funded the NHS to replace charity funding for MND nurses and for their number to increase to 6 to 12. Finally, I want to highlight the research funding. Gordon himself raised almost £0.5 million for MND to help to find a cure. The Scottish Government is also providing funding, and that will deliver PhDs in neurological conditions. Those PhDs offer a unique opportunity to develop integrated national PhD training programme, which recognises the shared underlying biological mechanisms in MND and multiple sclerosis, and demonstrates that Scotland is continuing to lead the way in clinical research and innovation. Medical science has long been dumbfounded by MND. The cause of MND 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 neurones function. Gordon's legacy will be long and lasting, and although he is no longer with us, his campaign shows no sign of slowing. That, indeed, is a lasting tribute to him. Thank you very much. Annas Sarwar is called by Alison Johnson. I rise to speak with a very heavy heart in today's debate. There have been so many beautiful contributions from so many people in this debate so far. I think that it reflects the very best of this Parliament. I think that it is a very proud moment that something that Gordon and I am sure his family would be very proud of indeed. Keisdaugdale has already said that Gordon would not have actually 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, but 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 want us to focus on delivery for future generations. I want to touch on the future for a second, because one of the most amazing things about Gordon Aikman is that when he got the most tragic of news, he did not focus on himself. He did not focus on the past. He instead dedicated every last moment of what remained of his life to campaign for the future of others that followed him. On that note, we should say to his wonderful family, to his husband Joe, to his family that we share your loss with you. Gordon was a loving man, a caring man, a happy man, a positive man, a man who every single time I ever saw him, whether that be in person or indeed in a picture, he was always smiling. I think that that is the way that we would all like to remember him. He was a fantastic colleague to have in the Labour Party. We were proud to say that he was one of us. I often reflect if Gordon Aikman, the Parliamentarian, Gordon Aikman, the MP or Gordon Aikman, the MSP, what a phenomenal Parliamentarian he would have been and how much more, even more he would have achieved speaking up for people right across the country. I have heard mention of the ice bucket challenge. One of my claims to fame will always be that I was one of the four people that Gordon nominated to take the ice bucket challenge, something that my kids had great pleasure in doing when they poured that ice bucket over my head. Indeed, Gordon Aikman and all the campaigners alongside him have helped to increase the knowledge of MND and put on the record all the challenges that we continue to face around palliative care, a greater focus on palliative care for the future. You have already heard some of the things that Gordon achieved in his short, all too short but absolutely remarkable life, a very full life in which he delivered more than many people deliver in an entire lifetime. You heard about the Gordon's fight back campaign where he raised half a million pounds for MND. We heard about the doubling of MND nurses as well as the funding of them coming directly from the NHS. Securing the legislation that guarantees people a right to voice if they lose their own. However, as so many others have said, he wants us to focus on the future. That is why I think that we want to look at how we can continue to properly invest in new models of MND care, how we can bring clinical trials to Scotland for how we deal with MND, how we do that fast-tracking of the benefit system that was outlined by the cabinet secretary. I also want to, on that point, thank the cabinet secretary for the Gordon's tribute that she has said will happen in terms of further research for years to follow. I think that that is a fitting tribute and a fitting legacy to a truly amazing man. I want to reflect for a moment on the comments that Kees Dugdale made at the end of her speech about those who live with disability. I think that that is a really important point for all of us to reflect on. Those basic everyday things that we take for granted stepping out of our homes, dropping our kids off to school, being able to walk or to cycle or to run accessing restaurants, accessing bars, being able to sit in a restaurant and have a meal with our families for so many people with disabilities, that is something that they have to plan for days ahead to be able to do. I think that there is one fundamental thing that we can take from today is how we support people. All those superhumans, every single person with a disability who is a superhuman, as Gordon Aitman said, how we support them in their daily lives. The reality is, Deputy Presiding Officer, that the world is a poorer place without Gordon Aitman, but the world is also a better place because of Gordon Aitman. I thank the Government for scheduling this debate this afternoon to allow Parliament to acknowledge the transformative and truly effective campaigning work of Gordon Aitman. The thoughts of the Scottish Greens are with Joan Gordon's family and friends, and we are pleased to support the motion and the amendment today. It is fair to say that in this chamber there can be a tendency to use, indeed overuse, hyperbolic, positive language, sometimes inappropriately, but that is not a concern this afternoon because Gordon Aitman deserves the fullest praise, not just for what he achieved but the way in which he went about it. I most recently met Gordon in the garden lobby in his extremely well-used wheelchair and we enjoyed a lively chat. It struck me that that was quite incredible given the way that motor neuron disease progresses so quickly. More than half of people, as we have heard with this neurological condition, die within 14 months of the diagnosis. I cannot imagine how cruel and shocking that diagnosis must feel. Gordon spoke publicly and bravely about the aspect of the experience. In one article that I read, he commented on how innocuous his first symptom seemed, how confusing it was to receive that initial diagnosis. The First Minister's contribution at Gordon's memorial service described an exhausting set of achievements and his contribution to public life. The cabinet secretary has left us in no doubt today of the impact and, rightly deservedly, to be marked with the creation of a new scholarship. What energy, what purpose, 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 raised to tackle and lead research into the disease. Some £500,000 for motor neurone disease Scotland will fund essential work towards a cure. As Kezia Dugdale's amendment rightly points out, investing in scientific research is essential and I'm glad to see the Government's committed funding into at least 16 PhD studentships in neurological research because training in developing future scientists is vital to our medical research landscape and I welcome all such steps. While research into a cure for this life-limiting illness should give us all hope, we must ensure that those who currently live with MND are supported well and enabled to make the most of the irreplaceable time that they have with their family and friends. The living wage for carers, as we've heard, was one of the aims of Gordon's fightbacks. Sadly, our society often places too little value on the incredible work that carers do day in, day out. Gordon's fightback made to the value of that caring so clear, in his words. My carers not only make my life livable but they 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 that they do and I'm 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 and it is now incumbent on all of us in this Parliament to take the most care to ensure that living wage is implemented fully and fairly, that it benefits all care workers and that we don't stop fighting for better working conditions and professional opportunities and recognition for carers. Gordon's campaign also focused on the need for better specialist medical support for people with MND and improved palliative care. One of his most outstanding achievements was to secure the Scottish Government's commitment to double the number of motor neuron disease nurses and fund them through the NHS. That means that patients will be able to see a specialist nurse more often. Kezia Dugdale and Christina McKelvie have spoken clearly about the difference MND nurses make, as have many other colleagues. They help to plan that essential care as sadly the symptoms of this neurological disease become very severe all too quickly and palliative care can become important very soon. Introducing appropriate palliative care early and this means leading meaningful and difficult conversations about people's true preferences for treatment almost from the day of diagnosis can do so much to support people throughout their illness. Not only do we need to fund medical research and social care workers, we also need to build a culture that's more understanding, more open and more willing to discuss death and dying. Gordon's campaign was a great step forward in that regard. The success of his fight back can only be measured in the funds that he raised and the huge changes to policy that he helped to lead, but his reflective words and honesty about his condition and experiences presiding, officer, Gordon's fight back has a lasting legacy. Let us ensure that we build on Gordon's incredible work with urgency and commitment. It is the least we can do to properly honour the memory of this unique young man. Alex Cole-Hamilton is my great privilege to offer the support of the Liberal Democrats, the Government's motion and the Labour amendment this evening to offer our condolences to Gordon's family and everyone who is here in the gallery today to pay their respects to his fine man. I didn't know Gordon very well personally, I only met him a few times, but the time I remember most I was wearing a ridiculous string vest and an appropriate footwear and I was about to run two miles on a treadmill through the fug of a festive hangover to build publicity for a Christmas Day marathon by our mutual friend Rob Shorthouse, who was running in aid of MND Scotland. That one encounter for me in particular sums up Gordon's impact on Scottish society. He had that uncanny ability to talk people into things that they wouldn't have otherwise done voluntarily and to pull off events and stunts at every level of Scottish society to raise awareness of his condition and the needs of those who suffered with him. That while his own body was failing him, he displayed a strength of character that really represents the very finest qualities of our people. By doing that, he made motor neurone disease and the tragedy that it inflicts on over 400 Scots in any given year, made that agenda a household understanding that was rarely out of the headlines. Gordon revealed his diagnosis around the time of the international ice bucket challenge and almost overnight took it as his own. People across Scotland were taking up that challenge for MND, such as was there affection for Gordon, who had rightly become the poster boy for that campaign. It started a campaign and personal journey that would raise over, as we have heard, over £0.5 million, touch the lives and hearts of millions. Not solely in his crochet to bring about awareness and resources to bear in the fight against motor neurone disease, but on his dignified acceptance of the course that that illness would ultimately take and its ultimate destination for him. He owned that reality, but he never let it define him. For someone at the age of 29 to write the phrase, I don't want your pity, it will be too late for me, but we must, and with your help we will, find a cure for the next generation. I think that we see the measure of the man, it speaks volumes to his character and showed an uncommon grace in the face of his own mortality. His example is a continuing comfort, not just to those in the MND community, but to many confronted by the reality of a diagnosis of terminal illness of any kind. As well as his bravery, respondent in those words, Gordon showed a steely determination to deliver on that commitment, to leave behind a legacy that would ensure that to receive a diagnosis of motor neurone disease you might still expect to beat it in the future. To that end, beyond the colossal impact of his fundraising achievements, he captured the attention of the Scottish Government and who, to their credit, have delivered a range of measures that we have heard delineated in this debate, particularly around MND nurses. I thank the cabinet secretary for her additional commitments in the debate this afternoon, because motor neurone disease is classless, it is indiscriminate, it shreds function in brain and spinal cord, and it does so with voracious and horrific speed. Until Gordon launched his fight back, there was fairly little awareness in Scottish culture about the condition, and yet there was a deficit in public knowledge and that his legacy has helped to reverse. It has also ensured that research will now place. Again, thanks to the good offices of the Scottish Government, it will take place to close those gaps in our clinical and scientific understanding of the condition, and we have heard about the PhDs and the scholarships in today's debate that will close that gap still further. When I think of all that Gordon has achieved, both prior to and in the months following his diagnosis, I am reminded of the words of Bobby Kennedy when he said that fuel will have the greatness to bend history itself, but each of us can work to change a small portion of events. It is from numberless diverse acts of courage and belief that human history is shaped. Though his physical capacity was diminished, Gordon's strength, certainly shaped events, and with it will help to shape the hope and future of MND sufferers everywhere. Gordon's life was all too short, but it was utterly inspiring. He leaves the world and the cause for which he fought a better place than he found it. My thoughts and those of my party are with those who he leaves behind and those who are here gathered to celebrate his life today, and in particular, his husband Joe, my friends and colleagues in the Labour Party. Unlike many of the previous speakers, I cannot talk of Gordon Aikman from my personal point of view, as we only met once and that was in a taxi queue after an event and hardly the best circumstances to meet someone for the first time. However, what I can talk of is the impact that his campaigning had during his final years. Motor neuron disease was something that we were all aware of, but it is not part of the public consciousness unless a friend or family member was diagnosed with MND. He had little involvement. For me, that involvement came from two friends of mine from the political world, and in the case, one case encouraged me to run the Paisley 10K for MND Scotland. Well, to say run might be a slight exaggeration. I briskly completed the 10K course, but it was Christina McKelvie, who campaigned for MND after the death of her dad, and Councillor Lorraine Cameron in Paisley, who made this condition very, very real for me. Lorraine's mother, Eileen Clarke, was diagnosed and went from a very active woman to death within a couple of years. In Lorraine's case, her mum's illness took its toll on mother and daughter as Lorraine struggled with her own health issues during that period, but that is what MND can do to families. From diagnosis, the clock is ticking, but what we do with that limited time is important, and how people are supported during that time is the key. Sometimes, with adversity, some people take on superhuman-like qualities and strengths, and Gordon did that with Gordon's Fight Bank as he campaigned for MND Scotland and pursued the case for further specialist nurses for all neurological conditions, because one of the knock-on effects of Gordon's Fight Bank was the investment, as the cabinet secretary has already said, in other neurological conditions. The chamber will be aware of how close I am to multiple sclerosis. You could say that I am married to it as Stacey was diagnosed at 16. She too has the same quality, the quality of never giving up and not allowing herself to be defined by this long-term neurological condition. She is a woman with strong ideals, an extremely positive outlook in life, and she believes that every day we must live as if it is her last. Her mum tells a story of one time in her late teens when Stacey was feeling sorry for herself, and her mum brutally asked her who would want to know you with an attitude like that. Harsh words, Presiding Officer, bow of love for a daughter who would live the rest of her life with MS, because, Presiding Officer, like MND, there is no cure. MS is highly individual, often fluctuating and always progressive condition, affecting more than 11,000 people in Scotland. It needs specialist support in order for people to manage it appropriately. In 2015, thanks to Gordon and other campaigning groups, additional funding was found for the NHS for MS specialist nurses. However, due to factors such as increased availability of treatments, consensus around the need for early treatment and continued conditioned monitoring, the workload of MS nurses continues to increase. Research from the MS Society suggests that MS nurses are the most common key contact for people with MS, and the role of the MS nurse is increasingly extends far beyond a clinical role and moves into areas such as employment, welfare and whole life support. There is currently a need for further investment in neurological nursing, particularly for those who live with MS. That will be the focus of this year's MS awareness week during the last week of April. If we want to honour Gordon's memory, if we want to say all those good things and leave a legacy, it is my opinion that the best way to do that is to continue with his campaign. We must ensure that those with neurological conditions continue to get the support that they require. I call Jeremy Balford to be followed by Clare Adamson. Thank you, Deputy Presiding Officer. I have been very moved so far by this debate, because I did not know Gordon personally. However, hearing the words of his colleagues and other members of the chamber, he was a remarkable individual. I would in particular like to congratulate Kezia Duglow for her speech and quoting the comments of Gordon at the end of her speech. As someone who is now obviously superhuman, I expect the chamber to listen even more carefully. MND is not only devastating for the person who is dying those with it, but for the husband, the wife, the mum, the dad, the son, the friend, the good neighbour. People who do not recognise themselves as carers but are looking after someone who has that disability within their family or who is a friend. 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 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 was stepping in to offer some practical support. I often think about this lady and try to imagine what her life is like as her husband's progress has got worse, as the activities normally shared started to decrease, as she had to take on additional responsibility for his care such as dressing, feeding, drinking and helping with the most basic things. I imagine that at times the stress must be unbearable for that individual. Gordon spoke of carers not only making his life liveable but making his life worth living. He referred in his articles to carers as his arms, legs and his independence as a result of his campaign. I am pleased that carers now paid a living wage. In the past, the Scottish Conservatives argued for a national carers great guarantee to be introduced, which would guarantee a fully funded, flexible week of respite for any carer caring over 50 hours a week. Provisioning there has been no provision in place for local authorities to provide time away for uncaid carers. Respite is consistently identified as the most helpful form of support by carers themselves. In early February 2016, a landmark carers bill was passed by this Parliament. For an amendment by one of my former colleagues, local authorities will now provide short breaks for those who look after others. The new legislation will see unpaid carers given some much-needed time away, benefiting quality of life, well-being and the relationships within families. As someone who personally has a carer who looks after them and we could not be here without her care, I know how important that will be for all those who have such types of disability. A person's care plan will now need to be agreed as soon as possible. It will involve all parts of local services and HNA services. We must, even with council cutbacks, seek to protect those services and make sure that they work for each family and individuals. Gordon's life was taken far too soon by this cruel, horrible disease, that his drive to fight for the rights of others will be a lasting legacy that is felt across not only this nation but, I believe, the whole of the UK and much further field as well. By sufferers and carers, we say thank you, Gordon, for what you have done and we pass on our deepest sympathy to his husband and family. The last of the open speeches is Claire Adamson. Thank you, Presiding Officer. Can I extend my condolences to Gordon's husband Joe, his friends and his family? I was not Gordon's friend. Not by choice, but to my regret, I am also one of the people who did not know him when he was alive. I have heard the remarkable stories of this young man taken so tragically at age 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 fight back is an incredible, selfless achievement. Alex Cole-Hamilton and other members have talked about the cruel, indiscriminate nature of this disease, and Marie Toad mentioned use to Fander Westhousen, who died so suddenly. That raises awareness of MND, and it is important that we do, and I know that that was one of Gordon's wishes that people would understand this disease better. It can strike anyone. Six people a day in the UK are diagnosed with motor neuron disease. In the rest of the world, the rates of motor neuron disease aren't readily understood. If we struggle here to cope with the rapidity of this disease and cope with caring for people, imagine how it must be for people in third world countries who are diagnosed. That understanding and the lack of palliative care should concern us all. Of course, there are remarkable people, such as Stephen Hawking, who has not had a journey that is representative of people with motor neuron disease and who is a hero to many of us. However, his bio picks the theory of everything when Eddie Redmayne documents his early struggles and the diagnosis of MND is particularly moving. I hope that it has contributed to raising awareness of this disease. The rugby world was rocked. The football world was also rocked when Fernando Rickson was diagnosed with MND2. Those who saw his interview in which he revealed the diagnosis, no one could be failed to move to that. Yet again, he is someone who has turned that diagnosis into something positive by finding a foundation to raise awareness and funding. Another motor neuron disease sufferer, Ewan Macdonald, has turned his time with his sister Keri to Ewan's Guide, a guide that would address some of the issues that I know were important to Gordon in terms of living with disability. Ewan's Guide seeks to give advice to people about visiting attractions and areas in Scotland, removing some of that worry and the feeling that people do not know what to expect if there is going to be accessible toilets, how accessible a venue will be to get to. Ewan's Guide takes away some of those difficulties faced by people suffering with illness and disability. We all took part in the ice bucket challenge and lived to regret it, but none the less raised lots of money, which is commendable. I would like to draw attention to the work of Christina McKelvie, my friend and colleague who I sponsored to do a fire walk a few years ago to raise money for motor neuron disease. I am sure that there are many more in the chamber who would have liked to have held Christina's feet to the fire than me. I suspect that Gordon might have been one of them. I do not have anyone close to me who has suffered from MND, but my sister suffers from multiple sclerosis. Eileen is 10 years older than me and she still works as a GP. I would like to thank Kezia for her point that the superheroes are not those who are climbing Kilimanjaro, they are those who cope and accept every day the diseases that life has thrown at them. That is why I am particularly pleased about the MND funding, the additional PhDs, that will work because the diseases are so linked with motor neuron disease and multiple sclerosis. I am very grateful to the Government for the funding of the PhDs at Aberdeen, Dundee, Glasgow and St Andrews and also the dedicated funding at the University of the West of Scotland, which I am sure will show Scotland leading the way in finding a cure for this disease. I was not Gordon's friend, but Gordon is my friend. He is a friend to everyone who has been touched by MND, MS and other neurological conditions that his work will have worked towards finding a cure. What a wonderful legacy to have left to Scotland. I now move on to the closing speeches. I call Clare Baker up to seven minutes please, Ms Baker. Thank you, Presiding Officer. Today's motion reflects on an extraordinary life and an extraordinary campaign that achieved so much for the people with motor neuron disease. Gordon Aitman's response to his crushing diagnosis has resulted in better services for people who face this terrible illness. While we discussed today all that Gordon has achieved and the on-going legacy of his campaign, and we have had many excellent and very considered contributions this afternoon, in these early days since we have lost him, all of us who knew Gordon are still hurting at seeing someone with such ability, commitment, passion and warmth lost to us at so young an age. If you had read his moving article about his experience of receiving that news, if you had spoken to him while he was waiting confirmation of that diagnosis, you will know just how devastated he was getting 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, not to curl up and pretend that this nightmare was not happening, was a huge achievement. That kind of response would have been understandable, but that was not who Gordon was. That was not his choice. That is why family and people 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 that we had met before. She was one of the nurses who helped care for my mum when she was diagnosed with MND. Taking over a year for us to get to that diagnosis, this is a complex disease, and for many families the road to diagnosis can be confusing and frustrating. Perhaps it is too for the medical profession, but it did seem 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 that he was, and it is important that, while we recognise what he did for MND, we do not lose sight of how talented and brilliant a person he was before his diagnosis. From his days at Head Boy at Cercodi High School, he went on to Edinburgh University and was an activist there, committed to playing his part fighting for a better society. That took him into student representation and then on 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 such a positive, funny, charming man. He had many friends in Parliament and he was a good matchmaker. We all enjoyed his and Joe's wedding to see him as happy as he had made other people. At working for Richard, Gordon quickly established himself as intelligent, resourceful and tenacious in his work and he was poached away to then work for the Labour group. He was happy to work late nights and long hours. He could achieve more in one day than many of us could achieve in a week. Every task was done efficiently, effectively and inventively too. If there was some piece of research that needed to be done, some important fact that needed to be found out, Gordon would find a way to get that information, as the Scottish Government well knows. He was a great communicator, writing speeches, columns or news releases, and while everyone else would be throwing out ideas haphazardly, it was Gordon who would put together the focused, effective campaign plan. Before his diagnosis, he was already one of the best political operatives of his generation. It is 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 that role. He used all his experience, his talent and his skills to such an amazing effect in his fight-back campaign, but if he had not developed MND, Gordon would still have achieved great things in his life. He had such a passion for life. While the disease must have brought him pain and heartache, he also took lots of pleasure, excitement and love from his life. I enjoyed seeing the many pictures of his travel adventures on social media and will betide the airline who stood in the way of that as Gordon turned his campaigning skills on and exposed an airline for the treatment of wheelchair users, showing that his commitment to positive change reached beyond specific MND issues into equality for all people with a disability. This afternoon, we celebrate 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, 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 knew he would have loved Kezia Dugdale's speech this afternoon, which reflected so much of who he was. This is a brutal cruel disease that takes lives all too soon and leaves behind devastated families. Let us not only pay tribute to Gordon's bravery and brilliance by improving services and support for people with MND, vital as it is. Let us also work together to ensure that there is far more research in future to find a cure for this disease. This is also something Gordon felt passionately about. The significant sums of money that he raised was to help future generations to help with research. With the scientific excellence that we have here in Scotland, the world-leading research that we have in life sciences says that we should aspire to be the country to find the cure for motor neurone disease, we should seek to lead and research to provide effective treatment and Scotland should be the place where we finally beat this disease. This would be a fitting tribute to Gordon, fitting recognition of someone who achieved so much in such a short life. For all of us who hold his memory dear, who miss him so much, let us all pledge to work together in this Parliament to ensure that his campaign does not stop today, but it goes on until we realise the future that he fought so hard for. I thank the Government for bringing forward this debate today and for giving Parliament the opportunity to mark the truly outstanding contribution of Gordon Aitman. I would also like to send our love and thoughts to his husband Joe, friends and family who are with us today in the chamber. I became friends with Gordon over 12 years ago when I started working for a fellow North East MSP in the form of Claire's husband Richard. Gordon's charisma, his loving cheeky vibrant personality, which was infectious for anyone who ever met him. Listening to Claire Baker's moving tribute today and speaking to many of his other friends and political acquaintances at his funeral on Saturday, it was this Shwader River that made him such a wonderful person to know and be around. The last time I met Gordon was at a silent auction in Stockbridge to help raise funds for MND Scotland. Apart from trying to force me to bid for a hideous orange finger-knitted hat, luckily something that I was outbidded on, he also told his personal story to around 200 people who had gathered there, mostly people that he didn't know. Gordon began his speech with just four words, I'm dying and fast. There wasn't a dry eye in the room after he told his personal story and it left everyone with the will to help support Gordon and his campaigns. As with every time that Gordon spoke about his MND, he was an inspiration to anyone who met him that evening. Gordon, as has been mentioned already, knew how political decisions and prioritisation by Government ministers of issues can help to transform people's lives. It's perhaps the fact that 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 the support at sea and support improvements to care and nursing teams across Scotland for all life-limiting conditions. I'd hope to meet Gordon to discuss the Frank's Law campaign, sadly that meeting will not take place. However, as Kezia Dugdale and Annas Sarwar have said, I know that 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 65 who require personal care for MND, dementia, Parkinson's, 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 like washing, dressing and feeding themselves. That's despite clear guidance to local authorities saying that terminally ill patients should not be charged for personal care. As Christina McKelvie has already mentioned, when you are on your deathbed worrying about where you will find the money to pay for the vital care that you need, is the last thing that you and your loved ones need or should have on their minds? I very much welcome that the fact that the cabinet secretary has agreed to extend the feasibility study to look at extending free personal care to people under 65 who have been diagnosed with dementia and widening that to include other medical conditions. I look forward to the feasibility study to be completed and published in the summer. We on these benches will work positively with ministers, and I know that parties across the chamber will also do that, to actually take forward policies that we need to end the current unacceptable situation. The last 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, it also 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 that we serve in this Parliament, such as working to deliver Frank's law and policies that can truly transform people's lives. I feel privileged to have known Gordon as many members in this chamber have mentioned. I will never quite comprehend how, at the age of 29, and after receiving what amounted to a death sentence, just quite how he managed to be the amazing person he was right to the end of his life, as he undertook his three-year battle with his MND. At the same time, he focused his energy and efforts on raising funds and awareness for MND Scotland. For those who have not already donated to Gordon's fight back, I hope that they will visit the website and encourage others to do so. His following mission statement is what should inspire all of our work in this Parliament. Alex Cole-Hamilton has already mentioned some of that. I do not want pity. All I want is for you to take action to help fund the cure and fight for better care for people with MND. It will be too late for me, but we must, and with your help, we will find the cure for the next generation. With your help, I can turn a negative into a positive. Gordon's legacy is one that he will probably never truly now know. For me, as a friend, and I know for colleagues across this Parliament, he will go on inspiring the work that we do as MSPs for the rest of our own lives. I call Eileen Campbell to close this debate up to eight minutes, please minister. Thank you, Presiding Officer. It is an honour to be part of today's debate to recognise Gordon's work and his achievements. Based on the contributions that we have listened to from members this afternoon, it is clear to see how much of an inspiration Gordon 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 to be here today, at a time that must still be incredibly raw and raw for all that new 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 get involved in politics—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 and commitment and powerful personal testimonies. Gordon made a huge difference, and Kezia Dugdale wrote in her beautiful article about Gordon 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 Kezia Dugdale, there was only ever one option. That spirit, that tenacity and strength that is shown by Gordon is truly inspirational. That is why this Government was proud to have worked with Gordon and his fellow campaigners to deliver the pledges that he set out in his campaign for improving 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 or are at risk of losing their voice. We are paying a real living wage for 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 although that is always useful for a debate, Kezia Dugdale's, Christina McKelvie's and Claire Baker's contributions brought what those improvements mean to life. Whether that is the tangible and material difference of what specialist nurses have brought to the speed of accessing feeding tubes that Kezia Dugdale described, or being able to go back to the nine-year-old Christina McKelvie and be able to say to her mum and her family that we will fast-track the help that they need and 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 this Government's actions resolve to do our very best to make improvements. I also want to thank Claire for her bravery and describing so much about what her family are coming to terms with. I have worked with Claire for a number of years through the Education Committee and through sharing stories about what our wee kids are up to and what they are doing at school. I want to thank you very much for being so brave about disclosing so much about what you are going through at this point in time. However, we will not stop with the actions that we are taking forward and we cannot be content with the progress that is being made. That is why we are creating that 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 affected by this condition. The scholarship programme will be administered by the nursing midwifery and allied health professional research unit at the University of Stirling, and those awarded as a scholarship will be hosted within the Ewan MacDonald centre at the University of Edinburgh. Again, Ewan MacDonald is another inspirational figure who has also done so much to improve the lives of people living with MND and to improve research. Of course, Gordon was an advocate for people with motor neuron disease, but his impact went far beyond MND and spread towards creating improvements across other neurological conditions. As George Adams made clear in his comments and what I know Stacey, his wife, would demand of us, we need to continue to take forward work on a number of fronts to make things better for people with all neurological conditions, including MS. I also thank Claire Adams for bringing her personal experience of MS to the chamber and the debate today. We have also provided funding to and have been working with the Scottish Huntington's Association to develop a national framework for the care of those diagnosed with Huntington's disease. Although the 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 this work. I thank the minister for giving way and she would 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 it, but if she is not able to address it today, she will be willing to write to me to talk specifically about the IT problems that I raised in my speech and separately to that ensuring that we have the KISS service and all the ambulances in Scotland. I welcome to that, but I was also going to say that I will come back with further clarity on that, but to maybe go and jump ahead. We are making progress around IT systems and there is progress being made in e-records. I understand that I will confirm that in writing that KISS and ECS are available in all ambulances and have been since last year. I again will confirm that in writing to her, but I hope that it gives some reassurance that there has been significant progress being made on those areas that she raised. I recently met Epilepsy Scotland in Parliament and we discussed the issues of access to social security for people with epilepsy. Since the meeting, we have awarded Epilepsy Scotland funding to support the development of a benefit service advice, specifically designed to support people who live with epilepsy. I hope that that service will be operational later on this year. Our National Advisory Committee for Neurological Conditions is also looking at models of care that incorporate all the aims of Gordon's campaign. That 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 that committee to report to me with progress in all of those areas. Mary Todd and Claire Adams also mentioned how MND has rocked the world of sport with the tragic loss of East Vandervest hadson and, of course, Fernando Rixon, where I also understand that Rangers fans have raised funds to help with a movie about the football star's current battle with MND. They hope to show that film in Scotland. All that work that is being carried out there by Fernando Rixon will continue. I hope to raise the profile of that condition. To close, I would also like to offer my thanks to members for their contributions to the debate. I again offer my condolences to Gordon's husband, Joe and his family and friends and his supporters who are here in the chamber today. We will remain resolute in our commitment to make good on achieving Gordon's aim of finding a cure. We will keep continuing to look at what we can do better, how we should transform and improve care, 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. I just want to say, rest in peace, Gordon, but please know that you are remembered in all of our hearts and that you have made Scotland a better place. That concludes the debate on MND Gordon's fight backs. It is now time to move on to the next item of business. The next item of business is consideration of legislative consent motion 3925, in the name of Fergus Ewing, on the digital economy bill. I call on Fergus Ewing to move the motion. I call on Edward Mountain to speak to you on behalf of the Rural Economy and Connectivity Committee. Thank you. As convener of the Rural Economy and Connectivity Committee, I would like to make the following comments in relation to the UK digital economy bill LCM. The committee was concerned by the extremely tight timeframe given to them for the consideration of the legislative consent memorandum. For the record, the committee received no advance notice from the Scottish Government that the memorandum was likely to be laid before the Scottish Parliament. It appears that there are two areas of the bill where the consent of the Scottish Parliament is required. The committee is satisfied with the first provision that allows for Scottish ministers to lay down fees for the land tribunals for Scotland to charge for hearing any disputes under the electronic communications code. However, in relation to the provisions of part 5 of the bill that relates to data sharing across public bodies, the committee was unable to examine the policy implications of the concerns raised by the DPLR committee. Furthermore, it believes that data sharing provisions would actually fall within the remit of other committees who had no opportunity to consider them during this process. This passage demonstrates, I believe, that the limitations of the Scottish Parliament in scrutilising LCMs within very tight time scales, which the committees are often presented with. For this reason, the committee chose to note the LCM rather than to pass a comment on it. I would make no further comment than to welcome the discussions that are going to be had on the subject, Presiding Officer. I now call on Rhoda Grant. Thank you, Presiding Officer. Can I also echo the concerns about the timescale that is allowed for scrutiny of the LCM? It makes it especially difficult for communities to do their job and to ensure that legislation comes into the Parliament as fit for purpose. The Delegated Powers and Legislative Reform Committee concerns on the legislative consent motion echoed concerns expressed by the House of Lords. We will not adequate scrutiny of any proposals to share data between Government agencies in order to ensure that those powers are required and the correct checks and balances are in place. We also seek assurance that such proposals would not breach human rights. On the other hand, we can understand that those powers could be used to improve services to individuals and wider society. That could also be a useful tool for combating fraud. I ask for confirmation that any such proposals will be subject to scrutiny in the Parliament and that statutory instruments would be closely drafted, taking into account an individual's human rights. We welcome the parts of the LCM that deal with the land tribe, anything that helps to take digital technology into our communities is a good thing. Having the land tribunal settle disputes between digital communication companies and landowners will hopefully speed up dispute resolution in this area. That is welcome, especially when a land owner has no personal interest in improved communications and seeks to hold communication companies. That is why the communities seek to serve to ransom with unrealistic prices for access of land. Therefore, in the round, the LCM provides benefits. However, with all Government powers, we must have checks and balances in place. We look for reassurance from the Government that such proposals will be in place when sport and net legislation comes forward to this Parliament. Presiding Officer, the Liberal Democrats will be voting against this legislative consent motion at decision time. I find it astonishing that the Scottish Government has brought this before us today. The legislative consent process was designed as a simple means to allow the smooth passage of non-controversial legislation on devolved matters that could be dealt with by Westminster as a matter of convenience with the consent of the Scottish Parliament. Part 5 of Westminster's digital economy bill is highly controversial. For the benefit of those MSPs who have not been made aware of its contents, let me oblige. As this bill proceeds to the House of Lords, the Delegated Powers Committee has said that, and I quote, we do not consider it appropriate for ministers to have the power to decide which authorities should be entitled to disclose or receive information under this potentially far reaching and broadly drafted gateway. Make no mistake, those powers will entitle Scottish ministers to decide who can receive and transfer information that is currently protected under the data protection legislation. This legislation, going through Westminster, has been described by the same committee as giving ministers, and I quote, Henry VIII's powers of the crown. Is this the new Scotland of the 21st century which we all want to see? Scottish ministers, in our view, should be embarrassed and backbench SNP MSPs should really have been asking serious questions of their Government colleagues. It is surely embarrassing for Scottish ministers. They know that if this legislative change was brought to this chamber where it should be properly examined, it would never see the light of day in the form that it is here with us. It is quite convenient for Scottish ministers, it is convenient to bring forward this legislative consent motion. If passed tonight, it allows Westminster to confer on Scottish ministers almost unfettered power to drive a coach and horses through our data protection legislation. I want to address my next remark specifically to SNP backbenchers. I can almost hear them thinking, no, our ministers wouldn't do that. Felly, do not believe it for a moment. If Scottish ministers are granted this power unchecked by our Parliament, they will use it. Either they will or their successors will. I know that this might come as a surprise to some, but our current ministers will not be in power forever. I would love to have 60 seconds left. I cannot. I would love to have a debate about this. Even if you think that our ministers are benign, you cannot be sure where the next dot will be. It is not good enough for the cabinet secretary to say, as he might try in a few moments, that this consent motion is necessary to combat fraud. The ends never justify the means. This is far too important an issue to be left to a simple legislative consent motion, giving power to Westminster to act on our behalf and transfer these Henry VIII powers to Scottish ministers. We are not doing our job as MSPs if we allow this to happen. What is the point of having a Scottish Parliament if we allow this to go through without any real scrutiny? It is still not too late for the cabinet secretary to withdraw this consent motion and let us deal with this issue ourselves here in this chamber. It is perfectly possible for him to do so, and I urge him to withdraw it right now. I could deal with the two issues that I believe have been raised by Mr Mountain and Ms Grant. I note the concerns from relevant committees on the lack of time available to consider this LCM, and I acknowledge that it was lodged later than we would have liked. In mitigation, I would offer the following points. First, prior to lodging it, I did write to Mr Mountain on 12 January 41 days ago informing him of a number of the issues that we felt should be brought to the attention of himself and the committee. This was an attempt to be helpful and I hope that the attempt was successful. In paragraph 5 of that letter, we said that we hope to lodge an LCM shortly. Although the LCM was lodged later than we liked, precisely because we were aware of the complexity and plethora of issues that are dealt with in the bill, I frankly do not have time to go through them all as a matter of courtesy. In order to be helpful, I specifically wrote a non-statutory voluntary letter to the committee saying what we proposed to do. Since the complex bill was introduced at Westminster, it has, Presiding Officer, been necessary to discuss and pursue a range of amendments to the bill. The bill has undergone substantial amendment through its time in Parliament. It was important that our LCM to this Parliament reflected as closely as possible not the initial but the final proposals in this bill. I hope that that offers some explanation, but we take these matters very seriously, of course, and I wanted to give that assurance to the committee convener. I also can provide an assurance to the specific question that Ms Grant raised quite fairly, namely, all regulations will be carefully drawn not to breach any privacy rights and Parliament. This Parliament will have full scrutiny. Turning to Mr Rumble's remarks, I was grateful, I should say, to have the opportunity to have a private word with him about this matter. I am grateful to him for giving me some advance notice of the area of his particular concerns. Let me get straight to the nub of what concerns us today. We have carefully considered the DPLRC's key suggestions that Scottish Devolved Public Body is disclosing data to improve public service delivery, reduce fraud and tackle debt should be named on the face of the bill. However, we do not support that recommendation. We oppose that precisely because we wish to protect this Parliament's role in scrutinising proposals for data sharing. For this reason, we have therefore asked the UK Government not to table amendments to the bill to include devolved Scottish public bodies on the face of the bill. However, there are occasions where co-operation through the sharing of data is necessary. Let me give two examples. First, supporting prisoners on release. The bill would allow Scottish ministers to put before this Parliament regulations to allow the prison service to share with the DWP a specific limited set of data that would allow for a benefits package to be put in place on an individual's release from prison. Helping their on-going rehabilitation and the wellbeing of their families, that is a good thing. Second example is tackling fraud. Regulations under the bill's fraud provisions could allow Revenue Scotland to share specific data with other Government departments to help to reduce tax avoidance and evasion and to help to maintain tax revenue available to support Scottish public services. That too, I submit, is a good thing. Any such arrangements must be clear, codified and subject to safeguards around individual privacy. In any such data sharing proposals, ministers will need to state clearly who would be able to share data and for what purposes. To summarise the point in debt, fraud and public service delivery matters, which are quite fairly raised by Mr Rumbles, ministers must bring forward a statutory instrument to this Parliament. That instrument requires to be considered under the affirmative procedure. Therefore, this Parliament must shoot and will be consulted and shall decide any proposed usage of the powers on said matters. I am not sure whether being accused of being benign, as a minister, is a compliment or an insult. I will accept it in the spirit in which it is intended. Having undergone this extensive process, we are satisfied that the provisions of the bill are amended as they relate to devolved matters are appropriate. If Parliament passes the legislative consent motion tonight, although the minister has requested the UK Government to take attention to what they are saying, if we pass the motion tonight, it gives carte blanche to Westminster. Is that the correct position? That is not a point of order. You asked about a point of clarification. It is certainly a point that the members will be able to put to the minister. It is not really for me to adjudicate on such matters. The question on this motion will be put at decision time. The next item of business is consideration of business motion 4161, in the name of Joe Fitzpatrick, on behalf of the Parliamentary Bureau, setting out a business programme. I would ask any member who wishes to speak against the motion to press their request-to-speak button now. I call on Joe Fitzpatrick to move motion 4161. I formally moved. Thank you. No member has asked to speak against the motion. I will put the question to the chamber. The question is that we agree motion 4161. Are we all agreed? Yes. We are agreed. The next item of business is consideration of two Parliamentary Bureau motions. I would ask Joe Fitzpatrick to move together motion 4162, an approval of an SSI, and motion 4163, on designation of a lead committee. Moved on block. Thank you. I will return to decision time. There are five questions today. The first question is the amendment 4122.1, in the name of Kezia Dugdale, which seeks to amend the motion in the name of Shona Robison, on MND Gordon's Fightback, be agreed. Are we all agreed? Yes. We are agreed. The next question is that motion 4122, in the name of Shona Robison, as amended on MND Gordon's Fightback, be agreed. Are we all agreed? Yes. We are agreed. The next question is that motion 3925, in the name of Fergus Ewing, on the digital economy bill, be agreed. Are we all agreed? Yes. We are not agreed. We will move to division and members may cast their votes now. The result of the vote on motion 3925, in the name of Fergus Ewing, is yes, 112, no 5. There were no abstentions. The motion is therefore agreed. The next question is that motion 4162, in the name of Joe Fitzpatrick, on approval of an SSI, be agreed. Are we all agreed? Yes. We are agreed. And the final question is that motion 4163, in the name of Joe Fitzpatrick, on designation of a lead committee, be agreed. Are we all agreed? We are agreed. That concludes decision time. We turn now to members' business in the name of Colin Beattie. I will just take a few moments for members and ministers to change seats.