Hansard

I welcome the opportunity to open this debate on celebrating the life and work of Gordon Aikman and the Gordon’s fightback campaign. I start by offering my and the Parliament’s condolences on their loss to Gordon’s husband, Joe Pike, and his friends and family who are present today. I welcome them to the gallery.

I met Gordon on a number of occasions and was always struck by his determination to make things better for not himself, but others. I am aware that many members across the chamber attended Gordon’s memorial service on Saturday and that the First Minister and Kezia Dugdale paid their tributes then. Although I recognise that the debate might at times be a sombre occasion, particularly for members who knew Gordon very well, I hope that members will take this opportunity to pay their own tributes to Gordon and, importantly, to celebrate his life and achievements. I am, of course, happy to accept Kezia Dugdale’s amendment.

Gordon was born in Kirkcaldy in 1985 and attended Kirkcaldy high school, where he was head boy. He went on to graduate from the University of Edinburgh in 2007. In the next year, he started work in the Parliament as a researcher for the Labour Party. He quickly established himself in the Parliament and gathered respect across parties as someone with an eye for detail who had huge passion for his work. He went on to earn the nickname “Mr Fourteen Percent” after it was revealed that 14 per cent of all freedom of information requests that the Government had dealt with had come from him. I am sure that members would agree that a debate in Parliament is a fitting tribute to him. When I met Gordon’s husband, Joe, earlier today, he told me that Gordon’s inbox is still receiving email responses to his recent FOI inquiries.

Sadly, we know that Gordon’s career in politics was eventually and inevitably cut short, but he did not accept that his contribution to public life was over; in fact, quite the opposite was the case. He galvanised efforts and went on to lead the incredibly successful Gordon’s fightback campaign with MND Scotland. Many of us across the chamber took part in the ice bucket challenge, which helped to raise in excess of £550,000 for MND Scotland. That is an exceptional sum, which has been invested in research that is aimed at finding a cure for MND.

In the time that followed his diagnosis, Gordon achieved a huge amount; in fact, it could be said that he achieved more in those years than most people would achieve in a whole lifetime. As he said in one of his newspaper columns:

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

The Gordon’s fightback campaign initially had five pledges, which grew to a total of seven as his campaign expanded. One of the most important aspects of that campaign was his call for action on MND specialist nurses. He wanted the number of nurses in Scotland doubled and for those nurses to be paid from the public purse. Gordon was very persuasive and the Government listened to him. We invested £2.5 million of additional recurring funding, enabling us to more than double the number of MND specialist nurses in Scotland, while ensuring that they are indeed paid from NHS Scotland funds.

Furthermore, the Scottish Government, MND Scotland and the University of Edinburgh jointly developed and funded a new national lead/consultant nurse for MND, who will develop a strategic approach to delivering services for people with the condition. That will be a lasting legacy of Gordon—improved care and, ultimately, a better quality of life for people who are diagnosed with MND and other long-term conditions.

We know that research was also a hugely important aspect of Gordon’s campaign. The desire to find a cure for MND was, of course, significant for Gordon. He said:

“It’ll be too late for me, but we can and we must find a cure for the next generation.”

In our 2016 manifesto, we committed to funding three research PhDs in MND and a further three in multiple sclerosis. As such, we are funding a bid from the University of Edinburgh that involves the universities of Aberdeen, Dundee, Glasgow and St Andrews. Our total investment is in the region of £575,000 over the five-year duration of the programme. The bid combines MND and MS PhD studentships in an integrated training programme. The universities involved agreed to a matched funding arrangement, meaning that overall, a cohort of 16 PhDs will be created for work in neurodegenerative disease research.

Bringing MND clinical trials to Scotland was an important aspect of the improvements in research that Gordon wanted. Our Chief Scientist Office funds NHS Research Scotland’s dementia and neuroprogressive disease network. The role of the network is to support the delivery of clinical research in neurodegenerative conditions, including MND, so I have asked the Chief Scientist Office to request that the network organise a research event to discuss how best to respond to the challenge of bringing such clinical trials to Scotland.

I hope that those commitments and the research that is being undertaken around Scotland will help us to work towards the day when Gordon’s dream of a cure for MND is realised.

One of the worst aspects of MND is that up to 95 per cent of patients eventually lose their voice. Gordon called on us to guarantee MND patients a voice by changing the law around access to augmentative and alternative communication equipment. He was instrumental and played a leading role in driving forward improvements to the lives of people who use and need alternative and augmentative communication.

An outcome of the dedicated efforts and commitment of Gordon and all those whom he worked alongside—especially members of the augmentative and alternative communication collaborative—was this Parliament passing part 4 of the Health (Tobacco, Nicotine etc and Care) (Scotland) Act 2016, in March of last year. For the first time, ministers in Scotland have a legal duty, which gives people a statutory right, to provide communication equipment and support for all children and adults who have lost their voice, are at risk of losing their voice, or have difficulty speaking.

We have reconvened the AAC advisory group, which is formed of people who use AAC equipment and people from a wide range of backgrounds who have expertise in this area. Gordon was a much-valued member of the advisory group and he will be greatly missed by his friends and colleagues in it.

As part of our on-going work, we recognise that voice banking—the recording and storing of people’s voices—could be a valuable additional service, especially as people who use augmentative and alternative communication tell us that it is vital that patients get back not just a voice, but their own voice. As such, we have awarded £200,000 of funding to the Euan MacDonald centre research project Speak:Unique to pilot voice banking at sites in the NHS. That work began last year. Preserving one’s own unique voice is invaluable in enabling people to retain their personal identity, as well as enabling family and friends to continue to develop lasting memories of their loved one and their voice.

Gordon valued the relationships that he formed with all those involved in his care, including professionals. He was constantly striving to seek out treatments and approaches that would improve the quality of his own and other people’s lives. That is why I am delighted to announce today that I have established a scholarship programme in honour of Gordon. The Gordon Aikman scholarship will fund professionals or individuals with knowledge of MND to take forward research into new and better ways of caring for people with the condition. It will provide £25,000 a year to support individuals and professionals to develop practical improvements in the way in which people with MND are cared for, such as sharing best practice, specialised physiotherapy or developing a better understanding of carers’ educational and support needs. The scholarship scheme will accept applications from people who work in health care, from those affected by MND and from their carers, whose experience and expertise are invaluable in helping continually to improve care. I very much hope that the programme will continue to drive forward the improvements in MND care that Gordon has kick-started in Scotland, and will be a fitting tribute to his memory.

Gordon was also passionate about the social and economic impacts of MND. He campaigned for changes to the living wage for carers, to have care charges outlawed for those with terminal illnesses and for benefit applications and assessments to be fast tracked. Gordon has made a difference in all those areas.

The living wage will be paid to all adult social care workers in Scotland. That will mean a pay rise to £8.45 per hour from May this year, which will benefit up to 40,000 care workers.

In 2015, we agreed, in partnership with COSLA, that no one under the age of 65 in the last six months of a terminal illness should be charged for the care that they receive at home. That was a step towards the vision that Gordon campaigned for.

I have committed to working with councils to ensure that there is a fairer system of charging by local authorities. On 6 December 2016, I committed to conducting a feasibility study and to extending free personal care to all those who require care and who are under the age of 65. I expect the study to report to me in the summer.

Finally, on social security and the disability benefits to be devolved to Scotland, I confirm that, when the powers for disability benefits transfer to this Parliament, we will ensure that a fast-track system is in place for people who are terminally ill, so that payments can get to those people as soon as possible.

In closing, it is absolutely clear to me that Gordon Aikman’s campaign has transformed care for people with MND. His huge achievements will have a practical, everyday impact on the lives of people with the condition and, indeed, other conditions. The credit for that lies absolutely with the tireless, selfless efforts of Gordon and everyone who worked with him.

It gives me great pleasure to move the motion in my name, and also to say that the work is not over. The commitment that I want to give to Gordon’s family, to his friends and to the chamber, is that we will strive to continue to make the lives of people with MND better and, importantly, to make sure that we keep his family informed of the progress being made.

I move,

That the Parliament recognises the outstanding contribution of Gordon Aikman in improving care, services and research in Motor Neurone Disease (MND); pays tribute to his work to raise awareness of MND and the challenges faced by those who live with debilitating neurological conditions; recognises the many committed individuals who continue to work on improving quality of life for people who live with MND, and believes that the legacy of Gordon’s Fightback campaign will bring benefit and comfort to the lives of people with MND, and their loved ones, for many years to come.