Meeting date: Thursday, June 21, 2018
Meeting of the Parliament 21 June 2018
Agenda: General Question Time, First Minister’s Question Time, Motor Neurone Disease Awareness Week, Provisional Outturn 2017-18, World Refugee Day, Business Motion, Decision Time
- General Question Time
- First Minister’s Question Time
- Motor Neurone Disease Awareness Week
- Provisional Outturn 2017-18
- World Refugee Day
- Business Motion
- Decision Time
Motor Neurone Disease Awareness Week
The next item of business is a members’ business debate on motion S5M-12476, in the name of Christina McKelvie, on MND awareness week 2018. The debate will be concluded without any question being put.
That the Parliament recognises that 18 to 24 June marks MND Awareness Week 2018, which will include Global MND Awareness Day on 21 June; notes that MND Scotland will be raising awareness of the illness and the impact that it has on families throughout Scotland; acknowledges the charity’s support services, including its new advocacy service, which seeks to act as a support link between people affected by the condition and the support that is offered by local services and councils; notes that, through the Scottish Government and in partnership with MND Scotland, there is now a legal obligation for NHS boards to provide communications devices to people who need these; recognises the events that are being organised as part of the awareness week, including a fundraising memorial dinner on 21 June for the campaigner, the late Gordon Aikman; congratulates MND Scotland on its first anniversary with its corporate partner the ScotRail Alliance, which has raised at least £71,000 through staff fundraising, customer collections and gifts in kind, and wishes the charity all the best in supporting, caring for and advocating on behalf of people throughout Scotland who MND impacts on.
I thank my colleagues across the Parliament who signed the motion that allowed us to have today’s debate.
Presiding Officer, 21 June is the day of global recognition of motor neurone disease. When I hear any mention of motor neurone disease, my ears instantly prick up, because for me it is personal, rather than professional. When I hear the words “motor neurone disease”, it recalls for me the pain, fear, grief, loss and shock that comes with an MND diagnosis, not just for the person affected but for their families.
MND has no boundaries; it is not determined by age, lifestyle or wealth. It strikes at any point in a person’s life and it has differing degrees of speed and impact. It is a rapidly progressing neurological terminal illness that stops signals from the brain reaching the muscles. The muscles start to waste and weaken and eventually stop working. That may cause someone to lose the ability to walk, talk, eat, drink or breathe unaided. Some people may also experience changes that affect their behaviour and ability to think and plan.
Not everyone will develop all symptoms, and how it affects individuals can vary significantly. That is why the current MND Scotland campaign to bust the myths around MND is so important. It has a brilliant video that people can share to get the message out about MND and what it means, which will help to tackle stigma and end discrimination.
No two people are the same and that is why the MND register is so important. The more data that we have, the better we will be at ensuring better short, medium and long-term care.
I first raised such issues in one of my first speeches in the chamber, 11 years ago, during a debate held by Margaret Mitchell. Eleven years ago, the average life expectancy following diagnosis was 14 months, but it is now 20 months. That is because of better care and more joined-up support. Members may think that that is only six months more, but I know that those six months are incredibly precious to people with motor neurone disease and their families.
When I hear the words “Motor Neurone Disease Scotland” I am filled with another set of emotions: pride, determination and, above all, hope. An amazing thing happens when we find out that a friend, relative or colleague has been diagnosed with MND: we spring into action. Over many years, I have seen those involved with MND Scotland do that so many times. People abseil off buildings, zip slide across rivers, climb into forgotten cities, walk great walls and walk over fire to raise money and awareness. Those actions give us all hope in the darkest of times; they tell us that people care and that people will literally walk over fire to make things better.
That is why when I hear “motor neurone disease”, I also hear hope—hope that we will find routes to better care, through funded specialist MND nurses or ideas for better support and the hope that the research work will bring a cure.
I believe that the work at the Euan MacDonald research centre with Professor Chandran and his team at the University of Edinburgh will make that much-hoped-for breakthrough that will take us to that much-needed cure. That is why the research funding from MND Scotland and the Scottish Government is so vital. PhD students working hard to understand and treat MND, working in conjunction with our best universities, surely give us all the hope of which I speak.
One of the cruellest aspects of motor neurone disease is the likelihood of some people to lose their voice. Our voice is such a distinct part of our personality, and many of us in this place surely like the sound of our own voices, so how would we feel if we could not raise them? We use our voices to raise the concerns that we all have in this debate today, and we used our voices to add to the voice bank project, which just might give someone back their own voice instead of an electronic voice. How powerful is that?
The MND Scotland let me speak campaign resulted in the Scottish Government giving the right to communication equipment from our national health service, and that came into force in March. It will give those who need it the necessary equipment, such as iPads and eye gaze technology, to enable them to continue to communicate effectively—another reason for hope. If any members heard the amazing speech last night by broadcaster Dennis Dick, using his own electronic voice, they will understand what an amazing commitment it is to provide that equipment to people.
I know that navigating the benefits system can be a daunting task for anyone, but if someone has suddenly lost their job due to their diagnosis, or a family member has had to give up their job to take on a caring role, the last thing they need is impenetrable forms and complicated processes to go through to get what they are entitled to. When those things are mixed with the constant reassessment and appeals, it all seems too hard for people to get anywhere in getting what they need.
When the Social Security (Scotland) Bill went through this Parliament recently, I saw a great opportunity to change the system to one of support, dignity and respect. I supported MND Scotland’s get benefits right campaign and was delighted to hear Jeane Freeman, our Minister for Social Security, announce automatic entitlement and lifetime awards for people with MND. Most people have no idea what an impact that will have on the life of someone with MND. The difference that will make to families is immeasurable and welcome, and I know only too well from what my family went through to get support just how important it is.
With the new two-person MND Scotland advocacy support team—if anyone has not met them, they should—I am sure that no one will wait very long for the help that they need. In the team’s first two months, 40 families have had support from them, bringing much needed hope—again, that word “hope”—to those families.
As I am sure members are well aware, I could go on about this topic at length, but I am keen to hear from my colleagues across the chamber about their experience, and I know that everyone wishes to address different aspects of the issue. However, for those we have lost and those facing life with MND, let us face the future with hope in our hearts, because if we can scale mountains and walk on fire, we can find that cure. I wish MND Scotland, and all MND and amyotrophic lateral sclerosis organisations around the world, a hope-filled global awareness day.12:58
I congratulate Christina McKelvie on a wonderful speech and on her long-standing commitment to talking about and raising awareness of motor neurone disease. She is always full of hope and focused on what the future might deliver.
Later this evening, I will be attending a fundraiser for MND Scotland in the name of my late friend Gordon Aikman, who throughout his life raised £600,000 for motor neurone disease research. That is an absolutely phenomenal amount of money, and we promised that in the event of his death we would keep raising funds for his campaign, with the goal of reaching £1 million as soon as we feasibly could. We hope to make a big step in progressing towards that goal at the dinner tonight, as part of which there will be an auction with a phenomenal range of prizes. I hope that you will not mind, Presiding Officer, if I do a little plug for that auction, because you can bid online right now for some of those prizes.
Can we bid here?
You can bid here, simply by taking your phone out of your pocket. I am sure that you have always wanted to do shopping from the chair there, Presiding Officer, and you can do that by using your mobile phone. Perhaps you are a “Coronation Street” fan. If you are, there is a guided tour for four people behind the scenes with Jennie McAlpine to be won. We have a signed Scottish rugby shirt, and we even have a wicket from Scotland’s win against England at the cricket just a week or so ago. There is a phenomenal range of prizes and you can bid now, so please do so.
I am delighted to share with members some news from the ScotRail Alliance, which is recognised in Christina McKelvie’s motion and is a fundraising partner for MND Scotland this year. Since the relationship between the charity and ScotRail was established, ScotRail passengers have raised £104,000, and it has been announced in the past hour—I found this out on my phone—that ScotRail intends to name a train after Gordon Aikman. That is the latest development today. The train will be the Gordon Aikman Express. I passed a note about that to Neil Bibby during First Minister’s question time. He is a “Thomas the Tank Engine” fan, and he told me that Gordon is the most powerful engine in the “Thomas the Tank Engine” stories. That is fitting for Gordon Aikman, as he was the most powerful engine behind a lot of campaigning work for motor neurone disease. I hope that the 7.30 service from Waverley to Queen Street will be served by that train, because he often took that train when he worked in Glasgow and lived in Edinburgh.
That allows me to make a connection between Gordon Aikman and MND awareness week. Using that train made Gordon Aikman aware of other people’s judgments about MND as a disease. He worked for many months after his diagnosis, but his body weakened and he was sometimes unstable on his feet, which meant that he sometimes tripped and fell. The nature of his work meant that he would get a train at half past 7 in the morning and a train very late at night. When people saw him trip and fall, they sometimes assumed that he had had a few too many drinks after work and was drunk. They did not stop to help; they thought that he was a guy who was just causing trouble, and they kept on going. He needed to be helped to his feet. Once he was on his feet, he could make his way home, but far too many people walked by. MND Scotland is doing a tremendous amount of work to break down the stigma around what the disease does to people and how people can respond.
Christina McKelvie said a lot about the need to find a cure. I hope that that cure will be found at the University of Edinburgh, and there is every sign that that could happen. Some 200 of the world’s leading researchers are sharing their data and research at the Euan MacDonald centre, and we need to give them the capacity to bring clinical trials to Scotland. We have not had MND clinical trials in Scotland for 20 years, and we are currently in a race with scientists in Canada and Israel to find a cure. I encourage the Scottish Government to continue its financial commitment to funding research and to continue to press the United Kingdom Government to do its bit alongside the pharmaceutical companies, which are very important in finding a cure.
I appreciate that I am going over my time, Presiding Officer.
Finally, there is a portal across the European Union for researchers to share their research on MND. Access to that portal could be affected by Brexit. I do not mean to make my remarks too directly political, but the issue is political. In leaving the European Union, it is possible that Scotland will no longer be able to be involved in that medical research portal to share research with other European nations. I cannot imagine that that issue is high up on the list of the Prime Minister’s priorities when it comes to Brexit, but I am sure that it can be on the Scottish Government’s list of priorities. Let us ensure that, if we are going to find a cure for MND, we find it in Scotland. I am sure that everybody is committed to that goal.13:03
I congratulate Christina McKelvie on securing the debate and on her long-standing campaigning in Scotland on behalf of people and their families who live with MND.
Like Christina McKelvie, I pay tribute to the outstanding work of MND Scotland, which continues to do much to raise awareness of MND and to support more than 450 people in Scotland who live with the condition. Its new “myth-busting MND” animated video campaign is excellent and has the potential to make a real difference in tackling some of the myths and stigma relating to people with MND.
I want to remember and commend my friend Gordon Aikman, as Kezia Dugdale has done. His inspiring fightback campaign achieved much, and his positive legacy lives on in many ways. His family, his husband, Joe Pike, and his friends Lawrence Cowan and Kezia Dugdale have really taken his legacy forward. They are very much in our thoughts today, and I wish the fightback dinner this evening every success.
I also want to praise the work of the My Name’5 Doddie Foundation, which has achieved a great deal in the year since Doddie Weir revealed his MND diagnosis. I welcome the close working partnership between that foundation and MND Scotland.
I congratulate those at the ScotRail Alliance, which has already been mentioned, especially the employees who continue to raise funds for MND Scotland. As Kezia Dugdale said, more than £104,000 has been raised so far as part of its three-year charity partnership. The class 170 train, which is branded with the MND Scotland cornflower logo, now serves the Edinburgh to Glasgow Queen Street route and is a great boost to the profile of the charity and the partnership.
One of the most exciting developments that has been taken forward in recent months is the new advocacy service that has been mentioned. It was launched by MND Scotland in April and has already supported 40 families across Scotland. The new service is an important addition that can help to ensure that people who are affected by MND do not have to struggle alone through the bureaucracy and delays that can often occur around accessing social care, home adaptations and accessible housing.
From my work with the Frank’s law campaign since I was elected, I know about the problems that are often associated with people under the age of 65 trying to access vital care. Therefore, I am pleased that there have been changes and that Parliament is listening to people and making a difference. From April 2019, people under the age of 65 who are assessed as eligible to receive free personal care will get that support, regardless of their condition, age, or means.
As well as making sure that we give the best possible and swiftest support to people who are diagnosed with MND and to their families, all of us will agree that finding a cure for MND must continue to be our ultimate aim. I am delighted that MND Scotland has committed to having a research portfolio worth £2.4 million by 2020, that eight projects are under way and that there is a live call for new research projects.
As Kezia Dugdale said, much of that innovative research is taking place in our region, at the University of Edinburgh. I recently visited the Anne Rowling clinic and was impressed and excited by the ground-breaking research work that is being undertaken by the centre for regenerative medicine. Clinical research, based at the Anne Rowling regenerative neurology clinic, is already delivering collaborative clinical projects, and we must ensure that such projects are protected in the future. As a member of the Health and Sport Committee, I know that we have ensured that that issue is highlighted, particularly with post-Brexit challenges.
That work, as well as the work that I saw with the voice bank initiative, is making such a difference. The voice bank initiative is still looking for key regional voices and I am pleased that many MSPs and Parliament staff have taken up the recent call for more voice donors to come forward.
We should all be rightly proud that Scotland is leading that ground-breaking research and scientific progress. Scotland is at the forefront of international research on MND, and it is brilliant that Glasgow will host this year’s international MND/ALS symposium in December.
I again welcome the debate as part of MND awareness week. I wish all those who are involved a successful week and that we raise even more money to support people with MND and their families. Above all, I hope that we continue to focus on and invest in the research that one day will lead to a cure for this devastating condition.13:08
I thank Christina McKelvie for securing debating time and for bringing this important topic to the chamber of our Scottish Parliament. I know that her commitment to ensuring that people who are living with motor neurone disease have access to the best possible care and support is deeply personal and long held.
At the MND reception last night, the chair of MND Scotland, Lawrence Cowan, spoke movingly of all the things that the disease takes from people with the condition and from their families. He also spoke of what it could not take and of the champions of MND Scotland’s cause. I am sure that people who are living with MND, and their families, are grateful that Christina McKelvie is one of those champions.
Each year for motor neurone disease awareness week, work is done to highlight in the press the stories of people who are affected by MND. The purpose of that is to spread awareness of MND and to share the physical and emotional challenges faced by those who are affected by this devastating disease.
MND Scotland has had some wonderful campaigning successes. In March, it became a legal right for communication aids to be provided on the NHS, and its campaign helped to change the terminal illness definition in the Social Security (Scotland) Act 2018, in order to help people with MND access the benefits that they need as soon as they need them.
This MND week sees the launch of an important new campaign: the “myth-busting MND” campaign. People with MND deserve to be treated the same way as everyone else is treated; they deserve to be treated with dignity and respect. An investigation by MND Scotland earlier this year found that that is not always the case. Responses to the MND survey and feedback from MND Scotland support groups highlighted the stigma and misconceptions faced by people because of their condition. This year, those personal stories will tie into a wider multimedia awareness campaign aimed at highlighting and challenging the stigma and misconception that exists around MND. If I may, I will share a few examples of those stories.
Gemma speaks about when her mother was diagnosed with MND and was pulled into human resources at work because her bosses believed that her slurred speech meant that she was drunk. Ruth went into a bank and felt that she was treated differently because her speech was slow. Another Ruth shares her encounter while trying to book a hair appointment: due to the reaction to her slurred speech, she felt that she had to leave without making an appointment. When Pamela’s daughter was diagnosed with MND, people thought that there was something wrong with her brain because her speech was slurred. When Gordon’s MND meant that he had to use a wheelchair, he found that people would cross the street to avoid interacting with him.
On top of all the difficulties that the disease brings, those everyday misconceptions and that stigma must have an awful impact on people and make the challenge that they face even harder. It is therefore really important that we do everything that we can to address the stigma and misconceptions. Those stories will be in the national, regional and local press to try to reach the maximum number of people. They are published online and on the MND Scotland website.
I have a bit of a call to action for colleagues. We all love our social media channels. If we all share those stories with our friends, followers and supporters we can get really wide reach across Scotland and do something positive in this MND awareness week.13:11
I do not think that it is possible to do a debate on MND justice after we have had speeches from Christina McKelvie and Kezia Dugdale. I congratulate them both on their excellent contributions, particularly Christina McKelvie, who has been a huge supporter of MND Scotland throughout my time in the Parliament and probably long before that. She has introduced this debate every year, hosts the parliamentary reception and speaks from experience and genuinely from the bottom of her heart in every debate around MND Scotland. I congratulate her on introducing the debate.
I also congratulate my friend Kez Dugdale, who was a huge campaigner alongside Gordon Aikman from when he was diagnosed. I know from the passion that she speaks with that she will be campaigning on MND for the rest of her life, or until we find the cure for MND. I congratulate her also on the auction prizes that she announced. As soon as she mentioned the four tickets to go backstage for “Coronation Street” and the wicket from the cricket match, a particular incident came to my mind. I am perhaps on a sticky wicket when I suggest that all that must be the positive outcome from her eating all the bugs when she was in Australia last year. I congratulate her on that; even then she was thinking of Gordon Aikman and this fantastic cause.
It is 16 months since Gordon Aikman passed away, but his legacy and the campaign that he led live on. His determination, good humour and spirit remain an inspiration to us all. The memorial dinner this evening in Gordon’s name will be a chance to celebrate again his life and all the work that he did to raise significant funds to support the work of MND Scotland. Supporting that work means supporting people who have been diagnosed with MND and who need the care of MND specialists, as well as supporting the family of anyone diagnosed with MND. I wish MND Scotland every success. They had huge success in last night’s parliamentary event and are having success through this debate today, and I wish them success tonight and for the global awareness day.
The real prize is finding the cure for MND, which will be the best tribute and the most fitting legacy for Gordon Aikman, all MND patients, all the campaigners and MND Scotland. Every pound raised at the dinner will help to deliver a service for people currently living with MND and their families, and, crucially, it will help to support research into finding a cure. I welcome and applaud the work of MND Scotland and its chair, Lawrence Cowan, and all the organisation’s amazing volunteers.
With a spend of around £2.5 million to 2020, there is a real chance to support clinical research and find a cure. Scotland should be proud that we are leading international work in that regard. It will be a proud moment for us when we host the MND international symposium and bring together scientists and clinicians from across the world in my home city of Glasgow, to share their research, knowledge and learning as we hunt for a cure.
I want to ask the minister about specialist MND nurses. Our specialist nurses have experience and understanding of MND and other illnesses, and I thank them for the crucial role that they play, including in signposting patients and families, at various stages, to places where they can find support and access treatment and benefits. Will the minister update the Parliament on the learning from that approach and say whether consideration is being given to widening access to specialist nurses in all NHS health boards in Scotland?
I congratulate Christina McKelvie and MND Scotland, and I wish them all the very best in the future.13:15
I congratulate Christina McKelvie on bringing the debate to the chamber for the second year and I commend her for her continued and tireless support for people with MND.
It is hard to believe that it is a year since we last debated MND global awareness day and MND awareness week in the Parliament. That was a particularly difficult debate for me, coming as it did the day after my friend, the former Lions and Scotland rugby international, Doddie Weir, made public his diagnosis of motor neurone disease. Members will be happy to hear that the “wee jessie” tag has not gone away; it has stuck in the sporting community, and it will probably never go away for the rest of my life.
As we would expect from Doddie, he has chosen, like Gordon Aikman before him, to speak out and raise awareness of the devastation that this disease brings. That is what it takes to get things done: speaking out, loudly and strongly, about what is wrong and what needs to change. Of course, Doddie speaks louder than most—his fashion sense has given him years of practice in speaking loudly enough to be heard above the noise of his rather exuberant suits.
Doddie has already surpassed medical expectations. He was told that he would not be able to walk by now. He is still on his feet and he is still relentless in driving home the MND message. That is very much due to his sporting heritage: anyone who wants a sportsman to do something should tell him that he cannot do it.
As politicians, we are in a prime position to hear about the impact of conditions such as MND. We receive briefings from charities, we attend receptions and we speak to medical professionals. For me, the biggest insights always come from the people who are living with such conditions. Just yesterday in the chamber, I talked about the experience of one of my constituents who has cystic fibrosis. The words of her mother were far more powerful than anything that I could have written myself.
More often than not in the Parliament, we speak about people with medical conditions in the abstract. We talk about patients and sufferers and their families. Often that is the right thing to do. Difficult decisions have to be made and sometimes that forces us to place the rational above the emotional. However, there are times when the only way to achieve real change is to put a human face on an issue. Doddie Weir has taken up the baton—or picked up the ball, depending on members’ sporting preferences—and run with it.
For many members, the most prominent face in our minds today will be that of Gordon Aikman. For many people in Scotland, most of their knowledge of MND’s impact comes from the interviews that Gordon gave and his MND diaries in The Sunday Times, which should be required reading for anyone who is looking to understand just how much MND affects a person’s day-to-day life.
Gordon and now Doddie remind us all that what we do matters. They remind us that the decisions that we make in the Parliament have weight and consequences, and they remind us that who wins and loses politically matters a lot less than who wins or loses in life.
I look forward to attending the Gordon Aikman dinner this evening, at which we will be hearing from Doddie again—I think that he is doing the auction; members should brace themselves.
Raising awareness of conditions such as MND allows us to put ourselves in other people’s shoes and helps us to make better decisions. The number of people with MND at any one time pales into insignificance against the number of people with cancer or heart disease, for example, but how we deal with such conditions is not purely about numbers; it is about people.
I never had the opportunity to meet Gordon Aikman—I was in a room with him once but I never got the chance to speak to him—but I did not need to meet him to know that we should all feel his loss. I see what Gordon and his fightback campaign did in a short space of time, and I cannot help but wonder what he could have achieved given the chance to live a longer and healthier life.
Gordon and Doddie are sources of inspiration, but it takes many more people to turn that inspiration into reality. Everyone who raises funds, campaigns for change and helps to educate us all will, in time, deliver that life-changing treatment or cure for MND that Christina McKelvie talked about.
I have far too much to say but I will try to get to the end of it if I can. Earlier in the week, I spoke to Scott Hastings, who is part of Doddie Weir’s foundation, and I asked him what he would ask for. He said that Scotland is a world leader in life sciences, so perhaps the Scottish Government could get behind research, especially MND research. The eyes and ears of the global MND community will be on Glasgow at the end of the year for the annual conference. I believe that the Scottish Government can back MND with unprecedented support for more research. The foundation is trying to put in place Doddie’s docs, which is a concept that will look to encourage the brightest minds of the future to commit to life sciences and MND. The ask is that the Scottish Government joins Doddie on that journey.13:21
I am pleased to be able to respond on behalf on the Government as we mark MND awareness week and global MND awareness day. I thank Christina McKelvie for bringing the motion to Parliament and securing another important debate on MND. I recognise her personal commitment and experience on the issue.
I also recognise the importance of MND Scotland’s bust the myths campaign. The organisation continues to refresh awareness raising on MND to ensure that the condition is always at the front of our minds. That is an important role.
I join others in paying tribute to the work that MND Scotland does to provide the invaluable emotional and practical support that has made such a positive contribution to so many people’s lives, as well as its support for the relentless drive to find a cure that will minimise the effects of this devastating condition. We will join MND Scotland and others tonight to shine a blue light on some of our buildings to raise awareness of MND.
Much progress has been made in the past couple of years, so it is important to reflect on some of that and recognise the dedication of those who have MND or are affected by the condition who work with us to make a difference. Gordon Aikman’s fightback campaign was instrumental in driving change. It was fantastic to hear about the Gordon Aikman Express—he would like that a lot. Kezia Dugdale also gave a good plug for some of the auction prizes; I will certainly have a look and I encourage others to do so too.
One of Gordon Aikman’s main achievements was the doubling of the number of MND specialist nurses. We now have an extra £2.5 million a year, ensuring that all specialist nurses are funded by the NHS. That is a really strong legacy from Gordon. His strength of looking beyond himself to strive for others was an inspiring story of courage and tenacity.
Members in the chamber today and others elsewhere this week have shared through MND Scotland’s awareness campaign their own stories that emphasise the day-to-day reality of living with MND. One of the most tragic effects of the condition is the loss of the ability to speak. Being able to communicate and having freedom of expression is a basic human right that we take for granted.
We have legislated to place on NHS boards a duty, supported by Scottish Government guidance, to provide communication equipment to people who cannot speak or have difficulty with speaking. Technology such as speak unique is proving to be invaluable in supporting people to continue to communicate. Christina McKelvie told us about how Dennis Dick used such technology at yesterday’s parliamentary reception for MND so that he could eloquently share his experiences using his own voice. Dennis and other people who use communication equipment tell us that it is vital that people do not just get a voice but get their own voice back, which can be very powerful indeed.
We have provided £200,000 of funding to the Euan MacDonald centre voice bank research project to pilot voice banking in the NHS. Voice banking enables people’s voices to be used to build personalised synthetic voices for communication equipment when speech becomes difficult. That is evidence that innovation remains crucial in supporting people to live with MND and that research is essential for the development of new and effective approaches to the diagnosis and treatment of neuroprogressive conditions.
Kezia Dugdale made an important point about the medical research portal. The chief scientist office has communicated concerns to the UK Government on the potential impact on research mobility, clinical trial regulations and funding shortfalls. I am happy to keep her informed as we continue to raise those issues.
We hosted a research event earlier in the year, as we remain committed to working with partners to attract new clinical trials to Scotland. My response to Brian Whittle is that we will do whatever we can to help in that regard. The work of Doddie Weir and his campaign in that space is fantastic.
Since 2015, we have invested more than £750,000 in MND research, including £240,000 for a second clinical academic fellowship in MND research, which is being delivered in partnership with MND Scotland. Earlier this week, I announced more information about the fellowship. This time last year, we announced the Gordon Aikman scholarship programme, which opens again today for applications.
Beyond the investment that we have made in research and specialist care, we have acted on other pledges that will have great impact on the lives of those with MND and those close to them who are coping with the condition. We have provided funding to support the implementation of the Carers (Scotland) Act 2016, which is important. Indeed, 1 April saw the extension to carers of new rights to support and information and to be heard in decisions about support for those they look after. As Miles Briggs mentioned, we have also legislated to extend free personal care to those under 65. That will come into effect on 1 April 2019 and will help people with MND.
Christina McKelvie mentioned the Social Security (Scotland) Act 2018, which the Parliament passed earlier this year. That is the first step in building our own social security system—one that is based on dignity, fairness and respect. The central principle of our approach is to ensure that terminally ill individuals are provided with the support that they need, when they need it. Christina McKelvie spoke about Jeane Freeman’s commitments in that area for people with MND.
We also continue to strive for improvements in the delivery of our health and social care services. We challenge healthcare professionals to ask what is important to the person receiving care and to engage in shared decision making about treatment options. Listening to service users and providers is instrumental in getting that right, and that is why our first national action plan on neurological conditions is being co-produced with clinicians, the third sector and those who live with conditions such as MND. I thank everyone for their continued support for that work.
We have gathered evidence in order to understand the prevalence of neurological conditions and the needs of people living with those conditions, and to establish the configuration of services. This week, we are holding three events to share our findings so far and to discuss priorities for inclusion in the draft action plan, which we will consult on later this year.
We have also been working closely with Healthcare Improvement Scotland as it reviews its standards of care for neurological conditions so that people will know what to expect when it comes to the quality of care that they should receive in healthcare settings.
I thank those who have allowed their personal stories to be shared. MND touches the lives of many families across the country. This year’s awareness campaign highlights progress but is also about culture change and building on what our society does to understand the condition and support others to live their lives well. As a Government, we will continue to work with partners across areas such as health, social care, welfare and housing to enact that transformation for people with neurological conditions such as MND.13:29 Meeting suspended.
14:30 On resuming—