 The final item of business is a member's business debate on motion 3062, in the name of David Torrance, on MS Awareness week 2022. That debate will be concluded without any questions being put, and I would ask those members who wish to speak in the debate to please press the request to speak buttons. I call on David Torrance up to seven minutes, please. Thank you, Presiding Officer. I would like to thank my colleagues for giving their support to motion and to those who are speaking this evening. I would also like to recognise the contribution of my colleagues George Arden in hosting this debate over many years that I have preceded. I can guarantee that with no mention of Paisley in my speech tonight. This year MS Awareness week runs from 25 April to 1 May. The week provides an opportunity to shine a light on what is often an invisible and misunderstood condition. Currently affecting more than 900 people in Fife and 15,000 across Scotland. MS is a long-lasting disease that can affect the brain, spinal cord and optic nerve. It can cause problems with vision, balance, muscle control and other basic bodily functions. Not every MS patient is affected by a condition in the same way. In reality, symptoms experienced by an individual can often fluctuate on a day-to-day basis. The fact is that effects are very often different from everyone who has a condition. Some people experience mild symptoms that don't require treatment, while others will have trouble getting around doing daily simple tasks. For some, symptoms can worsen with time, and living with MS can affect many aspects of daily life, including health, wellness, relationships and careers. A diagnosis of MS means that people may have to adapt a new lifestyle, which brings us to a female this year's awareness week and certainty. Certainty is one of the hardest parts of any progressive and unpredictable disease, even though the symptoms of itself may be manageable. Not knowing what the future holds makes it impossible to plan work and social activities. Everyone affected by a condition struggles with the unpredictability of MS, but it is clear that some people find it particularly hard to accept. MS can be difficult to deal with, and the circumstances that surround the diagnosis can make people feel many different emotions, often putting great strain on relationships with friends, families and loved ones. Some studies have shown that the rate of divorce is high in families where one partner is suffering from MS, with the change in dynamics from partner or lover to carer, often taking its toll on relationships. Unpredictability of when MS symptoms will strike can lead to strain on any relationship due to development dependency on a healthy partner. The impact of a common illness such as MS on education and employment can also have a profound effect. Mis-deadlines, absences, disruptions and failures to complete studies can result in students having to manage their expectations of what they are able to achieve on the settings and setting the bars lower to accommodate their illness and associated limitations. For those in employment, there are often some barriers but no level of support can negate. In Fife's barriers have been recognised and addressed by Fife branch of multiple sororos society. Together with Fife College, they have set up a scholarship to support people with MS while we study or retrain. One important aspect of a scholarship that sets its path for many other avenues of financial support is that it can be used for anything that helps people with MS to cope with living with uncertainty of their condition. For example, if they wake up one morning too tired to take the bus to college, they will be able to afford a taxi. Progressive illnesses such as these are vital and are just one reason why support groups are so important because MS varies considerably from person to person and the severity and the course of the disease, the value of talking and connecting with people who truly understand and are facing similar experiences and challenges as you are priceless. The emotional and social support offered through these groups can quite literally be a life saver. For many people it can be their only means of socialising. For others it is an opportunity to discuss with peers subjects that they simply will not discuss with anyone else, even their GP. For example, sexual dysfunction can be common in people with MS, but many lack the confidence to broach a subject with healthcare providers, preferring instead to discuss the subject with peers that they trust and feel more comfortable with. I do not believe that this is a reflection on our health or social care profession, but rather a recognition that different conditions and environments help people to open up and express their concerns. That is not just medical or social uncertainty that makes life with MS difficult. As a consequence, financial uncertainty is almost go hand in hand with a condition. The replacement of personal independent payment in Scotland with adult disability payment has been welcomed by many people I have spoken with. With particular praise given to a commitment that the Scottish Government to treating people with dignity, fairness and respect while assuring a very different delivery of disability benefit. I believe that many important and significant lessons have been learned from the PIP model, which caused anxiety, many claimants, untold stress and anxiety over the years. Only a few days ago I sat and listened in horror to one of the ladies living with MS told me of her experience of undergoing these assessments. She described the process as cruel, tiring and ineffective, particularly for anyone with a neurological condition such as MS. She recalled the last assessment that she attended when she witnessed a gentleman leaving the centre in a highly emotional state who then simply sat in his car sobbing. I very much welcome the Scottish Government's approach, which will see the scrapping of the functional assessments, removal of the routine face-to-face assessments, recognitions given to people's individual needs and understanding that fluctuation conditions must be taken into account and the choice of how to apply offered. For people with MS navigating the mentally draining transition from who you were to who you are now is traumatic enough without the additional ordeal of an uncaring benefit system, for many it will be our first time on benefits forced out of employment by a body that no longer can do the things that you used to. I currently sit on the citizens participation of public petitions committee and I am pleased to have contributed to the on-going work regarding the petition lodged by Keith Park on behalf of the MS Society, which calls on the Parliament to urge the Scottish Government to remove the 20m rule from opposed disability payment eligibility criteria or identify an alternative form of support for people with mobility needs. The petition notes that under a rule people who can walk one step over 20m are not qualifying for the right level of mobility support, leading to people with MS losing their independence, leaving some feeling trapped in their homes. As a committee, we have considered numerous submissions so far and engaged with a number of organisations, including MS Scotland and the Scottish Government. It is clear initiative that it is felt deeply by many people living with just not MS but with neurological conditions. I welcome the Scottish Government's commitment that facilitated an independent review of adult disability payment in 2023, one year after the delivery has begun, which it believes will enable all the illegible criteria to be considered. In conclusion, as one very astute lady had recently told me, if she sees a person with MS, then they are having a good day, because when you are having a bad day you just won't see them at all. I would like to extend many thanks to everyone who has come along and joined us in the garage today, because collectively we all have a duty to better understand the negative effects of fatigue, cognitive impairment, emotional burden and decreased physical function on a personal and professional life of people living with multiple cirrhosis and the responsibility to help those burdens. Whatever way we can, not just during awareness week but all year round. Thank you, Mr Torrance. I would just gently remind members who are joining us in the gallery, members of the public, and it's great to see you all there. We're not really allowed to clap from the gallery. I would like now to call Marie McNair to be followed by Donald Cameron. Up to four minutes please, Mr McNair. Thank you, Presiding Officer. Can I actually, David Torrance MSP, for securing this important member's debate? I pay tribute to MS Society Scotland for everything they do in supporting those with MS and their work to raise awareness. MS is unpredictable and different for everyone, which is why the theme of this week's MS awareness week is uncertainty. Multiple cirrhosis is a chronic condition that affects your brain and spinal cord, with MS the quoting that protects your nerves, myelin is damaged. This causes a range of symptoms and problems with how we move, think and feel. An MS should remain system, which normally helps to fight off infections, mistakes myelin for a foreign body and attacks it. This damages the myelin and strips off the nerve fibres either slightly or completely, leaving scars known as lesions or plaques. This leads to damage in dyswp, sorry, to members' misuse travelling along nerve fibres, causing them to slow down, become distorted or not get through at all. As well as lesion myelin, there can sometimes be damage to the actual nerve fibres too. It is this nerve damage that causes the increase in disability that can cause an occur over time. One of my constituents recently described MS to me, and she describes it as this. If you imagine the brain as a big mass of intricate wires that operate the whole body, MS causes the protective sheath around each wire to deteriorate so that the wires do not function properly, but because the brain is amazing, it tries to still find a way to send the signals in other ways, sometimes crossing the wires. That is why folk with MS often battle with fatigue, because just walking and talking can seem like trying to juggle while treading through a snowdrift or like trying to do complex calculus while reciting the alphabet backwards. It is hard to pinpoint the exact symptoms of MS as it can be different for everyone who is affected. However, the central nervous system links everything that your body does so that multiple cirrhosis can cause many different types of symptoms. The specific symptoms that appear depend on which part of your central nervous system has been affected in the job of the damaged nerve. Some of the most common symptoms of multiple cirrhosis, including eye problems, numbness and tingling feelings, are sometimes described to be about like pins and needles, fatigue and pain. MS symptoms can come and go and change over time. They can be mild or more severe. The symptoms of MS are caused by your immune system, attacking the nerves in your brain or spinal cord by mistake. Those nerves control a lot of different parts of your body. That is why you can get MS symptoms in many parts of your body and why everyone's MS is different. Scotland is one of the highest rates of MS in the world. Around 15,750 people are living with MS in Scotland. The new figure means that, according to MS Society Scotland, 1 in 300 people in Scotland are living with the potentially disabling condition that damages the body's nerves and makes it harder for people to do things such as walking, talking, eating and thinking. Initiatives by the Scottish Government have contributed to an environment that is conducive to research on MS. For example, the Scottish Government has made it compulsory that anyone diagnosed with MS is contacted by a specialist nurse with 10 days. There is also an astral register for people diagnosed with MS. It is important to keep raising awareness about MS in Scotland, particularly given the high rates of the condition. Research has come on massively in recent years and more people know the better. It is paramount that we raise awareness to make sure that people know how MS can affect individuals and how varied it can be. In conclusion, I put on record my thanks to my constituents for sharing their experience and contributing to my real-life knowledge of the condition. I am honoured to be their voice in this debate and welcome this opportunity to help to raise awareness. I now call Donald Cameron to be followed by Clare Adamson up to four minutes. Thank you, Deputy Presiding Officer. I begin by expressing my thanks to David Torrance for securing time for this important debate. I would also like to pay tribute to the MS Society Scotland for the support that it has provided both for this debate but also as a secretariat of the cross-party group on MS in the important work that it does in supporting people living with MS. I know that there are many in the gallery tonight. David Torrance and I have the honour of being co-conveners of that CPG. I am very pleased that it has begun this session of Parliament with such energy and enthusiasm. I also cannot let this moment go without mentioning the incredible shift that George Adam put in on behalf of that CPG over the years. I spoke in this same debate in 2017 and much has changed in the last five years, with a variety of new treatments approved by the Scottish Medicines Consortium, both for active relapsing, remitting MS and for primary progressive MS. Last year, Scotland was the first country in the UK to approve the use of Ziposia, a drug that allows recipients to take it at home, thereby avoiding clinical appointments or something that will have been particularly beneficial during the pandemic. All of these developments in the way that MS has treated and managed have only come about in recent years because of the continued and sustained focus on MS at many levels. We try our best here in Parliament to keep the pressure on, but the work of third sector organisations, health professionals across the NHS and, of course, the actions of the wider public deserve to be commended. It is, of course, a far cry from just over 20 years ago before this Parliament existed when there were no treatments available for MS in Scotland as the motion notes. David Torrance spoke movingly of the toll that MS can have on people in their everyday lives. There are massive human costs. I have personally witnessed the development of MS treatments from the perspective of my father, who has lived with the condition for 37 years. He was diagnosed in the mid-1980s when knowledge of the condition and how it would impact his life in the long run were still relatively unknown and, as ever, I pay tribute to him and his example and his courage. Fortunately, he has received impeccable care and new treatments have helped him and countless others cope with MS and allow them to live full and happy lives. Indeed, it is welcome that, in 2022, there are some 17 disease-modifying therapies available to people living with MS, which help to minimise the severity and frequency of MS relapses, thus slowing the progression of the disease. However, as I know, and as is the theme of this year's campaign, MS is a condition wrought with uncertainty—uncertainty about what lies ahead, uncertainty about when it may flare up, uncertainty about how much worse the condition may become and how best to care for someone with MS in those circumstances. That uncertainty has, of course, been amplified during the pandemic, particularly because of the vulnerability of those who live with MS as a result of having a weakened immune system and the inability to access vital services, including physiotherapy, mental health support and even sports classes. Even though we are two years into the pandemic and many services have evolved to allow people to access them remotely, including virtual appointments and virtual counselling, we know that Covid remains active and many people remain understandably worried about it. As the NHS begins to reopen and remobilise, it is more important than ever that people living with MS and, crucially, those who show symptoms of MS are able to access services swiftly. That is why it was concerning that the remobilisation of neurological services was not specifically addressed in the Scottish Government's NHS recovery plan 2021. I hope that the minister may be able to touch on that point in her remarks when she closes. I also want to touch on the importance of high-quality palliative care in supporting people with MS. The progress that has been made in recent years to improve treatment options for people living with MS has been remarkable, and everyone in the MS communities campaigned for it and made it happen should be congratulated. However, much more needs to be done to improve access to specialist care and support and to remove some of the uncertainties that currently exist. Thank you, Mr Cameron. I now call Clare Adamson to be followed by Pam Duncan-Glancy. Up to four minutes, please, Ms Adamson. Thank you very much, Presiding Officer. I thank Dave Torrance for securing this to be this evening. I also send my thanks to the cross-party group on MS, many of whom are in the gallery, and we have both the conveners here with us this evening. I want particularly to pay tribute to the person who has done most to raise awareness of MS in the Parliament, and I do not mean my esteemed colleague, George Adam. I mean, of course, Stacey, who is also in the gallery this evening. I want to thank her just for being Urs Stacey. This is not the first MS debate that I have spoken in the Parliament. In fact, I think that I may have spoken it in everyone. There has been a feature since I was elected in 2011, and both George and David, now continuing that tradition of having this debate, is so important. I am always struck by the personal stories of my colleagues on these evenings to know just how many of us are personally touched by this condition. That is no surprise, because we know that Scotland has the highest rate of MS in the world, and with more than 15,000 people living with the condition. For that reason, I want to share my story as well this evening. I am no exception. I want to say a little bit about my sister, my big sister. She is my inspiration and has always been my hero. Eileen is 10 years older than me and is an MS after her. She is a retired GP and is still examined on behalf of the Royal College of GPs, a vital cog in ensuring that we have primary care doctors in the UK. She resides in England, and although Eileen no longer dies, in her possession, she has had, since she was still driving, a blue badge. Eileen calls it my precious. Apologies to the chamber, to Tolkien and to Andy Serkis, but it is her precious. Why is it so important to her? Because it gives her independence, it gives her the ability to continue to go about her daily lives, to have been economically and socially independent, to continue to work and take a full part in society. It quite frankly has given her certainty in an uncertain work life. My sister has been lucky. I am so frustrated at the number of representations that I have made often unsuccessfully for MS sufferers who rejected for blue badges because of the arbitrary criteria, which does not recognise the fluctuating symptoms from relapsing and remitting multiple sclerosis. I thank David Torrance for talking about this in terms of the benefits that we have come here before. A blue badge can be a lifeline to an MS sufferer that allows them to continue to work, to take a full part in society and to give them the confidence that they can go out knowing that they will be able to get back home safely, knowing that if they have a relapse or feel unwell, they can get back home safely and easily. It is so important, and I really want to make that plea that we work on doing something to improve the understanding of MS among those who are deciding what support is available to sufferers. That is why I thank again David Torrance and MS, both MS charities who have supported today for their work in raising awareness and trying to ensure that every way understands how difficult a condition this is and how important it is that MS sufferers get all the support that they need to allow them to have the best life possible going forward. I now call Pam Duncan-Glancy to be followed by Liam McArthur. Up to four minutes, please, Ms Duncan-Glancy. I want to start by saying a huge thank you to the MS Society for organising this debate, and I see them here this evening. For all that they and other organisations do to advocate for people living with MS, and my colleague David Torrance for securing tonight's debate. Throughout the pandemic and in the face of the rising costs of living, service closures and systemic poverty and inequality faced by members, those organisations have given their all to stand up for their members, relentlessly fought for the realisation of their rights and made sure that their voices were heard. They did so against the backdrop of uncertainty, the theme of this year's MS week. They were uncertain of their own funding, meaning extra pressure on staff and inability to properly plan for the long term. Uncertain of what was coming, uncertain of the twists and turns that they would have to navigate. As a disabled person, I know how it feels to live a life of uncertainty. Yet certainty is the one thing that we really need to ensure that we enjoy our human rights on an equal basis to everyone else. We need practical assistance as well as information space and time. Without those things and a certainty for them, even on a good day, people are left without dignity, freedom, control and choice. In fact, when asked by the MS society as part of their MS My Needs Survey, 67 per cent of those who responded said that they were scared and uncertain about the future. There are too many elements of their lives, of disabled people's lives and human rights that remain uncertain. Social care remains piecemeal. Many who need it are still living without the basic care that they need. People cannot get the adaptations that they need and are dying on waiting lists, spending their last years in houses that are not suitable for them. Transport is inaccessible. Even the transport that is accessible needs more planning than for non-disabled people. If you want to get a train, you have to call for assistance. If you want to get on a bus, you need to hope that there is not another wheelchair user already on board. If you want to ride on the Glasgow subway, well, tough. Last year, NASA announced that they are looking to put disabled people on the moon. Yet in my city, many disabled people cannot get from one side of the city to another. On average, it costs people with MS between £600 and £1,000 more to live. Disabled people are unsure whether they can make ends meet. That is why we need a properly functioning social security system that ensures that people have the money that they need. The Government should move quickly to address the adequacy and eligibility of disability benefits in Scotland and to assess the additional costs of being a disabled person, then to upgrade the disability benefits to match that. They must recognise that people's conditions, including MS, can fluctuate. There can be good and bad days. That is why the Scottish Labour Party stood alongside the MS Society to fight for the removal of the unfair 20 metre rule. Despite asking multiple times in committee, the chamber and in letters to the cabinet secretary for a commitment to do this, we are as yet to get reassurance. That is yet more uncertainty and I would urge the Government to provide that certainty on this soon. People should not be worried that they are going to miss out on money that they need. They should not be punished for having good days. We should celebrate people's good days and be there on the bad. Social security is just one way that we can bring more certainty to people's lives, but it is not the only way. We could restart care and respite services and ensure that unpaid carers get the breaks that they need, giving people the certainty that they need around their care. We could pay care workers £15 an hour to show them that their work is valued, make sure that they stay in the profession and attract new people to it, providing certainty that there are carers there to give the support that we need. We could provide care free at the point of delivery, making sure that people have the certainty that they need to know that they will not have to sell their home or spend their life's savings just to afford care that they cannot live without. This debate is about uncertainty and, as we have heard, there is far too much of that. However, I want to finish by saying that, amongst the uncertainty, one thing is always certain. Disabled people, people with MS, and other organisations will never give up. They are resilient, but they should not have to be. Scotland should just be better for all of us. Nevertheless, they and so we must persist in the fight for equality. I join others in congratulating David Torrance on stepping into the Dr Martin fuse of George Adam and stepping into one of his suits by the looks of things too. Genuinely, I thank David Torrance for making this debate possible this evening, and I thank the MS Society not just for the support that they have provided in briefings for the debate but for the work that Donald Cameron has done year-round in supporting the MS community. I have long taken an interest in this issue, not through personal experience myself but because I represent the constituency with the highest level of MS, not just in Scotland but anywhere in the world. As a result, in Orkneyt, it is a community that has been for a long time very supportive of those with and affected by MS. This was evidenced in recent months by young farmers whose bail-art competition had a focus on MS this year, and the remarkable tractor run organised by Graham Nicholson and Stephen Sinclair, which raised a phenomenal amount of money for MS as well as a couple of other local charities. Beyond that, we have an MS therapy centre that is greatly valued by the MS community. We are fortunate in having an MS nurse in the wonderful Moira Flet, who was the subject of previous debates where there was the focus on the work that MS nurses do. Genuinely speaking, while there is a great deal more to do, we feel broadly fortunate in Orkneyt in terms of the support that is available. In terms of previous debates, a focus in one of the earlier debates that I took part in was research. It is mentioned in David Torrance's motion this time round. Although Donald Cameron was right to talk about the progress that is made in recent years in terms of the approval of treatments, there is a long way still to go. However, we can draw confidence from the fact that here in Scotland, in particular, we are seeing world-leading research being taken forward by our universities and research institutes, including by individuals like Professor Jim Wilson at Edinburgh University, himself and our cadien. This gives us hope for the future. Again, I think that David Torrance was right to draw on the individual nature of this condition, not just between individuals but on a day-to-day basis for each and every individual. The theme of my MS, my life again, was reflected in previous debates. However, I remember attending a reception that coincided with an earlier debate and talking to my constituent Alan Jamison, who talked about the importance of providing opportunities for those affected by MS to gather, to share experience, to feel the companionship. As a result of the pandemic, that has, of course, been far more difficult. That risk of isolation has, I think, been felt acutely by those in the MS community. I know in Orkney a very popular watercolour class that was run previously, moved into the online arena. The classes were held in Zoom, they have now produced cards and indeed a book of watercolours that are accompanied by prose produced by P6 and seven pupils from the whole primary school, evidencing what can be done. However, it is such a relief that we are now seeing some of those opportunities and activities being re-established and starting up again in practices that are so important. In that line, I look forward to making a re-imperance with the Scottish Ballet at the end of this week, as it takes forward workshops in Orkney. I hope that it will proceed to a point where local dance practitioners, musicians and volunteers can help to provide those sorts of classes, recognising the importance of physical movement and mobility to not just the physical health of those with MS but the mental health as well. On an optimistic note, I note in the briefing from MS Society that it quotes one individual saying, my attitude is that nobody's got certainty, so just live your life to the fullest because you don't know what's around the corner. I think that that is an important message to convey. It reflects very much the attitude of my constituent Hailey Budge, who has announced that she is just about to embark on a flying scholarship and demonstrating that, as ever, she continues to take life by the horns. However, I thank David Torrance again for allowing the Parliament to have this annual debate. I look forward to further debates in the future and more progress in the years to come. I thank David Torrance for bringing forward this member's debate this evening. The theme of MS this year is uncertainty and uncertainty has been with us more than ever in the past few years. Covid, the war on Ukraine, the cost of living crisis. MS, as we all know, can be very uncertain for everyone living with it. It's a condition where people have good days and bad. When and if, how symptoms might change, how their condition might progress or whether their treatments will continue to work. In 2019, my MS, my needs survey revealed that only 40 per cent felt confident that they were able to overcome the challenges that MS may bring in the future. The most recent survey carried out ahead of MS this week, 67 per cent of respondents living with MS said that they were scared and uncertain about their future. As has been referred to already, Scotland has one of the highest rates of MS anywhere in the world. Over 15,000 people are living with MS in Scotland. Most people are diagnosed with relapsing, remitting MS. That is where symptoms suddenly get worse due to relapses and then gradually improve. Over time, many people diagnosed with relapsing MS will develop secondary progressive MS. They will stop getting relapses, but their disability will steadily get worse. Just 20 years ago, I think that Donald Cameron mentioned that there were no treatments available to halt the progression of MS. Thanks to the work of researchers in MS, community mobilised fundum, there are now 17 disease-modifying therapies that have proven Scotland to treat MS. Those treatments can help to minimise the severity and frequency of MS relapses, thus slowing the progression of the disease. Uncertainty, can that be exacerbated by a social security system that does not guarantee adequate support such as health services and the rising cost of things that will have a greater impact on disabled people than others? Across Scotland, local MS groups work tirelessly for their community, where there are supported and properly resourced experts, specialists, nurses and neurologists make an incredible difference to the lives of people living with MS. Llukey House, in my constituency, offers respite to MS sufferers on other long-term conditions. It was previously an MS-run facility. Llukey House is now up at a non-independent charity, but it still offers services to those with MS. The pandemic has been a very stressful and uncertain time for the MS community, not only were people with MS more vulnerable to Covid due to weakened immune systems brought on by their treatment, but services that relied upon were closed. In response to that, at the height of the lockdown in 2020, the MS Society co-designed the wellbeing hub to address their community's needs and to address service gaps, particularly in community-led services. The hub, funded by the Scottish Government's neurological framework fund, is person-centred. Those who work in partnership with MS professionals delivered online services that has been mentioned previously to enable us to support a much wider audience, including those with poor mobility or other commitments. The hub builds on incremental innovation, adapting and improving as we gather information from the participants. Today, more than 1,100 live-stream sessions have been delivered to around about 750 participants. Before the pandemic, the MS Society estimated that the average person living in MS faced additional costs of between £600 to £1,000 per month, depending on the severity on their condition. Only this lunchtime at the good food event that some of us attended, I spoke to somebody who raised that particular point. I did not have any MS, but I had a disability. Of course, that is really concerning, so I hope that the minister will be able to pick up that in that regard. The constant uncertainty that surrounds those who live in MS is never certain as to whether there are conditional progress or further stretch of already limited resources. A survey carried out by the MS Society, only 20 per cent of people living in MS told us that the Government paid for all their care needs, on average it said, funded around about 75 per cent of their non-medical costs, including self-management activities and therapies. Those figures were taken from surveys before the pandemic and before the rise in the cost of living. We can surmise the scale of the issues that are outlined and will only have grown. In conclusion, as parliamentarians, we need to ensure the ability to access financial support that is required. Matches that are significant rises in the cost of living ensure that those with disabled people who have the MS receive the financial support that they need. I now call Julianne Mackay to follow by Beatrice Wishart. Beatrice Wishart will be the last speaker before I ask the minister to respond. Up to four minutes, please, Ms Mackay. Thank you, Deputy Presiding Officer. I would also like to thank David Torrance for securing this debate today. Multiple sclerosis is a lifelong disease that is estimated to affect 2.8 million people across the globe and over 15,000 here in Scotland. The experience of living with MS is not always limited to having MS, but additional complications that come with the disease. Those additional complications can be wide-ranging and include issues such as bladder and bowel issues, paralysis, alterations to people's mental state, including symptoms such as forgetfulness, depression and even epilepsy. The theme of this MS awareness week is uncertainty. I asked a very dear friend of mine if she would mind writing something about her experience with MS. She is a wonderful woman who will support anyone who needs it and never complains about how she is feeling. That is absolutely reflected in her thoughts, which I am pleased to be able to share in her words today. She says, indeed, that the biggest issue with MS is the uncertainty of everything. It usually takes years to get a proper diagnosis due to the fact that you would normally experience symptoms over time, which on their own would never point to MS. It is only when you start experiencing several symptoms together that you tend to get an MRI scan. Sometimes that can be inconclusive, but in my case the scarring was easily visible. When you are first told that you have MS, it is quite a devastating blow, because there are no doctors or neurologists who can give you a road map of what you will experience. Every single person will experience something different and quite often have different symptoms at the onset. It is difficult to come to terms with the fact that you have no guarantee on how quickly it may progress. When I was first diagnosed, I was told that I had remitting relapsing MS. In my mind it was a case of seeing how long I was going to get between episodes. Each time you relapse, it is the uncertainty of how long it will last. As each week goes by, you know that there is less chance of regaining all the functionality that you had before the episode. In the earlier episodes, I was able to see an improvement after a few weeks and then, as the years went on, the symptoms of the relapse would linger for months. It got to the stage where, after a relapse, I never had any improvement and I have now been diagnosed with secondary progressive MS. I feel incredibly lucky because I am still able to walk and can manage to still look after myself, but I find it difficult to plan things due to the uncertainty of the disease. I can feel reasonable one day and the next I'm in so much pain that I'm unable to do anything. My sister had MS and she ended up in a wheelchair very quickly, so that's another reason to feel lucky. I'd like to put on record again my thanks to my friend for giving me her comments. Just two decades ago, there were no treatments available to those who had MS. Now, thanks to all those involved in the MS community from the NHS charities and dedicated researchers, there are now 17 disease-modifying therapies that have been approved in Scotland to treat various stages of MS. Those treatments now range from addressing the severity and frequency of MS relapses, those who are already living with relapsing remitting MS, and more recently, treatments have been greenlit to treat secondary progressive MS, as we've heard tonight. Even before the pandemic, the MS Society estimated that those living with MS face costs of an additional £600 to £1,000 per month. Those living with MS face additional costs on accessing essential goods and services, such as paying for additional electricity to power assistive technologies, and the requirement of higher heating bills to stay warm. On average, those living with an underlying and persistent health condition, such as MS, face living costs amount to the equivalent of half their income. I'd like to thank the MS Society Scotland for the incredible work of supporting those who live with MS, for their work to fund research, and for representing the MS community across the political sphere and wider society. As parliamentarians, we must tackle those very prevalent challenges, especially with the cost of living crisis and the impacts of the Covid pandemic, and to ensure that MS sufferers are provided the support that they need to ensure the best quality of life. Thank you, Ms Mackay. I now call Beatrice Wishart up to four minutes, please, Ms Wishart. Thank you, Deputy Presiding Officer, and thank you to David Torrance for bringing this important debate to the chamber today. Thank you for the MS charity for the work that you do. Uncertainty is the theme for this year's MS Awareness Week. Uncertainty often brings with it a sense of powerlessness, and that's what I'd like us all to consider when we try to find the means to support the lives of those living with multiple sclerosis. The Northern Isles have a high prevalence of MS with uncertainty still as to just why this is the case. Why, for example, do some families have multiple members with MS? Why do places like New Zealand and Canada have high rates of MS too, both countries with descendants of Arcadians and Shetlanders who emigrated there decades ago? Orkney, as my MSP colleague Liam McArthur has pointed out, Orkney has the highest incidence of MS anywhere in the world, and Professor Jim Wilson from Orkney himself has, with his team at the University of Edinburgh, been carrying out world-leading work on the subject over many years. Research continues into why there is great prevalence and for new treatments and therapies, but we all look forward to the day when we can say that we've found a way to stop MS. I note the 17 treatments available for MS in NHS Scotland, which is referenced in the motion. In 2019, a procedure that reboots an MS patient system, halting the progress of MS, was hailed as a huge step forward and recommended for use on the NHS in Scotland. Some have received this treatment abroad, and those who have undergone the treatment have said that it's halted and restored, some of what MS has affected. Treatment abroad, however, means costs. Those living with MS, as the MS Society briefing states, already spend between £600 and £1,000 additional costs per month. This could be for energy bills, goods, services, trying to stay warm. MS is unpredictable and offers much uncertainty as to how someone living with MS may feel at any given time. Perhaps it's feeling too warm in the height of winter, or other family members need the heating on, but only an electric fan can relieve MS symptoms. It may only be for 10 minutes, but this racks up the electricity costs. Even having a shower can require additions such as more towels. More towels create more washing, and more washing, more electricity. The MS Society briefing shows that only 20 per cent of people living with MS have all their care needs met by the Government. There are also costs that cannot be managed—the emotional pressure, the additional asks of partners, the impact on family life. Getting help from Government, such as PIP, often requires a walking test. What these tests don't measure is the long-term, changeable, fluctuating nature of MS. Walking any distance could feel much easier one day than the next. Appeals and bureaucracy contribute to the uncertainty and sense of powerlessness. The effort to overturn something that you know to be unjust can be exhausting. Our system has developed whereby people are forced through hopes of admin to survive, so with the uncertainty of MS comes a sense of powerlessness. We must address both and ensure that those living with MS and those around them feel supported. Support to ensure that they can ride the waves of uncertainty, feel empowered to speak out and have confidence that they will be heard. Presiding Officer, I am really pleased to be able to respond on behalf of Government this afternoon as we mark MS awareness week. I thank David Torrance for moving this important motion. As my colleagues have highlighted, Scotland has one of the highest incidences of MS, and as an MSP with a highland constituency, I am particularly aware that the incidence is greatest in our most northerly areas. I want to assure you that I am committed to ensuring that all people living in Scotland with multiple sclerosis are able to access the very best possible care and support. Late last year, I met the MS Society to discuss the findings of their Neurology Now report and how we can work together to drive up standards of care across the country. It is clear that working in partnership will help us to ensure that we focus on what matters most to people with MS. Although 20 years ago there were no treatments available for MS, we now have 17 in Scotland. That progress is thanks in no small part to the amazing work of researchers and MS charities, and today I want to pay tribute to their committed efforts to find more and better treatments for this devastating condition and to support those affected by it. I am very grateful to the minister for taking interventionist's right to point to the developments that have been in treatments, but sitting alongside that, it would have to be that a recognition of the importance that MS nurses have played and continue to play. I know I referenced Moira Fflett in my own speech, but there is a fragility to this and I think what the MS community would wish to see is a reassurance about the succession planning so that future MS nurses, a pipeline of those nurses, is on the way in order to fill the gaps that inevitably will appear in the years ahead. I absolutely agree and I am keen to work with MS charities and with people with a special interest in this, with the folk in the neurology task force—I am sorry, I forgot the name of that particular group—with the neurology team in the Scottish Government to make sure that there is a resilience. We have seen in certain geographical areas in Scotland just recently that there is an issue with those particularly specialised roles being dependent on maybe just one individual. When that one individual is not available, it can really devastate the service that is being delivered, so I am desperately keen to make sure that we have resilient and sustainable services right throughout Scotland. As I say, I am not unaware of the issues in the far north, where we have the highest incidents but also have a sparse population and challenging times delivering public services, so I am keen to work closely with everyone who has an interest in making sure that we provide a sustainable service going forward. Despite the disruption to health and social care services during the pandemic, we have sustained our efforts to deliver the commitments of our neurological care and support framework. That framework is designed to ensure that everyone with a neurological condition, including MS, can access the care and support they need to live well in their own terms. Despite the pressure on Scottish Government priorities, the focus on funding for the frameworks being maintained this year, we are continuing to implement that as a priority with £1 million commission for work to improve neurological care across Scotland. Over the past 18 months, we have invested more than £300,000 in projects to specifically improve the health and wellbeing of people with MS in Scotland. So, to pick up on my colleague Mr Cameron's point, while the NHS recovery plan is not condition specific, the aim is to affect whole system recovery and to support prioritisation and planning. In that respect, we would expect this to directly affect neurological services and the experiences and outcomes for people with neurological conditions such as MS. I am delighted that, through the neurological framework, we have been able to fund three new projects to deliver mental, physical and social support to people affected by MS and test models of preventative, rehabilitative and palliative care. That includes the MS Society's wellbeing hub, which has helped over 750 people with vital one-to-one support such as counselling and physiotherapy, as well as providing group and social activities. With regard to MS nursing, we do understand the invaluable care and support that is delivered by Scotland's MS nurses. I want to recognise and commend their commitment to maintaining high levels of patient support during the pandemic. The Scottish MS register's 2021 report noted that, despite the challenges that were presented by Covid, 87 per cent of newly diagnosed people received contact with an MS specialist nurse within 10 working days of diagnosis and more than 99 per cent of people were contacted within 10 working days of an MS nurse receiving the referral. That is really astounding to be able to maintain that level of service when we are facing so many challenges on so many fronts. Colleagues have spoken today about the additional financial challenges that are facing people with disabilities as they experience the impacts of them rising cost of living. The Scottish Government has taken a range of actions to help people facing the combined pressures of higher energy bills, the increased cost of their weekly shop as well as the UK Government's national insurance hike and interest rate rises. I can assure you that we are doing all that we can within our powers to help those who are worst affected, including those people with serious health conditions. For example, we are stepping up our investment to accelerate deployment of heat and energy efficiency measures and to support those who are least able to pay allocating at least £1.8 billion over the course of this Parliament. We have recently allocated a further £10 million to our fuel and security fund. Another example of action that we are taking to help with financial pressures is making social security support for people with MS more straightforward to access. We have replaced the adversarial approach of the DWP by removing assessments and degrading examinations. Through the introduction of the adult disability payment, we are providing new, simplified and compassionate systems that will treat people with dignity and respect. I thank the minister for taking this intervention. Can I ask the minister what his view is on the 20 metre rule? We are undertaking an independent review on that and applying it. As it currently operates, we are applying different adult disability criteria to ensure that the 20 metre rule is applied fairly. The changes will mean that Social Security Scotland will make more accurate and consistent decisions on mobility, resulting in a more dignified experience for folk with MS. However, we are undertaking an independent review on that and more than happy to keep the member informed on progress on that front. Continuing research, as many have said, is absolutely critical to better understanding and improvement treatment of MS. I want to pay tribute to the medical research community working in this area. The outcomes of the new research on trial can be ground-breaking. I am delighted that we have awarded around £1.9 million to the Scottish Government's chief scientist office to support a major four-year research project led by NHS Lothian and the University of Edinburgh. The aim is to develop a new approach to guide the treatment of MS and to help people to have better control of their condition. In addition, we have awarded £360,000 in recent years to fund five PhD research studentships and MS at Scottish universities, which is part of a programme to increase research on neurodegenerative conditions. I want to close this debate by thanking those who have shared their stories, their experiences and their contributions today. I also want to recognise the dedication of those who are impacted by MS, the professionals involved in their care and the MS research committee, who are all working with us to make a difference. Of course, I want to commend the tireless commitment of Scotland's MS charities in improving the quality of life of those who support it. The on-going progress around MS further speaks to the value of cross-party working. I very much look forward to attending the joint MS and epilepsy cross-party group meeting next in June to explore further the next steps that we can take together. Looking to the future, I can absolutely assure the chamber that, as a Government, we will continue to work with partners right across health, social care, welfare and housing to enact transformational change and to improve the quality of life and outcomes for people with neurological conditions, such as MS.