The final item of business is a members’ business debate on motion S6M-03062, in the name of David Torrance, on MS awareness week 2022. The debate will be concluded without any question being put. I ask members who wish to speak in the debate to press their request-to-speak button now.
Motion debated,
That the Parliament welcomes MS Awareness Week, taking place from 25 April to 1 May 2022; understands that Scotland has one of the highest rates per head of population of multiple sclerosis (MS) in the world, with more than 15,000 people living with the condition; notes that MS can cause a range of often fluctuating physical and mental symptoms, which impact the way people move and feel; understands that MS affects everyone with the condition differently; welcomes the work of charities, such as the MS Society and the MS Trust, in raising awareness of MS; believes that their work to fund research is of critical importance to stop MS; understands that there are now 17 treatments available for MS in NHS Scotland, when, 20 years ago, there were none, and notes the calls on MSPs across the Parliament to help raise awareness to stop MS.
17:13
I thank my colleagues for giving their support to the motion and for speaking in the debate. I recognise the contribution of my colleague George Adam in hosting this debate over many years. I can guarantee that there will be no mention of Paisley in my speech tonight. [Laughter.]
This year, MS awareness week runs from 25 April to 1 May, providing an opportunity to shine a light on an often invisible and misunderstood condition that affects more than 900 people in Fife and 15,000 across Scotland. Multiple sclerosis 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 the condition in the same way. In reality, symptoms experienced by an individual can fluctuate from day to day. The fact is that effects are very often different for everyone who has the condition. Some people experience mild symptoms that do not require treatment while others will have trouble getting around and doing simple daily 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 might have to adapt to a new lifestyle, which brings us to the theme of this year’s awareness week: uncertainty.
Uncertainty is one of the hardest parts of any progressive and unpredictable disease. Even though the symptoms might be manageable, not knowing what the future holds makes it impossible to plan work and social activities. Everyone who is affected by the 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 a diagnosis can make people feel many different emotions, often putting great strain on their relationships with friends, family and loved ones. Some studies have shown that the rate of divorce is high in families where one partner is suffering from MS, with a change in dynamics from partner or lover to carer often taking its toll on relationships. The unpredictability of when MS symptoms will strike can lead to a strain on any relationship because of developing dependency on a healthy partner.
A chronic illness such as MS can also have a profound effect on education and employment. Missed deadlines, absences, disruptions and failure to complete studies can result in students having to manage their expectations of what they are able to achieve and setting their bars lower to accommodate their illness and associated limitations. For those in employment there are often some barriers that no level of support can negate.
In Fife, those barriers have been recognised and addressed by the Fife branch of the Multiple Sclerosis Society. It has set up a scholarship with Fife College to support people with MS while they study or retrain. One important aspect of the scholarship that sets it apart from many avenues of financial support is that it can be used for anything that helps people with MS to cope with living with the uncertainty of the 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.
Such progressive initiatives are vital and are just one reason why support groups are so important, because MS, its severity, and the course of the disease varies considerably from person to person. The value of talking to and connecting with people who truly understand and are facing similar experiences and challenges is priceless. The emotional and social support offered through such groups can be a life saver. For many people, it might be their only means of socialising. For others, it could provide an opportunity to discuss with their peers subjects that they simply would not discuss with anyone else, even a general practitioner. For example, sexual dysfunction can be common in people with MS but many lack the confidence to broach the subject with healthcare providers, preferring instead to discuss the subject with peers who they trust and feel more comfortable with. I do not believe that that is a reflection on our health or social care professions but rather a recognition that different conditions and environments help people to open up and express their concerns.
It is not just medical or social uncertainty that makes life with MS difficult. Financial uncertainties almost go hand in hand with the condition. The replacement of the personal independence payment in Scotland with the adult disability payment has been welcomed by many people I have spoken with, with particular praise given to a commitment by the Scottish Government to treating people with dignity, fairness and respect while ensuring a very different delivery of disability benefit.
Many important and significant lessons have been learned from the PIP model, which caused anxiety and untold stress in many claimants for many years. Only a few days ago, I listened in horror as a lady who is living with MS told me of her experience of those assessments. She described the process as cruel, tiring and ineffective, particularly for anyone with a neurological condition such as MS. She recalled the final assessment that she attended, where she witnessed a gentleman leaving the centre in a highly emotional state, then simply sitting in his car sobbing.
I welcome the Scottish Government’s approach that will see the scrapping of a functional assessment, the removal of routine face-to-face assessments, recognition given to people’s individual needs and understanding that fluctuating conditions must be taken into account, and a choice of how to apply offered. For people with MS, navigating the mentally draining transition from who you were to who you now are is traumatic enough without the additional ordeal of an uncaring benefit system. For many it will be their first time on benefits, because they have been forced out of employment by a body that can no longer do the things it used to do.
I sit on the Scottish Parliament’s Citizen Participation and Public Petitions Committee, and I am pleased to have contributed to on-going work on the petition lodged by Keith Park on behalf of the MS Society. It calls on the Parliament to urge the Scottish Government to remove the 20m rule from the proposed adult disability payment eligibility criteria, or to identify an alternative form of support for people with mobility needs. The petition notes that, under the rule, people who can walk one step over 20m do not qualify for the right level of mobility support, which leads to people with MS losing their independence and leaves some feeling trapped in their homes. The committee has considered numerous submissions and engaged with a number of organisations, including MS Scotland and the Scottish Government. It is clearly an issue that is felt deeply by many people living with MS and other neurological conditions.
I welcome the Scottish Government’s commitment to facilitating an independent review of adult disability payment in 2023, one year after delivery has begun, which it believes will enable all the eligible criteria to be considered.
In conclusion, as one very astute lady recently told me, if we see a person with MS, they are having a good day, because when they are having a bad day we just will not see them at all. I extend many thanks to everyone who has joined us in the gallery today. Collectively, we all have a duty to better understand the negative effects of fatigue, cognitive impairment, emotional burden and decreased physical function on the personal and professional lives of people living with MS and the responsibility to help with those burdens in whatever way we can, not just during awareness week but all year round. [Applause.]
Thank you, Mr Torrance. I gently remind members of the public who are joining us in the gallery—and it is great to see you all there—that we are not allowed to clap from the gallery. Thank you.
17:21
I congratulate David Torrance MSP on securing this important members’ business debate and I pay tribute to the MS Society Scotland for everything that it does in supporting those with MS and its work to raise awareness.
MS is unpredictable and different for everyone, which is why the theme of this year’s MS awareness week is uncertainty. MS is a chronic condition that affects the brain and spinal cord. With MS, the coating that protects the nerves, myelin, is damaged, which causes a range of symptoms and problems with how a person moves, thinks and feels. In MS, the immune system, which normally helps to fight off infections, mistakes myelin for a foreign body and attacks it. That damages the myelin and snips off the nerve fibres, either slightly or completely, leaving scars known as lesions or plaques, which leads to damage and disrupts messages that travel along nerve fibres, causing them to slow down, become distorted or not get through at all.
As well as losing myelin, sometimes there can be damage to the actual nerve fibres too. It is this nerve damage that causes the increase in disability that occurs over time. One of my constituents recently described MS to me as this:
“If you imagine your brain is a big mass of intricate wires that operate the whole body, MS causes the protective sheath around each wire to deteriorate so 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 affected. However, the central nervous system links everything the body does, so multiple sclerosis can cause many different types of symptoms. The specific symptoms that appear depend on which part of the central nervous system has been affected and the job of the damaged nerve. Some of the most common symptoms of multiple sclerosis include eye problems, numbness, a tingling feeling sometimes described to be a bit like pins and needles, fatigue and pain.
MS symptoms can also come and go and change over time. They can be mild or more severe. The symptoms of MS are caused by the immune system attacking the nerves in the brain or spinal cord by mistake and those nerves control a lot of different parts of the body. That is why MS symptoms can affect many parts of the body and why everyone’s MS is different.
Scotland has 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, one in 300 people in Scotland are living with a 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 in MS. For example, the Scottish Government has made it compulsory that anyone diagnosed with MS is contacted by a specialist nurse within 10 days.
There is also the rate of people being diagnosed with MS and 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 the more that 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 the 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 the debate, and I welcome the opportunity to help raise awareness.
17:26
I begin by expressing my thanks to David Torrance for securing time for this important debate. I also pay tribute to the MS Society Scotland for the support that it has provided for the debate, and for the work that it does as secretariat to the Scottish Parliament cross-party group on MS and in supporting people living with MS, of whom I know that there are many in the gallery tonight. David Torrance and I have the honour of being co-conveners of that CPG and I am pleased that it has begun the current session of Parliament with such energy and enthusiasm. I also cannot let this moment go by without mentioning the incredible shift that George Adam put in on behalf of the CPG over the years.
I spoke in the same debate in 2017, and much has changed in the past five years, with a variety of new treatments having been approved by the Scottish Medicines Consortium for active relapsing remitting MS and primary progressive MS. Last year, Scotland was the first country in the UK to approve the use of Zeposia, a drug that allows recipients to take it at home, thereby avoiding clinical appointments, which would have been particularly beneficial during the pandemic.
All those developments in the way in which MS is treated and managed have come about in recent years only because of the continued and sustained focus on MS at many levels. We try our best in Parliament to keep the pressure on, but the work of third sector organisations, health professionals across the national health service and, of course, the actions of the wider public deserve to be commended. It is a far cry from just over 20 years ago, before the Scottish 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 was still relatively unknown. As ever, I pay tribute to him, his example and his courage. Fortunately, he has received impeccable care. New treatments have helped him and countless others to cope with MS and allowed them to live full and happy lives.
Indeed, it is welcome that, in 2022, 17 disease-modifying therapies are available to people living with MS. They 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 about what lies ahead, when it might flare up, how much worse it might become, and how best to care for someone with MS in those circumstances.
That uncertainty was, of course, amplified during the pandemic, particularly because of the vulnerability of those living 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 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, can 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 2021-2026”. I hope that the minister will be able to touch on that point in her closing remarks.
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 the treatment options for people living with MS has been remarkable and everyone in the MS community who has campaigned for it and made it happen should be congratulated, but much more needs to be done to improve access to specialist care and support and to remove some of the uncertainties that presently exist.
17:30
I, too, thank David Torrance for securing this debate. I also thank the cross-party group in the Scottish Parliament on MS, many of whom are in the gallery, and we have the group’s co-conveners here with us this evening. I want particularly to pay tribute to the person who has done most to raise awareness in the Parliament, and I do not mean my esteemed colleague George Adam; I mean, of course, George’s wife, Stacey, who is also in the gallery this evening. I want to thank her just for being oor Stacey.
This is not the first MS debate in which I have spoken in the Parliament. In fact, I think that I might have spoken in every one, and they have been a feature since I was elected in 2011. George Adam started the tradition of holding the debate, and it is important that David Torrance is now continuing it. I am always struck by the personal stories of my colleagues on these evenings, because they let me know just how many of us are personally touched by this condition. That is no surprise, really, because we know that Scotland has the highest rate of MS in the world, with more than 15,000 people living with the condition.
For that reason, I want to share my story this evening. I am no exception. I want to say a little bit about my big sister, who is my inspiration and has always been my hero. Irene is 10 years older than me and is an MS sufferer. She is a retired GP and still examines on behalf of the Royal College of General Practitioners, which is a vital cog in ensuring that we have primary care doctors in the UK. She resides in England and, although she no longer drives, she has in her possession—as she has had since she was driving—a blue badge. She 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? It is because it gives her independence. It gives her the ability to continue to go about her daily life, to be economically and socially independent and to continue to work and take a full part in society. Quite frankly, it has given her certainty in an uncertain life.
I know that my sister has been lucky, because I have been frustrated at the number of representations that I have made, often unsuccessfully, on behalf of MS sufferers who were rejected for blue badges because of the arbitrary criteria that do not recognise the fluctuating symptoms from relapsing remitting multiple sclerosis. I thank David Torrance for talking about the potential changes to benefits that may be made in Scotland. A blue badge can be a lifeline to an MS sufferer as it allows them to continue to work and to play a full part in society and gives them the confidence that they can go out in the knowledge that, if they have a relapse or they feel unwell, they can get back home safely and easily. That is extremely important.
I want to make a plea for us to work on doing something to improve the understanding of MS among those who decide what support is available to sufferers. That is why I again thank David Torrance and the MS charities that have supported today’s debate for their work in raising awareness and trying to ensure that everybody understands what a difficult 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.
17:34
I start by saying a huge thank you to the MS Society for organising the debate—I see members of the society here this evening—and for all that they and other organisations do to advocate for people living with MS. Of course, I also thank my colleague David Torrance for securing tonight’s debate.
Throughout the pandemic and in the face of the rising cost of living, service closures and systemic poverty and inequality faced by their members, the MS 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 a backdrop of uncertainty, which is the theme of this year’s MS week. They were uncertain of their own funding, meaning extra pressure on staff and an inability to properly plan for the long term, uncertain of what was coming and 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 equally to everyone else. We need practical assistance as well as information, space and time. Without those things and certainty about 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 its survey entitled “My MS My Needs”, 67 per cent of those responding said that they were scared and uncertain about the future.
There are too many elements of disabled people’s lives and of their 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 and using even the transport that is accessible needs more planning than is the case for non-disabled people. If someone wants to get on a train, they have to call for assistance; if they want to get on a bus, they need to hope that there is not another wheelchair user already on board; and if they want to ride on the Glasgow subway—well, tough. Last year, NASA announced that it is looking to put disabled people on the moon, yet, in Glasgow, many disabled people cannot get from one side of the city to another.
On average, people with MS have additional living costs of between £600 and £1,000 a month. 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 they need. The Government should move quickly to address the adequacy of and eligibility for disability benefits in Scotland and to assess the additional costs of being a disabled person, and it should then uprate the disability benefits to match that. It 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 20m rule. Despite asking multiple times in committee, in the chamber and in letters to the cabinet secretary for a commitment to do that, we are as yet to get that assurance. That causes yet more uncertainty, and I urge the Government to provide certainty on that soon. People should not be worried that they will 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 for them on the bad.
Social security is just one way in which 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 will be carers to give the support that we need. Further, we could provide care free at the point of delivery, making sure that people have the certainty that they need that they will not have to sell their homes or spend their life savings just to afford the care that they cannot live without.
This debate is about uncertainty and, as we have heard, there is far too much of that. I want to finish by saying that, among the uncertainty, one thing is always certain: disabled people, people with MS and their organisations will never give up. They are resilient. However, they should not have to be, because Scotland should just be better for all us. Nevertheless they, and so we, must persist in the fight for equality.
17:38
I join others in congratulating David Torrance for stepping into the Dr Martens shoes of George Adam—and stepping into one of his suits, by the looks of things. Genuinely, I thank David Torrance for making this debate possible, and I thank the MS Society, not just for the support that it has provided with briefings for the debate but for its year-round work in supporting the MS community, which Donald Cameron mentioned.
I have long taken an interest in the issue, not through personal experience but because the constituency that I represent has the highest level of MS not just in Scotland but anywhere in the world. As a result, Orkney is a community that has long been supportive of those with and affected by MS. That was evidenced in recent months by the Orkney District Association of Young Farmers Clubs, whose bale art competition had a focus on MS this year, and the remarkable tractor run that was organised by Graham Nicholson and Steven 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 Flett, who was mentioned in previous debates that focused on the work that MS nurses do. I think that, generally speaking, although there is a great deal more to do, we feel broadly fortunate in Orkney in terms of the support that is available.
One of the previous MS debates that I took part in focused on research, which is mentioned in David Torrance’s motion today. Although I think that Donald Cameron was right to talk about the progress that has been made in recent years in the approval of treatments, there is a long way still to go. However, I think that 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 such as Professor Jim Wilson at the University of Edinburgh, who is an Orcadian. I think that that gives us hope for the future.
David Torrance is right to draw on the individual nature of this condition—it not only differs between individuals but on a day-to-day basis for each individual. The theme of “My MS My Life” was reflected in previous debates, and I remember attending a reception that coincided with an earlier debate and talking to my constituent Alan Jamieson who talked about the importance of providing opportunities for those affected by MS to gather, to share experience and to feel companionship. I think that, as a result of the pandemic, that has been far more difficult, and the risk of isolation has been felt acutely by those in the MS community.
I know that, in Orkney, a popular watercolour class that was run previously moved into the online arena. The classes were held via Zoom and the participants have produced cards and a book of watercolours that are accompanied by prose that has been produced by primary 6 and 7 pupils from Hope primary school. That evidences what can be done, and it is such a relief that we are now seeing some of those opportunities for activities being re-established and starting up again in practice. They are important and, in that line, I am looking forward to the reappearance of Scottish Ballet at the end of this week as it takes forward workshops in Orkney, hopefully presaging a point at which local dance practitioners, musicians and volunteers can help to provide those sorts of classes, in recognition of the importance of physical movement and mobility to the physical and mental health of those with MS.
On an optimistic note, I see that the briefing from the MS Society quotes one individual saying:
“My attitude is that nobody has got certainty, so just live your life to the fullest because you don’t know what is around the corner.”
I think that that is an important message to convey. It reflects very much the attitude of my constituent Hayley Budge, who has announced that she is just about to embark on a flying scholarship, demonstrating that, as ever, she continues to take life by the horns.
I thank David Torrance again for allowing the Parliament to have this annual debate, and I look forward to further debates in future and more progress in the years to come.
17:43
I, too, thank David Torrance for securing this members’ business debate. The theme of MS awareness week this year is uncertainty, and uncertainty has been with us more than ever in the past few years, with Covid, the war in Ukraine and the cost of living crisis.
As we all know, MS can be very uncertain for everyone living with it. People with the condition have good and bad days, and there is uncertainty over when, if and how symptoms might change, how their condition might progress and whether their treatments will continue to work.
In 2019, the “My MS My Needs” survey revealed that only 40 per cent of people with the condition felt confident that they would be able to overcome the challenges that their MS might bring in the future. In the most recent survey, which was carried out ahead of MS awareness week, 67 per cent of respondents living with MS said they were scared and uncertain about the future.
As has been said, Scotland has one of highest rates of MS anywhere in the world. Over 15,000 people are living with MS in Scotland. Most of them are diagnosed with relapsing-remitting MS, whereby their symptoms suddenly get worse due to relapses and then gradually improve. However, over time, many people who are diagnosed with relapsing-remitting MS will develop secondary progressive MS. They will stop getting relapses but their disability will steadily get worse.
Just 20 years ago, there were no treatments available to halt the progression of MS—as, I think, Donald Cameron mentioned. However, thanks to the work of researchers and the MS community mobilising to fund them, there are now 17 disease-modifying therapies approved in Scotland to treat MS. These treatments can help to minimise the severity and frequency of MS relapses, thus slowing the progression of the disease.
The uncertainty can be exacerbated by a social security system that does not guarantee adequate support, stretched health services and a rising cost of living that will have a greater impact on disabled people than on others. Across Scotland, local MS groups work tirelessly for their community. Where they are supported and properly resourced, expert specialist MS nurses and neurologists make an incredible difference to the lives of people who are living with MS. Leuchie House, in my constituency, offers respite to MS sufferers and those with other long-term conditions, and it was previously an MS Society-run facility. Leuchie House is now an 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 their immune systems being weakened by their treatment, but services that they relied on were closed. In response to that, at the height of the lockdown in 2020, the MS Society co-designed a wellbeing hub to address the community’s needs and to fill service gaps, particularly in community-led services. The hub, which was funded by the Scottish Government’s neurological framework fund, is person centred and works in partnership with MS professionals. It delivers online services—something that has been mentioned—to enable support to be provided to a much wider audience, including those with poor mobility or other commitments. The hub builds incrementally on innovation, adapting and improving as it gathers information from the participants, and, to date, over 1,100 live-streamed sessions have been delivered to about 750 participants
Before the pandemic, the MS Society estimated that the average person living with MS faces additional costs of between £600 and £1,000 per month, depending on the severity of their condition. This lunch time, at the good food nation event that some of us attended, I spoke to somebody who raised that point. They do not have MS, but they have a disability and, of course, that issue is really concerning for them. I hope that the minister will pick up on that point and the point that Pam Duncan-Glancy made.
The constant uncertainty for those living with MS means that they are never certain whether their condition will progress and further stretch already limited resources. In a survey that was carried out by the MS Society, only 20 per cent of people living with MS said that the Government paid for all their care needs to be met. They said that it funded, on average, about 75 per cent of their non-medical costs, including the costs of self-management activities and therapies. Those figures are taken from surveys that were carried out before the pandemic and before the rise in the cost of living. We can therefore surmise that the scale of the issues outlined will only have grown.
As parliamentarians, we must ensure that the financial support that can be accessed matches the significant rises in the cost of living and that those living with MS receive the financial support that they need.
17:47
I, too, thank David Torrance for securing the debate.
Multiple sclerosis is a lifelong disease that is estimated to affect 2.8 million people across the globe and more than 15,000 people in Scotland. The experience of living with MS is not always limited to having MS, as additional complications can come with the disease. They can be wide ranging and include bladder and bowel issues, paralysis and alterations to people’s mental state, including symptoms such as forgetfulness, depression and even epilepsy.
The theme of this year’s MS awareness week is uncertainty. I asked a very dear friend of mine if she would mind writing something about her experience of MS. She is a wonderful woman who will support anyone who needs it and never complains about how she is feeling. This is absolutely reflected in her thoughts, which I am pleased to be able to share in her words today. She says:
“Indeed, 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. Its 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’s quite a devastating blow because there are no doctors or neurologists who can give you a roadmap of what you will experience. Every single person will experience something different and quite often have different symptoms at the onset. It’s 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’s
1. the uncertainty of how long it will last
2. as each week goes by, you know that there is less chance of regaining all the functionality that you had before the episode
3. In the earlier episodes, I was able to see an improvement after a few weeks & 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 & 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 & the next, I am in so much pain that I am unable to do anything. My sister had MS & she ended up in a wheelchair very quickly, so that’s another reason to feel lucky.”
I put on record again my thanks to my friend for giving me her comments.
Just two decades ago, there were no treatments available for those who had MS. However, thanks to all those involved in the MS community, the NHS, charities and dedicated researchers, 17 disease-modifying therapies have now been approved in Scotland to treat MS at various stages. Those range from treatments that address the severity and frequency of MS relapses in those who are living with relapsing-remitting MS to—more recently—treatments that have now been green-lit to address secondary progressive MS, which we have heard about tonight.
Even before the pandemic, the MS Society estimated that those living with MS faced costs of an additional £600 to £1,000 per month to access essential goods and services. For example, additional electricity is required to power assistive technologies and higher heating bills result from the need to stay warm. Those who are living with an underlying and persistent health condition such as MS face living costs amounting to, on average, the equivalent of half their income.
I thank the MS Society Scotland for its incredible work in supporting those who live with MS, for its work to fund research and for representing the MS community across the political sphere and wider society. As parliamentarians, we must tackle these very prevalent challenges, especially the cost of living crisis and the impact of the Covid pandemic, and ensure that MS sufferers are provided with the support they need to have the best quality of life.
17:52
I thank David Torrance for bringing this important debate to the chamber today, and I thank the MS charities for the work that they do.
Uncertainty is the theme for this year’s MS awareness week. Uncertainty often brings with it a sense of powerlessness, and that is what I would like us 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 why that is the case. For example, why do some families have multiple members with MS? Why do places like New Zealand and Canada have high rates of MS, too? They are both countries with descendants of Orcadians and Shetlanders who emigrated there decades ago. As my MSP colleague Liam McArthur has pointed out, Orkney has the highest incidence of MS anywhere in the world. Professor Jim Wilson, who is 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 a great prevalence and into finding new treatments and therapies, but we all look forward to the day when we can say we have found a way to stop MS. I note the 17 treatments that are available for MS in NHS Scotland, which are referenced in the motion. In 2019, a procedure that reboots an MS patient’s system, halting the progress of MS, was hailed as a huge step forward and recommended for use on the NHS in Scotland. Some people have received this treatment abroad, and those who have undergone the treatment have said that it has halted the progress of MS and restored some of what MS has affected.
Treatment abroad, however, means costs. As the MS Society briefing states, those living with MS already spend between £600 and £1,000 per month on additional costs. That could be for energy bills, goods, services or trying to stay warm. MS is unpredictable and there is much uncertainty as to how someone living with MS may feel at any given time. Perhaps it is feeling too warm at the height of winter, when other family members need the heating on, and only an electric fan can relieve the MS symptoms. It may be for only 10 minutes, but that racks up the electricity costs. Having a shower can require more towels, and using more towels creates more washing, which uses 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, such as the emotional pressure, the additional asks of partners and the impact on family life. Getting help from the Government, such as through PIP, often requires a walking test, and these tests do not measure the long-term, changeable, fluctuating nature of MS. Walking any distance can feel much easier one day than the next. Furthermore, appeals and bureaucracy contribute to the uncertainty and sense of powerlessness. The effort to overturn something you know to be unjust can be exhausting. A system has developed whereby people are forced through hoops of admin to survive; so, with the uncertainty of MS comes a sense of powerlessness.
We must address both of those issues and ensure that those living with MS and those around them feel supported to ride the waves of uncertainty, feel empowered to speak out and have confidence that they will be heard.
17:55
I am very pleased to be able to respond on behalf of the Government this afternoon as we mark MS awareness week. I thank David Torrance for his 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 assure members that I am committed to ensuring that all people living in Scotland with MS are able to access the very best possible care and support.
Late last year, I met the MS Society to discuss the findings of its “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 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. Today I want to pay tribute to their committed efforts to find more and better treatments for this devastating condition and to support those who are affected by it.
The minister is right to point to the developments that there have been in treatments, but sitting alongside that has to be a recognition of the importance that MS nurses have played and continue to play. I know that I referenced Moira Flett in my own speech, but there is a fragility to the position and I think that the MS community would wish to see a reassurance about succession planning and to know that there is a pipeline of MS nurses to fill the gaps that will inevitably appear in the years ahead.
I absolutely agree and I am keen to work with MS charities and people with a special interest in this and with the neurology team in the Scottish Government to ensure that there is resilience. We have seen in certain geographical areas in Scotland recently that there is an issue with these particular and specialised roles being dependent on maybe just one individual. When that one individual is not available, it can devastate the service that is being delivered. I am desperately keen to make sure that we have resilient and sustainable services throughout Scotland. I am not unaware of the issues in the far north, where we have the highest incidence but also a sparse population and challenging times delivering public services. 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 that they need to live well on their own terms. Despite the pressure on Scottish Government priorities, the focus and funding for the framework has been maintained. This year, we are continuing to implement this as a priority, with £1 million commissioned for work to improve neurological care across Scotland.
Over the past 18 months we have invested more than £300,000 in projects specifically to improve the health and wellbeing of people with MS in Scotland. To pick up on the point of my colleague Mr Cameron, although the NHS recovery plan is not condition specific, the aim is to effect whole-system recovery and support prioritisation and planning. In that respect, we would expect it 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 who are affected by MS, and test models of preventative, rehabilitative and palliative care. That includes the MS Society’s wellbeing hub, which has helped more than 750 people with vital one-to-one support such as counselling and physiotherapy, as well as providing group and social activities.
We understand the invaluable care and support that is delivered by Scotland’s MS nurses. I recognise and commend their commitment to maintaining high levels of patient support during the pandemic. The Scottish MS register’s 2020-21 report noted that, despite the challenges 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. It is 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 facing people with disabilities as they experience the impacts of the rising cost of living. The Scottish Government is taking a range of actions to help people facing the combined pressures of higher energy bills, the increased cost of their weekly shop, 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 this session of Parliament. We have recently allocated a further £10 million to our fuel and security fund.
Another example of the 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 Department for Work and Pensions 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.
What is the minister’s view on the 20m rule?
We are undertaking an independent review of that. As it currently operates, we are applying different eligibility criteria to ensure that the 20m 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. We are undertaking an independent review of that and are more than happy to keep the member informed of progress on that front.
As many have said, continuing research is critical to better understanding and improving the treatment of MS and I pay tribute to the medical research community working in this area. The outcomes of new research and trials can be groundbreaking. I am delighted that we have awarded around £1.9 million through 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 help people have better control of their condition. In addition, we have awarded £360,000 in recent years to fund five PhD research studentships on MS at Scottish universities as part of a programme to increase research on neurodegenerative conditions.
I want to close this debate by thanking those who have shared their stories, experiences and contributions today. I also want to recognise the dedication of those impacted by MS, the professionals involved in their care and the MS research community, 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 they support.
The on-going progress on MS further speaks to the value of cross party working, and I very much look forward to attending the joint MS and epilepsy cross-party group meeting in June to explore further the next steps that we can take together.
Looking to the future, I can assure the chamber that, as a Government, we will continue to work with partners across health, social care, welfare and housing to enact transformational change and improve the quality of life and outcomes for people with neurological conditions such as MS.
That concludes the debate. I close this meeting.
Meeting closed at 18:05.Air ais
Decision Time