Meeting date: Wednesday, April 24, 2019
Meeting of the Parliament 24 April 2019
Agenda: Brexit and Scotland’s Future, Portfolio Question Time, General Practitioner Recruitment and Retention, Green New Deal, Business Motions, Point of Order, Decision Time, Multiple Sclerosis Awareness Week
- Brexit and Scotland’s Future
- Portfolio Question Time
- General Practitioner Recruitment and Retention
- Green New Deal
- Business Motions
- Point of Order
- Decision Time
- Multiple Sclerosis Awareness Week
Multiple Sclerosis Awareness Week
The final item of business is a members’ business debate on motion S5M-16088, in the name of George Adam, on multiple sclerosis awareness week, which is 22 to 29 April 2019. The debate will be concluded without any question being put.
That the Parliament welcomes MS Awareness Week taking place from 22 to 29 April 2019; understands that more than 11,000 people in Scotland live with multiple sclerosis, which is a neurological condition that can affect the way people walk, move, see, think and feel; welcomes the MS Society’s commitment to funding research into new treatments and a greater understanding of the causes of MS; understands that the MS Society has invested over £218 million in real terms into research since its inception in 1956, including into the MS Society Edinburgh Centre for MS Research and numerous research projects across Scotland; notes the progress that has been made in research in recent years and the role that Scottish-based scientists have made in this, and celebrates the work being carried out by researchers and charities, such as the MS Society, to ultimately stop MS.18:15
I thank all members who signed the motion and who have supported the various events that the Multiple Sclerosis Society Scotland has held this week in the Parliament. One event—for which the Presiding Officer’s permission has already been given—is for all the members who are speaking in the debate to have a picture taken in the chamber after the debate.
It has almost become a parliamentary tradition to welcome everyone to what has become known as Stacey Adam’s MS awareness week debate. As everybody knows, I am involved with the MS Society Scotland because my wife battles with the condition every day of her life. I say that she “battles” and not “suffers” with MS, because those with MS do not class themselves as sufferers; they tend to battle on. People in the MS community, as a rule, tend to be very positive about how they go about things. The fact that they tend not to moan can make a difficulty for the MS community because, as we politicians know, those who shout the loudest and moan the most tend to get the most. However, what is important is that people in the MS community are proactive and get on with their lives, because they know that life is far too short.
When I first met Stacey, she said that she was going to live every day as if it were her last. Some might think that that is a negative attitude, but it is not, because she drives herself forward every day and MS has never stopped her doing anything. Those in Parliament who have worked with her over the years have seen that nothing will stop her.
Ironically, many people do not see the scooter, wheelchair or mobility aids that Stacey uses; they see Stacey and her personality. She is a force of nature; when she wants something, she makes sure that she gets it—after 22 years of marriage, that can get quite challenging at times. It is not just Stacey, though—people who live with MS, and their families, think that way. There are many of them, because multiple sclerosis affects more than 11,000 people in Scotland and more than 100,000 in the United Kingdom.
Symptoms usually start in a person’s 20s or 30s, which are the key working years, and that is sometimes when they get a diagnosis. Stacey was diagnosed at 16, but that might be more to do with her health professional mother, who decided that she was going to find out immediately what the issue was and what her daughter had to deal with.
Three times as many women as men have MS. In people who have MS, the coating—or myelin—around their nerve fibres is damaged. Nobody with MS has exactly the same symptoms, which causes difficulty when people try to deal with the condition.
At present, there are 13 disease-modifying therapies in Scotland that are licensed through the national health service. Other treatments are coming through, but there is an on-going issue with profiteering by some pharmaceutical companies. At the event that we held last night, I spoke to a number of neurology consultants who gave me examples of a drug that, when used for other conditions or diseases cost, say, £1,000 per treatment. One neurologist asked me how much I thought the same drug cost when made and used for MS. I said that it would be around £5,000 or something, but he said that it was £50,000. Many pharmaceutical companies profit from people’s conditions; licensed products should not cost the amount that they cost.
If people are looking at the issue and talking to pharmaceutical companies, they should question them on it, because the practice must stop. People should not be fooled by the argument of some pharmaceutical companies that they research the drugs and that they must pass on the cost of that. In many cases, that is simply not the case. Such drugs were developed many years ago and are now used for another reason. The problem is that the companies pitch the price far too high for things that could make a difference to the lives of many people dealing with MS.
However, one of the good things that we heard last night was when Professor Chandran from the University of Edinburgh said that Scotland has a strong record on research, on which we must build. He also commended the Scottish Government for its investment in various research programmes and tried to encourage the MS Society to invest in one particular programme, on the basis that the Scottish Government is already investing in it. The MS Society currently funds 10 research projects in Scotland, with an investment of more than £350 million.
There is an on-going debate within the MS community about the role that vitamin D might play in MS. At the University of Edinburgh, Dr Anne Astier’s project aims to find out how immune cells move from the brain into the spinal cord, where they can cause damage, and whether vitamin D is involved in that process. That might explain why, per head of population, we have more people with multiple sclerosis than anywhere else. Dr Astier said that
“MS is a very complicated condition, with a number of factors determining whether you might get the condition.”
She added that
“It is thought that one of those factors is vitamin D, which might play a role in why prevalence in Scotland is so high.”
We must continue with that work because, although many disease-modifying treatments are available, we must take the research to a stage at which we know exactly how to tackle the disease.
Yesterday, Professor Chandran said that he wants to get to a stage with MS that is similar to when someone is diagnosed with cancer, so that doctors can say, “This is the type that you have got, this is how we will treat it and this is how it will affect you.” In the past, people with MS have never had a plan for how they can cope with their disease. The MS Society has decided to embark on a campaign, which it will launch later in the year, to raise £100 million to ensure that we can fund more of that type of research, so that people and families who are dealing with multiple sclerosis have the opportunity to hope for a better future.
We can find a cure for the condition and we can ensure that those who are living with it have better opportunities in life. Members have all met Stacey; they know what she is like. I often wonder what, in a world without MS, that incredible force of nature would have achieved. Paisley and I are lucky, because I have a partner who supports me, works with me in the Parliament and represents my constituents and me. In Paisley, we have two MSPs for the price of one.
Let us think about that world with no MS; together, we can rid the world of multiple sclerosis.18:23
I congratulate George Adam on securing this debate on MS awareness week, which runs from 22 to 28 April.
I commend the MS Society for its organisation of this important awareness-raising event, for its excellent service, year in and year out, to all those who have MS and for the help that it provides to their families.
When carrying out some research prior to this evening’s debate, I was struck by the statistics on the number of people in Scotland who are affected with MS—there are more than 11,000. As we are all too well aware, the incidence of MS in Scotland remains sadly the highest in the world per head of population. That is why research is all the more important, and it is encouraging to note the progress that is being made in that regard in Scotland and other countries.
The MS Society is to be congratulated on its unswerving commitment to funding research, with considerable sums having been invested since the inception of the society in 1956. Importantly, the research focuses on the causes of MS as well as on treatments and the care of people living with MS.
The approach of the MS Society to commissioning research is worth noting. It has come up with a top-10 list of MS research questions, which were formulated by working with people with MS, their families and healthcare professionals. The list includes: consideration of which treatments are effective at slowing, stopping or reversing the accumulation of disability associated with MS; consideration of how MS can be prevented; consideration of which treatments are effective for fatigue in people with MS; consideration of how people with MS can best be supported to self-manage their condition; and consideration of whether vitamin D supplementation is an effective disease-modifying therapy. I do not have time to mention all the questions on the list, but it can be found on the MS Society’s website.
Researchers at any UK university or hospital can apply for support through the MS Society open grant round, but research can also be commissioned by the MS Society into priority areas that it does not think are being adequately addressed. It is reassuring to note that every proposal is rigorously reviewed by both scientific experts and people living with MS, so that only the very best research is funded.
That inclusive and rigorous approach to research has attracted a lot of praise from people with MS, including, in a case study published by the MS Society, Ruth White who is from Lochgelly in my constituency. I understand that Ruth was diagnosed with remitting MS in 2004 and has gone on to have the secondary, progressive form of the condition. Ruth was quoted as saying:
“My gran also had MS and the progress in treatments since she was living with the condition to now is startling. It gives me a lot of hope.”
She went on to say:
“I’d love to think there will be a cure in my lifetime and I certainly think we will be a fair way down the road in the coming years.”
I wish Ruth, and all those who have MS, all the very best.
For many, of course, MS is a devastating condition and, if my experience is replicated across Scotland, there will be few families who do not have in their lives a relative, friend, work colleague, fellow student or community resident who has MS. We still await the day when we make the crucial breakthrough but, as has been said, the research takes us further down that road. We will continue to support investment in research into MS to ensure that, one day, those 11,000-plus people in Scotland, others right across the world and those still to be diagnosed with MS can see hope for a better future.18:28
I give a huge thank you to George Adam and his wife Stacey for all their efforts in securing this debate, and to the charities that sent briefings. Multiple sclerosis can be a hugely debilitating disease, and with more than 11,000 people in Scotland living with the condition, as we have heard, today’s debate is vitally important.
MS awareness week, which takes place this week, provides a perfect opportunity to improve public understanding and to highlight and push for further research into ultimately stopping MS. We owe it to those who are affected to make the most of this opportunity, in the hope of making a huge difference to the lives of people with MS and their families.
MS awareness week is, of course, about raising awareness and understanding of MS, which is a complex condition that is often misunderstood. Affecting the nerves in the brain and spinal cord, MS is a neurological condition. The word “sclerosis”, which means scarring or hardening of tiny patches of tissue, is added to “multiple” because of its occurrence at more than one place in the brain and/or on the spinal cord.
Common symptoms at the time of diagnosis are fatigue, stumbling more than before, unusual feelings in the skin, slowed thinking or problems with eyesight. MS charities are keen to dispel the myths that surround MS; although it is a lifelong condition, it is not a terminal illness. As we heard from George Adam, most people with the condition are diagnosed in their 20s or 30s and will typically live to the same age as the rest of us. Everyone experiences MS differently, so no two people will have the same range and severity of symptoms. Each individual’s symptoms can come and go, and they vary from day to day. Many people with MS do not experience symptoms that are severe enough to prevent them from working, and the vast majority do not need to use a wheelchair regularly.
As women are three times more likely than men to have MS, charities have been keen to stress that pregnancy has no long-term effect on the course of the condition, and that a woman with MS is no more likely than anyone else to experience miscarriage, stillbirth, birth defects or infant death.
Contrary to what was advised previously, this year the MS Trust has stressed that it is vital for people with the condition to stay active. With the backing of paralympic swimmer Stephanie Millward MBE, who was diagnosed with MS at just 18, the charity is calling for people to get moving regularly, no matter which activity they might do.
At the moment, the cause of MS is unknown, and there is no cure. Although MS is a lifelong condition, treatments can help sufferers to manage their symptoms. Disease-modifying therapies can help to reduce the number of relapses that sufferers have, and their severity. However, such therapies are currently effective only for people with relapsing-remitting MS, which makes research all the more important. For some people with MS, there is no way of getting round the fact that the condition can be hugely debilitating; again, that makes research vital. Charities such as the MS Society have led on such research, and currently fund more than 10 projects in Scotland. I give my thanks to all the charities and donors who make such research possible.
I again welcome MS awareness week, and urge all members to spread the word and raise awareness through social media or by word of mouth. I hope that, by pushing for further research, we can change the lives of many and, ultimately, stop MS for good.18:32
I, too, thank George Adam for securing the debate. I declare an interest in that my brother, a few of my close relatives and many of my constituents have MS, or had it during their lives. I also thank the MS Society for its commitment and the vital work that it does in raising awareness about the condition, raising funds for research and highlighting the impact of MS on many people’s lives.
It is easy to overdramatise the impact of certain conditions in order to make political or emotional points but, having listened to and observed patients with MS, I suspect that it must be one of the most frustrating and exasperating of conditions. For some, it is the variability and suddenness of attacks, after periods of being well, that have such a devastating impact and often lead to periods away from work or even end a career altogether. MS can leave people feeling floored through physical and mental exhaustion, because living with it is a truly exhausting experience.
For those with progressive MS, the downward spiral, the lack of respite and the absence of effective drugs to help or cure it add to their physical frustration. Each time that patients hear of a breakthrough, it never appears to be for progressive MS. That is not to take anything away from the development of treatments for relapsing-remitting MS and the superb research that goes on in this city, which are to be celebrated loudly. However, it is only honest to express other frustrations. George Adam is right to say that people with MS battle on, get on with their lives and do not shout loudly about their conditions. However, I think that they are wrong to do so: they should shout much more loudly about MS. As everyone knows, Scotland has some of the highest incidences of the condition in the world. Despite that, there are just three specialist nurses in the NHS Lothian area, which means one for every 856 patients.
At the reception that we had last night, campaigners from the Borders told me that there is 0.6 of a post to cover their entire area, which has more than 240 patients. The Minister for Public Health, Sport and Wellbeing spoke at the reception, but not a word was said about the lack of MS nurses and not a word was said about the fact that there are only a handful of specialist MS physios in Scotland and that access to their expertise is almost impossible to get.
There was not a word about the only specialist MS social worker in Scotland, who I met at the reception either last year or the year before—a man who previously covered the minister’s constituency in Dundee, but who is no longer in post; there has been no replacement for him, which means that we have no specialist MS social worker in the whole of the country that has one of the greatest incidences of MS in the world. Remarkably, there was not a single word about how MS patients are to access social care, or even be assessed for free personal care following the introduction of Frank’s law.
If we are truly to improve the quality of life for people with MS, we must give them the tools, the support and the assistance so that they can live as independently as possible for as long as possible. There is nothing for them in warm words or warm wine and canapés at a parliamentary reception. They need action and they need hope.
We have this debate every year, and every year we make the same speeches and the same issues come up. I make no apology whatsoever for raising these issues. We all want better treatment for MS patients, but we do not bring about change by pretending that all is well in MS treatment when clearly it is not. I pray every day for a cure, but in the meantime we want the best possible treatment for MS patients in this country, and I am afraid to say that I do not think that they are getting it.18:36
I thank George Adam for bringing this debate to the chamber. He attributed it to Stacey and described her as a driving force. I think that they are a collaborative driving force, given their teamwork, and that is what it is all about.
Neil Findlay is quite right. I sense his frustration and I share elements of it.
I jotted down a few notes the other day, but I am probably not going to refer to them, because I want to talk about last night’s reception. When George Adam introduced it, he talked about the stoicism that is displayed by people with MS. Just before that, I was talking to two lots of researchers—one from Glasgow and one from Edinburgh—and I was asking all the daft laddie questions, because I am not remotely scientific. I did not think that I was going to an MS reception to talk about fish, but we talked quite a lot about fish and the role that they play in our understanding, and it was absolutely fascinating.
I do not have the technical information to hand, although I have it here somewhere. It was fascinating to hear about myelin, examination of the movement of fat within the brain and other issues. I found particularly compelling a gentleman who spoke who suffers—George Adam does not like that word, so I will say instead “a gentleman with MS”. He said that, when he was diagnosed in the 1990s, there was nothing. I spoke to him later and said that I thought that he had spoken particularly well. I think that his name was George—hopefully that is right.
There are now 13 disease-modifying therapies. I found particularly uplifting—indeed, I could have listened to him all night—Professor Chandran from the Edinburgh centre for MS research, who laid out with enthusiasm how impressive Scotland’s work on MS is. It was not about patting himself on the back. It is important, sometimes, to attribute praise where it is due, and he said that it is a perfect combination of the knowledge in the universities, some benefactors and indeed Government money. He also talked about the MS Society directing some money into that work.
As we know, the MS Society has a research strategy, and my colleague Annabelle Ewing touched on the 10 research programmes. I will not go through the list, but the one that jumped out at me is about how people with MS can best be supported to self-manage their condition. Of course, although empowerment is very important, we forget at our peril the carers who provide a lot of support to people.
Members have spoken about fact that there is a disproportionate number of people with MS in Scotland, which is the case in the islands and is particularly profound in Mr McArthur’s constituency. Sadly, the society has a great number of centres across the Highlands and Islands, from Kirkwall to Lochgoilhead and all points in between, some of which I have visited. It is important to thank not just the MS Society for its work but the volunteers at those centres, who play a pivotal role.
It is an unfortunate reality that pharma’s obligation—and that of any multinational corporate or limited company—is to maximise profit for shareholders. We need to take a patient-centred approach. I have spoken several times in these debates about medicines being given free for trials, then suddenly the medicine is not free. We need to address many of those issues and the issues to which my colleague Neil Findlay referred.
I have to say that members should take a look at the MS Society website. Page after page is about research news and there is a lot of positive stuff. One page that particularly appealed to me said:
“Research shows hot chocolate could help reduce fatigue”.
That is a minor thing, but a lot of positive work is going on. I again thank George Adam for bringing this debate to the chamber.18:41
I, too, congratulate George Adam not just on securing this debate but on hosting last night yet another highly successful and well-attended reception. I was delighted that my constituent Alan Jamieson and his sister Karen were there. Alan was diagnosed with relapsing remitting MS in 2016. I thank the MS Society Scotland for its involvement in last night’s reception, the excellent briefing for this debate and the work that it does year round, and I thank it particularly for the funding that it puts into research, which is the theme of this year’s MS awareness week.
Last night, we were fortunate to hear a fascinating talk by Professor Chandran of the University of Edinburgh, as John Finnie reminded us. He talked about the exciting, world-leading developments in research into MS that are taking place in Scotland. Professor Chandran quite rightly challenged us, the Government and the MS Society Scotland to go further in pursuit of the breakthroughs that we all want to see.
John Finnie also reminded us that Stephen Ritchie—a person who lives with MS—spoke powerfully about the progress that has already been made. Neil Findlay is absolutely right that we need to be honest with ourselves about where we are, but Stephen contrasted the treatment options that were available when he was diagnosed in the 1990s with what is available now. That should give us hope for the future. It will not be easy and I am sure that there will be setbacks along the way, but Stephen and Professor Chandran’s words offered encouragement about the feasibility and possibly the likelihood of a breakthrough being made.
No discussion about the importance of the research in Scotland into MS would be complete without mention of Professor Jim Wilson, who with his team at the University of Edinburgh has been carrying out world-leading work over many years. It is fitting that Professor Wilson is an Orcadian; Orkney has the highest incidence of MS anywhere in the world. There are many theories, but we really do not know why. In a population of 21,000, more than 100 people have now been diagnosed with MS, and that figure has more than doubled since the 1980s. As Professor Wilson says, whether that reflects
“improved diagnostic methods, improved survival rates or rising incidence”,
we simply cannot be sure. We know that it reinforces the need to redouble efforts to support research that can identify better treatments and, ultimately, stop MS for good.
Given the levels of MS within the population in Orkney, it is no real surprise to see such strong public support for MS awareness week in the islands over recent days. The iconic St Magnus cathedral has been lit up in orange this week and many shops and local businesses have shown amazing creativity in going orange over recent days. What has impressed me most has been how active the local MS community has become, not just over the past week but over recent years.
There is a genuine partnership in Orkney. It seems invidious to single out any individual, but I want to put on record my admiration for the commitment and sheer energy of the chair of the MS Society in Orkney, George Hannah, who embarks on every task with a good humour that never seems to flag. The increased level of activity—events, classes, outings and other get-togethers—are all helping to improve the lives of those with MS in Orkney.
As Alan Jamieson explained to me last night, providing opportunities for those with or who are affected by MS to share their experiences and feel the companionship of others who know what they are going through is crucially important. That is reinforced by the cover story of the latest edition of MS Matters, which highlights the risk of loneliness and isolation to those with MS. In the article, Soo Lyon-Milne talks about going from a point of
“waxing lyrical about ‘being positive’”
“an all-encompassing, soul-destroying, bitter depression”.
Mark Carey talks of MS “taking his identity”, which led to his shutting himself off from everyone. Treatments are vital, but reaching out—reassuring people that they are not alone—is almost equally important.
I was therefore delighted to join a painting class last week that was organised by the MS Society in Orkney. My dad is an artist, but it is safe to say that the talent has skipped a generation. Yet, thanks to the patience and skills of our tutor, Sheena Graham-George, I managed to produce this painting. It is amazing what people can do with some coloured water, a straw and an endless supply of Victoria sponge cake.
Once again, I congratulate George Adam on helping to keep the issue at the top of our agenda, and I thank all those in Orkney and across Scotland who help support people with MS.
Thank you, Mr McArthur. Every time I chair a members’ business debate, I learn something, and now I have learned something about your dad.18:46
I am pleased to have the opportunity to speak in support of the motion on MS awareness week, in the name of Paisley’s MSPs, George Adam and Stacey Adam—I have added Stacey’s name, because George said that that is the case.
My first written assignment on my first placement as a nurse 35 years ago, when I was a student, was to write a care-plan essay, and I chose to write about a woman who had been diagnosed with multiple sclerosis. I clearly remember a smart, bright and feisty woman in her 40s—I will call her Freda to protect her confidentiality. Freda was confined to a wheelchair and, when I met her, needed assistance with many of her daily living activities, including personal hygiene, putting on clothes, meals and mobility—which was absent; she was unable to transfer herself from her bed to a chair and back.
I clearly remember her competent ability to talk. In fact, she helped me. She taught me how to provide care for her, which led me to provide care for others for the next 30 years. She taught me about comfortable positioning for vulnerable heels, elbows and bahookie—which was her word, not mine. She guided me on how much food needed to be on the fork or the spoon to avoid my choking her, because she had difficulty swallowing. She did all that with a kind approach and a sense of humour.
We also talked about her MS and the need for research—this was 35 years ago—into the causes, treatment and a cure. For the remainder of my speech, I will focus on research and the positive steps that are being taken to identify the cause of MS, so that we can determine to treat people with improved drugs, and aim for a cure. I thank the MS Society and all the researchers and funders for their contributions that allow the research to take place.
MS affects 11,000 people in Scotland. It is often painful and exhausting and it can cause problems with how one walks, moves, sees, thinks and feels. It can be unpredictable, because the symptoms are different for everyone.
The Scottish Government commits £500,000 to NHS Research Scotland’s neuroprogressive network every year, in order to
“promote a culture of clinical research”
in neuroprogressive conditions, including multiple sclerosis, and to
“improve recruitment to high-quality studies from both urban and rural areas”
across the country.
Through the FutureMS project, the Scottish Government has invested almost £650,000 in a Scotland-wide study that collects clinical data and samples from 440 recently diagnosed relapsing-onset MS patients.
Additionally, the Scottish Government funds the SPRINT—Scottish PhD research and innovation network traineeships in motor neurone disease disease/MS—MS PhD programme for three PhD studentships in MS, led by Professor Chandran at the MS Society’s Edinburgh centre for MS research, which others have mentioned. Overall, there will soon be 13 PhD students for neurodegenerative disease in Scotland, funded through a contribution of £430,000 over five years from the Scottish Government.
Over recent years, the research, which other members have mentioned, has allowed clinicians and patients to discover the success that chemotherapy can have on reducing relapses and potentially supporting remission. When people hear the word “chemotherapy”, they instinctively think of cancer, which can be scary. However, chemo has been proved to slow the progress of the disease. It is an immunosuppressive agent and research has shown that it can help to suppress the activity of MS. It is also interesting to read about other research on topics such as remyelination, and identification of biomarkers and susceptibility genes.
I am also interested in exploring opportunities that are presented by Sativex, which is the first cannabis-based medicine to be licensed in the United Kingdom. It has been found to help to reduce muscle pain and spasm when a person has shown inadequate responses to other treatments. I am interested to hear what the minister thinks about Sativex and how its use could be expanded across Scotland.
Again, I congratulate George Adam on securing the debate, and reaffirm the importance of research that, no doubt, would have helped Freda and many others to receive help across Scotland.18:51
I am pleased to have the opportunity to speak in this evening’s debate, and I thank George Adam for bringing the issue of MS to the chamber and for his continued work on that topic.
I was disappointed not to make the MS reception. Certainly, from what I have heard this evening, I missed a good event. Unfortunately, it clashed with a reception that I was hosting.
I praise and thank the MS Society for its awareness-raising campaigns, particularly during MS awareness week. As many members have mentioned, MS awareness week allows us to raise awareness of a condition that affects more than 11,000 of us in Scotland. I have family who have lived with MS for most of their lives, and I have a friend who has, I am sad to say, recently been diagnosed with the condition. Few people are not touched by or aware of how disabling MS can be.
I thank the MS Society for its briefing, which highlights the extensive research and fundraising that it carries out. Like many neurological conditions, MS is complicated, and a number of factors need to be taken into consideration when determining whether a person is diagnosed with MS.
However, I was particularly encouraged by the words of Dr Anna Astier from the University of Edinburgh about her project, which was funded by the MS Society. As we have heard, her research was on vitamin D and the role that it plays in MS. Her research will potentially provide an answer as to why we have such a high prevalence of the condition in Scotland. It could also help to deliver more and better treatment for MS, with fewer side effects. Dr Astier has a very positive view—she believes that we have come a long way in the past 20 to 30 years and that we are getting ever closer to stopping MS.
Tonight’s members’ debate provides Parliament with an opportunity to press for that important work to continue, and for us to work together in driving forward that research.
One way for people with the condition to improve their quality of life is to have more specialised MS nurses in our health services across Scotland, but I am sad to say that the picture that was painted by Neil Findlay is accurate. Not long after my election in 2016, I was shocked to learn that no specialist MS nurses work in Dumfries and Galloway, despite more than 300 people in the area living with the condition. I believe that one specialist MS nurse now covers the area, but it is a huge geographic area.
Unfortunately, that is not a new problem in our rural communities, which I have been all too aware of throughout the experience of my dear cousin Anne McKnight. She is one of the people whom George Adam described. She is very much like Stacey—she is not a sufferer. In all the time I have known her, I have never heard her moan, despite her having lived with the condition all her adult life. Over the years, rather than seeing an improvement in the support that she gets from the NHS, that support has deteriorated. When she lived in Stranraer, she had to take 120-mile round trip to see a specialist MS consultant in Irvine, and the situation remained the same when she moved to Dumfries. The consultant in Ayr has retired, and a replacement has not been found.
There is a real lack of specialists. There might be neurological specialists, but there are not many MS specialists, and where they exist, they are really stretched. It is clear that, across the south-west, there is a real need for more specialist MS nurses and access to consultants. Without that specialist care, we are letting down every one of the 300 people in Dumfries and Galloway who are affected.
I would like to take this opportunity to highlight the specific case in my constituency of one remarkable girl who is going above and beyond to provide the care that her mother needs. Darby Mitchell, who is 10 years old and from Castle Douglas, looks after her mother, Angela, who was diagnosed when Darby was just two years old. At last year’s MS Society awards, Darby was the joint winner of the young carer of the year award—quite rightly—in national recognition of her efforts.
In preparing for tonight’s debate, I read a moving interview with her and her mother that was published last Christmas and highlights just some of the duties that she carries out, including helping her mum to get in and out of bed, taking her to the toilet, cooking and baking. Angela’s 13-year-old son, Mickenzie, also helps out. In the interview, Angela reveals how affectionate both of her children are towards her and how understanding they are of her condition. Darby is an incredible young girl who has accepted a different life from that of many of her peers, and it has been a real privilege to have the chance to highlight her incredible care in the chamber tonight.
Unfortunately, however, not everyone has a Darby or a Mickenzie, which makes MS nurses and support from the MS Society so important. I again thank everyone who is striving for a future without MS through funding and research. Working together as MSPs and campaigners, I hope that we can achieve that.18:56
I am pleased to respond on behalf of the Government and I thank George Adam for securing another important debate on MS.
Over the past couple of days, during engagements to mark MS awareness week, I have had the pleasure of meeting and speaking with many people who are affected by MS or who support others with the condition. Yesterday evening, I was pleased to be able to attend the reception that was hosted by George Adam in the garden lobby. Earlier today, I visited the Revive MS Support centre in Glasgow, which was a really useful experience. I met some of the centre’s users in the peer support area and I met the MS nurse to hear about the process that someone goes through when they arrive at the support centre and look at what the various options are. As Annie Wells said, no two people have the same MS. As part of that process, it is important that people can look at what the right options may be for them in relation to what support the centre can provide.
The Revive MS Support centre is very much a non-clinical centre, not just in terms of the work that is done there. There is a lot of different support and the centre has things such as a specialist MS physio and a pressure tank, but it is very much non-clinical in that people do not wear normal medical overalls with a name badge; they wear what would be considered casual clothes so that folk feel more comfortable. That is part of making sure that people are empowered. It is a very good centre and I encourage anyone, particularly if they are from Glasgow, to make an appointment to visit to see the fantastic work that is done there.
At the reception last night, as well as hearing from Professor Chandran, who has been mentioned by a couple of members, including George Adam, we heard from Stephen Ritchie, who both John Finnie and Liam McArthur talked about in their contributions. Stephen was diagnosed with MS when he was in his late 20s and he was a really good speaker—like John Finnie, I could have listened to him all night. I, too, had a chat with him afterwards to hear about his very personal experience of what he went through.
Stephen spoke of the challenges that he has faced, and of how being on the trial for secondary progressive MS has had a significant impact on his physical and mental wellbeing. It was interesting that he was very clear that he does not know whether he is getting the drug—he could be on a placebo—but the very fact that he had that hope was important for his wellbeing. That was good to hear, and it is real life stories such as that one and the others that have been shared around the chamber that emphasise the importance of investment in research, and why new and effective approaches to the prevention, diagnosis, management and treatment of neurological conditions are so desperately needed.
Today, I join members and others in paying tribute to the tremendous work of researchers and charities such as the MS Society to find a cure that will minimise the effects of this devastating condition. Much progress has been made in the past couple of years, and it is important to reflect on those considerable achievements and to recognise the dedication of those with MS and those impacted by the condition who are working with us to make a difference.
I, too, commend the MS Society, which has invested over £218 million in real terms in research since its inception in 1956, including in the MS Society Edinburgh centre for MS research and in numerous research projects across Scotland. Annabelle Ewing and George Adam talked about a number of those research projects, including the work on vitamin D. That funding has resulted in the first magnetic resonance imaging scanner dedicated to MS research, which is helping people to access treatment more quickly; research into alemtuzumab, which is now one of the most highly effective treatments for relapsing forms of MS; early trials of Botox for bladder dysfunction, which is now licensed as a highly effective symptom management treatment; and the development of the FACETS—fatigue: applying cognitive behavioural and energy effectiveness techniques to lifestyle—programme, which is a proven fatigue management programme that is being adopted around the world.
I could not see Stacey Adam in the gallery when I was looking for her, but I see that she is here. Last night, she said to me that there was one demand, as George had said that the MS Society does not have any demands. She said that her one demand was that I stand up and tell members that we have found a cure. I am sorry that I cannot make that announcement yet. However, as a Government, we are supporting a number of MS research initiatives.
Emma Harper talked about NHS Research Scotland’s neuroprogressive network. We have committed £500,000 to that to promote a culture of clinical research in neuroprogressive conditions and improve recruitment to high-quality studies from both urban and rural areas across the country.
I think that Emma Harper also mentioned the PhD students we are funding.
Will the minister take an intervention?
I will come on to the point that Mr Findlay made in his speech.
We have provided £430,000 to fund PhD students.
Through the FutureMS study, almost £650,000 has been invested in a Scotland-wide study to collect clinical data and samples from 440 recently diagnosed relapsing-onset multiple sclerosis patients. I think that that is the research that George Adam talked about. That study aims to model disease activity and to produce and support a more personalised approach to clinical management in the long-term.
A lot of good work is being done. I do not have time to cover all the research that is happening in Scotland, but I will cover the points that Mr Findlay made in his contribution.
The outcomes of new research and trials can be groundbreaking, but we must remember that we have a responsibility to thoroughly consider the clinical effectiveness and safety of new treatments so that people are able to make informed decisions about potential research.
I see that my time is almost up, so I will move on.
Research is just one aspect of our commitment to ensuring that people who live with neurological conditions are able to access the best possible care and support that will allow them to live well on their own terms. Neil Findlay asked about what we are doing to improve the landscape to allow people to live better and on their own terms. We have made it a priority through our programme for government to implement Scotland’s first national action plan on neurological conditions, which has been produced in collaboration with the neurological community and will be published in final form later this year. That five-year plan aims to build a sustainable neurological workforce; improve the co-ordination of services and support; improve equitable and timely access; and ensure that people and their carers and partners are involved in decisions about their care and that they experience the highest standards of care.
We worked closely with Healthcare Improvement Scotland on the revised general standards for neurological care and support, which were launched last month. They are integral to achieving our vision and clearly set out the care that people should experience throughout Scotland, regardless of the type of neurological condition that they have, their geographical location, care setting and personal circumstances.
The debate has again given us the opportunity to thank the researchers and charities, such as the MS Society, for all their hard work to minimise the effects of this devastating condition. I also thank everyone who has allowed their personal stories to be shared today. That has been particularly appreciated and has brought the issue home to us.
As Finlay Carson said, MS touches the lives of many families across the country, and this week’s awareness campaign celebrates the progress in research that has been made in recent years and the Scotland-based scientists’ role in it. The Government will continue to work with partners across all areas, including health, social care, welfare and housing, to improve the quality of life of people who are living, or supporting someone, with MS.Meeting closed at 19:05.