Meeting of the Parliament

Meeting date: Wednesday, April 26, 2017

Official Report 889KB pdf

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Multiple Sclerosis Awareness Week 2017

The next item of business is a members’ business debate on motion S5M-04021, in the name of George Adam, on multiple sclerosis awareness week. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes that MS Awareness Week 2017 will run from 23 April to 1 May; welcomes this opportunity to put multiple sclerosis (MS) on the agenda and raise awareness and understanding of the neurological condition that affects more than 11,000 people in Scotland, including in Paisley; celebrates the significant role that health professionals play in helping people with MS manage their condition, in particular the MS-specialist nurses who often provide frontline support; understands that, due to factors such as improved diagnosis, consensus around early treatment, and increased monitoring requirements, the role of the nurse has changed significantly over the years; believes that the provision of these nurses is vital to ensuring that there is appropriate support for people across the country; is concerned that some areas however might not have adequate provision; commends charities such as the MS Society Scotland and the MS Trust for championing the cause of people living with the condition, and notes the calls for members of all parties to get loud for tackling MS during the awareness week.

17:10  

I welcome members to what has become known as Stacey’s Scottish Parliament MS awareness week debate. My colleague Gordon MacDonald says, “You say that every year.” That is because I have been happily married for 21 years and I know my place.

Last year, we were not able to have a debate on the subject because of the Scottish Parliament elections, but the cross-party group on MS has always been extremely focused. Ever since it was first convened, we have set goals for what we can achieve. Over the years, we have debated many issues that affect people who live with MS. In recent years, we have debated the devastating impact of the Tories’ so-called welfare reform, through which people with MS have been singled out by the Westminster Government.

This year, I want to talk about the work of specialist MS nurses, who are a very important support for everyone who has MS—indeed, many cite their MS nurse as their key contact for treatment, care and support. Before I go on to talk about their work in more detail, I want to talk about multiple sclerosis in general and how it is an important part of the lives of Stacey and me.

As I have said in just about every debate that we have had on the subject, MS does not define Stacey and me as a couple. It is true that Stacey has had an incurable condition since she was 16 years old, but no one talks about her as “that woman with MS”. In fact, the opposite is true. Recently, Stacey has explained to people that she is a vulnerable adult. Technically, she is, but to her disappointment, people whom she knows and colleagues tend to laugh when she mentions it, because no one sees her that way. No matter how bad her disability gets, no one really sees her as a vulnerable adult. I know that that irritates Stacey, but I think that it is a great compliment to her fighting spirit. She never backs off from a challenge or—unfortunately for me—a fight.

On 9 June this year, Stacey and I will have been married for 21 years. I am led to believe that the local bookies in Paisley gave odds against us lasting six months, but here we are—we proved them all wrong. On the day of our marriage, Stacey walked down the aisle; today, she is more likely to be seen buzzing about the Parliament in her scooter. Life has changed, but her spirit has not.

On that day 21 years ago, my mother-in-law, Rosemary, said that I was always a very likeable young man. [Interruption.] Mr Dey has not heard the punchline yet. She said that I was not what she wanted for her daughter, but that I was a very likeable young man. I probably did not help on that occasion by giving her absolute pelters in my groom’s speech.

How have we dealt with all the challenges that we have faced over the years? Well, as the old song goes, “Love grows where my St Mirren goes.” I will probably pay for that later, because my mother-in-law is called Rosemary. We have taken on board the mantra “One town, one team” to such an extent that, along with Gordon Scott and 1,300 other fans, we bought the team. We might have had to deal with the many ups and downs of that great team, but it is a love that we both share. The tie that I am wearing is the limited edition anniversary tie that celebrates St Mirren’s great Scottish cup win 30 years ago. On Saturday, we will both be at the Paisley 2021 stadium. It is probably our friends from football who have noticed the biggest difference in Stacey’s condition. We have gone from sitting among all our friends in the stadium to having to ensure that we can get access for Stacey’s wheelchair—but that is a completely different issue for a different debate on another day.

As Stacey’s condition has progressed, her reliance on her MS nurse has become greater. Multiple sclerosis is such a complex condition that everyone’s symptoms are different, so it is necessary to have the specialist care that an MS nurse provides. There are always new treatments available, but unless a person has access to that expertise, they may miss out. The MS nurse can monitor a person’s condition and help to ensure that, when they meet their consultant, they get more out of the meeting.

The current problem is that there are not enough MS nurses in Scotland. There are 11,000 people in our country living with MS, and they need that specialist support. The MS Trust recommends a sustainable caseload of 358 people with multiple sclerosis per full-time specialist nurse. At present, only five of the 11 mainland health boards are deemed to have sustainable MS specialist nursing provision. Across Scotland, that is currently 25.9 full-time equivalent MS specialist nurses. For once I can say that Greater Glasgow and Clyde NHS Board has a good record—as the MS Society has said, it has recommended a sustainable model of MS specialist nurse case load that is actually more than that board currently needs. However, that is not the case in other areas.

The very idea of the MS nurse plays into the important role of self-management policies that the Scottish Government promotes. The MS nurse helps to reduce acute admissions through monitoring and understanding of the condition. The situation has changed dramatically since Stacey was diagnosed 28 years ago. The Scottish multiple sclerosis register’s national report in 2016 showed that 63 per cent of newly diagnosed patients had contact with an MS nurse specialist within 10 days of their diagnosis. That provision can be patchy throughout Scotland, which raises concerns about capacity in MS nursing provision and the levels of support that MS nurses are given to do their job. I understand that neurological standards are being reviewed at the moment, and I look forward to the MS Society playing a leading role in helping to shape future provision, because its expertise will be vital.

One problem area is NHS Lanarkshire, which recently had only one MS specialist nurse to deal with 1,200 patients—well in excess of the recommended 358 patients. She has since moved on to another role—within the MS community, luckily—and works with Revive MS Support in Glasgow. However, that leaves no provision for anyone in Lanarkshire who has MS. That situation must be addressed. NHS Lanarkshire, for its part, has been unhelpful when the cross-party group has asked questions about updates on the current position. In NHS Lothian, there are two MS nurses who have a caseload of 1,200 patients. That is still too much for them, but it is better than the situation in NHS Lanarkshire.

When she was asked in a recent MS Society Scotland video what her MS nurse means to her, Stacey said: “She helps me, she gives me valuable advice and we have a laugh when we shouldn’t.” Those specialist nurses are a resource that we must keep, because they will in the long term save our national health service money. They will continue to work with families who are living with MS and help to manage that horrible condition by ensuring that people with MS get access to disease-modifying drugs—DMDs—that will improve their quality of life.

As I said, MS affects more than 11,000 people in Scotland; it is often painful and exhausting and can cause problems with how people walk, move and see. With Stacey’s condition, I think that I have mentioned that two weeks after we were married, she turned round to me one day and said, “George, I can see two of you at the moment.” I said, “Life just gets better and better for you, Stacey.” MS can also affect how people think and feel.

In MS, a coating around the nerve fibres called myelin is damaged; it is a condition that the person will have for the rest of their life. There is no cure, but the research is progressing fast and there is still hope that one day a cure will be found. I think that that will happen a long way into the future, but that will not stop Stacey and me living our lives. We will carry on fighting and arguing—I am sorry: that was not in the script. We will carry on for the rest of our lives, and for the next 21 years, watching St Mirren, crying about St Mirren, arguing about St Mirren, along with spending time with our family, our children and our beautiful grandkids. No matter what life throws at us, it will not get us down. We both have far too much to be happy about. [Applause.]

Thank you, Mr Adam. You are a brave man—your wife is in the gallery listening to you and taking notes. We move to the open debate.

17:19  

It is great that we have this opportunity today to talk about MS during MS awareness week, and I thank George Adam for bringing this members’ business debate to the chamber. I know how much the issue means to him and his family, and it is clear from what he has said, here and to others, that he is recognised across the country as a champion for people with MS. I first met George long before I was an MSP, when he came to a meeting in Coatbridge. In his speech that night, he talked about MS and what he was doing about it in Parliament. It is for him a long-standing issue that he continues to take forward.

As George has said, MS is a lifelong neurological condition that affects more than 11,000 people in Scotland, with 600 new cases being identified each year. It is vital that we educate ourselves about the impact that the condition has on sufferers and their families. MS treatments and diagnoses have evolved and advanced in recent years, which has changed how we view and treat MS. However, the condition is still unpredictable; symptoms vary from day to day and from person to person. People who are newly diagnosed or who are struggling with changes in their symptoms can experience a confusing and lonely time.

MS is a condition that has a particularly high incidence rate in Scotland. The reason for that is still unknown, although many theories are circulating, including its being because of a lack of vitamin D. In any case, Scotland should take the lead in tackling the issue.

As other members will, I take this opportunity to acknowledge the fantastic and invaluable work that health professionals play in aiding people with MS and helping them to manage the condition. That is especially the case with the MS specialist nurses who provide front-line support, about whom George Adam talked. However, I will spend what remains of my speech talking about people in my local area who have been affected by MS.

A gentleman whom I have known for many years—Mr Clive Whiteside, who I believe is in the gallery—received his diagnosis in 2002. He probably will not mind my saying that my earliest memories of him are of him chasing me and my friends when we were kids because we were playing football on the wee bit of grass next to his house. When he received his diagnosis, Clive was immediately put in touch with an MS nurse, who was able to give him the advice and support that he needed to cope with the shock, and to explain to him the reality of the condition. That nurse is still Clive’s first port of call on living with MS. The nurse was able to provide helpful and vital networks for Clive by putting him in touch with other people who are living with MS. That nurse became a lynchpin in his life, along with his wife, Linda.

Clive received counselling at St Andrew’s Hospice in Airdrie and got to know the nursing staff well. Some of the nurses discussed setting up a group locally to support MS sufferers, and the head nurse, Anne Marie Toland, asked Clive whether he would like to become involved with it. Both Clive and Linda were keen to do that, and started to gauge what support there would be for it by leafleting doors, speaking with family and friends, and using social media and the local press. Two pilot meetings of the group were set up in December 2012 that a few people attended, so it was decided that the group should meet monthly. Further work was done to raise awareness of the group; they nearly ran out of chairs for its third meeting. The group continued to meet and became the St Andrew’s Hospice MS self-support group, or SAMS, in early 2013. Although independent of St Andrew’s Hospice, the SAMS group has its support and blessing, and continues to be a success.

Another interesting part of Clive’s story concerns Tim the MS bear, who some members might know about from social media. Tim was gifted to Clive and Linda, and rather than have him sitting about the house, Clive decided to put him on social media to raise MS awareness. Tim went out and about with Clive and Linda, and his adventures were posted on social media. Clive did not anticipate the following that Tim would generate; he started to receive messages about him from other MS sufferers and their families, including a lady in America, who got in touch about her husband, who was extremely unwell, and said that Tim had made her husband laugh. She then shared her story with Clive. Others did the same, and Tim has become very successful in breaking down barriers and opening up discussion about the reality of living with MS. Clive tells me that when Tim is photographed on his travels, people often ask “What’s the bear all about?” and that provides the opportunity to discuss MS.

The Presiding Officer is indicating that I should finish my speech. I was going to speak about MS specialist nurses in NHS Lanarkshire, which George Adam mentioned, but I know that other members will speak about that in their speeches. Needless to say, on behalf of Clive Whiteside and others, I will continue to fight, along with George Adam and other MSPs, for more MS specialist nurses in Lanarkshire. NHS Lanarkshire has now committed to providing two MS nurses, but I hope that it will do more and commit to having at least three, which is what is needed.

Thank you, Mr MacGregor—Many members wish to speak in the debate.

17:24  

I, too, congratulate George Adam on securing today’s debate and I pay tribute to his consistent campaigning on issues around MS and his passion for this important subject. In addition, I thank the MS Society Scotland for its useful briefing ahead of the debate.

I agree with George Adam that we should commend the role of all health professionals who are involved in supporting people with MS, particularly MS specialist nurses; and I share his concern that there are simply not enough MS specialist nurses in Scotland right now.

In my Lothian region, the two MS nurses have to manage a combined case load of more than 1,200 individuals. The MS Trust recommends a sustainable case load of 358 people with MS per whole-time nurse, but Lothian’s nurses are having to deal with almost twice as many patients. That means that too few MS patients who are newly diagnosed with the condition can be seen by a specialist nurse within the target contact time of 10 days after diagnosis. That is concerning and unacceptable, and it is why I have called on the Scottish Government to undertake a review of all specialist nurses and nursing teams in Scotland.

As George Adam said, we need a major improvement in enhanced specialist nursing capacity and care across Scotland. I hope that, in responding to the debate, the Minister for Public Health and Sport will outline whether the Scottish Government will commit to a specialist nursing review in Scotland.

MS nurses play such a vital part in allowing MS sufferers to self-manage their condition, and the nurses’ monitoring and specific understanding of individual patients can help to reduce acute admissions. If we invest in specialist nurses, we can make savings by reducing the pressure on the acute care in hospitals that patients sometimes need.

I also want to highlight some of the world-class research into MS that is being conducted here in Edinburgh at the University of Edinburgh’s centre for MS research, which George Adam mentioned. The centre was founded in 2007 with funding from the MS Society, which was renewed for a further five years in 2015. The research by academics such as Dr Veronique Miron has the potential to increase vastly our understanding of MS, provide better modelling of the condition and help to find new and effective treatments. The work is vital and I wish all the academics and researchers who are involved every success. We understand the cause of MS, and although we may be some way off finding a cure, research is progressing fast. I am pleased that Edinburgh and Scotland are at the global forefront of that fantastic work.

Before closing, I wish to talk about the potential benefit that the implementation of Frank’s law would have for MS sufferers in Scotland who are under 65. As with dementia and other life-limiting, degenerative conditions, it seems patently unfair that the current care support system actively discriminates against people with these illnesses who are under 65. I hope that MSPs from all parties, including Scottish National Party members, will get behind the Frank’s law campaign and support me in pressing the Scottish Government to put it into practice.

I welcome this important debate and thank George Adam for bringing it to the chamber. Many of my constituents in Lothian are involved in MS awareness week and I wish them success with the awareness-raising and fundraising efforts that they are undertaking across the Lothian region.

17:27  

Sharon is a woman with the same responsibilities as many of us. She works—she is a nurse—and, like many parents, she has to balance home life with work. She is also a cherished daughter, wife to her husband and mother of two wonderful children. But Sharon has MS, and that makes everything so much harder. She is in the public gallery today to watch this debate.

Although I have known Sharon for many years, this is the first time that she has told me what it is really like to live with MS. She said:

“The biggest issue I have found is people’s perception of what MS is. MS is an invisible illness, and I’ve had people say to me, ‘You don't look disabled’, as I don’t use a wheelchair. They always expect you to be using a wheelchair. I suppose it’s hard enough, knowing that I have a disease that does significantly impact on my life and my family’s, but when other folk don’t see an obviously unwell person, they don’t recognise that the level of support required can still be significant.

What’s also difficult is that my family are always alert to my condition, and look for signs and symptoms that might mean my MS is getting worse.”

Sharon was diagnosed when her son was four years old. He has grown up always knowing that mum cannot do certain things. She has mobility issues and cannot always do the usual, simple things that a mum wants to do with her children, such as playing in the park or running after a ball. Sharon can struggle with things that other mums are lucky enough not to struggle with. Not only is that physically painful, but it takes an emotional toll, too.

Sharon also spoke about her experience of fatigue and “brain fog”, as she puts it, which is where concentration and focus become extremely difficult—that is all too common for those with MS. She has days when she feels fine, but also days when she can hardly move or focus. Most people have a reserve of energy that is used up throughout the day—especially for those juggling a home life and a job. However, for those with MS, that reserve can run out far more quickly than most people appreciate.

Sharon also feels pressure about benefit reviews and fitness assessments, and she is fearful that she will lose the blue badge that is vital for her work and her private life.

We should all work to make the lives of people like Sharon easier, not harder. MS affects 11,000 of our fellow Scots. As we have heard, it is a condition that impacts them not just physically, but mentally and socially. We in this chamber should listen to the voices of those, like Sharon, who live with MS, and we should learn what they need to make their lives easier.

I, too, am concerned that NHS Lanarkshire, which covers my constituency, is currently without an MS nurse. To have had a service based on one individual is not sustainable, as was evidenced when the one and only MS nurse in the area resigned her post. While I have been reassured that NHS Lanarkshire is looking to recruit two nurses, with the second post initially being funded by the MS Trust, that still leaves a gap in provision in Lanarkshire until those nurses are in place. However, both nurses will be paid at band 6, while MS Trust nurses throughout the UK are paid at band 7. In fact, NHS Lanarkshire is the only Scottish mainland NHS board that does not employ band 7 MS nurses.

The previous MS nurse in Lanarkshire had a case load of around 1,100, as we have already heard, while the MS Society says that a case load of around 350 is more realistic. Having two nurses in the service will still not be enough to meet the needs of people with MS in Lanarkshire, but it is at least an improvement.

For MS nurses to have career progression and for there to be succession planning in the field, health boards must look at their skills mix in such services and make them sustainable, so that they continue to be able to provide the service that those with MS deserve.

Thank you very much. Ms Haughey, if I looked a bit distracted it was because a member had not pressed their request-to-speak button and they have now done so. I am not naming you, Mr Finnie. I call Monica Lennon, to be followed by Mr Finnie, who has now pressed his button.

17:32  

I begin by thanking George Adam and paying tribute to him for the way in which he has championed the MS community. Sometimes, it feels as though MS awareness week happens more than once a year—although Paisley and St Mirren get an awareness day on every day that George Adam is in Parliament.

Yesterday, George Adam and I had a nice chat, ahead of this debate, because, like him, Clare Haughey, Fulton MacGregor and others, I am very concerned about the picture in NHS Lanarkshire. That is not because of what has emerged in the Daily Record this week, which was very upsetting for me, because Emma Smith is a friend.

I have a wee thing about props.

I will put the newspaper down.

It has been well known for some time that to have only one nurse in NHS Lanarkshire with a case load of over 1,200 patients is not sustainable, safe or desirable, by anyone’s standards. I am among the first to defend the NHS—not just the people in the front line, but the big bosses too, because they have difficult jobs to do. However, I was very upset, on behalf of constituents of mine, who were themselves very upset that, in making remarks to try to reassure the public that it is taking every step possible, the NHS spokesperson had a go and accused unnamed people of scaremongering and raising anxiety. After that, I soon received phone calls from MS patients in my area.

I emailed NHS Lanarkshire, and it has promptly replied. I want to say this so that any patients who have been speaking out and speaking to MSPs know that NHS Lanarkshire says that the comment was not aimed at them and that it apologises to any patients who have been offended.

Several patients have been speaking to me, and they are content for me to share their testimonies, but I will not do that and I will not name them. We have seen one newspaper story and I do not want people to feel concerned that they cannot speak out.

It is clear to me that everyone in Lanarkshire who has been a patient of the nurse who recently resigned has nothing but the highest praise for her. We certainly wish her well and we are pleased that she will remain in the MS community.

However, it is not acceptable that things got to this stage. There seems to have been an awful lot of defensiveness and secrecy from NHS Lanarkshire. I have talked to the MS Society a few times this week, because it has a stall in the Parliament, which is great, and I understand that people are still concerned about the issue. I hope that in her closing speech the minister will pick up on some of the genuine concerns and anxieties that people have.

Of course, this week is about celebrating MS nurses and raising awareness. Other members have done that effectively. We need to see the person, rather than just the illness. This morning, it was fortunate that the MS Society stall was right outside a meeting room in the garden lobby, because I had to greet—at quite short notice—a group of young people and their teachers who were visiting from Sweden. The students asked me about a typical day in the Parliament and what I was doing today, and I was able to point to the MS Society stall and explain that this is an open Parliament, where people can come and talk to MSPs and lobby them, and where we can come together to have a debate such as this one in which we celebrate the fantastic work that our MS nurses do.

We need more MS nurses. I hope that the minister will take that on board, because 29.5 full-time equivalents is simply not enough when we consider the scale of the challenge that faces MS patients in Scotland.

I thank George Adam again for bringing this debate to the chamber. I hope to be able to contribute to such debates in years to come and I wish George and Stacey a happy anniversary, when it comes.

I call John Finnie. Please do not take my earlier remarks badly, Mr Finnie. I forgot to put my card in the console, so I did worse than you.

17:36  

Thank you, Presiding Officer. The one way to guarantee that the sun will go away is to move out of the sun—that is why I had moved seats. I apologise for that.

I congratulate George Adam on a number of things: on the motion; on his role in the cross-party group on MS, which works effectively with the assistance of the MS Society; on his promotion of the positive aspects of dealing with the pernicious thing that is MS; and on his generally positive outlook, which I imagine is an essential characteristic of the St Mirren fan. I wish him—if not his team—very well.

The motion

“welcomes this opportunity to put ... MS ... on the agenda”.

To many people in the chamber, and to about 11,000 people in Scotland, their carers and loved ones, MS is never off the agenda. I had forgotten that we did not have a debate last year, because such debates seem to have been a regular feature, but I have been reflecting on what might have happened to people in the past year, given the undulating nature of the condition, which George described very well.

Presiding Officer, if I were able to use a prop, I would hold up a newspaper with the headline:

“MS sufferer slams ‘awful’ benefits chiefs who axed her Motability car in favour of £65,000 taxis”.

There is no doubt that the welfare reform that the cruel and heartless Tory Government at Westminster has foisted on us has had an impact on everyone, not least the woman in the article, whose car was one of the 800 Motability cars that are being taken away every week. The decision was reflected on, and the same Government department ruled that the woman qualified for help to get to her work, so the Government is now paying £19,000 a year for taxis. That is the economics of the madhouse. The decision is deeply offensive to the woman in question, and it shows a heartlessness that we really do not want to see.

What we want to see, of course, is independence and mobility. There are many practical issues in that regard, with which I deal regularly, as I am sure that other members do. I was keen to support the National Union of Rail, Maritime and Transport Workers case against driver-only operation and the loss of the safety-critical train guard, particularly when I heard that wheelchair-bound people are often carried beyond their stop because there is no assistance for them. The problem was eloquently explained to me by Gale Falconer, a friend in the Highlands who is an MS sufferer. In a meeting, she described the frustrations of travel, the planning that needs to go into it and the advice and support that are needed.

I am also dealing with someone with mobility issues in relation to the repeated failure of a lift at a ferry terminal. If we want to take a collaborative approach to the issue, we need to get such small things sorted. There are also challenges to do with bus travel, which are well known.

Although I have very limited time, I also want to talk about the challenges of recruiting specialists, be they neurologists or MS nurses. That has been touched on with regard to the situation in Lanarkshire. I am particularly concerned about the retention of specialist staff given the threat posed by Brexit.

There is a lot to be very positive about. I will not reiterate what was said in this afternoon’s carers debate, but there is a lot of common ground. Setting aside the partisan nature of some of the amendments that were lodged for that debate, there is a lot of recognition of the real benefit that carers provide.

The motion for this debate commends the charities, MS Society Scotland and the MS Trust, and I know about the good work that is happening across my area. In particular, I am aware of some innovative work in Moray. In fairly recent times I have visited MS therapy centres in Inverness, Kirkwall, Oban, Lochgilphead and Portree. There is much to be positive about and there are a lot of challenges, but people who suffer from MS need to know that the people in the chamber give them their unqualified support.

Once again, I thank George Adam for lodging the motion.

Four members still wish to speak. I am therefore minded to accept a motion without notice, under rule 8.14.3, to extend the debate by up to 30 minutes. I invite George Adam to move a motion without notice.

Motion moved,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[George Adam]

Motion agreed to.

17:41  

I, too, warmly congratulate my colleague George Adam on his motion and on securing this important debate. I also send warm congratulations—I am sure that fellow members would, too—to Dean Reilly, who ran the London marathon on Sunday for the MS Society under his campaign, Dean vs MS. He completed the marathon and raised significant funds, and we should all send him our congratulations.

During MS week we all have the chance to reflect on the effects of MS, with its 11,000 sufferers in Scotland; to think about what more action can be taken to help our constituents who suffer MS to manage the symptoms that they deal with on a daily basis; and to think, collectively and collaboratively, about how we can support initiatives on finding a cure for the disease.

Fellow members have already raised the point about support and funding for MS specialist nurses. George Adam and Miles Briggs made points about NHS Lothian. The MS Society points out that NHS Lothian has the second-highest MS patient to MS specialist nurse ratio in Scotland, and the MS Trust has highlighted NHS Lothian’s need for two additional MS nurses to achieve a sustainable, ideal patient case load ratio. I wish to draw attention to and raise awareness of that point.

Most significantly, I want to support and raise awareness of local grass-roots MS organisations throughout Scotland. I draw particular attention to the MS Therapy Centre Lothian, which is based in Leith in my constituency. I should declare an interest, in that I am patron of the charity, which has supported individuals with MS for as long as I have been alive—since 1984. Centres such as the MS Therapy Centre Lothian do significant, important and meaningful work to support people living with MS by providing a range of support and services across different aspects of their lives. For example, the centres provide oxygen treatment, also known as hyperbaric oxygen therapy, using oxygen tanks. They also provide physiotherapy, yoga, pilates and other ways of helping those who have MS with self-management.

There is increased demand on some of the statutory services that support individuals with MS, and those local grass-roots organisations play a key role. They include organisations in the third sector and the not-for-profit sector. It is important to raise awareness of the great work that they do and to inquire whether we could do more to support them.

Finally, it is important to emphasise and celebrate the great work that is going on at the University of Edinburgh in working towards finding a cure for the disease. Miles Briggs alluded to that. The laboratory and clinical research that it does is pioneering and world leading. As we all work towards helping individuals, constituents and individuals whom we know who suffer from the disease, we are also trying to work towards a scenario in which we do not just manage the symptoms of this awful disease, but have medical solutions to cure it and alleviate the suffering completely.

17:45  

I thank George Adam for lodging the motion and allowing us to debate MS in the chamber.

As a member of the cross-party group on MS, I am keenly aware of George Adam’s role in convening that group, which is a truly cross-party one, and his long-standing interest in MS. I can give witness to the fact that he is ably supported by Mrs Adam. I am also keenly aware of the work of the MS Society Scotland, which acts as the secretariat of the group and has done sterling work in promoting awareness of MS and what we can do, not least this week.

In many debates, especially those about health conditions, members often describe their personal involvement with a certain condition. I find that, given that their contribution is coloured by private or family experience, it is often—or almost always—all the more powerful. In that vein, I want to talk about my father.

My father has suffered from MS for 32 years. He learned that he had the disease in the mid-1980s, when knowledge of the condition was still at an early stage. Luckily, he has been cared for well and, although the disease’s progression has been steady, it has been slow. He was diagnosed at the age of 40, which is my age now, so I find myself thinking about him a lot in this debate. I can just about remember him without the disease. I remember playing football in the park with him and having a race with him, but my memory of him for almost all of my life is of his living with MS. I pay tribute to his courage in living with MS and to his positive and optimistic attitude. He has never let it get him down, and I have never heard him complain.

What have I learned from that experience? I have learned that, like other diseases, MS of course affects the person who has it, but it also affects other members of the family. I have seen at first hand the effects on my father, his movement and walking and, especially as he gets older, the complications that it has with other conditions or sicknesses. I have seen the difficulties that he faces in everyday life in filling a car with petrol or travelling on the trains in Scotland. I have seen at first hand that having MS in a rural setting provides its own challenges. Ben Macpherson talked about grass-roots MS organisations. I could not agree with him more. The MS Society group in Lochaber is the one that I know best.

As the MS Society briefing for NHS Highland says, one of the issues is long travel times involved in reaching outlying areas. For example, the MS specialist nurse in Argyll and Bute splits her post between MS and Parkinson’s care. She will have a case load of 150 people with MS. That case load for a 0.5 specialist is called a sustainable one, but that assumes that the nurse has three days of administrative support. Such a nurse also needs professional development.

There are other pressures. Eighty per cent of respondents to the MS Society’s survey are still seen in hospital, despite the move to care in the community, which we all support.

The need for neurological conditions to move up the list of priorities for integration joint boards has been raised in the cross-party group. Integration is too often about governance, structures, finance and strategy. We must quickly also start to concentrate on specific conditions and make integration work in practice.

MS affects 11,000 people in Scotland and three times as many women as men. It remains a huge issue that I want to stay close to while I am an MSP.

I have great pleasure in supporting the motion. The issue is very close to my heart. I have grown up with the disease, lived with it and watched it, and I now find myself explaining to my children why their grandfather cannot walk. He is unstintingly optimistic and enjoys life to the full. I thank him publicly for the example that he has set me in life. He has never been defined by MS. He lives with it, but I always like to think that he has defeated it.

17:49  

I join others in thanking George Adam for again giving Parliament the opportunity to raise awareness of MS; to acknowledge the very particular way that the disease affects the 11,000 sufferers in Scotland and its effect on their family, friends, colleagues and others around them; and to pay tribute to the health professionals and many others who provide the necessary care and support.

Back in 2013, I led a similar debate on MS. St Mirren probably had a crucial mid-week fixture that evening, but there was good reason for me to lead the debate and to take part in many debates on the subject over the years. That is because Orkney has the dubious honour of having the highest incidence of MS not just anywhere in Scotland but anywhere in the world. When I led that debate in 2013, I referred to research that had been carried out by teams at the University of Edinburgh and the University of Aberdeen. At that stage, the incidence of MS in Orkney was found to have almost doubled since the 1980s and, since then, it has continued to rise. There are now almost 100 sufferers in a population of just over 20,000, with a particularly high rate among women. The reason for that is not yet abundantly clear. As Dr James Wilson, who himself is an Orcadian and who leads the research at the University of Edinburgh, has said,

“These findings may reflect improved diagnostic methods, improved survival or rising incidence.”

No doubt, that is a plea that more research is needed, and indeed it is.

I am pleased that the debate has focused on the critical role that is played by health professionals, and in particular MS nurses, in providing support. In Orkney, that is Moira Flett, or at least 40 per cent of Moira Flett, in terms of full-time equivalence. The role is an invaluable and wide-ranging one that involves initiating and monitoring treatment for people with relapsing forms of MS, providing information and support on how best to manage MS, co-ordinating care and providing vital emotional support. That is hugely appreciated. One of Moira’s patients has said:

“My MS nurse is great because she listens carefully to any problem big or small and helps come up with the strategies to make a life with MS that little bit easier and manageable for myself and my family”.

George Adam talked about gaps in provision across the country. I am pleased to say that NHS Orkney, working closely with colleagues in Aberdeen, appears to be meeting the MS standard for service provision. That is partly due to the impressive development of telehealth over the years. However, that is not to say that there is not more that can and should be done. According to the MS Society, to which I am grateful for its briefing, much more can be done in allowing MS sufferers in Orkney greater ability to participate in physical activity and exercise opportunities. I will be working with Moira and others locally to help to deliver that.

I want to pay tribute to someone else this evening. In past debates, I have talked about the fantastic work that was done by Angela Monteith on behalf of the MS community in Orkney and more generally through her work with the MS Society. Sadly, Angela, who was an MS sufferer, recently passed away. She was a stalwart in raising money for and awareness about MS, and she never missed an opportunity to brief me on the latest issues. A particular example that springs to mind was when she pointed to the specific challenges for MS sufferers and their families in an island community in getting together and providing support for each other, given the logistical challenges. Angela is greatly missed, but she has left a lasting legacy. No doubt, that is in part played out in the decision by pupils at Stromness academy and Westray junior high school to donate £3,000 from each school through the excellent youth and philanthropy initiative—about which we should hear more in the Parliament—to support MS sufferers and the MS Society.

I thank George Adam for allowing Parliament to get back to having an annual debate on the issue and to playing a role in raising awareness of MS, recognising the efforts of all those who are involved in supporting people with MS and, most important, taking steps to meet the needs of MS sufferers and their families, friends and colleagues wherever they may live in Scotland.

The Minister for Public Health and Sport (Aileen Campbell) rose—

That just shows your enthusiasm, minister, but I call Clare Adamson.

17:54  

I thank George Adam for securing the debate, if for no other reason than that it has allowed me to play a small part in the George and Stacey show.

I commend the work of the cross-party group on MS, of which I am a member and which I know works tirelessly to make sure that understanding of MS stays at the top of the agenda in this place and in the wider community.

The theme of the debate has been NHS nurses. Given that I am the MSP for Motherwell and Wishaw, the situation in Lanarkshire is of some concern to me, as it is to my constituents. I first learned of the situation when it was brought to my attention in December 2016. Some of the group in North Lanarkshire were told that NHS Lanarkshire was not taking up MS Trust funding to fund a second, much-needed MS specialist nurse. I was disappointed by that decision and sought clarification from NHS Lanarkshire. Indeed, I wrote to ask that the matter be covered in the next briefing that it regularly holds for MSPs and MPs. Unfortunately, that briefing has been cancelled again.

As recently as last week, I wrote again to ask what the long-term plans for sustainable MS nurse support are for constituents in the NHS Lanarkshire area, especially given that we have been told that the one nurse who was there had a case load of more than 1,600 patients, when the recommended number is 329. I have had some information from NHS Lanarkshire, but we need to get answers about what its long-term, sustainable provision will be. What has happened to the funding that was supposed to be used for this process? We need clarity about what is happening in North Lanarkshire because, given the contributions that we have heard this evening, it is evident that the situation is not as it should be, or as it is in the rest of the country.

Why is the issue so important? Like George Adam, I know my place. I am a wee sister and in all things to do with MS I defer to my sister Eileen, who is 59 and is an MS sufferer. I called her earlier today and asked her what her MS nurse meant to her. She said that they were someone for her at the end of the phone or the end of an email. When she is in desperate need and has a urine infection, for example, and needs immediate care, she can go to her MS nurse and get care immediately without having to negotiate through her GP practice.

Eileen also told me that she is in the middle of negotiating the personal independence payment process. My sister had a lifetime award of PIP and is finding the whole process to be completely frustrating. Her trade union told her that she ought to have been able to get a face-to-face interview at home, but she was asked to travel 30 miles to Birmingham to an assessment centre. If she is unwell, especially if she has a urine infection, which is one of the symptoms of MS, such a journey could make her even more unwell and it would be really uncomfortable and difficult.

The most frustrating thing for Eileen is that, given that she still works, she wanted to get the day of the meeting changed from a Friday to a day when she does not work, but that has been extremely difficult. She says that she is not prepared to go on a Friday. She wants to work on the Friday because she is a GP and she does not want to let her patients down. It highlights the complete disaster that the PIP system is when a health professional is taken away from her job—which lets down her patients and costs the economy, given the need to find a replacement doctor—to undergo a PIP assessment that is completely and utterly unnecessary given that the situation for MS patients will not change because the disease has no cure.

I highlight that because it is a dystopian situation. It is terrible that people in Scotland and the rest of the UK still have to undergo the PIP assessment regime. I highlight to people who are watching the debate that there is still an opportunity for them to take part in the expert panels that the Scottish Government has set up to ensure that our replacement system will have dignity at its heart.

Thank you. I was loth to cut speeches short because they are all so very interesting. The minister is looking enthusiastic so I now call Aileen Campbell to close on behalf of the Government.

18:00  

Presiding Officer, I am sorry for being a bit premature in standing up before I was called. We all want to go and enjoy the MS event that will happen later on in the garden lobby. I am sure that everyone is eager to get there and take part.

I am pleased to have the opportunity to close today’s debate marking MS awareness week 2017. As we have heard from so many members this evening, MS is a condition that touches many families around the country and everyone has some personal experience, whether it be of a family member or a friend or colleague.

As other members have done, I pay tribute to my colleague and friend, that likeable young man—as his mother-in-law described him all those years ago—George Adam, who I have known for some time. He has campaigned with tenacity to advance the cause of greater support for those who have MS and has used his position as an MSP to continue that work. I also pay tribute to his wife, Stacey Adam, who is a phenomenal campaigner who is absolutely not defined by her condition but is known to be a tireless worker in raising awareness about MS, among other issues. George said that Stacey has enormous fighting spirit and I agree. In part, she needs that to support St Mirren, but—more seriously—her strength is an inspiration and echoes that of the great many campaigners who are here this evening and who will join us at the event.

I also pay tribute to the members who talked about the folk and professionals they know who either have MS or help those who do. I pick out the powerful and emotional contribution from Donald Cameron, which gave an insight into the impact of his father’s MS on the whole family. I mention also Clare Adamson, who talked about her big sister and her interaction with the DWP and the struggles that that has created. It is not easy for members to talk about their personal experiences in the chamber, but the impact on debates is immensely important.

Today’s debate gives the Parliament an important chance to come together to raise awareness of MS. As a Government, we believe that everyone living with MS should be able to access the care and support that they need, including support for their families and carers. The Scottish Government values the important role that specialist nurses and allied health professionals play in supporting people with multiple sclerosis and other debilitating conditions. Specialist nurses work within multidisciplinary teams to provide invaluable support and specialist advice to people affected by particular conditions. They also act as an important resource for the team, sharing their knowledge and skills with teaching staff and advising on the most appropriate interventions and care plans.

Members will be aware that, in recognition of that vital role, the First Minister announced in January 2015 an additional £2.5 million to be invested in specialist nursing and care from 2015-16. Those funds have been earmarked as recurring to allow that important investment to be sustained. The additional funding has already enhanced patient access to specialist nursing support and advice. For example, NHS Grampian, NHS Greater Glasgow and Clyde and NHS Fife have all appointed additional MS clinical nurse specialists. We will soon publish the specialist nursing and care report, which will set out how the additional funding has increased overall specialist capacity and how access has been enhanced. I hope that that responds in some way to the issues that Miles Briggs raised.

We realise that there are pressures in certain boards and will continue to work with the third sector, social care partners and NHS boards to ensure that everyone who requires specialist nursing services has access to the highest standards of care in every setting.

As well as being the minister for public health, I am a Lanarkshire MSP and have an interest in the situation in NHS Lanarkshire. We have been in contact with the board, which has sought to assure us that patients will continue to be able to access a specialist nurse with MS experience and that NHS Lanarkshire has put interim arrangements in place. The board is recruiting and is in discussions with the MS Trust. We will keep a close eye on and continue to monitor the situation. I will also seek to remedy the problem that George Adam raised about updates from NHS Lanarkshire for the cross-party group and, more generally, to ensure that information about the situation is provided to those MSPs who have an interest.

Alongside the challenges, the improvements that have been made are important to note. Since 2009, there have been increases in the numbers of MS nurses, and the number of neurology specialist nurses has increased from 8.6 whole-time equivalents to 28.7. Preliminary figures show that the percentage of newly diagnosed patients who have contact with an MS specialist nurse within 10 days has increased by 4 per cent.

However, in that and other areas, we totally accept that progress needs to continue and that work still needs to be done to make further improvements and to ensure that people have the support that they need. We will work hard to do that.

Ben Macpherson spoke about the support beyond the NHS and of the centre in Edinburgh of which he is a patron. He is absolutely right to raise awareness of that work.

Yesterday, I was in Govan opening Revive MS Support’s new centre and I met staff and people who live with MS. That facility offers a range of complex, person-centred treatments and support, similar to what Ben Macpherson described—oxygen, reflexology and a host of other complementary therapies. We also heard about writing groups, acting groups and various other ways in which people with MS are supported. The centre is a fantastic example of the way in which third sector organisations can work in partnership to complement NHS services and deliver person-centred care that is innovative and which also provides camaraderie and friendship. This Government was proud to be able to provide funding to support the development of the centre in Govan.

Third sector partners like the MS Society, the MS Trust and Revive MS Support play a crucial role that should be recognised. They act as powerful advocates for people with MS and deliver high-quality services and support to people with the condition. We have a good relationship with the MS Society and I am pleased to say that we have recently been able to provide funding to the MS Society to support its active together project, which will test and evaluate approaches to enabling people who are affected by MS to become more physically active. This is the first time that such an ambitious and innovative project to increase the physical activity of people with MS has been offered in Scotland, and we are proud to be able to support that work.

On Liam McArthur’s point about incidence, through our MS register, we are capturing more data and are starting to understand more about incidence rates in Scotland. We want to take that further and work to understand the prevalence and its causes via funded research. We will continue to keep members with an interest updated as that work progresses.

I would like to thank members for their thoughtful and personal remarks throughout the debate. I am sure that I will see some of them shortly at the MS Society event in the garden lobby.

It is important that we continue to strive for improvements in all aspects of care for people with MS. We must, and will, keep looking at how we can do better; how we should transform and improve care; and how we can equip ourselves to deliver even better health and social care services for those who live with MS and, indeed, other neurological conditions.

We have a hugely committed and professional workforce in our NHS. With the continued support and hard work of everyone involved, I am confident that we can continue to improve care and provide better support for people living with MS.

Finally, I pay tribute once again to George Adam for raising this issue in the Parliament and giving us all the opportunity to highlight this condition.

Meeting closed at 18:08.