Multiple Sclerosis Week 2013
The final item of business is a members’ business debate on motion S4M-05976, in the name of George Adam, on multiple sclerosis week 2013. The debate will be concluded without any question being put.
Motion debated,
That the Parliament welcomes MS Week 2013, which takes place from 29 April until 5 May, and understands that, during the week, the results of the My MS, My Needs survey conducted in 2012 will be revealed, detailing information about people with MS and this information will produce an insight into the condition and the lives of the estimated 10,500 people in Scotland and 100,000 throughout the UK who have personal experience of MS.
17:08
Members will be aware of my involvement with the Multiple Sclerosis Society; I am a member of the Paisley and district branch. They will also be aware that my wife Stacey has MS, and I welcome everyone to what is effectively her debate. If I think for one minute that the debate has anything to do with me, I am surely kidding myself on, because, like a lot of people, I did not know much about multiple sclerosis until I knew Stacey and we were married. There are quite a lot of things about the condition that a lot of people do not know.
Stacey is here today with her mum and dad. Incidentally, her dad is 75 years old today—[Applause.] Part of his birthday present was to work for me as a volunteer in the office for the past couple of days, and he is currently the oldest intern in the Parliament.
Stacey’s family is one of many who are dealing with this indiscriminate disease. Stacey was diagnosed at 16 years old. I said earlier that people can misunderstand MS, and Stacey’s family is a perfect example of that. Tom, Stacey’s dad, just told me this story last night. Stacey’s mum, Rosemary, was a nurse—a health professional—when she was working and she understood what MS was. When Tom went to see the consultant, Rosemary asked him to ask specifically about multiple sclerosis. He came back that night and said, “Yes, Rosemary, you’re correct. It’s multiple sclerosis.” Tom had no idea what MS entailed or what it was—he just gave Rosemary the message. Rosemary, who is a very strong woman, broke into tears and started hugging Tom. From then on, Tom knew exactly what they had ahead of them.
Lots of people misunderstand MS, which can be very difficult for people with the disease. There are various versions of it: benign, relapsing and remitting, secondary progressive and progressive. Stacey has gone from having relapsing and remitting MS to secondary progressive.
MS makes a difference to people’s lives, and their families. Most people who are diagnosed with MS are between the ages of 20 and 40, at the peak of their life and a time when they are looking to the future, thinking about their careers and thinking about family. Being diagnosed with such a devastating, complex condition can really change the course of someone’s life and what they want to do. However, I have always found that the people with MS whom I have met do not mope and say, “Woe is me,” or complain about their situation. They all seem to be very positive. They say, “Yes, I have this incurable condition, but I will grab life and make the most of it.”
When I first met Stacey, one of the reasons why I was attracted to her was her sheer lust for life—members thought that I was going to say “for me” there, did they not? [Laughter.] Her sheer lust for life was the main reason that I found her so attractive; she lived every day as if it were her last.
MS is an incurable condition. It is the result of damage to the myelin—the protective sheath that surrounds the nerve fibres of the central nervous system—which interferes with messages between the brain and the body.
There are a couple of interesting women’s Facebook groups—more women than men get MS—with names almost about those women’s sisterhood. I will not mention them here, because that would probably not be polite in this company, but members should check them out at a later date.
The symptoms of MS can include intense pain, problems with mobility and co-ordination, severe depression, deadening fatigue, incontinence and loss of vision. No two people have the same type of MS; every person can have different symptoms.
The statistics are difficult for anyone to comprehend. Scotland is among the countries with the highest prevalence of MS in the world. An estimated 10,500 people with MS live in Scotland, but MS does not just affect the individual. As I have mentioned, it affects their family, friends and colleagues, so the actual figure of people affected by MS in Scotland is more than 63,000—only 10,000 fewer than the population of the great historic town of Paisley.
Members: Oh!
It is quite a lot of people.
There is some dark humour around MS and there are some funny stories about how people deal with it. People can have a positive outlook. Not long after Stacey was diagnosed, before the family built their extension, Stacey and her mum fell down the stairs and landed on top of each other. Instead of lying there in a heap, crying, they just looked at each other and started laughing, because it was such a bizarre situation for the two of them to be in.
Stacey once left for high school for a higher exam, wearing a patch on her eye because she had double vision, and wanting to be independent and do it on her own. Her mum watched from the highest point in the house to try to see her get to school and be sure that she was okay, while remembering that she was a young, independent woman who wanted to live her own life.
Two weeks after we got married, Stacey turned round to me and said, “George, I’ve got double vision. I’m seeing two of you.” How lucky can a girl get? During the first 10 years of our marriage, because of Stacey’s short-term memory loss, I won every argument. I said, “I told you that. That’s what I said.” These are some of the things that happen. In Liam McArthur’s MS debate, I mentioned a rather personal way in which the condition affects Stacey. I think that I got away with it, although other people may say otherwise. I will not go down that route now.
In October, the MS Society conducted the “My MS, My Needs” survey, which went out to 10,000 members throughout the United Kingdom. Some of the figures that were reported from that survey were interesting. Fifty-three per cent of respondents had been offered the opportunity to attend a self-management course in Scotland—that is one of the questions on which we scored highest. However, a quarter of people said that they could not see their neurologist when they needed to, only 9 per cent of people who wanted to be involved in clinical trials had been given that opportunity and only 36 per cent were eligible to take medicines that alter the course of MS.
Those are the facts and figures, but below them are the kind of stories that I have been talking about, involving real people’s real lives and real issues. We must look at the challenges that will come up in the next couple of years. Welfare reform will have a massive effect on people with MS because people do not understand that the symptoms are different for everyone and because there is a lack of understanding and belief regarding the condition and a lack of expertise in its assessment. There is also the fluctuation of multiple sclerosis in individuals. We are talking about a disease that can change not just from week to week or from month to month, but from hour to hour. That is one of the big things about MS.
Positive work is going on out there. Revive MS Support, which is based in Maryhill, in Glasgow, is doing some great outreach work in Paisley, Cathcart, Hamilton and Douglas. I absolutely love the work that it does because it works with individuals, talking to them about how they are dealing with their MS. A lot of the time, some tea and sympathy make a big difference to people who are dealing with the condition on an on-going basis.
I will stop at this point, Presiding Officer. You have been more than kind with the time that you have given me.
We must remember the real families behind the statistics—real people dealing with real issues. Working with the public sector, charitable organisations and health professionals, we can start to make things better for those who are dealing with the challenges of multiple sclerosis.
We are quite tight for time. If members could restrict themselves to four minutes, that would be very helpful.
17:17
I congratulate George Adam on introducing a very important debate in an informative and humorous way. It is important that people should learn more about the condition. An earlier report by the MS Society, “Fighting Back: Ordinary people battling the everyday effects of MS” highlighted that a lot of the problems that people with MS have spring from the attitude of others, which is often based on a lack of knowledge. It is important that we find out more.
Today’s report, “A lottery of treatment and care—MS services across Scotland and the UK”, which George Adam highlighted, tells us about some disparities in the level of service. We recognise that it is a balanced report that contains some good news—for example, in what it says about self-management, which George Adam emphasised. The levels of self-management in Scotland are much higher than in England, and credit should be given to the Scottish Government for investing resources in that and ensuring that more than half of people with MS have the opportunity to be on a self-management course. However, it would be remiss of us not to highlight some of the more disturbing figures in the report.
The general issue that the report raises is the perennial tension between local decision making and national standards, which gives rise to what is often called postcode care. Again, however, we should give credit to the Scottish Government for having national neurological standards—that was a really important development in the previous session of Parliament. Some of those standards are generic, but some—three of them, I think—are specifically about MS. Not only do we have the standards, but a peer-reviewed report came out last year. I cannot pretend to have read it all, but I looked at the Lothian report. Although some of the generic standards were not met, the specific MS standard on access to a multidisciplinary team was met. I was pleased about that, although the people on the MS stall outside said that that did not always reflect the experience of individuals with MS. George Adam cited the fact that only 75 per cent of respondents said that they were able to see a neurologist when they needed one. We must recognise that there is more to be done on access to the multidisciplinary team, which is vital.
I hope that the minister will tell us when he sums up what the follow-up is to the neurological standards. I believe that a neurological advisory group is overseeing the implementation of those standards, but I am not entirely clear about its role or powers. Having standards is only the first part of the process, and ensuring that there is progress in implementing them is clearly the necessary follow-up.
I would be particularly interested to hear from the minister about access to drugs. That issue is very much featured in the report, and George Adam referred to the worrying figure that only 36 per cent of people have access to the drugs that might benefit them. That is a matter of concern. I certainly remember from my days as health minister that in 2002 a risk-sharing scheme was set up for beta interferon in particular, which was supposed to improve access to that range of drugs for MS. I have lost track of what has happened to that over the past 11 years but, as part of the minister’s summing up, I would be interested to hear about drugs in general and about what happened to that scheme.
As I indicated, the report says that we are good on self-management. There are also loads of examples within and outwith the NHS of excellent services. On Friday, I will visit the MS Therapy Centre based in Leith, which has outstanding person-centred holistic care for people with MS, and provides services such as oxygen therapy, neuro physiotherapy, reflexology, aromatherapy and massage.
As I am nearly out of time, I will close by quoting from today’s report:
“The Clinical Standards and upcoming changes to health and social care put Scotland in pole position to improve services for people with MS.”
While recognising that there is still a lot to do, I think that there are grounds for optimism and that we can expect further progress.
17:21
I congratulate George Adam on securing this debate to highlight MS week and some of the great work that is done by the MS Society, which is a UK charity, across the country in dealing with that terrible disease.
I have no great knowledge of MS—I am not an activist like George who campaigns for MS—but, like many families in Scotland, I have a close family member who suffers from MS. Therefore, my main reason for speaking is to show solidarity with other families and carers who deal day in, day out with the sometimes devastating effects of multiple sclerosis.
Multiple sclerosis is a complex disease, as George Adam has highlighted. What we know is that it is the most common disabling neurological disease among young adults. It affects nearly 100,000 people in the UK. MS is most often diagnosed in people between the ages of 20 and 40 so, at the age of 16, Stacey was diagnosed even younger than is the norm.
Research suggests that a combination of genetic and environmental factors may play a role in the development of MS, which is why it is such a complex disease that involves not only biomedical science research but genetic research. There are many contributing factors, so we simply do not know what may cause MS, which makes the disease difficult to treat. As George Adam has also mentioned, every single patient’s experience of MS is different.
There is also around a 2 per cent chance of a child developing MS when a parent is affected, which is higher than might be expected in the general population. Although it is not considered an inherited genetic disease, there may be genetic factors that we simply do not understand.
MS is almost unknown in places such as Malaysia or Ecuador, but it is very common in the UK—and particularly in Scotland—North America, Canada, Scandinavia, southern Australia and New Zealand.
I want to highlight some of the great work that the MS Society has done. It has produced the wonderful “My MS, My Needs” report, which gives us a picture of what is happening around the country and gives us cause for concern and food for thought. The survey would not have been possible without the groundbreaking work in setting up a database of those who have been diagnosed with MS. That project throughout the country has been groundbreaking because it provides the MS Society with a source of patients for such surveys, for example, and it is invaluable to researchers who might want to contact people to inform them of some of the groundbreaking treatments that are available for MS.
It would be remiss of me, as a politician, not to mention the devastating impact that the welfare reforms are having on some people who suffer from MS, simply as a result of the lack of knowledge about what the disease does, how it can affect people and how their condition can vary from day to day. Cases have been highlighted to us in which people have been very badly treated when their ability to work has been assessed by people who have not understood their condition. That is extremely worrying, and it applies to the assessment of people with other neurological conditions, such as motor neurone disease, who have faced some of the same complications. We should put that right.
One of the first questions that I asked as an MSP was about the guidelines for general practitioners on vitamin D. Although we still do not have a firm consensus on the view that vitamin D could play an important role in preventing the development of MS, there is no doubt that the health benefits of vitamin D are well documented. It is important that, as people who live in a country in the northern hemisphere, we all ensure that our dietary requirements as regards vitamin D are met.
17:26
I, too, thank George Adam for initiating what has become an annual debate during MS week, and I congratulate the Multiple Sclerosis Society on its excellent report on MS services across Scotland and the UK, which resulted from the “My MS, My Needs” survey that it carried out last year.
Given the widespread occurrence of MS in Scotland—some 10,500 people here live with it—it is likely that all of us, myself included, will have some connection with an individual who has been diagnosed with it, so I hardly need to remind members of the varied symptoms of the disease, from the cruel wasting of muscles to chronic fatigue and problems with speech and sight. A disease of unproven aetiology and with, as yet, no known cure, MS is a complex condition that can be difficult to diagnose. That is why the work of the MS Society Scotland, through events such as national MS week, is so important in raising awareness.
I turn to the motion and the MS Society’s report. It is clear that there needs to be far more emphasis on providing information for people with MS on the treatments that are available to them, and on the planning and provision of appropriate support services. In the time that is available to me, I would like to highlight a few factors that are specific to Scotland.
One of the striking findings of the survey that the MS Society carried out is that as many as 29 per cent of people in Scotland do not have enough information about medicines that can alter the course of MS, and that only 36 per cent of those who are eligible for such treatment are getting it. Moreover, given that treatment is advancing all the time, it is concerning to learn that in the Highlands and Islands and my area, North East Scotland, only 9 per cent of those people who wish to participate in clinical trials of new and evolving medicines can do so.
The situation with regard to other issues, such as access to care and support services, reinforces the existence of the oft-mentioned postcode lottery. The report highlights regional differences: 80 to 100 per cent of people in Edinburgh and the Lothians who needed to see a neurologist have done so, whereas in Scotland at large around 25 per cent of people said that they could not access a neurologist when they needed to. That is despite the conclusion in last year’s NHS Scotland final report on neurological health services that all but four health boards were meeting the peer-reviewed criterion for access to an MS multidisciplinary team.
I think that the MS Society Scotland’s suggestion that every person in Scotland with MS should have two comprehensive reviews a year to assess their needs, and the level of care and support that they require, should be heeded. Perhaps the minister will comment on progress in that area in his speech.
The report provides a more positive response in the field of mood and emotional support for people with MS in Scotland, where we perform better than the rest of the UK, with 58 per cent of need being met, compared with a UK average of 51 per cent. However, as with all things, the fly in the ointment again lies with regional differences. People in the Highlands and Islands do not feel that they have the same access to emotional support as people elsewhere in the country. Let us remember that, for an individual with MS, emotional support is every bit as important as any other form of treatment and help.
There is a clear need for people with MS to be helped to self-manage their condition, which requires education and the provision of appropriate information. When we debated the issue at around the same time last year, members, including me, spoke about the Social Care (Self-directed Support) (Scotland) Bill, which is now an act of Parliament. The key aim of the bill was to ensure that people with disabilities could be supported to lead a normal life and to participate fully in society by having a greater say in planning for their care and a greater choice in the support that is available to them, so that care could be tailored to meet their individual needs.
To achieve that, the Government and the statutory sector need to work together with the third sector to provide the tools and support that people with MS and other long-term conditions—and, importantly, their carers—require to manage their lives. I would be interested in finding out about how self-directed support is working so far and the benefits that it is bringing to individuals who live with MS.
Once again, I thank George Adam for leading this important debate.
17:30
I join others in congratulating George Adam on securing this debate during multiple sclerosis week. I also congratulate Stacey Adam on educating George and on going further than that and ensuring that he did not share some of the personal stories that I have witnessed him sharing in previous debates. It is clear that his passion and conviction have been born out of Stacey’s experience.
We are right to recognise that 100,000 people across the UK live with MS, with twice as many women as men. Almost 10,500 people in Scotland live with the condition, which means that we have one of the highest rates of MS in the world, if not the highest. The condition appears to be random, and Clare Adamson was right to describe some of the complexity that underpins it.
As one of the few original members of the Parliament—I said “original”, not “older”—I can recall that, in 2000, campaigners descended on the Parliament to protest about the lack of treatment and care services. They rightly challenged us to do more, particularly given that the prevalence of the condition in Scotland is so much higher than it is elsewhere. We listened, and we agreed that action needed to be taken. Malcolm Chisholm has described some of the action that he took personally, and the issue has been a priority for successive Governments. Circulars have been issued, standards have been set and resources have been made available, but it must depress us all that a postcode lottery remains and that the experience that people have on the ground is not what we would want for them.
I remember that, at that time, we were told that people in Turkey had a better chance of receiving the drugs that they needed to deal with MS than people in Scotland had. Now, only about one third of people who would benefit from taking MS drugs actually receive them, which is about half the figure in Northern Ireland, never mind the rest of the UK. Only MS sufferers in Poland and Romania get worse treatment than we provide in Scotland.
The MS Society survey is extremely helpful. It tells us that about a quarter of MS sufferers say that they cannot see a neurologist when they need help with their symptoms. In 2009, the Scottish Government published clinical standards for neurological services, which I recall being welcomed by members from across the chamber. However, although the standards might have improved for those who get a service, it is clear that not enough of a difference has been made for those who require services at particular points in time.
I am reminded of the debate that we had earlier on funding for the third sector. We have a policy framework that is largely right and members from across the Parliament agree about what needs to be done but, 13 years on, the frustration is that there is no consistent delivery on the ground. We must not allow that to continue. I hope that the minister will drive real change so that people’s experience of treatment and care improves.
The survey also considered the emotional, social and employment impact of MS. We need much wider consideration of the actions that we can take to mitigate some of those wider impacts. Of people who are diagnosed with MS, 44 per cent are depressed because of uncertainty about the future. Therefore, Nanette Milne was right to talk about the emotional support that can be provided. Some people reported experiencing social stigma because of a lack of knowledge and understanding in wider society, while others expressed huge fears about having to give up work prematurely. Ultimately, people with MS want to live as full and active a life as possible before their condition progresses. As George Adam rightly said, they are real people and families and we need to provide them with treatment and support so that they can do just that.
17:35
I, too, warmly congratulate George Adam on his motion, on securing the debate and, if I may be blunt, on the turnout that he has managed to achieve. As Jackie Baillie said, his speech was excellent. While I do not think that anybody should discourage Scottish men from sharing, it was quite obvious that on this occasion there had been a degree of vetting by Stacey of his speech that was dramatically absent when we had a similar debate back in March.
On that occasion I led the debate. There has been much talk of the prevalence of MS in Scotland. I take no pride in saying that the incidence of MS in my own constituency of Orkney is the highest anywhere in the world, at around 400 people per 100,000—a number that has doubled since the 1980s. I fully concede that in preparing for that debate, I went on a voyage of discovery about what the condition is, how individual it is—as George Adam has already indicated—and how generally misunderstood it is.
It is very timely that this evening’s debate coincides with MS week. The MS Society is to be warmly congratulated on its efforts to try to raise public awareness.
The report that has been published to coincide with MS week helps to extend our understanding of the condition and of the problems experienced by each individual with MS and their family and friends. Malcolm Chisholm pointed out that the report identifies where we are getting it right and the good aspects of the improvements that we have been able to deliver—over successive Administrations, as Jackie Baillie said. The report also identifies, quite rightly, where we are falling down.
There has been much reference to disparities in relation to access to medication in Scotland in comparison with other parts of the UK. It is interesting to note the disparities in relation to access to medication between different parts of Scotland itself. There is a clear message that more needs to be done.
Obviously, the issue is not simply about medication; Malcolm Chisholm mentioned his imminent visit to the MS Therapy Centre in Leith. Shortly after being elected, I had the privilege of visiting the MS Therapy Centre in Kirkwall. I was struck by the commitment of the volunteer staff there who, led by Bruce Mainland, provide support for about 30 clients in Orkney.
Nanette Milne touched on the fact that the issue of isolation can often be overlooked. I would not say that isolation is an issue solely in rural areas, although perhaps the challenges in such areas are even greater. When I spoke to Bruce Mainland at the time of my visit I was struck by the problems that the centre experiences in encouraging people to engage with it in the first place.
I note from the briefing for the debate about MS therapy centres that the first centre, which was founded in Dundee in 1982, took the motto, “Self-help is our way of action”. The briefing explains that:
“Every person who uses a Centre has taken the decision to take personal charge of the management of their symptoms.”
That is a very important ethos, but it brings with it challenges in terms of getting people to engage in the first instance.
Once again, I warmly congratulate George Adam on his speech. I suggest that Stacey perhaps should have oversight of more of his speeches on other areas, too. I look forward to joining others at the reception this evening.
17:39
I, too, congratulate George Adam on his motion and on securing the debate.
The first reception I attended at the Parliament was an MS Society event at Our Dynamic Earth, not long after our first meeting of the session. We had the opportunity to talk to a number of MS sufferers that night, and I probably learned more about MS than I had previously known, even though I know families with an MS sufferer and had visited the Stuart resource centre in Aberdeen, in my former council ward, on previous occasions. I was struck by the bravery of a number of the folk present that night. I went to the Stuart resource centre again to talk to folk there and to see an exercise session in practice, which was a bit of an eye opener.
Great as the service provision that we have in Aberdeen may be, what I and others fear most is the welfare reform agenda. On 5 February this year, the Parliament’s Welfare Reform Committee listened to Marlene Hepburn, an MS sufferer from Stirling. She was originally from the north-east of Scotland, but teaching jobs took her elsewhere. She worked as long as she could and was quite blunt about the difficulties that she faced. However, I think that the most galling thing for Miss Hepburn was not the disease itself but her recent work capability assessment.
Vulnerable people may be denied lifelines if various benefits are withdrawn from them. Nanette Milne talked about constant assessment, which is fair in relation to ensuring that people get the best possible treatment. However, one constant assessment that I cannot agree with is the constant work capability assessment that folk with MS and other debilitating diseases will face under the current regime.
The UK Government needs to get this absolutely right. It needs to rethink Lord Freud’s refusal to designate vulnerable groups and take certain folk out of work capability assessment. I agree with Nanette Milne about constant medical assessment, but we do not want constant work capability assessments. We must ensure that folk who want to grab life, as George Adam described it, and have their independence can have it for as long as possible. That is why it is so important that we ensure that the welfare changes do not affect people’s independence.
Some of the evidence that the Welfare Reform Committee has heard at the have your say evidence sessions has been quite shocking. Folk should look back and see what Marlene Hepburn and others have said about what is going on.
17:43
I apologise to members, as I have to go after my speech.
I congratulate George Adam on an excellent speech. I know that the illness is close to the hearts of a number of members in the chamber. It is a horrible, frustrating illness that affects young and old alike. In my family, my auntie suffered from it in the latter years of her life, and my brother John was diagnosed with it in his very early 30s. The illness has resulted in his progressive deterioration to the stage where he has been using a wheelchair for the past six years. He has to use a car with hand controls and he needs assistance in many areas of his life, given all that the disease entails. However, he maintains as much independence as he can, which I think is very much a characteristic of the people who suffer from the disease.
My concerns—I have no doubt that they are shared across the chamber—are about inconsistency of treatment and advice. Different health boards operate different policies, with access to consultants almost impossible in some areas but much easier in others.
Access to specialist nurse services in some areas is very inconsistent, too. Some people have their nurse’s mobile phone number and can speak to them almost immediately. Others have never seen a specialist nurse. It has been suggested that each patient should have two comprehensive medical reviews a year, which would be a revolution for some sufferers.
When new specialist drugs become available people have to go through an exhausting, endless process of application and appeal, pleading their case time and time again. In my brother’s case, that happened when beta interferon came out. The lengthy process that he went through—to get a drug that made him worse when he took it—added to the stress and anxiety.
A big issue with MS is the mental exhaustion that accompanies the physical exhaustion. If someone cannot walk a step or swing their body around, just getting out of bed in the morning and getting dressed must be massively stressful and exhausting. I do not think that many members can imagine how it would feel to go through that every day, before our day had even begun.
MS patients are hugely resilient and cope tremendously well with an illness that currently has no cure, but they need our help. They need hope, and they need our support. In some areas, such support is significantly lacking. I make no party-political point when I say that; I make the observation merely as someone who has family experience of MS.
17:46
I congratulate George Adam on securing the debate and I wish the MS Society well with MS week. I refer members to my entry in the register of members’ interests: I am on the board of directors of the MS Therapy Centre in Inverness.
I spoke in the previous debate on MS about the trauma that is associated with diagnosis. We heard from George Adam about the circumstances of Stacey’s diagnosis and the trauma that was associated with that. As he said, the issue is very personal. We can talk in terms of statistics and percentages, but when we put a name to a case it becomes very meaningful.
I understand that approximately 85 per cent of people with MS suffer
“an initial, short-term neurological episode known as clinically isolated syndrome ... A definitive MS diagnosis is based on a combination of factors, including medical history, neurological exams”
and
“development of a second clinical attack”.
That was a direct quotation, and it is the only medical reference that I am likely to make.
I had a look online at the research and found a layman’s summary, which included some interesting points. Pregnancy appears to afford female MS patients a precipitous drop in symptoms during the second half of gestation, and researchers are considering how the benefit could be extended to people who are not pregnant. I thought that that sounded exciting. The Swedish Neuroscience Institute is considering matters.
A year on from the previous debate, people still have care and support demands. We heard about the challenges that are associated with that, and Liam McArthur talked about how the problem affects people in rural and landward areas. I will be parochial and talk about NHS Highland, which has an identified nurse, Anne Stewart, who is based at Raigmore hospital. She sees patients in hospital and at home, and she provides advice and support for people with multiple sclerosis and their families, friends and healthcare professionals—we should not forget that some healthcare professionals find MS very challenging.
Anne Stewart also liaises with local MS groups and the MS Therapy Centre in Inverness, which offers a range of treatments, including a hyperbaric chamber. I pay tribute to Jackie McIntosh, the centre’s manager, and all the centre’s staff, volunteers and supporters—and indeed my fellow board members—because the centre is a great rock for a number of people.
Links with social services are part of the specialist nurse’s remit, which is particularly important in the context of the integration of health and social care, on which Highland Council and NHS Highland have taken a lead.
A year on, there are still financial challenges. The Scottish Government’s provision of £270,000 for MS therapy centres is welcome. The Multiple Sclerosis Centre Mid-Argyll is looking at developing its services and transporting them to people who are further afield and currently out of reach.
I note from the report, “A lottery of treatment and care—MS services across the UK”, which members have mentioned, that 68 per cent of folk said that they receive care from someone who is unpaid and that 89 per cent said that they require assistance, of whom a quarter said that they require constant assistance. Press coverage indicates that the minister welcomes the report and I welcome that.
Malcolm Chisholm talked about the neurological clinical standards. The national neurological advisory group has identified MS as a priority, which is very welcome because efforts need to be co-ordinated.
A number of members have spoken about welfare reform, which is a compelling and dark shadow looming those who have MS as well as a number of other people. However, not everything is right with the existing arrangements. I know someone who was unable to secure reasonable adaptations in their workplace, which should have been readily achievable in this day and age.
A year on and there is still hope. In last year’s debate, I said:
“In any fight, we need resilience and strength of mind, and in my experience that is to be found in abundance among MS sufferers and their supporters.”—[Official Report, 2 May 2012; c 8671.]
That is still the case.
I again congratulate George Adam on securing the debate.
17:50
I begin by congratulating George Adam on securing time for this important debate.
As a minister who has to respond to members’ business debates on a range of conditions, I should say that the value of someone’s personal experience always throws into relief the impact that a condition can have on the life of an individual and their family. George Adam has done that in debates on MS on a number of occasions and it is to his credit. I am not sure whether Stacey appreciates some of the personal information that he discloses to us, but I congratulate George on the work that he has undertaken to pursue MS issues.
I also take this opportunity to congratulate the MS Society on its 60th anniversary. It does a tremendous amount of work with individuals in helping to improve their lives. It also does a vital amount of promoting new research and raising awareness and understanding of the condition. All that is extremely valuable.
I welcome the report that the MS Society published this week. It is balanced and it reflects on the areas in which good progress has been made in Scotland and other parts of the UK, as well as illustrating areas in which further work and improvements are required. I share the MS Society’s aims that everyone who has MS should be able to access the care and support that they need, and we clearly need to do more, especially given the high levels of MS in Scotland.
A number of members referred to the national neurological standards, which were introduced in January 2010 specifically to address some of the issues that Neil Findlay brought up in his contribution about trying to reduce the variance that can exist between different health board areas. Some detailed work went into the development of those standards, and work was done with all 14 of our territorial boards.
Within those standards, three are specific to MS. They cover access to specialist services, diagnosis, and on-going management. The standards specifically state that people who have MS should have access to a multidisciplinary team, including a consultant and an MS nurse. The MS Society acknowledges the fact that, on the whole, people in Scotland who have MS have access to a broad range of specialists.
The standards also set out the requirement that people who have MS should have access to a review from an MS specialist service at least once every 12 months. It is important that, if necessary, that review can take place at an earlier stage through self-referral.
The implementation of the national neurological standards is key to delivering the improvements that the MS Society’s report is looking for. To achieve that, we have provided health boards with funding of £1.2 million to develop local neurological improvement networks. All 14 boards have demonstrated a real desire to move forward and improve local services, although I recognise that some are starting from different points from others and still have to make progress.
I was very conscious that, having established the national neurological standards and completed the peer review, and given the willingness that had been established on the part of boards to make progress, we needed to ensure that we maintained momentum and oversight in the process. That is why we established the national neurological advisory group, which is a collaboration between NHS Scotland and the third sector to oversee and support our boards and to ensure that they continue to improve on their plans.
As has been mentioned, the advisory group has already identified as one of its initial workstreams the need to ensure consistent and equitable access to MS services throughout Scotland. I hope that I can reassure members that we are not just taking that forward within NHS Scotland; the MS Society is a key partner in delivering on that workstream and has a member of the workstream group to assist with that.
Malcolm Chisholm referred to the work that still has to be taken forward within the boards on the neurological standards and the opportunities resulting from the integration of health and social care. The report recognises that and provides us with good opportunities to build on the progress that has been made.
One of the key issues highlighted in the report is the concern about access to disease-modifying drugs. The United Kingdom MS risk share scheme, established in 2002, includes a number of drugs that patients in Scotland can access provided that they meet criteria from the Association of British Neurologists for those who can benefit from the drugs in question. More recently, the Scottish Medicines Consortium has licensed further drugs to help to treat patients with MS.
Clinical care is a matter for clinicians directly, and the Routledge review is looking at how access is provided to new drugs. However, if MS patients are unable to access drugs for their condition in their area, whether that is down to lack of knowledge on the part of clinicians or a lack of information about what the options are, it is a matter of concern to me. I have asked officials to explore how we can identify the barriers and what action can be taken to remove them.
A number of members talked about the need to ensure that those who have MS receive the type of care and support that they require within the community. I believe that the best type of care and support is person-centred care, which is why I place so much value in the benefits that come from self-directed support. The Social Care (Self-directed Support) (Scotland) Act 2013 will come into force this time next year.
The MS Society report highlights the areas where progress is being made and where further progress needs to be made. I can assure the chamber that this Administration is determined to ensure that we build on the progress that has been made so that further improvements are gained in the years to come.
Meeting closed at 17:58.