Multiple Sclerosis (Availability of Treatment)
The final item of business today is a members’ business debate on motion S4M-05346, in the name of Liam McArthur, on a postcode lottery for people with multiple sclerosis. The debate will be concluded without any question being put.
Motion debated,
That the Parliament understands that Orkney has the highest recorded rate of multiple sclerosis (MS) per capita in the UK and one of the highest rates in the world; understands that approximately 10,500 people in Scotland have MS; believes that MS can have an affect not only on people with the condition but also their families, friends and colleagues, meaning that it impacts on over 63,000 lives in Scotland; understands with disappointment that, in Scotland, there remains a so-called postcode lottery for accessing treatments and neurological services to deal with MS, and understands that the MS Society believes that the Scottish Government should address what it sees as this inequality and ensure that levels of treatment and support for people with MS are the same regardless of where they live.
17:01
I hope that, over the next half an hour or so, we will achieve a number of things.
First, we have the opportunity to further raise awareness of what multiple sclerosis is and how the disease affects the lives of 10,500 sufferers in Scotland, as well as their families, friends and colleagues.
Secondly, I hope that we can build up a picture of where in the country we are meeting the needs of sufferers well and where there is room for improvement—and I believe that there is room for improvement. I look forward to hearing the experiences of and contributions from colleagues across the chamber. I thank them in advance, as well as those who signed the motion and allowed the debate to take place.
Thirdly, I am keen to put on record my admiration of and gratitude for the work that is being done by a host of individuals and organisations in the field, from health professionals and researchers through to the Multiple Sclerosis Society, volunteers and support groups across the country. Without their efforts, the situation that MS sufferers in Scotland would face would be unimaginably bleaker.
It would be nice to think that, along the way, we might also be able to restore the tarnished reputation of the Vikings, whom certain tabloids have accused of being responsible for the high incidence of MS that is found in Orkney, my colleague Tavish Scott’s Shetland Islands constituency, and other parts of the north. That seems unfair, and more important, it is not supported by growing research evidence.
However, that same research, which was carried out by teams at the University of Edinburgh and the University of Aberdeen, makes alarming reading for those in the northern isles. In a report that was published last year by Elizabeth Visser, Katie Wilde and James Wilson—who is an Orcadian—the incidence of MS in Orkney was found to have almost doubled since the 1980s, to 402 per 100,000. For women in Orkney, the rate of diagnosis is running at an astonishing one in 170. Being world leaders in neolithic archaeology, marine renewables or bird and sea-life populations is a source of great pride for many of my constituents, but knowing that the islands that I represent boast the highest rate of MS anywhere on the planet is simply depressing.
If it is not all the fault of our Viking ancestors, what are the reasons for the dramatic concentration of MS sufferers in Orkney, Shetland and other parts of the north of Scotland? At this stage, a combination of genetics and environment appears to be the most credible answer, although, as Dr Wilson explained:
“These findings may reflect improved diagnostic methods, improved survival or rising incidence.”
Despite the uncertainty and the need for further research, vitamin D deficiency appears to be a determining factor. It has long been acknowledged that MS is increasingly common among populations the further away from the equator they are. Indeed, although we have enjoyed some uncommonly sunny weather of late, visitors rarely head to the northern isles in search of a tan, although few who come to them leave disappointed or without a ruddier complexion than the one that they arrived with.
The disease attacks the nerves in the brain and spinal cord, and interrupts signals between the brain and the body. It is incurable, although treatment can be effective in delaying symptoms.
Like the causes, the symptoms can be hard to pin down. They can include intense pain, mobility and co-ordination problems, severe depression, fatigue, incontinence and loss of vision. For some people, there are periods of relapse and remission. For others, the pattern is one of progressive deterioration. That variety in the form that the disease can take often makes life more complicated for sufferers and those around them. People often assume that sufferers will be wheelchair bound or very old, yet diagnosis invariably takes place between the ages of 20 and 40. Many of the symptoms are invisible, and they can come and go.
Supporting those with a diagnosis is not straightforward, either. Angela Monteith, a constituent who has been helping fellow sufferers for many years both directly and through her roles with the MS Society, has pointed out that people who have just been diagnosed want to know what to expect. That is difficult, because the disease is never the same for everyone and, post diagnosis, it is almost impossible to predict the future.
What is being done to help those who are affected? As the title of the debate suggests, the picture nationwide is patchy, and unacceptably so. In 2009, clinical standards were published, detailing the quality of services that someone with a neurological condition should receive. There is a standard for MS, but a peer review in 2012 demonstrated that, in many instances, the standards remain unmet.
Rather than focusing on where there are failings, it is perhaps more constructive and effective in promoting change to highlight instances of good practice. NHS Tayside, for example, has a multidisciplinary team, including an MS physio and social worker, who work closely with the Dundee branch of the MS Society in an excellent partnership between the public and voluntary sectors. NHS Ayrshire and Arran’s collaborative approach is also worthy of mention, in particular the excellent Douglas Grant rehabilitation centre.
I am pleased to say that NHS Orkney is meeting the MS standard for service provision. Two groups have been set up to ensure that that continues and to enhance partnership working further. Those groups involve physios, speech therapists, doctors and occupational therapists, as well as local groups and charities representing people with MS and other neurological conditions. That approach, in a small community with more than its fair share of sufferers, is absolutely the right one, and I congratulate all those involved. I know that plans are in hand for an awareness day next month, covering all aspects of living with a neurological condition, and I am sure that it will be well received and well attended.
As Angela Monteith explained to me recently, in an island community, MS sufferers and their families face some unique problems relating to geography. Although regular get-togethers are held, they can be hard to attend for people living on the smaller outer islands, and the sense of isolation can exacerbate other problems that they face. The costs of patients travelling to Aberdeen for neurological check-ups are extremely high, although it is encouraging to note the increased use of telehealth options. The local MS nurse in Orkney helps to support patients during teleconsultations with the Aberdeen-based neurologist. Not only does that save money but it reduces the physical strain that is caused to the patient by excessive travel. Their application in Orkney might be obvious, but I am sure that greater use could be made of telehealth options elsewhere in Scotland, too. Those examples of innovative solutions to meet the needs of MS sufferers in different parts of the country should give us all confidence that we can move away from the current postcode lottery of service provision.
Orkney may top the world’s league table for MS, but it is a disease that affects all parts of the country. As MSPs, we have a role to play in better understanding the needs of sufferers; in raising awareness of the disease and of the forms that it can take; and in pressing health boards in our constituencies and regions to ensure that standards are being met. Those are just a few things to be getting on with ahead of MS week, which starts on 29 April.
In the meantime, I again thank colleagues for their support and, in advance, for their speeches, and members of the MS Society—particularly Angela Monteith—for the advice and expertise that they have provided. Finally, thanks to me, the reputation of our Viking ancestors is a little less tarnished this evening.
17:09
One of the reasons why I wanted to speak in the debate is that my wife, Stacey, has MS. I know that you have been involved with the MS Society Scotland for some time, Presiding Officer. I declare my interest; the subject affects me very personally.
Liam McArthur has framed the debate around Orkney, and I am aware of the situation there because of a documentary by Elizabeth Quigley a number of years ago, which discussed the fact that more of us seem to have MS in Scotland compared with anywhere else per head of population.
This is one of those issues on which I will talk from a personal point of view. MS is a strange condition and something that I did not know much about before I met Stacey. Like a lot of people, I had a misunderstanding of the condition. People get the idea that, as Liam McArthur said, sufferers end up in a wheelchair or not able to work. However, the opposite is true. Most of the people whom I have met are very motivated. I do not know whether the condition has made them that way, but they all seem very motivated. It is almost like the Frank Sinatra song “That’s Life”—they think, “I fall down, I get back up and I just keep moving on.” That is, literally, the way that a lot of people with MS deal with life. We do not know why we have such a high rate of MS here in Scotland.
I recently had a situation with my wife. Stacey will probably kill me for talking about personal stuff but, last week, we had that conversation when she said, “That’s me, George—it’s getting worse.” More or less, she was saying, “This is me checking out, George—time’s run out.” When we got married, she promised me that she would be gone by the time she was 30. I am now 44, and she is still hanging in there, but she was genuinely worried. For people with MS, their mood, the way they feel or not having the support of their family can mean that they end up feeling that way. I laugh it off and joke with her, and that way probably works for the two of us, but members will never have seen a woman so happy as she was when the doctor told her that her back pain and all the other problems were because of a urinary infection. She will be really pleased that that is now in the Official Report.
The first hustings that I went to during the election in 2011 was run by the MS Society in Paisley and district. There was a lot of pressure on me, because it was my first hustings, it was in Paisley and it was on MS—it was almost like a home game for me. However, one of the candidates took the pressure off when he announced to everyone that he was an economist and had absolutely no idea about multiple sclerosis and even less idea about how the national health service worked. Suffice it to say that that kind of helped me, and it might be one reason why I am standing here today. He had a total misunderstanding of multiple sclerosis. He did not understand the issues that people have to deal with or that the condition affects every sufferer differently.
One issue that the MS Society raised recently is about the serious problems that are coming its way because of welfare reform. A lot of people with MS can be okay one week and bad the next. The situation with disability living allowance, the personal independence payment and, in particular, the bedroom tax could lead to issues for some MS sufferers.
I received a letter from a constituent that I was told I had to read out. It states:
“I was diagnosed in 1989 (23 yrs ago) and no-one seemed to know anything.
I was at Uni and I thought it important to tell the campus GP, he called me a liar as I was too young.”
That person was Stacey Adam, now aged 40. She sent that to me because everyone thinks that things have changed and moved on. They have changed slightly, but there are still issues and we still need to get the message out on multiple sclerosis.
Thank you, Mr Adam. I will make sure that Mrs Adam gets a copy of the Official Report, so we do not expect to see you in here tomorrow.
17:13
I congratulate Liam McArthur on securing the debate. Scotland has the highest incidence of MS in the world, with about 10,500 people estimated to be living with the condition. That makes the issue of keen interest to us all. The impact of the disease extends to families, friends and colleagues. I associate myself with your remarks, Presiding Officer, on George Adam—I hope that he survives seeing his wife this evening.
We know that MS is an unpredictable disease and that it is, unfortunately, currently incurable. Too often, people who are affected by MS are confronted by a postcode lottery in accessing healthcare, which can mean long delays in diagnosis, poor access to rehabilitation and, in some areas, lack of access to even the most basic care.
As colleagues have pointed out, in 2009, the Government published the clinical standards for neurological health services, in order to address the issue. It then carried out a review, ending in 2012. It charted progress, which was patchy. For example, one finding of the interim review was a
“concern that the momentum to drive improvements will decline at the end of the programme”.
The review also found
“a requirement to increase opportunities to spread and share good practice”
and
“concern that improvements would be hindered without additional investment.”
There was also a need for
“a common core data set to drive improvements in neurological services.”
We could do more. A postcode lottery remains despite progress, as does variation in people’s experience of services throughout the country.
Although we need to improve access to health services and, indeed, to social care services, I will spend a little bit of time celebrating some of the services that are provided by the voluntary sector. Those services provide the glue in most of our communities; they provide practical support not only to MS patients but to their families.
I know from experience of Leuchie House Short Break Care how important good access to care is for people who are affected by MS and for their families. Leuchie house provides residential short breaks and day respite care. It also provides preventative services, rehabilitative services, reablement and intermediary respite and care services, physiotherapy, emotional support and complementary therapies. The list is long. Since July 2011, when Leuchie became an independent charity, it has dealt with something like 200 patients and their families. It has provided much-needed care for those who are cared for, as well as for carers. An impressive range of services is available there.
I will be privileged to spend an evening in Leuchie house in a couple of weeks. I invite members who have not visited it to take the opportunity to do so. Leuchie house is summed up by testimony from one of its guests:
“Leuchie is the only place where I don’t feel disabled.”
That is the kind of provision that we should value.
The Dumbarton and district branch of the MS Society is active in my area and provides a number of excellent support services. It recently organised a new drop-in centre for sufferers of MS and carers in Helensburgh, which enables them to meet others with the disabling neurological condition.
Progress has undoubtedly been made. Initiatives such as those that I have described at Leuchie house and in Helensburgh are available locally to assist sufferers in coming to terms with the disease. We need more such examples, because they are positive examples of what can be done practically to help MS patients. However, too many people do not have access to such facilities. More needs to be done to ensure that patients get the treatment to which they are entitled, regardless of where they live.
17:17
I congratulate Liam McArthur on lodging his motion. I reassure him about the reputation of the Vikings. I have attended—as I am sure many members have—the excellent exhibition at the national museum of Scotland on the Vikings, but multiple sclerosis does not feature as a contribution of theirs to our society.
I also pay tribute to the speech that George Adam made. He and Stacey have obviously approached the condition with which they have to live in a positive and engaged way. That positive attitude is probably part of what accounts for their being together still and celebrating continued marriage.
I am one of those who knows of, but not a great deal about, multiple sclerosis. Therefore, I am probably in the wider majority of the public. It was interesting to see in the briefing that we received that one of the hopes that the MS Society has for the debate is that awareness is generally raised. I now know much about MS that I did not know before; I knew only some of it, in part.
MS is an autoimmune disorder that is characterised by episodes of inflammation on the brain. It is progressive, but the rate of progression is unpredictable, and the cause remains unknown. It is not hereditary—I knew that—but there can be a familial risk. It is not infectious—I knew that—but some people think that it can be triggered by a virus. There is no known cure and it affects more women than men.
MS is usually diagnosed in young adulthood—between 20 and 40. In particular, I note that NHS Greater Glasgow and Clyde, which services West Scotland, said that a record number of young people were diagnosed with multiple sclerosis in its area last year, and there has been a sevenfold increase on the number of people who were diagnosed just a few years ago.
The course of MS is unpredictable and its presentation varies from person to person. People have to adjust to the diagnosis and the lack of certainty about the prognosis. As has been said, there is a common presumption that people will be in a wheelchair, but only one sufferer in four actually is.
What has struck me as well as the need for a greater understanding of the illness is the context in which the motion is set, which is that of a postcode lottery. I went to the MS Society website, to which many individuals have contributed, and was struck by a contribution from somebody who posted to one of the forums. Having used the phrase “postcode lottery” in the title, the person said that they thought that that was a contentious title to use, but went on:
“When I read of people having a great consultant or being diagnosed within a year or two of onset (note I said year—I am reasonable here not expecting a month or two ...) I really honestly do feel really pleased that they have been looked after well. But my next thought is usually I bet you don’t live anywhere near me!”
The term “postcode lottery” is a crude one, but I would be interested to hear the minister comment on the extent to which the services that are available across Scotland are equal, and on the areas in which more requires to be done. NHS Greater Glasgow and Clyde has been quite candid about the growing incidence of diagnoses of multiple sclerosis, but it seems that other boards are slightly more circumspect about confirming the incidence in their regions. It slightly concerns me that, because of that, we might be underestimating the focus and attention that are required to ensure that people have equality of access.
17:21
I, too, congratulate Liam McArthur on securing this important debate. He talked about trying to shift the blame for MS on to the Vikings, but if we look abroad to other countries, it becomes the Scottish disease and not the Viking disease, so it seems that the buck is being passed regardless.
MS is a devastating disease, or it can be a devastating disease. Many people who have MS go through life with it as something of an inconvenience rather than as an illness to be dealt with, but for others it can be truly devastating and life threatening.
As has been said, MS is in many cases diagnosed when the person is young, which means that many people who are affected have young families who have to deal with the effects. It can have a huge impact on people’s children, who become carers, and people have to live with a disease for which they cannot follow a route. MS takes many different forms and it is difficult to know what to expect. We therefore need specialist services; we need MS nurses and specialist consultants, and MS physiotherapy is really important for mobility and the like.
We also need specialist MS social workers, because they can deal with the whole person. They can put people who have MS in touch with the specialist services that they need when they need them, but they can also deal with the wider problems that affect sufferers’ lives and their families. We should not underestimate the importance of that. They also need to be able to point people to advice and assistance when they require it. As we heard, the disease takes many forms, so it is difficult to know what to expect. People do not need all the information initially; they might just need some information as their illness progresses. Indeed, it might not progress.
I will take a couple of minutes to talk about volunteers, which Jackie Baillie mentioned. I am aware of many people who have MS who have become advocates for others who have MS and who fight for better services. Christine Stewart in the Western Isles is one such person and she succeeded in getting an MS nurse for the islands, but there are many other people who have MS who use their time to fight for better services and to support others who are newly diagnosed. As part of the debate, we should pay tribute to them and what they do for others.
I will leave it at that, Presiding Officer, because many of my points have been covered. However, I think that they were important points to make.
Thank you, Ms Grant.
I call on the minister to wind up the debate. Mr Matheson, you have 38—I am sorry. You do not have 38 minutes. You have seven minutes.
17:29
You had them worried there, Presiding Officer.
Like others, I congratulate Liam McArthur on securing the debate, on the constructive manner in which he has taken it forward and on his stout defence of the Vikings with regard to their role or otherwise in the incidence of MS in Orkney.
Often, one of the most effective ways to get across the impact that a condition such as MS can have on someone’s life is through speaking about our personal experience of it. This was not the first time that George Adam has spoken about his and his wife Stacey’s experience of MS and how it has affected their lives. His words give us an insight into the challenges, both physical and emotional, that MS poses for individuals and couples. I should say that, knowing Stacey, I wish George Adam well when he gets home tonight.
I am sure that everyone would recognise that it is in all our interests to try to ensure that individuals who are diagnosed with MS can access the best possible care and support.
A number of members referred to the neurological standards that were implemented two years ago. We see them as being one of the key measures that can assist us in trying to drive forward greater consistency and equity in the way in which services are delivered for individuals with MS, and to ensure that patients receive care that is safe, effective and person-centred. Although the standards are generic, there are three that are specific to MS: access to specialist services, diagnosis, and on-going management.
To take forward the standards, we provided boards with about £1.2 million over two years to develop neurological improvement networks. Several members have referred to the peer review papers that were published last year, reflecting on the progress that had been made by some boards and comparing that with the progress that had been made in other boards. I accept that they have highlighted some areas in which there continue to be deficiencies, but they have also highlighted areas in which there has been progress on the part of some boards.
In order to continue the momentum in that work, we established a national neurological advisory group, which is a partnership between the third sector and NHS Scotland. It is a collaborative group that helps to oversee and support NHS boards in continuing to develop improvement plans in their areas. The group is made up of individuals who come from neurology-focused charities, clinicians, Scottish Government officials and various other people. Its role is to consider what boards are doing and to support them to make further progress on a collaborative basis, so that further improvement can be supported.
Members might be aware that the national neurological advisory group has developed a work plan and has identified as one of its initial work streams the need to ensure consistency and equity of access to MS services across Scotland. I expect it to work in partnership with NHS boards to take the issue further.
Rhoda Grant and a couple of other members touched on access to specialist nurses. For a number of years, there has been an ever-increasing number of specialist nurses in NHS Scotland for a number of different conditions. MS nurses can play an important role in helping individuals to receive the best possible care, and in signposting them to services of which they are aware and which can be used by MS patients.
MS nurses can also bridge the gap between patients and consultants, which can ensure that people get the right type of advice and support. That type of specialist support is recognised in the neurological standards. It is clear that specialist nurses have an important role to play in achieving the neurological standards. I expect NHS boards across the country to reflect on that and on how they work on their local plans for improving neurological services.
We must recognise that, although specialist nurses have a crucial role to play, other members of the multidisciplinary team—the medical staff, the allied health professional staff, the physiotherapists, the occupational therapists and the speech therapists—also have crucial roles in supporting people with MS. In planning services, NHS boards need to ensure that they have capacity to support individual patients and their needs.
When we are improving services, it is important that we ensure that we hear the voices of individuals who have MS or who suffer from other neurological conditions. It is important to allow them to play a role in shaping the way in which services are improved at local level. That is why we provided funding to the Neurological Alliance of Scotland’s voices programme, which has been specifically designed to support individuals to engage with health boards and other service providers and to influence the shape of specific services. A number of health boards have made use of that service. I am not sure whether NHS Highland is one of them, but it is a service that we have funded and it is available for individual health boards.
I will turn briefly to a couple of other issues that members have raised. The motion rightly makes it clear that Scotland has one of the highest incidences of MS in the world. Better data and better research will be critical to improving our understanding of why that is the case. There is often speculation about MS being linked to vitamin D deficiency, but there is, at present, no definitive evidence on that. However, we continue to monitor the emerging evidence in that area closely and if there is a recommendation that vitamin D provision needs to change, we will not hesitate to respond.
We have provided pump-prime funding for the establishment of the Scottish MS register, which aims to collect information on all people in Scotland who have a new diagnosis of MS. Its purpose is to ensure a better understanding of the data, which will assist us in building up more information and help to drive forward further service improvements in Scotland overall.
Another area that has been highlighted is the importance of research. The chief scientist office is supporting a number of areas of research. Liam McArthur mentioned the high incidence of MS in Orkney. The CSO is providing some £240,000 to the Orkney complex disease study. The primary objective of the project is to identify key genetic markers, some of which are relevant to MS. We are also providing funding to multiple sclerosis prevalence studies that are being carried out in Orkney, Shetland and Aberdeen. It is hoped that the results of those studies will, in the long term, improve our understanding of MS.
Members have raised a number of important issues. The need to continue to improve services for those with MS and other neurological conditions is often raised in the chamber. They can be assured that the Government is committed to doing that, where it can, and to working with others who can help us to drive improvement.
Meeting closed at 17:33.