The final item of business today is a members’ business debate on motion S4M-12808, in the name of George Adam, on my life, my MS.
Motion debated,
That the Parliament welcomes MS Society Scotland’s campaign during MS Awareness Week, which runs from 27 April to 3 May 2015; notes that the campaign will look at all the issues that influence the lives of people living with MS, how the diagnosis affects them and their families and in what way they receive ongoing treatment, care and support, and recognises that the campaign highlights issues of financial security and explores the whole person and the many challenges that they deal with while living with multiple sclerosis.
17:04
I thank you, Presiding Officer, for your on-going support for the multiple sclerosis community. There has been much talk about me being an MS champion; before I was in the Scottish Parliament, you were that champion.
Once again, I thank everyone for their on-going support during MS awareness week. As of this moment, Stacey is very happy with the way things are going. However, she wants me to remind everyone that there are still plenty of badges and there is still plenty of information at the stall outside the chamber, and she asks, “Could you all go there as soon as possible?”
Last year I welcomed everyone to Stacey’s annual MS debate. We all know that I would be kidding myself on to say other than that she is the real reason why I am here, talking about the issue today. Once again, she is watching from her balcony position in the gallery, ensuring that I stay on message and get all the correct points across. I mentioned last year that it felt like a scene from “Romeo and Juliet” as I spoke. Because this year’s motion’s theme is my life, my MS, I want to add that ours is not a tale of woe, like that of Juliet and her Romeo—it is amazing where O grade English gets you. [Laughter.] Although multiple sclerosis is part of our lives, it has not limited the ambitions or goals of either of us. It has made things more difficult, and when we organise a night out it is like organising the D-day landings in Normandy, but MS has not stopped us doing or achieving anything that we have wanted to do.
I recently attended the MS Society Scotland “Living with MS” conference in Glasgow. It was attended by more than 200 people who are living with MS. Many of the people in the MS community are very upbeat and refuse to allow this horrible debilitating disease to beat them. I chaired the whole conference and did not hear anyone really complain. That outlook on life is to be commended, although it also causes us problems as a campaigning community; it stops us being a major part of the on-going political dialogue on the health portfolio, so we need to moan a wee bit more.
This MS awareness week is so important because it gives us the opportunity to say what is happening within the community. We need to ensure that the estimated 11,000 people in Scotland who have MS have their voices heard. More women than men develop MS—the ratio is approximately 3:1.
I need to mention some facts of which people who live with MS are aware. Multiple sclerosis is a progressive neurodegenerative condition that affects the brain and central nervous system. It is an auto-immune disease, and there is currently no cure. Scotland has one of the highest prevalence rates of MS in the world: it affects about one person in every 500. There are three types of MS: relapsing remitting MS, primary progressive MS and secondary progressive MS. To refer to my situation, Stacey had relapsing remitting MS when we first met, but it has now moved on to become a more progressive form—secondary progressive MS. That is how it happens with MS. Everyone is different, and all their conditions are different.
During the debate at the “Living with MS” conference, we listened to one of the research and communications officers for the MS Society, Emily Burns. I felt sorry for her. She said that MS might be genetic, or it might be because of lack of sun—it is a fact that the further north we go from the equator, the higher the incidence of MS is—but we do not quite know. That is one of the problems. It is frustrating for families who are dealing with MS, because they do not know—it is not something that we can just find a cure for.
At this stage, I will highlight some of the challenges that currently affect people with MS. One of the biggest issues is welfare; we all know about the current welfare reforms. On the negative side, many people with multiple sclerosis have difficulty trying to get work, and many would like to work but cannot. Nine times out of 10, people are diagnosed as having MS when they are between the ages of 20 and 40, which is a major part of their working lives.
When it comes to dealing with situations involving the disability living allowance and the personal independence payment, the 20m rule does not help, for a start. Although a person who has MS may be able to walk 20m, they might also then spend the rest of the day in bed because of the fatigue that has been caused by doing that. Also, many of the so-called experts who do assessments do not understand MS and many of the things that can happen with it. The pressure of going through such a system will itself possibly provoke an MS attack.
On the theme of my life, my MS, the MS Society has a story from a woman called Audrey Barnett, who has previously given evidence to Parliament. She is from Inverness and was diagnosed with MS in 1995. She said:
“I didn’t choose to have MS, but my experience of the benefits system made me feel like a scrounger.”
She continued:
“I had worked for the Department of Work and Pensions (DWP) for 16 years before being accepted for medical retirement”.
She then ended up having to fight for the very basic benefits.
There are also good news stories of people who have employers with whom they work very well. Ewen Marshall from West Lothian was diagnosed with MS in 2006. He says:
“I made the decision to tell my manager straight away and her reaction was fantastic. I’ve even been promoted to Senior Server Engineer. Nothing’s a problem with my employer as long as I let them know what’s happening. Out of all my symptoms fatigue is my biggest enemy at work. ... My condition is getting worse but I have a good support package in place at work.”
That shows that employers can ensure that people with MS can still work.
One of the many on-going issues that we have is access to medicine. Last year, I brought up the fact that it is not just a case of getting the drugs. Over the past year, all three of the drugs for MS that have been submitted to the Scottish Medicines Consortium have been passed. That is great, but there are still many other drugs—such as Fampyra, which I asked the Cabinet Secretary for Health, Wellbeing and Sport about today—that have not been submitted to the SMC, although they could make a massive difference to the lives of people who are dealing with MS. In the case of Fampyra, the drug could make the difference between someone’s being able to walk and their not being able to walk.
MS is part of my life, but it does not define me. I love my wife, Stacey, and I would not have achieved as much if I had not had her love, support and guidance over the years. Yes—we live with MS, but it does not control our lives. It is part of our lives, but it does not define us as a couple. We will continue to deal with whatever the condition throws up. Together as a community, people who live with MS will continue to fight everything that comes our way.
It is likely that we will need to extend the debate because so many members wish to speak. I intend to allow everybody four minutes, which I hope will enable me to get everybody in, but members who do not want to take four minutes should not feel obliged to do so.
17:11
Presiding Officer, I shall heed your words and do my best. I am delighted to take part in the debate.
When we talk about conditions such as MS, we sometimes think of their just being generic diseases and we forget that we are talking about individual people. MS is a disease that affects a person—that person deserves an individual, person-centred approach to their own life. When George Adam talks about Stacey as he does—the young romantic that he is trying to be—it reminds me that, although we all face challenges, challenges present opportunities.
The people that I know who have MS have a can-do attitude. The problem is not that they do not want to get on and be part of the world of work—they do—but that, as a society and as people with little or no understanding of, and lack of awareness of the condition, we put up barriers. George Adam talked about employers; employers need to be educated. If they would only give people who have MS the opportunity to get into work, they would see the benefits of their doing so. A person with a disability or an illness who remains in work benefits their employer probably more than any other person who works for them at any given time because that person appreciates being part of that work and that community.
But what have we done? We have put up barriers. The access to work grant that is provided by the United Kingdom Government is a little-known benefit. George Adam is also right to say that the people who assess those who require assistance, whether in relation to work or for Motability services, often look at a tick-list and not at the individual; they do not take a person-centred approach. My ask—and, I think, the ask of Parliament—is that we treat people with MS as individuals, accepting their individual requirements and needs.
17:14
I congratulate George Adam on securing this debate to mark MS awareness week, and I thank him and his wife Stacey for their on-going commitment and dedication to the work on the disease, which has such an impact on Scotland. I, too, have a family connection with MS and I know the impact that the condition has on partners, children and parents.
As we know, Scotland has one of the highest incidences of multiple sclerosis anywhere in the world. Many people in this country are all too aware of the condition and so many families are affected by it, but because we still understand so little about the condition, we cannot properly explain why that is so.
The research shows that our neighbours across the Atlantic in Canada appear to have a similar pattern of MS, as do Sweden and Denmark, while countries with warmer climates closer to the equator have extremely low levels. However, geography is not an explanation in itself, with certain ethnic groups having a lower prevalence and MS being considerably more common among women. We cannot say for sure whether the explanation is genetics or climate. Perhaps one day we will solve the mystery.
There are grounds for optimism, as we look ahead, on how we tackle MS. I understand from the excellent work of the MS Society that there are a number of new potential treatments that are not yet available but which are in the pipeline. They were raised during health, wellbeing and sport questions in the chamber earlier. Those treatments are in no small part down to the extensive campaigning and fundraising that the MS Society does to help to fund research. Just this week, we learned that scientists in Edinburgh are to receive £2 million for research into stem cells with a view to understanding how MS develops. It is right that, this week, we acknowledge the extraordinary work of the MS Society.
With the number of neurologists and provision of magnetic resonance imaging machines growing considerably, we have made significant progress globally in treating and supporting those with MS in recent years. I believe that we can look to the future with some confidence in relation to how we understand the disease, how we treat and support the growing number of people who live with MS, fulfilling their lives and, ultimately, our ambition to cure MS.
17:17
I begin by adding my thanks to George Adam for lodging his motion. All of us in the chamber are aware of his personal circumstances, and we know of his commitment to raising awareness of multiple sclerosis and promoting the best care and treatment for all those whose lives are affected by it.
Scotland has one of the highest incidences of MS in the world, with an estimated 11,000 people in our country diagnosed with the condition. It is one of an increasing number of known autoimmune conditions. We know that presently there is no cure, as with many neurological diseases, but it is a credit to the MS Society at a UK level that, in the past 60 years, more than £150 million has been raised to research the condition, with the final goal being to find a cure.
It is interesting to note that MS is more prevalent in women than in men, with a ratio of 3:1. Needless to say, I will not be taking part in the great women’s 10K run in Glasgow in two weeks’ time, but that women-only fundraising event shows the determination of women across Scotland to show their support for finding a cure for MS, and I wish the 10,000 participants the best of luck and happy running.
The MS Society in Scotland has branches across the country and, in the region that I represent, the well-used Stuart resource centre in Aberdeen. That facility provides help to and support for people with MS and their families throughout the city and Aberdeenshire through a wide range of activities from fundraising to social events. Last year’s cake break and open day at the centre was a good example of communities coming together on a social basis to raise awareness of the condition. It is important that as many people as possible are made aware that MS can and does affect many lives.
To give a personal perspective, I add that, like George Adam and Jenny Marra, I too have a close family member who faces the challenges of living with MS, although fortunately my relative’s condition is one of only fairly minor incapacity at the present time. I would not like to be critical of national health service care, but the person I am referring to was diagnosed with MS nearly 10 years ago and, unfortunately, as far as I am aware they have not been seen by an MS clinical nurse since diagnosis, which makes me slightly sceptical of the claim that an MS patient is reviewed every 12 months. I am unclear about who triggers the contact with the MS nurse. Is it the patient or is it the general practitioner? I would be grateful if the minister could enlighten me so that I can follow that up.
It is encouraging that, according to the most recent data, which is from 2013, the number of people who have been newly diagnosed with MS and who have had contact with an MS specialist nurse went up by 11 per cent on the previous year, but it is still the case that only 57 per cent of newly diagnosed patients have had contact with a specialist nurse. The situation is not yet good enough, and it appears to be variable across the country.
The theme of this year’s MS campaign focuses on the right of people with MS to continue in education and employment. The family member whom I mentioned had retired from full-time work by the time he was diagnosed with MS, although he may have had some unrecognised warning symptoms many years before, but it is worth reiterating that most people who are diagnosed fall within the 20-to-40 age bracket, when most people are either in further education or working. It is worrying that only a quarter of people with MS are in employment, compared with three quarters of the UK population. Indeed, approximately 75 per cent of people with MS feel that their working life and career have been harmed by their diagnosis. I am also saddened to know that MS sufferers can end up unemployed within the first 10 years after diagnosis.
That has the obvious effect of leading to not just understandable depression but financial insecurity. People with the condition can be unable to work as a result of symptoms such as intense pain, extreme fatigue, mobility problems and, in the worst cases, factors such as loss of vision and incontinence. Therefore, MS can present a huge burden, not only to the individual but to his or her family.
The MS Society Scotland does a huge amount of work to raise awareness of multiple sclerosis, and this week of focus on the condition should stand out as a sign that it cannot and should not be ignored.
I again thank George Adam for securing the debate.
17:21
I join other members in congratulating George Adam on again securing a debate on a cause to which he has shown great dedication over the years. It is also an issue on which he has provided considerable insight from personal experience; on occasion, those insights might have gone beyond what his wife Stacey was comfortable sanctioning.
The theme of this year’s campaign—my life, my MS—allows us to reflect on a range of issues that influence the lives of people who live with MS, including how they and their families and friends are impacted by a diagnosis and how they receive on-going care and support. That is very pertinent, because from all I have learned about MS, including what I learned in preparing for my members’ business debate on the subject two years ago, it strikes me—as it has struck other members—that it is a very individual disease.
As I observed back then, the causes are as yet unclear—I will come back to that shortly—but the symptoms, too, are hard to pin down. They can include intense pain, mobility and co-ordination problems, severe depression, fatigue, incontinence and loss of vision, as Nanette Milne said. For some people, there are periods of relapse and remission. For others, the pattern is one of progressive deterioration. That variability can make life more complicated for sufferers and those around them. People often assume that sufferers are 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. I suspect that that makes the task of supporting those who have been diagnosed with MS less than straightforward.
People who have been diagnosed quite naturally want to know what to expect next. As Angela Monteith—a constituent of mine who has been helping fellow sufferers for many years both directly and through her work with the MS Society—explained to me, answering that question is not easy. The disease is never the same for everyone and, post-diagnosis, it is almost impossible to predict the future.
As I pointed out in my debate in 2013, the support that is available is patchy. Clinical standards for neurological conditions including MS were published in 2009, but those standards are not always met. There are certainly examples of excellent and innovative practice, but such practice is not being applied as widely as we would wish it to be. I am pleased to say that NHS Orkney is meeting the MS standard for service provision. Partnership working involving physios, speech therapists, doctors and occupational therapists, as well as the existence of local groups and charities that represent people with MS and other neurological conditions, has made that possible.
In an island community, of course, MS sufferers and their families face some unique additional problems. Although regular get-togethers are held, they can be hard to attend for people who live on the smaller outer islands, and the sense of isolation can often exacerbate other problems that they might be facing. The cost of travelling to Aberdeen for neurological check-ups is high, although the increasing use of telehealth is helping. The local MS nurse in Orkney supports patients during teleconsultations with the Aberdeen-based neurologist. That saves money and, critically, reduces the physical and emotional strain of having to travel long distances.
Of course, as if those challenges were not enough, Orkney and Shetland also have the highest incidence of MS not just in Scotland but anywhere in the world. Given that the reasons for that situation are unclear, I very much welcome the research that is being undertaken to uncover some of the answers. Jenny Marra has already mentioned the welcome recent announcement of £2 million for stem cell research, and Dr Jim Wilson, himself an Orcadian, continues his groundbreaking work at the University of Edinburgh.
I was also interested to hear recently about the research that is being done by PhD student Emily Weiss, who, working alongside Dr Wilson, is trying to establish how heritable MS is, the role of genetics in determining risk, and the environmental risks, including exposure to ultraviolet radiation from sunlight. With regard to genetics, a good deal of work has already been done in gathering data through the Northern Isles multiple sclerosis study and the Orkney complex disease study, and it will be fascinating to see what Ms Weiss and her colleagues are able to extract from that material.
Likewise, the Viking health study in Shetland has pulled together good base data that will hopefully better inform our understanding of the impact of exposure to sunlight on vitamin D deficiency and therefore the risk of MS. As firm conclusions might be some way off, and ways of mitigating risks further away still, we need in the meantime to get better at understanding and catering for the specific needs of MS sufferers and their families.
Once again, I congratulate George Adam on keeping the issue at the top of our minds and understanding. I thank all those in Orkney and across Scotland who help to support those with MS to ensure that, like Stacey Adam, they are not defined by their condition.
17:26
I, too, thank George Adam for securing the debate. In a previous debate on this matter, I mentioned Lawrie Elder, my boss and mentor at NCR in Dundee, who had this illness and whose strength and courage guide me still. The debate allows us to look once again at the issues that affect people with MS—this kind of recurrent look is important—as well as the impact on them and their families. That, too, is important; I certainly know the impact—not all bad, I have to say—that the condition had on Lawrie Elder’s family. Just as important, the debate also ensures that we continually review the care and support that we give people with MS and carers.
MS affects around one in 600 people, and more than 100,000 people in the UK and an estimated 10,000 in Scotland have it. I eschew the often expressed notion that it is a disability; it is not—it is an illness. MS diagnoses are usually made between the ages of 20 and 40, which means that it affects people relatively early in life, and roughly three times more women than men have it. The MS Society recently unveiled its strategy for 2015 to 2019, and its very appropriate mission statement is:
“To enable everyone affected by MS to live life to their full potential and secure the care and support they need, until we ultimately find a cure.”
That cure will certainly be found.
The MS Society has laid out seven key goals in its strategy, and I want to focus on the first three. On the first, which relates to effective treatments, the society aims to double its funding for research over the next five years. MSPs and this Parliament have to, need to, must influence and pressurise pharmaceutical companies to improve access to existing treatments, and negotiations must be pursued with the Scottish Medicines Consortium to ensure that such medicines can be accessed and that they are made as available as possible. To some, this accessibility with regard to pricing is something of a black art, and it is time that we shone a light on it. The MS Society is also rightly pushing for large-scale rolling clinical trials, and we also need a small-scale trial of vitamin D as a potential disease-modifying treatment. Internationalisation and cross-fertilisation of ideas and information will be a keystone of the bridge leading to the ultimate effective treatment.
The second goal in the MS Society strategy that I want to focus on is responsive care and support. It is essential that there is access to person-centred and co-ordinated treatment that recognises people with MS as equal partners. In 2010, the Scottish Government unveiled the long-term conditions collaborative with the aim of improving pathways for those suffering with MS, encouraging integrated care and delivering care closer to home.
The National Institute for Health and Care Excellence also published its guide to the management of MS in primary and secondary care, which makes recommendations that support an integrated support approach, but also has a focus on access to local services, in particular group and carer support. Family love and care are, of course, the foundation of all of that. I know that Doris Elder and the boys contributed that greatly to Lawrie, particularly in his later life.
Earlier this week, we discussed the future of work programmes in Scotland. In that debate, I argued for all work programmes to be devolved to Scotland to allow the integrated approach that everyone agrees is essential. In its submission to the Welfare Reform Committee in 2013, the MS Society stated that around 60 per cent of work capability assessment centres were inaccessible; that 80 per cent felt that their health suffered because of their work capability assessment; and that 69 per cent of those who were questioned were not offered any help to get them into work. We need to bring all work programmes to Scotland to ensure that, among others, MS sufferers in Scotland have the best accessibility to employment.
Finally, on preventing MS, I believe from what I have read and from following the issue that we are much closer to understanding what causes MS and that the resolution comes closer each day. We know that it is caused by a combination of genetic and environmental factors, but we need to accelerate the research on what causes it. That includes the provision of time and resource to run prevention trials.
Let us ensure that all of us—politicians in particular—play our part in securing what is in the MS Society’s mission statement, which is
“to enable everyone affected by MS to live life to their full potential and secure the care and support they need”.
Due to the number of members who wish to speak in the debate, I am minded to accept a motion under rule 8.14.3, to extend the debate by up to 30 minutes.
Motion moved,
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[George Adam.]
Motion agreed to.
17:32
I congratulate George Adam on introducing once again a debate on this important subject and on championing the cause, following in the footsteps of the Presiding Officer. I also welcome the MS Society to the Parliament this week. It has been my privilege and, I am sure, the privilege of many members to talk to it, read its materials and learn from it.
It is a feature of neurological conditions that many of them have great champions and, indeed, providers. I am patron of the MS therapy centre in Leith, which provides highly valued support services and innovative therapies to people in Edinburgh and beyond. I pay tribute to the superb manager and the dedicated volunteers who work in the centre.
We should welcome in particular the MS Society’s award of £2 million to the Edinburgh centre for MS research for work on primary progressive MS, I think. We have already heard about that from Jenny Marra. The particular focus of that centre is on stem cells and the hope of building a clearer picture of how MS develops and a better method for modelling the condition and finding effective treatments. I think that we all welcome that announcement this week.
My only complaint about the MS Society is that, for some reason, I did not receive its thorough briefing for the debate. I see it on the desk of my colleague Lewis Macdonald, who is beside me. However, I have read the MS Society’s 2015 to 2019 strategy; in fact, it presented on that at the last but one meeting of the cross-party group on MS. Like Chic Brodie, I will not refer to the seven priorities in their totality, but will merely mention two or three.
I was particularly struck by the emphasis on responsive care and support
“that recognises people with MS as equal partners in their care”.
That is a general principle that we have tried to develop in health over the past few years. Obviously, it is particularly important for people with long-term conditions. Again, the voluntary sector is very much a champion of that approach to care.
The first priority that the society mentioned was effective treatments. Again, that very much overlaps with the society’s treat me right campaign last year, which was the subject of the debate at this time last year. That was partly about better access to medicines, but it was also about access to a multidisciplinary team and a specialist. Since last year’s debate, we have heard the welcome announcement from the Scottish Government of a fund for specialist nurses, so I think that it would be appropriate to express the wish that some of that money should go to nurse specialists for MS. We know from talking to people with neurological and, indeed, other conditions that nurse specialists are greatly valued. That is why Gordon Aikman in his great campaigning work has emphasised the importance of nurse specialists for motor neuron disease.
Of course, having access to specialists and a regular review every 12 months was also part of last year’s campaign and is one of many neurological standards. Having clinical standards for neurology was a great advance, but when the Neurological Alliance did a report on that—admittedly, it was two or three years ago—it highlighted the postcode lottery of care when it came to the implementation of those standards. There is therefore still work to be done on that and on social care, because support there is also variable. The effective integration of health and social care is obviously going to be crucial for people with MS and other neurological conditions. In fact, several issues specific to neurology were raised in the recent debate on health and social care integration.
I have two final points. First, let us make sure that we involve the voluntary sector effectively in integration and, secondly, let us make sure that, while looking forward to guidance on localism, we have a degree of central direction so that we get rid of the postcode lottery of care, whether in health or social care.
17:36
I, too, congratulate George Adam on bringing this motion to the chamber for debate. I have enjoyed working with him as deputy convener of the cross-party group in the Scottish Parliament on MS, which continues to bring important issues to the attention of the Parliament, as well as less weighty matters occasionally.
Multiple sclerosis impacts on the everyday lives of people living with the condition to different degrees and in different ways. I have friends with MS who have maintained a high quality of life and mobility for years after diagnosis; equally, I know others for whom their physical deterioration has been both rapid and painful.
MS also varies from area to area. Scotland has one of the highest rates of prevalence in the world, and Aberdeen and the north-east have among the highest rates in Scotland. Out of 451 new cases in mainland health board areas in 2013, 64 were recorded in Grampian, which is significantly more than Grampian’s population share suggests the area should have. The incidence of MS is even higher in Orkney. As Liam McArthur said, patients from the northern isles, too, access specialised medical services in Aberdeen, either in person or by videolink.
There are currently some 15 whole-time equivalent MS nurses in Scotland for some 11,000 people with the condition, with three whole-time equivalent posts in Grampian and the northern isles. Even a modest increase in those numbers would clearly go a long way. The MS Trust is campaigning to increase the number of specialist MS nurses across the UK and the MS Society has called on the Scottish Government to allocate part of the funds that were announced in January for specialist nursing and care to increase the number of specialist MS nurses, who make such a difference to patients’ lives. I hope that the minister will be able to respond positively to that call, which has been repeated this evening by Malcolm Chisholm.
Of course, support for people with MS is not just down to the NHS, because local councils and patients’ own organisations also play a part. I heard earlier today from a constituent who was enthused by the excellent keep-fit class at the Stuart resource centre, which Nanette Milne mentioned, which is one of many activities and events that are organised by the Aberdeen branch of the MS Society. It has very effective outreach activities; for example, there was an MS awareness exhibition at Aberdeen royal infirmary recently and a living well with MS event in Banchory.
Keep fit has been taken to a whole new level by sport and exercise students at the Robert Gordon University in Aberdeen, who have organised bespoke exercise classes, designed in collaboration with the local branch of the MS Society. The students not only designed the course but are providing support to the people who are taking part. In addition, Sue Ryder Care has just launched the 5Rs programme in Aberdeen with support from the Big Lottery Fund. The 5Rs are relaxation, rebuilding, re-energising, reintegrating and regenerating, all of which are very relevant to people with MS. Along with relaxing activities, the programme offers some very practical advice.
A lot is going on at local level, but most important of all—as a number of members have mentioned—is the work that is being done to understand what causes MS and which treatments can make the biggest difference to patients’ lives. The MS Society’s smart trials of different neurological drugs are part of that, as are the risk-sharing schemes that have been undertaken by the National Institute for Health and Care Excellence at a UK level.
When the minister responds to the debate, I am sure that he will address the issue of support for MS nurses to help existing patients. I ask him also to tell us how the Government envisages Scotland playing our part in the quest for better treatments for MS in the future.
17:40
I, too, congratulate George Adam on all his work on MS and on framing a very practical motion. I very much appreciate its wording. Dennis Robertson told us that it is about people and the motion is on “my life my MS”, so it is very much concerned with the individual and, as the motion goes on to say, “explores the whole person”.
The campaign will look at all the issues that influence the lives of people with MS. Those are the same issues that influence all of us, but with an added challenge—a phrase that we have heard already. The issues are not simply about health; they are about housing and the difficulties with aids and adaptations, transport, increasing problems as people’s mobility alters, and education.
Chic Brodie mentioned employment and there is certainly a long way to go with regard to education on the treatment of people with MS. I assisted a constituent whose employer thought that it was entirely unreasonable to make a reasonable adjustment—and, I have to say, the adjustment was extremely modest. There is some way to go with that.
My colleague Liam McArthur talked about isolation, which is another factor that can have an impact—his constituency is a clear example.
I had a look online this morning for information about MS and, of course—as with everything—there is a wide range of issues. A lot of information online is about fundraising and the commendable activities that take place around the country and around the world. There is also a lot of coverage of the Edinburgh centre for multiple sclerosis research, which I will not repeat. However, I was delighted when I looked at the centre’s website to find that the management board is made up of independent MS research scientists and people who are affected by MS. Again, it is terribly important that we keep it—to use the term that has been used previously—person centred and that this is not something that is done to people; it is something in which people have an active involvement.
In last year’s debate, I mentioned a young woman and the challenge around securing a drug. I am delighted to say that that matter is resolved. That is not just to the individual’s benefit; it is to the benefit of their family and, in particular, to their wee boy.
There is an understandable clamour for a cure. There is a clamour for drugs to ameliorate the effects of MS. Vitamin D is mentioned not just in relation to MS; it is mentioned in relation to other matters as well.
I am always impressed by the energy I encounter when I meet people who are associated with MS. In the past year, I have visited Kirkwall, Oban and Lochgilphead and I am a regular at the Inverness centre. The energy of the people who assist and the energy of the people who have the illness are commendable.
We know that the campaign is the latest in a series. Again, it talks about caring and support and we have to ask ourselves, “Who is going to do the caring and who is going to do the supporting?” There is a pivotal role for this establishment in that. Politics is about priorities and if the priority is replacing weapons of mass destruction ahead of putting that funding to more constructive use for humanity, the financial challenges will not be restricted to welfare reform, the austerity programme and the difficulties—as George Adam highlighted—around the 20m walk rule.
The hallmark for me of people who are involved in MS is their stoicism. They are not going to give in to it. I think that Chic Brodie said that there is a light at the end of the tunnel and I am sure that, with proper funding for research, that tunnel will get shorter. I hope that that happens sooner rather than later.
17:44
I, too, thank George Adam for submitting the motion for debate and for his chairmanship of the cross-party group.
It does not seem like a year since our last debate on this subject, but I am sure that, for the 600 or so people newly diagnosed with MS since this time last year, the last 12 months have felt more like a lifetime. That is how many people will have had this life-changing diagnosis since we last debated MS. That is 600 people and 600 families whose lives have changed for ever.
It is, of course, easy to overdramatise the impact of a certain condition in order to make a political or an emotional point, but I think that MS must be one of the most frustrating and exasperating of conditions. It is the variability and the sudden attacks after periods of being well, leading to periods away from work or ending a career altogether, that leave people floored through fatigue and mental as well as physical exhaustion.
For those with progressive MS, the downward spiral, the lack of respite from it and the absence of effective drugs to help or cure are almost as bad as the illness itself. I therefore welcome the additional £2 million that is going to the Edinburgh centre for MS research, which has been mentioned by so many people.
Like George Adam’s, my interest comes from my own family and the experiences of sufferers in my close circle of friends. Fit, able, sociable, working men and women—one a professional footballer, another one my brother, another my auntie—have all been hit by this very debilitating illness. All were left very much to their own devices to work their way through a system in which information that should have been easily available was not.
Last year at the MS parliamentary reception, I heard Elizabeth Quigley very eloquently and powerfully speak about MS being shrouded in secrets. She spoke of patients always having to go in search of help and always having to ask people where to get advice, instead of being offered it up front; about not being made aware of new drugs and treatments, but having to plead with health boards to get them; and of being unaware of how councils and voluntary organisations can help, until somehow, months or even years later, through some obscure, circuitous route, that information is passed on—and often that information is passed on far too late.
Elizabeth’s speech that night was absolutely spot-on. I could see that it rang a bell with people in the room. Certainly it struck a chord with my family members.
In an information-filled age, it often appears that the information that we need is the hardest to come by. Patients need the help. They need to know what services are available. They need to know that there are new developments. They need their MS nurse—if, indeed, they have one and if they see them—to advise them of new developments. They need consultants to tell them what help they can get, and not just ask them at their annual assessment—if indeed they get one—the same question as last year, which we could probably paraphrase as, “How have you been?” “I am okay.” “Okay, see you next year.”
MS patients need to know that places such as Leuchie house are available for respite and care, and how to access funding to go there for that care. I asked five long-suffering MS patients I know whether they had heard of Leuchie house, and none of them had. None of them had, yet all of them could have been benefiting from the array of services that it provides. Those are people with good family support around them. I have no idea how people with little family or social support cope and find out such things. Those are very important matters for people who are suffering.
I also want to mention briefly the cost of items to assist people with MS and other disabilities. Ramps for wheelchairs cost £100. A decent wheelchair costs £1,500. An automated roof box to carry the chair is a few thousand pounds. The fitting of hand controls in a car is another few hundred quid. Then there are shower seats and other adaptations—the expensive list goes on and on. All of those are additional pressures on people who often, like my brother and two friends, have had to give up their work or go on reduced hours because of their condition.
Finally, Presiding Officer, on a brighter note, my brother—an MS sufferer for 20 years—gets married next month. I wish him and his wife-to-be, Sharron, well as they battle MS together.
Thank you. I am sure that we all wish your brother and his bride-to-be very well indeed.
17:49
I begin by joining with everyone in thanking George Adam for lodging the motion and bringing it to the chamber for debate. I thank also the members who took part in the debate.
I also take the opportunity to congratulate the MS Society on its work. Members have spoken about much of the good work that takes place on the ground. From my own engagement with the Cumbernauld and district branch of the MS Society, I know of the great work that it undertakes in supporting people locally in the community.
I also thank George Adam for all the work that he does in the Parliament to raise interest in and awareness of MS, and I acknowledge the work of others who have been mentioned.
We all know how highly people with MS value the practical and emotional support that the MS Society offers, and it is great that that support extends to the families and the carers. I am proud to say that the Scottish Government has a long and close working relationship with the MS Society. We share its view that everyone with a neurological condition such as MS, and their carers, should be able to live life to their full potential and secure the care and support that they need.
It can be devastating for someone to be told that they have a condition for which there is no cure, and individuals respond to that in different ways. We must recognise that the changes that matter most and which can make the most difference to people’s lives are not in the power of researchers and clinicians. It is important that someone who is living with a neurological condition is able to decide what support they need, when is to be delivered and by whom.
Personalised and integrated services for adults who are living with a neurological condition will be strengthened further by the implementation of the Social Care (Self-directed Support) (Scotland) Act 2013 and the Public Bodies (Joint Working) (Scotland) Act 2014. Accompanied by the right advice and information, self-directed support can play a crucial role in helping people who are living with a neurological condition to achieve better outcomes and support. To improve service outcomes for patients, service users, carers and their families, health boards and local authorities should work together alongside the third sector, which, as Malcolm Chisholm noted, has been crucial in the delivery of quality and sustainable care services.
There must be more consistency and fairness in the way in which people are charged for their care. We will consider very carefully what further action we can take to ensure the delivery of fairer care for the people of Scotland.
Some members spoke about the importance of research. Lewis Macdonald asked what role we can play as a country. The chief scientist’s office has given more than £644,000 for MS research projects in Scotland in recent years. It also provides funding of £475,000 a year for the Scottish dementia and neurodegenerative disease research network. The role of the Anne Rowling clinic at the University of Edinburgh is to improve patients’ lives through research by translating laboratory discoveries into clinical trials and new therapies. As other members have mentioned, in recent days it was announced that the MS Society is investing a further £2 million in the Edinburgh centre for MS research. Further, the National Institute for Health Research’s health technology assessment grant was recently awarded to Dr Doreen McClurg at Glasgow Caledonian University. Her £750,000 project will study the effectiveness of abdominal massage for neurogenic bowel dysfunction in people with MS. We are always willing to see research projects coming forward, and I hope that Scotland can play its part in improving treatments for MS.
One of those treatments might involve new medicines. George Adam spoke about access to medicines. It is important to make clear the fact that all treatments for MS that have been submitted by pharmaceutical companies to the SMC have been recommended for use in NHS Scotland. Only two medicines for the treatment of MS that have been licensed have not been recommended for use—Sativex and fampridine, which Mr Adam referred to. That is because the pharmaceutical companies have not put forward a submission to the SMC. The Scottish Government has met both of the pharmaceutical companies, and we recognise that patients should not have to argue for access to the drugs on an individual basis. We hope that the companies will put forward a good-quality submission, at a fair price to the SMC, in order for patients in Scotland to be able to benefit from the medicines.
The minister is right with regard to the availability of medicines, and that seems to be one of the improvements that has been made over the past few years. However, as the MS Society made clear to me this afternoon, there appears to be a gap in relation to treatments for progressive MS. In his discussions with the SMC and others, could the minister try to accelerate some progress on that issue over the next couple of years?
I would answer that by going back to my fundamental point that all treatments for MS that have been submitted by pharmaceutical companies to the SMC have been recommended for use. We need the companies to come forward to make a bid to the SMC. We would welcome that.
George Adam spoke about the impact that welfare reforms are having on people with a diagnosis of MS. It is vital that the Scottish Government, local government and the third sector work together to develop a joined-up expression of our collective efforts to mitigate, as far as possible, the worst impacts of the welfare reforms that the UK Government is implementing.
We are working with the NHS, the Convention of Scottish Local Authorities, disability organisations and the third sector to understand the impact of welfare reform on disabled people and on services. We have put in place a range of measures to allow us to identify whether public health is being harmed by welfare reform. That will allow us to take steps to continue mitigating the worst outcomes. As part of that, health boards have been given tools to allow them to identify the people whose health is at greatest risk of being harmed and take steps to allow people to access support in their communities.
A number of members—Malcolm Chisholm and Lewis Macdonald in particular—talked about the specialist nurse funding that the First Minister announced. Of course, the First Minister announced that motor neurone disease specialist nurses would be the first to use that funding. Some £700,000 from the overall £2.5 million pot will go towards specialist nursing care and support for people with motor neurone disease.
People with other conditions such as MS and the organisations that campaign for them are interested to see what the Scottish Government will do with the remainder of those funds. The allocation of the remaining funds will be informed by a review of specialist nursing services that the Government is currently undertaking.
It is important to recognise that there has been an increase in the number of MS nurse specialists and nurse specialists with a neurology or neuroscience specialism in recent years.
Will the minister take an intervention?
Do I have time, Presiding Officer?
Very briefly.
Will the minister tell me why the Scottish Government has withdrawn funding for the Neurological Alliance of Scotland?
Okay. I thought that the intervention might be about the policy area that I was discussing in my speech.
I observe that we fund a range of organisations and that all the members of that alliance are also members of the Health and Social Care Alliance Scotland and can come together to make collective efforts. We will always be happy to engage with the individual organisations as well. We have a relationship with all of them already.
Will the minister take an intervention?
Do I have time, Presiding Officer?
If it is very brief.
Various organisations, such as MND Scotland and Parkinson’s UK, have concerns about funding for the Neurological Alliance, so will he agree to meet them to discuss it?
I will always be happy to meet organisations that seek to meet me, so I make that commitment to Malcolm Chisholm and other members. If any organisation contacts me, I will be happy to respond.
I will finish the point about specialist nurse funding. The chief nursing officer will write to NHS boards in the next week or so about that fund.
I assure members that we are fully committed to working in partnership with the third sector to address any inequities of care and make the necessary positive and lasting healthcare changes for the benefit of all people throughout Scotland who live with a neurological condition, including MS.
I thank George Adam for bringing the debate to the Parliament.
I thank all members who have taken part in the debate.
Meeting closed at 17:58.Previous
Decision Time