National Multiple Sclerosis Week
The final item of business today is a members’ business debate on motion S4M-02534, in the name of George Adam, on national multiple sclerosis week.
Motion debated,
That the Parliament notes the importance of National MS Week, which takes place this year from 30 April to 6 May; recognises the particular significance of MS to Scotland, which has the highest prevalence of MS anywhere in the world; congratulates the MS Society Scotland, along with local branches of the society such as the Paisley and District branch, for what it considers its excellent work supporting those affected by MS, and considers that this good work, conducted across many local authority areas, is being undermined by savage cuts to disability benefits including Employment and Support Allowance and Disability Living Allowance, with people with MS being among those hardest hit because of the complex, fluctuating and often hidden nature of the condition and its symptoms.
17:07
I am extremely pleased to bring this debate to the Parliament because, as members all know, the issue is very close to my heart. I am pleased that you are in the chair, Presiding Officer. That is no slight to your colleagues, but I know about and appreciate the work that you have done with the MS Society throughout the years and which is on-going.
Most of the people who have known me for years will know that Stacey and I have been married for a long time—if I can call 16 years a long time. When I first met Stacey, like most people, I was totally unaware of what multiple sclerosis was. The only people who I knew had it were Tiger Tim Stevens and Stuart Henry. Both were DJs—one with Radio 1 and the other with Radio Clyde—and in the 1980s, there was all kinds of publicity in the media when they started to slur their words and various other things happened. They had to say publicly at the time that they had MS. Stuart Henry was a bad example, because the form of MS that he had meant that, eventually, he died, in 1995. I assumed that that happened to everyone who had MS. A lot of the public are ignorant of the issues.
I will mention Renfrewshire Council, so, as usual, I declare that I am a councillor with that council. I also declare that I am slightly emotionally compromised, as I dearly love my wife. The support of my wife and her family is probably one of the reasons why I am standing here today.
There is a lack of understanding of MS, partly because there are four basic versions of the condition. There is benign MS, where people can have a small relapse followed by complete recovery. There is relapsing-remitting MS, which Stacey initially had when we first met. There is also secondary progressive MS, which Stacey has progressed to. I keep mentioning my own circumstances and Stacey, because this is about the people who are suffering with MS. I also keep getting told not to use the word “suffer”, but it is difficult to watch someone I love suffer day in, day out without using that word. There is also primary progressive MS.
In Scotland, 10,500 people live with MS. We have one of the highest rates of MS in the world. The minister will be aware that there has been much talk about vitamin D deficiency in Scotland. There has been the shine on Scotland campaign on the issue, with Ryan McLaughlin talking about his mother’s MS. I am no expert on the matter, but research in Australia indicates that the incidence of MS is higher among people who were born in November and December, whose mothers were pregnant during the winter months in Australia. There might be something in the idea of giving women the opportunity to take vitamin D supplements during pregnancy and of giving vitamin D supplements to younger children. In Canada, some states give vitamin D to younger people and pregnant women.
Two new cases of MS are diagnosed in Scotland every 24 hours. I would like us to look at providing vitamin D as a preventative measure. If we could prevent families like Stacey’s from having to learn that, at the age of 16, their child has the disease that would make things a lot better.
The Social Care (Self-directed Support) (Scotland) Bill can make a big difference to the day-to-day lives of people with MS. As a member of Renfrewshire Council, I know the difficulties that are faced by people who go through the process of getting direct payments and who then try to find out what is available for them. The idea behind the bill is to offer flexibility. MS requires that flexibility because of the condition’s unpredictability and fluctuation. It is right to provide such support, through which we can help people to remain in work for longer and to live independently for as long as possible.
I have said previously that self-directed support must be flexible and available consistently throughout Scotland. As a local councillor—until tomorrow—I know that there may be problems in some areas. Although we can discuss the issue in Parliament, nine times out of 10 it is the local authority that will deliver the care or the service that the individuals needs. For me, that is a problem—and, as the minister and the Presiding Officer will be aware, I am a great one for breenging in and trying to solve problems. I think that there is a large “S” on my chest—sometimes I have to admit that there is not and that we have to look at the issues, but sometimes we can say, “We can solve this.” On Renfrewshire Council, I became the councillor everyone came to about MS, because they knew that I understood the condition, what they were going through and how to help them. However, it should not have to be like that. It should be a lot easier for people to access services through the systems that are in place in local authorities.
The Westminster Government’s changes to the welfare system will also affect people with MS. I believe that all the individuals involved should be offered some flexibility, and I do not believe that Westminster is going about it the right way.
One of the biggest issues is the change to the disability living allowance, which is becoming the personal independence payment. In the United Kingdom, 69,000 people who have MS receive some form of DLA. They will have to go through a whole process to reassess their situation. For some people with MS, worry and fear can trigger an attack. The last thing that we need is for people to go through the process and have that kind of problem.
Westminster is looking for a 20 per cent cut in DLA. This is about people’s lives and their condition, yet the UK Government is effectively looking not at the individual but at the number that it has to cut. There must be a better way. I know for a fact that, for a lot of people who suffer from MS, the mobility element alone can make a huge difference to their lives and to their ability to get about. Westminster should think again on the issue.
I have said previously that one person in three cannot name a single symptom of MS.
The Paisley and district branch of the MS Society is very good at supporting people with MS. Its convener, Angela Stirling, is in the public gallery tonight with her colleague June Pratt, who is the social secretary. They take their roles, including the social side, extremely seriously. They ensure that everybody gets not only all the information that they need regarding the latest developments on MS but the opportunity just to sit down and have a chat. Stacey has constantly told me that Revive MS Support in Maryhill is very popular with people who have MS, mainly because of the tea and sympathy that it provides. People there listen and talk to people with MS.
The Presiding Officer is indicating to me that I should wind up—I am sorry.
Provost Celia Lawson of Renfrewshire Council held an event that raised more than £20,000. The Cabinet Secretary for Finance, Employment and Sustainable Growth was at it. The council got Revive MS Support to come in and do some outreach work in the Ralston sports hub.
I could say, “My name is George Adam and my wife has MS,” but that would be to do an injustice to my wife and other people who have the disease. It is important to see the people behind the condition. We must remember that when we make decisions.
I want every member who is present to tell the world that they will join the MS Society and fight back against multiple sclerosis.
Many thanks, Mr Adam. I was gently trying to remind you to wind up because I did not want Stacey to shout at you.
17:16
I congratulate George Adam on the motion. It is not only timely, but relevant. He spoke about individuals; everything that we do in Parliament should be figured around individuals.
I declare an interest as a director of the MS Therapy Centre in Inverness. My role is extremely minor and involves attending meetings and the odd event. The true spirit of what is done there is in the manager, Jackie McIntosh, and in the staff and the volunteers.
MS is a pernicious disease and the symptoms differ from person to person. The one thing that unites them is the devastation that is caused by the diagnosis. In a previous career, I assisted someone who had work-related issues and I distinctly recall the mixed feelings that that individual had when they were finally given a definitive diagnosis. The report that we all received in our e-mail inboxes—“Fighting Back: Ordinary people battling the everyday effects of MS”—mentions the emotional impact, which struck me as being important. The report also touches on the mental wellbeing not only of the individual who is unfortunate enough to have the disease—I, too, would use the term “sufferer”—but of the family, friends and loved ones. It is devastating.
I will touch on a few points. George Adam mentioned relapsing-remitting MS. The report talks about “a rollercoaster of emotions”, which that form of MS must be. I know individuals who feel that that is the case.
As a councillor and an MSP, I have asked about research into MS and have received good and detailed responses from the Cabinet Secretary for Health, Wellbeing and Cities Strategy on that and on the level of national health service support. We all hope that as much support as possible is given to people with the disease.
It is a cruel fact that—as the report mentions—people with MS feel stigmatised as a result of having the disease. Unfortunately, that feeling is not exclusive to MS sufferers. It has a significant impact on people’s wellbeing. The report says that there is no evidence to support those feelings of stigmatisation, but that is not the point: the point is that people should not feel stigmatised.
George Adam touched on the UK Government’s attack on welfare. I share the view that it is shocking. I have assisted a person in relation to childcare issues and recall the trauma that was associated with the assessment process. Again, that trauma not only affected the individual but had wider implications. George Adam is to be commended for his motion, which lays out why MS sufferers will be among those who are hardest hit by the welfare reforms which, as we have heard, are money driven rather than being about assessed need.
Scotland has the highest prevalence of MS in the world, but we need not be insular about that. The disease is very much an international issue and some of the research that has taken place worldwide is to be commended. The international community will deal with the condition.
I congratulate the MS Society, its branches and the therapy centres throughout Scotland. 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. The fightback will never stop until a cure is found. I am grateful for the opportunity to speak in tonight’s debate.
17:20
I am happy to take part in the debate, and I congratulate George Adam on bringing it to the chamber because it is important to acknowledge national MS week, to salute the valuable work that is done by the MS Society and by everyone who supports people who are diagnosed with MS, and to show that we, as parliamentarians, want to do what we can to help people who are coping with MS and other disabling neurological conditions.
MS is a complex condition. It is of as yet unknown etiology, although it appears that environmental factors of various kinds can trigger the disease if there is a genetic predisposition to it. We know that its incidence is at its highest in northern Scotland, that it affects more women than men, and that on average it first presents in young adults, but there are enormous variations within that.
When my husband was diagnosed with the condition in his late 60s, it came as a relief to him that his quadriceps muscle’s wasting was not the result of a spinal problem that would require surgery. So far, his symptoms are confined to that one area, and with luck they will do little more than have a relatively minor impact on his lifestyle. Others have rapidly increasing and widespread problems, and many have spells of good health with relapses from time to time.
Because of the complexity of MS and the variability of its symptoms, it is difficult for people in general to develop a proper understanding of the condition—hence, the importance of regularly reminding people about it, as happens through national MS week.
The last time I spoke on MS was in 2004 in a members’ business debate that had been secured by Tricia Marwick. At that time, there was concern about the postcode lottery that neurological patients, including those with MS, faced in accessing appropriate healthcare, and about the need for a code of national standards of care. I am pleased that clinical standards for neurological healthcare were published in 2009 and that health boards are implementing them. I also welcome the Government support for a neurological advisory group to be led by the Neurological Alliance.
Having checked with NHS Grampian before the debate, I am pleased to say that there have been significant improvements in its area since 2004. As well as the four full-time neurologists who were employed then, there are now another three who work part time, and they are all experienced in diagnosing and managing patients with MS. The waiting time to see a neurologist has come down from a year to 12 weeks for a routine appointment, and to two to three weeks if the appointment is urgent. MS specialist nursing time has almost doubled, and most newly diagnosed patients are contacted within 10 working days and seen within two to three weeks. If an existing patient requires an appointment, the waiting time is based on their needs at the time. For example, it is five working days for a relapse, two to four weeks for continence problems, and 10 weeks otherwise. There is also in Grampian a rehabilitation consultant who has a specialist interest in MS. Things have improved significantly up there, but there is no room for complacency.
I note the MS Society’s support for the Scottish Government’s Social Care (Self-directed Support) (Scotland) Bill, which is embarking on its progress through Parliament. I welcome it because I agree that people with MS, and many other disabling conditions, ought to be able to choose the support that is right for them, at the right time. If we get the legislation right, SDS should offer that flexibility. I look forward to working with the MS Society and other interested organisations, as well as with patients and carers, as the bill proceeds.
I agree with the MS Society, however, that legislation alone will not deliver meaningful choice and control for people with MS, and that SDS must be understood and flexibly applied throughout Scotland, as George Adam said. I am also aware that there is often a lack of services for people to choose from, for example in respite care facilities.
Four minutes is nowhere near long enough to deal adequately with the many facets of MS and the needs of those who live with it, but I hope that the debate will help to raise awareness of the condition and improve our understanding of what is needed by the many patients in Scotland who are diagnosed with it.
17:24
I, too, record my congratulations to George Adam on securing a debate on such an important issue. We have heard that Scotland has one of the highest levels of MS in the world; recent research shows that its prevalence in Scotland is 200 per 100,000 of the population. In Ayrshire, that increases to 240 per 100,000. Currently, 950 people are registered with NHS Ayrshire and Arran as having MS.
It is therefore not surprising that Ayrshire has a very active branch of the MS Society, which is based in Kilwinning in my constituency. It is the largest branch in Scotland and it provides a range of support services to people with MS and their families. The service is managed and staffed solely by volunteers. It has been in existence for 42 years and has built up excellent relationships with the health board and the three Ayrshire councils. I spoke last week to branch members who told me that once they are diagnosed with MS, patients in Ayrshire receive excellent treatment and services. However, they also told me that the situation is not the same everywhere else in Scotland. We need to ensure that the very best treatment is available to all those who have MS, wherever they live.
The Kilwinning branch has adopted a ward in the Douglas Grant rehabilitation unit at Ayrshire central hospital. It is a purpose-built unit that offers specialist services to people who have neurological conditions. The local MS branch supports it by donating furniture, furnishings, televisions and other items to enhance the quality and experience of the people who use the unit. With the help of the staff of Hunterston B power station, they have also been able to provide lifting hoists and a specialised shower that is of great benefit to both staff and patients. Many people may think that such things should be supplied by statutory sources, but the branch’s view is that it will take that matter up later because it wants to make things better in the short term for people with MS.
I have not used the word “suffer” in relation to people with MS, because the local branch told me that they do not like to use it. However, the secretary, Harry, said to me, “To be honest, Margaret, I suffer. Some days I’m really suffering. The consultant said not to use the word, but I suffer.” We must recognise that.
The Kilwinning branch resource centre is also a place where, as George Adam mentioned, people can go and just talk to someone. They can get help with forms, in respect of all the complications that are going to arise because of welfare reform, which is a concern to people with MS. We must recognise that, because of the variability of their condition, it has always been difficult for them when they are trying to get the benefits to which they are entitled.
The branch also has a grants system. It distributes more than £25,000 a year to people in Ayrshire who have MS. The only criteria are that a grant should improve a person’s quality of life or alleviate crisis for individuals or their families. Outwith Ayrshire, the branch has donated £37,000 over the past two years to the University of Edinburgh’s J K Rowling research unit. As surveys continually stress, research to find a cure is the number 1 priority. I do not think that any of us would disagree with that.
All of that is done by fundraising all year round throughout Ayrshire and Arran. We heard about the report that said that there is little public awareness of MS, but it is our job to improve public understanding and to remove preconceptions surrounding the condition. However, the Scottish public give generously every day to the MS Society. Parliament should acknowledge that.
I pay tribute to all the volunteers, many of whom have MS, in Ayrshire and throughout Scotland who raise the funds and who work in and manage their local MS Society branches, because their efforts and dedication make a real difference to the quality of life of people who are living with MS.
17:28
I congratulate my colleague George Adam on bringing his motion to the chamber. I know that the issue has for him and others a great deal of personal resonance. That is the case for me, too, because my best friend’s wife is one of the 10,500 Scots with MS.
George Adam spoke about his understanding of MS and he mentioned prominent 1980s DJs who had the condition. I am a little bit younger than George Adam, so I do not recall those instances. What brought the condition to my attention was Brian Irvine, the Aberdeen footballer, announcing that he was suffering from MS. “Suffering” was the term that he used at the time; I know that we try not to use that term, but as Margaret Burgess has identified, many people who have MS tell you directly that it is a condition that leads to varying degrees of suffering for them, on occasions.
On Monday, I was delighted to visit the Aberdeen branch of the MS Society, which operates from the Stuart resource centre in Mastrick. I also visited the stall that the society’s Inverurie branch is running in the Bon Accord centre all this week. The Stuart resource centre is unique in being a dedicated centre for the MS Society’s use. A range of activities are provided there, from gentle exercise to Thursday afternoon Scrabble and dominoes sessions, which give members an opportunity to interact and engage.
At the Stuart resource centre, I spoke to a number of branch members. They raised a few concerns with me, which I will take the opportunity to highlight. One concern, which a number of members have highlighted, is about not just the benefits changes that are coming but the uncertainty about them and the lack of information. A service user told me that lack of information heightens stress, which is the last thing that people need. That struck a chord with me. All the uncertainty about what is taking place at Westminster is having a detrimental impact on those people’s health and wellbeing, before there has even been an announcement about whether the changes will have an economic impact.
Another concern is the signposting of services and bodies such as the MS Society. Many people said that, when they were diagnosed, they were not given information or directed to the organisations that could benefit them. That is not unique to people with multiple sclerosis; many people have told me that, at the point of diagnosis, the health service needs to provide better signposting to organisations that can provide support and interaction with other people who have conditions.
My friend whose wife has MS is diabetic. From his experience with his wife, he suggested that he, as a diabetic, has had more support to cope with diagnosis, and more psychology input and education sessions than his wife has had. He says that that needed to be looked at. It might be just a geographical issue, but the minister might want to look at provision of psychology input, education sessions and helping people to cope with the initial diagnosis, which can often cause great stress.
I will make a final brief point about stigma. In an article in Monday’s Press and Journal, Marsali Craig—a woman with MS in Aberdeen—said that people misunderstand multiple sclerosis and often dismiss people with MS as being lazy or drunk. We need not just education for people who are diagnosed with MS but education about MS for the wider population. I hope that all members will do everything they can to tackle stigma.
17:33
I, too, thank George Adam for giving us another opportunity to debate multiple sclerosis. I spoke in the previous MS debate, in December, which Rhoda Grant secured. Like other members, I thank the Presiding Officer for her continued support since 1999, which is highly valued, given that families and friends of people across the chamber are affected by MS.
I will address the importance of MS week and raise related issues. I will not deal with the Welfare Reform Act 2012, except to say that one of the many changes proposed by the occupational therapist Professor Malcolm Harrington, who is advising the Westminster Government, was to have a category to acknowledge and understand the importance of fluctuating conditions in determining benefit payments. Such a category did not exist at the beginning of the Welfare Reform Bill process. Mental health issues, myalgic encephalomyelitis and multiple sclerosis are the three conditions that relate to that welcome change.
Last week, I was pleased to host a briefing on the health effects of vitamin D deficiency—I thank the many colleagues who attended that briefing, including George Adam. I raise the issue in this debate because a lack of vitamin D is often linked to many conditions, in particular, to multiple sclerosis. Dr Helga Rhein, a general practitioner at Sighthill health centre in Edinburgh, has carried out considerable research into that both in her own clinics and wider afield. As others have said, the further north in Scotland one goes, the higher is the prevalence of MS. We all know that the best way in which to get vitamin D is through summer sunshine, but I understand that between October and April, the sunlight in the United Kingdom—let alone in Scotland—has too low a level of ultraviolet B for vitamin D to be made. On its website, the MS Trust states that, as George Adam has highlighted,
“Vitamin D may also play a role before birth as more people with MS are born in May than in November”—
after the summer months.
The Food Standards Agency recommends that pregnant women and those in groups that are at risk of vitamin D deficiency should take supplements of 10 micrograms a day. In 2009, the Scottish Government adopted the National Institute for Health and Clinical Excellence guideline that all pregnant and breastfeeding women should be advised about the benefits of vitamin D supplements. However, according to a publication by Ahmed et al, in Glasgow only 25 per cent of the women who were advised to take vitamin D actually took the supplement.
The shine on Scotland campaign website also states—I think that I am repeating George Adam again—that
“researchers in North America suggested that high doses of vitamin D could dramatically cut the relapse rate in people with multiple sclerosis. According to scientists in Canada, more than a third of sufferers taking high levels of supplementation did not fall ill during the period of the trial, representing a marked change in the pattern of their disease.”
Vitamin D deficiency is also linked with many other medical conditions, including depression, but that is for another day.
Given that 80 per cent of the Scottish population is estimated to be vitamin D deficient and given the consistent link with MS, I ask the minister to provide a paper to the Parliament that clarifies or confirms the recommendations of the United Kingdom scientific review of the subject, which I believe is being carried out at the moment. We have heard so much about the link between vitamin D deficiency and MS that we need a peer review of all the research, the emerging evidence and the papers that link—or otherwise—those conditions. I hope that the study by the Rowett institute of nutrition and health into MS in the northern isles will be included in that. I also ask the minister to update GPs on the latest research and give consideration to GP testing for vitamin D deficiency and the ability to prescribe a supplement where appropriate.
17:38
I, too, congratulate George
Adam on securing the debate and the MS Society on its work in raising the profile of the impact of MS on those with the condition—both on the emotional and relationship side of life and on their social and working life—through “Fighting Back”. As members have said, we all know that there is a particularly high prevalence of MS in Scotland, with 10,500 people having the condition. I am also reliably informed by the MS Society that the number of people with MS is particularly high in the south of Scotland—indeed, 1,700 of those 10,500 sufferers are in the south of Scotland. Jo O’Neill of the MS Society told me that the Scottish Borders has one of the highest rates of MS.
I have raised issues with the Cabinet Secretary for Health, Wellbeing and Cities Strategy regarding the implementation of clinical guidelines on neurological health to ensure that there is no postcode lottery in the provision of services. As things stand, in the Scottish Borders we have only limited access to specialist multidisciplinary teams of consultants, physiotherapists and nurses. Indeed, the physiotherapy provision that we have is funded by the central Borders branch of the MS Society.
The relative lack of specialist nursing provision is not directly the responsibility of the Government; the Government funds NHS Borders and the board makes clinical decisions. I want to use this opportunity to highlight the plight of people in the Borders who have MS and to call on NHS Borders to respond in kind. The board does not currently have specialist consultant-level support and there is no purely NHS-funded physiotherapy support, although the board has 0.6 full-time-equivalent specialist nurse provision.
Appropriate specialist, rather than generalist, provision can have an impact on people with the condition. Information that the MS Society provided to me in August 2011, which probably relates to 2010, suggests that, by treating patients in the home, MS nurses could generate savings of as much as £1,800 per course of treatment, so it would make good financial sense for NHS Borders and other boards in Scotland to invest in such services. I hope that NHS Borders will use its common sense and address the need for specialist provision, given that we know that the south of Scotland has the highest prevalence of MS, according to the MS Society. It is about priorities.
The MS Society cited a survey, saying:
“Over 60% of respondents reported that their MS nurse always helps them when they want to know about different treatments, or their current medication. Over 70% stated that their MS nurse is always the first point of contact when they have any questions about their MS”,
and
“80% said their MS nurse had provided support to their family and carers.”
MS nurses are important posts and we should do all that we can do to encourage our local health boards to provide such services. In a report by the MS Society, an MS patient was quoted as saying:
“Having an ms nurse has enabled me to remain in work and cope well with the condition ... It is great to have a familiar face who knows who you are and someone who can help you make very important decisions.”
I sincerely hope that NHS Borders will respond to that call, and I congratulate George Adam on bringing the debate to the Parliament.
17:42
I welcome the debate and congratulate George Adam on securing it in this important week.
We are all creatures of our past. I was very lucky, in that in my formative years in business and manufacturing I had a senior management mentor who helped to train me in personal, people, financial and management skills, at NCR in Dundee. Lawrie Elder had MS, but not for him was lying down in the face of what some people wrongly perceived as a barrier to a successful career, a full and active social life and a very happy marriage.
Scotland has one of the highest levels of MS in the world, with 10,500 sufferers, whose immune system assaults the myelin that surrounds the cells in their nervous system. Most sufferers are struggling with the fluctuations of the relapsing and remitting form of MS.
Diagnosis of MS can have a severe emotional impact not just on the individuals but on their families and partners, as George Adam said. The good thing about Lawrie Elder was that he talked openly about MS. The condition did not diminish his self-confidence. He had a loving relationship in all ways with his wife and partner, and a strong bond with his family—in his early forties, he adopted two boys.
MS is something that we should and we must talk about. It is a condition, not a disease, and there is no stigma to be offered to or received by people who are in such circumstances. I agree with Mark McDonald in that regard. Lawrie proved that developing and disseminating knowledge and understanding of his condition could become a spur to his business, social and emotional life. If occasionally his condition was mistaken for drunkenness, that did not inhibit him in the occasional libation—or two, or three. He epitomised the 49 per cent of those with MS who say that the condition led them to take up new hobbies or interests and who have shamed the so-called “fit” who are ill equipped to understand fully what the condition means.
I do not diminish the challenge of the condition and am too ill equipped to know the answer to it, but our priorities must be to ensure that our health boards meet the highest standards that are set in clinical neurological services, as the minister said earlier this year; that physiotherapy and psychological support services and other services are readily available; and that Healthcare Improvement Scotland ensures that those services are fully provided.
A lot—much more than in Lawrie’s time in the 1970s—is being said and done across Scotland. I am not sure whether the proposals that have been discussed, such as the early prescription of vitamin D, are part of the answer, but I am sure that the answer and the solution will come, and I hope that they will come sooner rather than later. In the meantime, as in Lawrie’s case, it behoves us all to provide understanding, communication, care, aspiration, support, courage and love. All of those are great palliatives.
I congratulate George Adam again, and I am signing up to the MS Society.
17:46
I, too, congratulate George Adam on securing time for this important debate. There is no doubt from the speeches that have been made that a significant number of members who are participating in the debate have direct experience of the impact that MS can have on an individual’s life. I know that the Presiding Officer organised one of the most effective lobbyings of Parliament a number of years ago—I will not mention how many years ago—in highlighting to MSPs the issue of MS.
I offer my thanks to the many organisations—the MS Society and others—that provide a tremendous amount of support and assistance to individuals who have the condition. John Finnie and Margaret Burgess referred in particular to facilities and organisations that they are aware of, which offer assistance and support to individuals who have the condition.
I should, of course, mention in particular the Paisley branch of the MS Society, representatives of which I had the pleasure of meeting earlier this evening. The branch does a tremendous amount of work in the Paisley area, and a number of its young volunteers have been awarded the Government’s saltire award for their outstanding work. I hope that it can continue that important support.
In the past few weeks, I also met the MS Society, at the invitation of Margaret Burgess, to discuss a number of issues about the progress that is being made and where the Government’s priorities are on continuing to improve services for individuals who suffer from neurological conditions, including conditions such as MS. We share the MS Society’s view that everyone with MS should be able to access the care and support that they need. Given the prevalence of MS in Scotland, it is extremely important that we achieve that.
A key priority that we have taken forward to improve services for individuals who have a neurological condition has been to ensure more effective implementation of clinical neurological standards. Their implementation has been taken forward over the past 18 months in order to ensure that the care that individuals with MS receive is safe, effective and person centred. Of course, it will take time to ensure that that is effectively delivered across the country.
I have been struck by the commitment that health boards have shown in their willingness to ensure that the neurological standards are effectively implemented. Nanette Milne clearly set out the progress that boards are making to achieve that. We have provided the neurological alliance of Scotland with £40,000 to establish a national advisory group, which will oversee and support boards in that work in the months and years to come. That will ensure that we establish the right standards—as we have done so far—and that they are properly maintained.
One of the important elements in driving forward that agenda is the peer review process that Healthcare Improvement Scotland has been undertaking with health boards. The boards are able to compare with one another the actions and work that they are doing to see whether they can make further improvements.
On Paul Wheelhouse’s point in that regard, we expect the peer review work to be completed and published by the summer. That will allow us to see exactly how NHS Borders compares with NHS Grampian, for example, and what progress the boards have made. We will be able to see where there are continuing gaps, and boards will be left in no doubt about the work that must be undertaken to address those issues.
Several members have mentioned vitamin D, which has clearly attracted a considerable amount of media attention. I will address some of the issues. I recognise the particular interest that MS organisations have in that regard, and it is fair to say that a significant amount of research is being done internationally to examine a variety of ways in which we can more effectively prevent or treat MS.
Mary Scanlon made a point about the need to review the literature and the research that exists. In 2010, the Institute of Medicine in the United States published a 1,000-page document that reviewed all the world literature and research that has been produced to date. It broadly concluded that vitamin D supplements have a value in dealing with pain conditions, which they can effectively assist in treating. However, the research around MS was at that point inconclusive, and it was not clear that some form of supplementation would do what many people are under the impression that it would with regard to preventing MS and being effective in treating it. The Chief Medical Officer for Scotland has asked the scientific advisory committee on nutrition to undertake a full review of vitamin D supplementation, and to include links to MS and other conditions.
That process is under way, and it will take a considerable amount of time to examine all the peer-reviewed evidence. We expect to have the committee’s draft report and finalised recommendations in 2014. At that point, we will be happy to inform Parliament of those recommendations and the actions that we will take as a Government. I am sure that members will recognise that, in order to deal effectively with the issue of vitamin D, we must ensure that we are clear about the clinical consequences of going down that particular route. We must have clear clinical evidence in order to justify any changes in the present arrangements.
I have a few points to make on the issue of welfare reform, which many members have raised, and which is regularly raised with me by a variety of organisations that represent the needs of disabled people. I welcome some of Mary Scanlon’s points on the flexibility that the UK Government is seeking to introduce into the system. However, we continue to have concerns about the way in which the personal independence payment system will work. Part of the difficulty in assessing any possible impact is the lack of information around the scheme, which I know causes considerable uncertainty for individuals.
It is extremely important that the UK Government provides as much information on that system as possible to try to allay some of those concerns. It is also important that any assessment process that is undertaken as part of the personal independence payment scheme recognises fluctuating conditions such as MS and the way in which people can experience a rapid change in their condition in a very short period of time.
Self-directed support is another issue. George Adam mentioned the need for greater control over individual care arrangements, and some of the difficulties and challenges that individuals may face with regard to the use of direct payments. The purpose of the Social Care (Self-directed Support) (Scotland) Bill is to begin to remove the inconsistencies, so that no local authority can turn round and say, “No—you do not get direct payments for that.” People will have a legal entitlement to the options, which will include a form of direct payment, so that there is greater consistency across local authorities. The way in which care will be provided under that system depends on the option that the person chooses.
People will be able to have full control of their care package if they choose to do so, they will be able to have partial control of it, or they will be able to allow the local authority to continue to manage it in the way in which care packages have traditionally been provided. The bill will give people much more direct control of their care than they are presently afforded, and it will remove some of the anxieties that people may have about direct payments and some of the inconsistency in the way in which care is provided by local authorities. We are taking forward the integration of health and social care precisely to address such inconsistency between local authorities. Too often, the services that are provided are organised for the purposes of the system rather than to meet the needs of the individual who requires the care. We will ensure that the system provides much greater consistency across the country.
I hope that I have reassured members that, as a Government, we want to continue to see improvements in clinical standards for people with neurological conditions. In areas in which there is further research to be done, we have committed to doing that. We look forward to the publication of the advisory committee’s report and, in particular, its recommendations on vitamin D. I will continue to engage regularly with individual members on particular issues that they may have locally as part of the continued efforts to improve services for people with multiple sclerosis.
Meeting closed at 17:56.