The final item of business is a members' business debate on motion S1M-1132, in the name of Tricia Marwick, on multiple sclerosis in Scotland. The debate will be concluded after 30 minutes without any question being put. I ask members who are not waiting for the debate to leave quickly and quietly—and that includes the ministers who are deep in conversation in the second row.
That the Parliament notes that Scotland, with an estimated 10,400 multiple sclerosis (MS) sufferers, is widely held to have the highest incidence of this disease, for which there is currently no cure; recognises the importance of the lobby of MSPs by people with MS which is to take place on October 5 2000; notes the important developments in MS care in recent years, including the introduction of specialist MS nurses, a concept pioneered in Scotland, and the development of the drug beta interferon, the only treatment to date which modifies the course of the disease; regrets that, despite this progress, standards of care for people in Scotland with MS remain unsatisfactory, as recognised by the recent report of the Scottish Needs Assessment Programme; further notes that the cost-effectiveness of beta interferon in the treatment of MS is currently under review by the Health Technology Board for Scotland, and believes that Scotland, with the highest incidence of MS in the world, should set the world standard for people with MS care.
Earlier today, we met some remarkable people—including my next-door neighbour—who came from Shetland to Dumfries to lobby us; I thank all the MSPs who spent time in the Hub listening to their lives and experiences. For many of those people, getting here was not as simple as it is for the rest of us, because they have multiple sclerosis. At this point, it is appropriate to thank all the people who made what was in many cases a difficult journey to lobby MSPs today. I also thank the Multiple Sclerosis Society in Scotland, which organised such a successful lobby. It is also appropriate to thank the staff who have made our Parliament accessible to the people here today and who have helped them to take part in this evening's proceedings.
The people with multiple sclerosis told us how difficult it is even to get out of bed in the morning, let alone travel to Edinburgh and get into the visitors gallery for this debate. Moreover, they have to fight for services that ought to be freely available. They might have to wait six months to see a neurologist; they might be told that there is no money in this year's budget to put a ramp at the front door; and they might be denied the only drug that can moderate the effects of the disease
This is an important debate and I am grateful that the minister—not the deputy minister—will reply, which shows the importance that she places on the subject. The debate gives us an opportunity to turn our attention to a condition that affects more than 10,000 people in Scotland. Multiple sclerosis is an incurable and progressive disease of the nervous system. It affects different people in different ways. A significant proportion of people end up in wheelchairs, and there is no known cure.
In Scotland, we have the unenviable distinction of leading the world in the incidence of MS. The incidence of MS is far higher the further north one goes. People are twice as likely to have the disease in Orkney than elsewhere in Scotland. As with many other aspects of the disease, the scientists do not know why that is. The Executive is not funding any research to find out why Scotland has the highest incidence of the disease in the world. If we are the world capital of MS, we must start to lead the world in the standards of care that we give to people with MS. We in this Parliament must strive to set those standards of care and to provide the best care that is available.
I draw members' attention to the final report of the Scottish needs assessment programme—SNAP—which is about to be published. The report was commissioned before the current Administration took office, but its conclusions are vital to those who make decisions about the treatment of MS and the care that is given.
The report says:
"Current care is substantially sub-optimal, inadequately resourced and unacceptably fragmented."
"There is an urgent need to develop properly resourced services in MS care."
It also states:
"Health boards should urgently develop strategies for the achievement of good practice outlined in the MS Society's standards document."
The extensive report does not paint a picture of satisfactory MS services in Scotland. There are seven specialist MS nursing staff in Scotland, but 10,400 people who have MS. We have some way to go before we can be proud of the standards of care that we offer to people with MS in Scotland.
It is time that we considered how to improve the level of service—how to change the sub-optimal, inadequately resourced and unacceptably fragmented situation that we have at present. One drug—beta interferon—has been proved to moderate the course of MS in some people. The drug is widely available in every developed health
I am aware that the National Institute for Clinical Excellence believes that physiotherapy could be seen as an alternative to beta interferon, but I point out to the minister that that view is not supported by the Chartered Society of Physiotherapy, which rightly states that physiotherapy should be part of an overall programme of treatment and not a cheap substitute for drugs.
The Health Technology Board for Scotland is about to conduct its own inquiry into the availability of beta interferon in Scotland. In doing so, it should bear in mind the fact that beta interferon is widely held to be of assistance to as many as a fifth of MS sufferers. Why then are only 1.5 per cent of Scottish MS sufferers prescribed the drug? We have a responsibility to represent the interests of all our constituents and to ensure that the drug is far more freely available.
I am delighted that this debate is taking place, because it will bring hope to many thousands of people in Scotland. It will bring hope to the many people here today—and those who have never spoken to a member of the Scottish Parliament or, indeed, any elected representative—who have come to highlight their condition to us. They want a positive response from the minister.
On a point of order. As a regular attender at members' business, I note that there is a high turnout today. Have you any indication, Presiding Officer, of how many people want to speak? Would it be possible, at the appropriate time, to move for an extension of business to enable a full debate to take place?
I congratulate Tricia Marwick on securing this debate. Multiple sclerosis is an important issue. I welcome the SNAP report and I congratulate the group on the careful manner in which it has drawn it up. The report suggests that the prevalence of multiple sclerosis in Scotland is around 203 per 100,000 and that the incidence—the number of new cases annually—is around 10 to 12 per 100,000. Data that I have obtained today from the primary care clinical informatics unit at Aberdeen University confirm the SNAP figures but suggest that, as the SNAP report indicates, the prevalence is probably somewhat higher. Based on the number of patients presenting with MS to general practitioners in the four years to April 1999, the informatics unit suggests that there are probably 11,300 MS sufferers rather than 10,300, as is suggested in the report. It is suggested that even that might be an underestimate. Whatever the figure, the condition, with its unpredictable course, causes substantial suffering and stress to individuals and their families.
The extended disability status score is one of a number of useful tools that allow us to determine the level of need in MS sufferers. It is estimated that 27 per cent have a minimal impairment, 45 per cent have a moderate impairment and 28 per cent have a severe impairment. I believe that this is another area in which it is not practical to expect every practitioner to have an expertise. The Multiple Sclerosis Society surveys show that there is a lack of knowledge among the health professionals. The numbers involved might be a reason for that.
The basic philosophy of management in relation to MS, as with other chronic diseases, must be the one to which both health ministers have committed themselves—partnership with patients and their families. Patients and their families must be fully informed and able to participate, with the health professionals, in the management of their condition.
There is no doubt that the current service is inadequate. A 70-day waiting time to see a neurologist is unacceptable and is two and a half times longer than the society recommends. I would join SNAP in identifying the shortfalls, but my time is limited.
We have a new structure in the local health care co-operatives. A medical officer should be designated in each LHCC to deal with MS sufferers; we should begin by having one for each primary care trust. We should also have a specialist liaison MS nurse in every primary care trust. That would double the current numbers and be a move towards having one for every LHCC—50 nurses in all. If we engaged the voluntary
I thank Tricia Marwick for securing this debate on an issue with particular significance to Scotland. Lord James Douglas-Hamilton asked me to extend our gratitude for the opportunity to meet the MS sufferers in the Hub at lunch time. Meeting people face to face to listen to their problems is better than reading about them.
I tend to associate MS with beta interferon. Because I do not have a health background, I tend to ask for advice from people who know much more than me. Last November, I wrote a letter to Harry Burns, the director of public health at Greater Glasgow Health Board, and he has given me permission to quote from his letter, as I feel that a lot of information regarding beta interferon is a wee bit misleading.
According to the Multiple Sclerosis Society, only one drug—beta interferon—is known to slow the symptoms of MS in some cases. The availability or otherwise of beta interferon on prescription epitomises the unfairness of postcode prescribing. I remind the minister, as the drug is the one most associated with postcode prescribing, that the press release of last November does not stack up with the Health Technology Board for Scotland's announcement that it will put an end to postcode prescribing.
An MS website states that beta interferon injections may limit the development of new diseases and may also lower the incidence of relapses. The drug is expensive, and its use is rationed by health authorities. As I understand it, beta interferon is an excellent drug for some people with MS and helps them enormously. However, it is a false hope to say that it can help everyone. Harry Burns wrote:
"I do not think Beta Interferon is the answer to this disease. I think it important that further research is carried out so that a genuine cure is found."
On hearing that beta interferon was the only drug available for MS, I looked through my file and found that another drug, Copaxone, is being considered. To put the cost in context, I cite the example of the spending on taxol, which is used
It is time to examine drugs and therapies, to collate the information and to issue clinical protocols on MS to ensure that all sufferers are given clear, accurate information and the appropriate treatment and care for their needs. I hope that the Scottish intercollegiate guidelines network will also take up the challenge.
I congratulate Tricia Marwick on securing this debate. As someone who worked with MS sufferers for a good number of years in a professional capacity, I was pleased to see so many of them coming to the Parliament today to lobby MSPs. During my discussion with MS sufferers and carers from Lanarkshire and Falkirk, it became clear that they have had to deal with some difficult situations and that they have a strong case for improvements being made in services.
I was interested to hear that the Forth Valley Health Board area has one of the highest incidences of MS in Scotland. However, the area does not have an MS nurse. When I worked in the area, I dealt predominantly with young MS sufferers. The Forth Valley Health Board area does not have any form of respite for young disabled people. I have seen a case in which, because of a lack of suitable facilities, the mother of young children had to go into a nursing home or hospital when the family were desperate for some respite. It was inappropriate for those young children to have to visit their mother in such a setting, given the client group there. If a more appropriate setting had been available in the area, that would have helped the children to cope with the situation.
Respite and the availability of MS nurses are important in providing support and assistance not only to the individual sufferer, but to their carers. Those facilities can also provide support to the professionals who, as Richard Simpson
Earlier today, the Minister for Health and Community Care referred to 22,000 extra weeks of respite for older people. Let us please avoid a situation in which a 64-year-old MS sufferer who desperately needs a week's respite will be denied that respite on the basis that they do not qualify for the new money. It is essential that any money that is provided for community care services is allocated flexibly enough to address needs and is not allocated to someone because of their age. There are also real problems in securing proper respite for young disabled people. It often proves to be extremely expensive, as people have to go further afield to special units. Such units charge a premium because of the limited number of places and the specialist nature of the care that they provide.
If we are to provide a coherent and cohesive service for MS sufferers, we must break down the barriers to accessing services and ensure that individuals and their families receive the support and assistance that they require from social services and the health service. I ask the minister to address those points.
This afternoon we had an excellent statement on care for the elderly. We need the same excellence in the care of MS sufferers and other disabled people. As I heard today, MS sufferers urgently need adaptations in their homes; they need them without bureaucratic delays in application and assessment. The carers of MS sufferers need help in the home. Today I heard harrowing stories from people from Ross-shire of families struggling to cope and general practitioners not fully understanding their needs.
In the Highlands, there are two major problems. The first is access to neurological services. Dr Richard Simpson spoke of a 70-day wait, but people in Caithness wait for nine months because there are no neurological services in the Highlands—services are delivered from Aberdeen. That is a problem not just for MS sufferers but for others who need neurological services. The service must be improved.
The second and biggest issue is respite care, as Michael Matheson said. There are no facilities in the Highlands for young or middle-aged disabled people, who are put in totally inappropriate places—in geriatric wards or nursing homes. The distance that people must go from their homes for respite care is also a problem. We need lateral thinking. We need to work out how we can give
I found the lobby at the Hub today very helpful. I promised to make a few points that were raised with me by people there. Beta interferon has been covered, as has the matter of nurses. The minister should give priority to providing more nurses.
It may be hard to create a health service in which GPs have a wee bit of time, but we must aim to do that, so that proactive support from a GP is possible. GPs could visit MS sufferers in their homes on a regular basis—perhaps every three or six months—to see how they are getting on, rather than wait until someone comes to see them.
A further, possibly contentious, point that was made to me is that waiting times should be improved generally, but young people who are diagnosed as having MS should jump the queue, as the diagnosis is such a horrific shock that they need early help.
The benefits system is outwith the Parliament's control but I hope that the minister will make representations on it. Anyone who has experience of Westminster matters in their surgery will be familiar with horrific tales of how people can be very badly dealt with by that system.
I have received today and on previous occasions a number of accounts of unsuitable attitudes from doctors inspecting and assessing people. Those doctors come under our control indirectly, so I hope something can be done to educate them. I know that doctors are not there to say yes to everything, but they can treat people in a civilised way—it is clear that some do not.
I will be brief—I am not an expert on this subject, which some members in the chamber obviously are. Until today, my only real involvement with MS was through a very close friend, who was diagnosed within the past five years as having MS. The horrifying thing for me is that Patricia has been ill for about 15 or 16 years, but for most of that time no one really knew what was wrong with her. It would seem that she was treated for the symptoms rather than the cause. I have heard from others today that that seems to be fairly common, and that bothers me terribly.
It also bothered me terribly to discover, as I did by reading the MS Society's booklet, that the society is almost the sole funder of research in the
Others have focused on care for MS sufferers, so I will not go into that, except to echo Michael Matheson's concern about the situation in Forth Valley. In Lanarkshire, too, where there is a huge incidence of MS, there is no specialist MS nurse. That seems entirely unreasonable to me. My plea to the Executive is to consider direct funding into some of our excellent research centres in Scotland to assist the society in further research. Let us aim very high—not just in treatment, but to find a cure for this disease.
Linda Fabiani has already touched on one of the difficulties with direct research; Richard Simpson has raised a number of points about nursing care; Donald Gorrie has talked about diagnosis; and the whole gamut of issues was raised eloquently and reasonably with us today in the Hub.
I apologise in advance to the minister because I will not be able to be here for her reply, but I have to home in again on beta interferon. I do not think that there are MS sufferers in Scotland who think it is the wonder drug, but a significant number of people—perhaps as many as 10 or 15 per cent of MS sufferers—would be assisted through its use.
This country has one of the highest incidences of MS in the world. I do not think that it is acceptable that people must go to Europe or other parts of the world to be prescribed beta interferon and cannot get it in Scotland. None of us knows for sure whether it can help, but people who have come to my surgery—I have written to the minister about the Buchanan family—are absolutely clear that, when they were able to procure the drug, it helped them. However, they cannot afford to continue to procure the drug privately, because it is too expensive.
We know that it is an expensive drug—treatment costs £10,000 a year—but when we consider its potential to stabilise and assist the lives of MS sufferers we can see that the money would be well invested, because in the long run we will save money that would have to be poured in because of the debilitating effects of the illness.
I plead with the minister to give us at least a five-year trial to study the effects of the drug. We can then assess whether it should be universally available. But let us make it universally available at least for a five-year period.
I would like to add my congratulations to Tricia Marwick on securing this debate. I would also like to thank the many members of the MS Society who have come to Edinburgh today to talk directly to MSPs about their MS and what they need. I especially thank those with MS, because of the real effort that they have made to come here, in the knowledge that the effects of making that effort will most probably wipe out the next few days.
I will touch on two of the many issues that are raised by the prevalence of this condition and the shortfall in the services that are available. The first is the need for better awareness of MS among all health professionals. Richard Simpson's suggestion of provision within and by LHCC is good. It would also be helpful if, at the point of diagnosis, patients were directed to bodies such as the MS Society, where they can get more information about their condition and receive the support of fellow sufferers and people who understand what they are going through.
My second point is that most people with this condition are diagnosed in their 20s, 30s or 40s—a stage in life when they are likely to have young or youngish children. Those children will almost inevitably find themselves taking on a greater or lesser burden of care. There is very inadequate provision—if any—of support to those young people.
I have two points for the minister. I would like to add a plea in support of Tommy Sheridan's proposal that there should be a trial on the use of beta interferon and that medical advice, rather than financial consideration, should guide such a trial.
As far as I could deduce from speaking and listening to people this afternoon, many consultants have told people that they would benefit from the drug if the consultant were able to prescribe it. I spoke to a young woman who, had she been able to obtain the drug, would have more than paid back the £10,000 per annum because of what she put into the general kitty as a result of the high salary that she earned. We must look beyond the financial considerations.
I add my support to Richard Simpson's comments on the need for nurses to be attached to practices and so on.
I want to raise an issue that is slightly embarrassing to some people: the use of cannabis by MS sufferers. I spoke to folk today who can get some relief from pain by using cannabis. I urge the minister to talk to her colleague Angus MacKay, explaining to him that MS sufferers who use
I had not planned to speak in today's debate, but I was moved to do so because of the lobby, which is the most effective that I have seen in my eight years as an MP and now MSP.
Most of the debate has focused on beta interferon, but today I learned of other drugs, such as Zanaflex. One of my constituents told me that she uses Zanaflex and that if she did not she would be unable to drive. I hope that that drug is available throughout Scotland. If the minister does not know about that just now, I will look forward to receiving a written response on the matter.
I also learned of other services that are so crucial and in many cases so lacking. I was surprised that physiotherapy is not more widely available and in once case not available at all. I hope that that, and the crucial matters of specialist nurses and neurologists, will be addressed.
I commend the minister for referring the issue of beta interferon to the Health Technology Board for Scotland; I never thought it satisfactory that that body should determine its own agenda. I am glad that that was the first instruction the minister gave the board and I hope that it will listen to people who have used and benefited from beta interferon. That process is not always possible with new drugs, but in this case it is and I hope that those voices will be heard.
We were all immensely impressed by today's demonstration. In the entire—brief—lifetime of the Parliament, the event at the Hub was the most efficiently organised demonstration that I have seen. People came from everywhere—from Caithness to Dumfries—which was wonderful. Like my colleague, Nora Radcliffe, I know that many will pay for the trip in the fatigue that they will suffer over the next few days.
I have the honour to be honorary president of the north-east Glasgow branch of the Multiple Sclerosis Society. I also have a young niece who has MS and is in a wheelchair. Her mother-in-law has had MS for 25 years—lightning has struck the same family twice, even though the sufferers are non-blood relations. On some occasions, the young husband is in hospital visiting his mum in one ward and his young wife in another. Look at
Provision for MS sufferers in Glasgow is among the worst in Britain. It is dreadful. We are the pits when it comes to provision. For starters, Greater Glasgow Health Board is one of those that will not consider prescribing beta interferon. "Too expensive," it says, so the people who approach me, including young mothers who are desperate to stay out of a wheelchair so that they can cope with their children, do not get a chance.
Beta interferon is not that expensive at all, if one considers that the price of any drug can be forced down by prescribing it more widely. Shame on Greater Glasgow Health Board that it takes that attitude. It boils down to money. It is looking at budgets and asking, "How much will this cost?" Like Tommy Sheridan, I am sick of hearing that sort of thing.
Postcode provision also applies to the most basic aids, which people in some areas cannot get. In Glasgow, people often have to wait up to two years to get an ordinary national health service wheelchair, so we have to club together and fundraise in areas such as the east end just to get someone an ordinary little wheelchair. Some people told us today that they had to wait eight months to get one of those gripper sticks that is useful for picking things up from the floor. Minister, please listen to the people. Listen to what they are saying and please lift MS sufferers off the bottom of the health pile.
I congratulate Tricia Marwick and all our guests on a superb event. It has been a fine lobby. I have two points. First, although great strides have been made in providing for the disabled, we still have a long way to go. How many times have we all found a car without a disabled badge in a disabled parking space? Going into the Hub today, which is pretty good for disabled access, I noticed an awkward bit with steps and an unsuitable lift. We must keep bashing away on access to make it much easier for disabled people.
Secondly, Donald Gorrie referred to the benefits system. We all know that that is a reserved matter, but frankly, what goes on in some cases is a disgrace. I bet that every member has seen the most appalling delays and bureaucracy causing people to lose out. If someone appeals, what do they get? They get put before a decision maker. A lot of spade work must be done on that front.
I have some practical points for the minister, which were put to me by the many people I met in the Hub. I spoke to a lady from central area, where 10 sufferers operate a home-based telephone link. It has a freephone number that people can call up—not just sufferers, but experts too—to ask for advice. I would like that service to be extended. That is a worthwhile cause; perhaps the minister can tell us how many such services operate in Scotland.
The point came across strongly that GPs do not understand what these people go through and diagnose the wrong conditions. As Donald Gorrie said, many people are told that they are suffering from a form of mental illness and, because of that, there is a catastrophic delay in prescribing drugs and telling them that they have MS. GPs should be made more aware of the condition so that they can make an early diagnosis. I ask the minister to consider those points.
I congratulate Tricia Marwick on securing the debate and welcome all those who are attending. I add my voice to what Tommy Sheridan said about beta interferon and to what Margo MacDonald said about cannabis. It is bizarre that a derivative of a hard drug such as heroin can be legally used for medical purposes, whereas cannabis, a soft drug, cannot currently be prescribed for medical purposes. It is about time that that was changed.
I have been lobbied on an issue that highlighted for me the kind of problems faced by people suffering from multiple sclerosis—the lack of continuing care and observation, especially for physiotherapy. With a condition that gets progressively worse, people can be prescribed one kind of physiotherapy and find themselves, a year later, being offered completely inappropriate treatment, because their condition has changed so much in that time that they need to be reassessed. I hope that the minister will be able to do something about that.
I congratulate Tricia Marwick on securing the debate and I am delighted that so many members have stayed to participate. This is not a party political issue and I believe that we can work together across some of our more traditional divides to make a difference. I also thank the Multiple Sclerosis Society for the lobby it organised today. I was not able to join the society today, but I recently met some of its representatives and was pleased to represent the First Minister at the millennium service that the society held in Dunblane. Through those meetings, and through personal experiences with friends and constituents, some of whom are here today, I have heard at first hand of many of the points that members have raised. I am mindful of those points and of the need for us to work hard to improve services and support for people with MS and for their carers and families.
There have been recurrent themes in today's debate and I shall attempt to pick up on them. The fact that there is a need to improve services in a range of areas and to improve awareness and information is widely recognised. When I met representatives of the MS Society, I was struck by the research, gathered directly from patients, that showed that more than 80 per cent of people diagnosed with MS were not provided with written information about the condition. That is precisely the kind of thing that must change if the NHS is to meet patients' needs effectively. I am keen to ensure that we work with the MS Society and with other patients' representative bodies to make a difference in that area.
Reference was made to earlier discussions about the need to improve the availability and provision of aids and adaptations. I agree with Michael Matheson that it is important that funding and services are organised flexibly to ensure that those who need practical support are given it when and where they need it.
I recognise the potential of specialist MS nurses for improving the care of MS patients and I look forward to receiving an evaluation of their role from the MS Society soon. I have encouraged the society to take up the question of partnership funding directly with local health boards. I have also asked the chief nursing officer to gather additional information in this area so that we can consider carefully the best way forward.
Specialist nurses are just one aspect of care that the MS Society wants developed. The society has
Several members referred to the Scottish needs assessment programme report on MS, which is due to be published soon. I also look forward to seeing that report. I stress that the status of all SNAP reports is that they are endorsed by the Executive, which sponsors the programme. They are intended to be tools for health boards to use in improving effective service delivery. I have asked my officials to pay particular attention to the SNAP report on MS when it becomes available.
The issue of beta interferon was raised by many members and I have looked into it in some detail. The Executive is committed to tackling the variations in prescribing practice that exist across the country, not in relation just to beta interferon, but in relation to other drugs and therapies too. That is why we established the Health Technology Board for Scotland, which examines the clinical effectiveness and cost effectiveness of different drugs and treatments.
The Health Technology Board for Scotland is undertaking an evaluation and appraisal of beta interferon at my request. The time scale for that appraisal, in which the MS Society is taking part, was extended recently. I hope that that work, with other work that is being pursued by the chief medical officer, will help us to continue to reduce variation across the country and that it will inform our thinking in this area.
A great amount of research continues to be done. By June 2000, there were 218 MS-related research projects in the UK, of which 14 were in Scotland. We will continue to consider proposals for research in Scotland that are made to the chief scientist's office.
I noticed that Margo MacDonald almost turned the debate into a generalised call for the legalisation of cannabis, which, I am sure, is not the wider position of the MS Society.
If I have misinterpreted Margo MacDonald's comments, I greatly regret that. I reiterate that research into that area is continuing and we will consider the findings when they are published.
A number of practical suggestions have been made, today and in other discussions that I have had during the past weeks and months. I give to colleagues in the chamber and to the people in the gallery who attended the MS Society's lobby, the assurance that we will continue to give careful consideration to the range of points that have been raised. I hope that we can work together to make improvements.
Meeting closed at 17:53.