Multiple Sclerosis Awareness Week

– in the Scottish Parliament at 5:00 pm on 22nd April 2004.

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Photo of Trish Godman Trish Godman Labour 5:00 pm, 22nd April 2004

The final item of business is a members' business debate on motion S2M-1076, in the name of Tricia Marwick, on multiple sclerosis awareness week. The debate will be concluded without any question being put.

Motion debated,

That the Parliament pays tribute to the work carried out by the Multiple Sclerosis Society in helping thousands of people with multiple sclerosis across Scotland; welcomes MS Awareness Week, 18 to 25 April 2004, as an ideal opportunity to raise awareness of a condition that affects over 10,000 people in Scotland; recognises that there remain serious shortcomings in treatment and support for multiple sclerosis in Scotland, and believes that the Scottish Executive should develop a national standard of care for people with multiple sclerosis to ensure that levels of treatment and support are the same regardless of where in Scotland they live.

Photo of Tricia Marwick Tricia Marwick Scottish National Party 5:10 pm, 22nd April 2004

First, I want to acknowledge the very real commitment of MSPs from every party to the issue of MS and to people with the condition. Indeed, their commitment has been highlighted by the amount of work that has been done over the past four years to keep MS on the political agenda through asking parliamentary questions and so on.

The Parliament previously debated MS's effect on so many people in Scotland in October 2000. That was a poignant occasion because many MSPs either contributed to the debate or listened to speeches. In fact, it was the last occasion that our first First Minister, Donald Dewar, was in the chamber. Although he did not speak in the debate, he sat and listened to members' speeches.

Four years on, I welcome the opportunity presented by this debate to assess the improvements that have been made in the care for MS patients in Scotland. However, before concentrating on the advances—or lack of them—that have been made since the previous debate, I will give a brief explanation of the illness that we are discussing.

MS is a complex disease of the central nervous system that impairs the brain's ability to transmit instructions to the muscles. Although different people are affected in different ways, in most cases the symptoms become more severe over time. So far, there is no cure for the disease.

Scotland has the highest rate of MS in the world, with approximately 10,500 people suffering from the disease. No one knows why Scotland has such a high number of MS patients, but we do know that the standard of care for people with MS remains unacceptably low. That was the case four years ago and remains the case today.

When we previously debated the issue, the Scottish needs assessment programme—or SNAP—had just published a report that stated that care for MS was

"substantially sub-optimal, inadequately resourced and unacceptably fragmented".

At that time, I called on the Executive to introduce a national strategy and standard of care across Scotland to end the injustice of substandard care for people with MS. However, only ad hoc and piecemeal improvements have been made since then. We still lack a coherent and well-funded national strategy and, when it comes to treatment, Scottish MS patients still face a postcode lottery. The Executive's response to the problem has been many warm words but precious little action.

The October 2000 SNAP report recommended that managed clinical networks should be established across Scotland for those with MS. However, as no requirement was placed on health boards to adopt that recommendation, there is currently only one MCN in the country, and that was set up only through the commitment of individual specialists in Forth valley.

The varying standards of care mean that MS patients are still discriminated against depending on the part of the country in which they live. Four years ago, members highlighted the lack of specialist MS nurses in the national health service. Since then, there has been a welcome increase in the number of nurses from seven to 14. However, that is not enough: the Multiple Sclerosis Society Scotland has argued that at least double that number is required. Indeed, five health boards provide no specialist nursing for MS at all. Moreover, the increase in specialist nursing has been possible only because of the society's financial assistance.

Scotland's 44 neurologists recently wrote to the newspapers to profess their embarrassment at the quality of care for people with MS. For example, nine out of 10 neurology patients wait 266 days for an appointment. That is unacceptable. Despite the minister Malcolm Chisholm's acceptance that

"MS specialist nurses have enormous potential to improve patients' quality of life", the Executive has still failed to provide adequate funds for such nurses.

Finally, I want to touch on the area of research. Well-funded research is vital not simply to find a cure for MS but, in the meantime, to develop treatments to improve the standard of life for people with the disease. Again, the Executive has failed to make any serious inroads into addressing the lack of research.

Photo of Mary Scanlon Mary Scanlon Conservative

Most of the member's speech and most of what we read about MS is about beta interferon, drugs, neurologists, specialist nurses and so on. Will she also confirm that, as I have discovered recently through a friend of mine, there are tremendous opportunities for help in the complementary medicine sector, and that we should not ignore that sector and concentrate just on very expensive drugs?

Photo of Tricia Marwick Tricia Marwick Scottish National Party

Mary Scanlon makes a valid point, and the methods to which she refers should also be explored alongside the more traditional methods. Where those methods make improvements, they should be considered.

The current research is inadequate to tackle a disease that affects so many thousands of people throughout Scotland. It gives me no pleasure to be standing here lamenting the lack of progress since I last secured a members' business debate on MS. However, the criticisms are all valid and the time for warm words and assurances from the Executive is well and truly over. We need action now.

Mark Hazelwood, the director of MS Society Scotland, said today:

"The absence of a National Standard or framework for MS means that the condition gets low priority. Even the most basic services for people affected by MS are often absent ... The Scottish Executive should set a standard that spells out the basics which everyone ought to get, wherever they live. We're not asking for the moon. Such standards were published in England and Wales last year, but in Scotland, as yet, there is nothing, even though we have the highest rate of MS in the world."

A national framework for standards of care is essential to end the geographical discrepancies in treatment. Such a framework must be matched by increased funding for staffing, equipment, care for those with MS and for research into the causes of MS and possible help for those with the disease. Then and only then will Scotland's 10,000 MS patients be able to achieve the standard of living that they deserve.

I hope that when he sums up at the end of the debate, the minister will give us not just warm words but a timescale for action to deal with the chronic lack of support and care for people in Scotland who have MS.

Photo of Susan Deacon Susan Deacon Labour 5:17 pm, 22nd April 2004

I congratulate Tricia Marwick on securing this important debate. During her recap of our previous consideration of the issue, she certainly brought to life in my mind several memories of that debate and the many discussions that took place at that time. I take this opportunity to reiterate my support—and I know that it is shared by many in the chamber—for meeting the needs of those with MS and their families, and our support and admiration for the MS Society Scotland.

It is a bit invidious for an ex-health minister to single out any one organisation—that might do it more harm than good—but I believe that the MS Society is a good example of an effective health lobby group. It is not too cosy with the powers that be, nor does it simply beat the decision makers around the ears every day. It comes up with constructive but hard-hitting comments, criticisms and suggestions about how to make progress, and it deserves recognition for that.

The SNAP report that was published in 2000 has been referred to tonight, and it is mentioned in the MS Society's briefing. I was in St Andrew's House when that report was published and I acknowledge that there are huge issues around how we translate such reports into practice throughout the health service in Scotland. Anyone who has ever been in or near ministerial office, or involved in running the health service, knows that that is a big issue. I do not have time to go into it tonight, but the minister might address that issue in more general terms. I do not mind admitting that I am disappointed that implementation of the SNAP report, or the development of services in line with the shortcomings identified in that report, has not gone further, faster.

Standards can be improved in different ways throughout the country, but the key point is to ensure that they are indeed improved throughout the country. I do not want to prescribe to ministers how best to secure that levelling up, but I join the exhortation to level the standards. Much of what needs to improve in support for MS sufferers and their families does not need expensive investment. Much of it is about making practical changes in the delivery of services—for example, extending the MS specialist nurse service. I have seen at first hand the fantastic work that is done in the parts of Scotland in which the health service has got that service right. I understand the frustration of people who live in areas in which the health service is not getting it right. If there is a single message that we can send out from this debate, I hope that it is that the inequity of provision should not continue for too much longer.

I want to make a couple of further observations in the short time that I have available. First, one reason why the issue of MS has not been given the universal priority throughout the health service in Scotland that it perhaps deserves is because it is one of a number of chronic conditions that, sadly, often do not get the attention that other acute conditions may get in the health debate and in the constant haggling for resources.

Secondly, I welcome the forthcoming launch of the Scottish neurological alliance. Members might be aware of that initiative from information that was sent to us. It is an incredibly valuable step forward that will bring together a range of organisations representing different conditions that have in common not only clinical aspects, but, crucially, the needs of the individuals who have those conditions. I welcome the development of the Scottish neurological alliance, which I hope will bear fruit.

Photo of David Davidson David Davidson Conservative 5:22 pm, 22nd April 2004

I, too, congratulate Tricia Marwick on bringing this debate to the chamber and I echo Susan Deacon in congratulating the MS Society. I congratulate the society on its dedication and efficiency and on the fact that it is an open group that not only lobbies, but provides information about what it does.

Tricia Marwick indicated earlier what MS is about, but she said that she was not sure why Scotland has so much of the condition. The rate in England is around 160 per 100,000; in Scotland, it is almost 200 per 100,000. A genetic factor might be influential in the condition. People of Celtic and Scandinavian origin are particularly at risk. In my own north-east area, there is a high DNA base of Scandinavian and Celtic blood, which might be the reason for the high incidence and cluster of MS in Aberdeenshire, particularly its north-east corner.

The SNAP report was mentioned earlier. It is easy for SNAP reports to come out with a statement, but we must try to get from organisations such as the MS Society information on how they would answer the SNAP report. Such information could be put in the hands of MSPs and we could add our weight to any constructive arguments that would move ministers to listen a bit more carefully.

We know that there should be rapid referrals, but we have heard figures during the debate about how long it takes to get a referral and an assessment. Referrals should be made not only by neurologists, but by multidisciplinary teams, because all sorts of other factors come to bear when people have MS.

Recently, I visited the Stuart resource centre in Aberdeen, which is a day centre for MS sufferers. I encouraged the people whom I met to engage with MSPs in the north-east to ensure that they understand at first hand from the patients and their families how best to get across the information that MSPs should consider. They agreed to run an MSP panel session in May, which they want to be as broad as possible. I hope that that local initiative will develop. The local Aberdeen branch of the MS Society is organising that session, but the society itself is obviously behind it.

The Stuart resource centre is a valuable resource to which Aberdeen City Council gives some support. The centre helps to give sufferers a sense of independence. It also organises events for them and shares information, and MS sufferers have access to various therapists there. Such services must be encouraged and rolled out across Scotland.

I mentioned clusters, which is where the postcode prescribing issue comes in if a health board has a large number of sufferers in its area. I ask the minister to explain clearly, so that we can understand better, the basis for allocations that ministers follow when they give money to health boards to support clusters of sufferers of any chronic condition, or whether it is merely left to the health boards to struggle and find their own way. Some time ago, I proposed top slicing for a specialist budget to which health boards could apply directly for extra help for specific clusters of conditions for which very expensive treatments were required, but that proposal was rejected. That was during the previous session, but I wonder whether the minister would care to comment on it.

Will the minister also say whether, to improve MS services, he has looked at the situation in Glasgow, where the health board has talked about deletion of or reduction in investment,? Will he look into that situation closely to see what is happening elsewhere?

It seems that this is not a particularly sexy subject. The MS Society originally paid for 50 per cent of the funding for MS nurses over a three-year period, in the hope that health boards would take over the total funding, but that apparently has not been carried out across Scotland. I ask the minister again to look into that matter.

Photo of Margaret Ewing Margaret Ewing Scottish National Party 5:26 pm, 22nd April 2004

I congratulate Tricia Marwick on bringing the subject of MS before us yet again. She does not do so only during MS awareness week; she has an assiduous record of keeping MS in front of the Parliament. That is an extremely important point.

All of us who are present this evening are aware of the issues, either because they affect our own constituents or because we have seen the larger picture of what is happening in Scotland. We have to look at the matter both locally and nationally. Last month, I was invited for Sunday lunch by the Buckie and district support group in my constituency. Lunch started at 1 o'clock and finished at 5 o'clock in the evening, because we were talking constantly. There were 50 to 60 people there—carers and those who were afflicted by MS—and they did not want speeches; they wanted me just to circulate round the tables, to chat to people and to listen to their problems.

It was interesting that, at every table that I went to, I received essentially the same story. People were frightened to speak out publicly in front of others, because—and I am not quite sure how to describe this—there was a sense that they did not really want other people to know too much about them as individuals. However, the point that I want to make to the minister is that I suspect that the general concerns that were expressed in Buckie are reflected throughout the nation of Scotland, and probably elsewhere too.

The first difficulty that was raised was that of access to neurologists. As Susan Deacon said, there is an opportunity to bring in other issues while we deal with the specifics of MS. As someone who works on the cross-party groups in the Parliament on epilepsy and on autistic spectrum disorder, I am conscious of the same arguments coming from those spheres. That issue must be addressed seriously. I do not expect the minister to be able to conjure up neurologists out of thin air, but nonetheless I think that it is an issue that we are all concerned about for a variety of reasons, including its impact on MS.

The other point that was drawn to my attention was that, post diagnosis, little support seemed to be given to the person who was afflicted or to their families and carers. David Davidson spoke about a north-east cluster. In the Grampian NHS Board area, for example, there is one trained MS nurse for 1,066 people. That is not a support mechanism. Given the geography of the area, that service really must be improved, and we have not really moved forward from the previous debate when, as Tricia Marwick said, we were given warm words.

It is important to recognise that the MS Society is undertaking a great deal of research. Professor Chris Linington is currently running a five-year project for the society. I understand that Professor Linington previously spent some time working in Germany and was appalled by the differences in treatment standards between the two countries.

JK Rowling has brought a great deal of attention to MS and we are grateful to her for her work. We must, as legislators, respond effectively.

Photo of Jeremy Purvis Jeremy Purvis Liberal Democrat 5:30 pm, 22nd April 2004

As always, it is a pleasure to listen to Mrs Ewing in a debate in the Parliament and I also pay tribute to Tricia Marwick for again securing time to debate this very important subject. I also welcome members of the MS Society Scotland who are in the public gallery.

I make a formal declaration of interest. Before I was elected, I advised the MS Society Scotland on communications and strategy and helped to develop its lobby of the Parliament four years ago and its work on the beta interferon campaign. I am no longer in that role; I have a different role in this Parliament, and I am pleased to say that there have been improvements in services. However, I greatly regret that those improvements have been slow and inadequate.

In the debate on MS, which Tricia Marwick secured and which took place at the time of the lobby, Malcolm Chisholm, who is now the Minister for Health and Community Care, said:

"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."—[Official Report, 5 October 2000; Vol 8, c 1067.]

Malcolm Chisholm recognised—as other members have recognised through the more recent lobby—the absolute determination of people who live with MS to campaign for others with MS for a higher level of services that are better co-ordinated and a reduction in the barriers to accessing those services.

Regrettably, those barriers still exist and constituents who live with MS in the Borders and Midlothian still have problems. I will direct a few remarks at the situation in the Borders. The Borders must not be one of the underperforming areas in Scotland in terms of services to people with MS. Scotland has the highest incidence of the disease in the world, as we have heard, but there is still uncertainty about its causes. There is no uncertainty about the fact that the NHS is not providing the services in the Borders that it should provide. The NHS recognises that and the recent review of adult neurology services within Borders NHS Board makes recommendations for much-needed improvements in services for people with Parkinson's disease, MS and epilepsy, which will involve exactly the kind of co-ordination that we have talked about.

I am aware that the matter is complex, as are other colleagues who are in the chamber or who have taken a strong interest in the matter during the past few years. The introduction to the review comments that the population in the Borders is both small and widely dispersed and that the provision of specialist services in general and neurological services in particular is extremely problematic, particularly given that a wide range of the population is affected in different ways.

I think that all members are sensitive to the difficulty of ensuring that services are properly co-ordinated, but it is vital that the health board act urgently on the recommendations in the review. In particular, the recommendation for a specialist MS nurse in the area needs to be implemented now. I have met NHS Borders and the MS Society twice in the past two months to press for improvements and real progress in getting a specialist MS nurse for the area. I am pleased that the medical team has been tasked with implementing a number of the improvements that the review suggests. The appointment of a specialist nurse would make a major difference to people's lives. If I help in that process, it will be a great satisfaction in the years to come.

We should be in no doubt that the improvements that the health board implements will raise the standard of services only to match national standards, which are unfortunately still relatively below par. There is an opportunity for the services to be developed in a co-ordinated way in the Borders, with close co-operation between the health board and Scottish Borders Council, which should share experiences and planning; it is crucial that that happens in relation to occupational therapy. Coterminosity and the single community health partnership in the Borders will make it easier to implement the review's conclusions.

I close with an appeal to the minister. Integrated services should be budgeted for and commissioned, services should be designed and delivered in co-operation with people with MS and there should be proper communication and co-ordination. Together, those measures will make a real improvement in the Borders; they could also become a national standard of care, which is vital.

Photo of Nanette Milne Nanette Milne Conservative 5:35 pm, 22nd April 2004

I, too, am happy to support the motion and to congratulate Tricia Marwick on securing the debate. I am also happy to welcome the opportunity that MS awareness week gives to improving public awareness and knowledge of a condition that affects many people in Scotland. I agree that, in many areas, treatment and facilities for patients leave a lot to be desired.

I have just checked up on the situation in Grampian, where there are four neurologists—who I presume deal with all neurological diseases—and, as Margaret Ewing said, one specialist MS nurse. In addition, there are close links with the department of rehabilitation medicine. Newly diagnosed patients are referred to the MS nurse and those who suffer a relapse go straight to a neurologist. When I received that information, I thought that the arrangements sounded reasonable, until I found out about the add-on that the waiting time to see a neurologist is a year. I am sure that that situation is not uncommon. Members should remember that MS patients are just one cohort in the neurological spectrum.

We were all impressed by the many sufferers who turned up at the Hub last November to lobby us and explain their problems. It was clear that many of them had made long journeys and endured significant discomfort to meet us. They are to be congratulated on their endurance and determination.

As a result of meeting patients from the north-east on that occasion, I had the pleasure in January of visiting the Stuart resource centre in Aberdeen, which David Davidson mentioned. The establishment of the centre was made possible by a substantial legacy. As well as being a wonderful meeting place for MS sufferers, it is a well-used facility that was greatly appreciated by all the users whom I met on my visit. It is sad that such good fortune does not come the way of all patients.

I visited another support facility, in Dyce, Aberdeen, where massage, positive pressure treatment and other therapies are offered to users at a modest charge. There is another good resource in the city, which is provided by NHS Grampian, but unfortunately it caters only for people who are under 65 years of age. Users get most upset when they are told that they must suddenly stop their attendance on their 65th birthday. I hope to visit the facility next month to find out whether there is any possibility of its being able to accommodate older patients who have found it particularly beneficial. Those facilities make a huge difference to the lives of MS patients in Aberdeen; it is just a pity that they are not available everywhere.

The people whom I met furnished me with a wish list of what they consider to be bare necessities. It is only fair that I read out the points on the list so that the minister can take note of them and, I hope, consider at least some of them. The people whom I met want prescription charges to be free for people with MS. They want to have regular contact with a neurologist, which should include the opportunity to have a magnetic resonance imaging scan at regular intervals. They want all MS sufferers to be able to have beta interferon, if only for a trial period. They want more training for general practitioners and practice nurses and they want cannabis spray—when it is available—to be offered to those sufferers who feel that they need it. They also want age-appropriate respite care for people with MS and a national standard of care.

Many of the needs of MS sufferers that I have spelled out are common to a range of neurological conditions. The message comes across loud and clear from all the groups that members meet that there is a significant lack of consultant neurological advice and that many more specialist nurses are needed. I wonder whether the lack of such nurses might eventually be addressed by the new GP contract, if GPs pull together and share specialist nurse services within primary care settings. A national standard of care of the kind that the motion requests is needed right across the neurological spectrum.

I hope that the minister will take on board the issues that Tricia Marwick's motion raises and that he will widen his consideration to include other neurological conditions that cause similar difficulties for those who suffer from them.

Photo of Eleanor Scott Eleanor Scott Green 5:39 pm, 22nd April 2004

I thank Tricia Marwick for securing a debate in which I am pleased to take part. I will speak mainly from a Highlands and Islands perspective, partly because that is my area, but also because of the high incidence of MS there. Tricia Marwick pointed out that Scotland in general has a high incidence of MS and I should add that, as one goes further north, the incidence gets higher. I believe that Orkney and Shetland have the highest incidence in Scotland. That is not just a genetic curiosity; it leads to challenges in service delivery because, as one goes further north, one gets further away from the centres of population and the specialist centres.

In the lead-up to the debate, I did what I suspect many members did—I phoned my local informant. My local informant, who happens to be a party member—she is an office bearer in the local party—is a service user who is involved in the local branch of the MS Society. She told me about a service users' discussion group of which she was a member about five years ago that looked at services and how people felt about the level of service that they were getting. She told me that there were lots of grumbles at that stage, some of which have been partially addressed.

One of the issues that the group looked at was neurology appointments. Of course, not everybody in the Highlands lives in a remote or rural situation—there are centres of population such as Inverness, which has a large district general hospital. The hospital, however, has no neurology department. While my local informant was a member of the group, neurology provision amounted to a visiting neurologist who came from Aberdeen one day a month, I think. Since that time, provision has increased and more visits are made. That said, appointments are still quite hard to get. I have no idea what the waiting times are. I was unable to find out about that before today's debate. Obviously, it is crucial to have neurology input, particularly at the time of diagnosis, but that can be quite hard to get.

My other point about the system of visits is that only the neurologist comes to do the clinics in Inverness. If the patients could attend a neurological department, they would have access not only to the neurologist, but to the other support staff in the department. I accept that it would be unreasonable to expect to have neurology departments in places where the population does not justify that provision, but I suggest that those issues have to be considered.

Other members have spoken about MS nurses. There is now an MS nurse in the Highlands, but she covers the whole of the Highlands and Islands area, which is larger than Belgium. Members can imagine that, although she is very much appreciated and liked, she does not have the capacity to make an input into individual patient's cases in any continuing way.

My local informant told me that physiotherapy is another big issue and that it has not improved over the piece. I understand that physiotherapy tends to be offered only at the time of diagnosis, when patients tend to get a burst of it, although there might be other short bursts if they have an episode of deterioration. My informant told me that people need to be given constant physiotherapy in order to prevent deterioration and to keep them as active and mobile as possible. That treatment is not available, because there is not the capacity in the NHS to provide that level of service.

Another issue that my informant raised was funding for MS therapy centres. A centre in Inverness offers different treatments and has a hyperbaric chamber. I know that some people are not too convinced of the benefits of that treatment, but patients feel that it offers relief. Although the centre also offers physiotherapy, people have to pay for it. I think that the charge is £7 a shot, which is quite a lot for someone who is on benefits. Counselling is also offered, which is an important service for some patients, as well as hairdressing, although, again, the full appointment costs have to be paid. I should say that the ratio of women to men with MS is 2:1. I presume that the reasons for that are similar to those that other members have mentioned.

Therapy centres offer a service that is not available otherwise, but they are strapped for cash. The centre in Inverness gets some health board funding but that has happened only relatively recently. It fundraises constantly—pretty much every day of the year—to keep up the services that it offers. I think that that is asking a lot of the people involved.

Mary Scanlon and Nanette Milne mentioned alternative therapies, which do not have to be high tech or expensive. Nanette Milne mentioned the possible therapeutic use of cannabis. Anecdotally, some patients who suffer from distressing muscle spasms, which is part of the condition, find that cannabis relieves those symptoms. It would be tragic if those patients were to be driven to contravene a law simply to get pain relief. The issue needs to be looked at as a matter of urgency.

Although funding issues are involved, other problems could be addressed through the provision of services that would not necessarily need to be hugely expensive. Physiotherapy does not cost an awful lot of money. To be honest, physiotherapists are not paid that much—not that I would want to justify that. We are talking about things that are not high tech and that should be made available. All that is needed is a bit of resource planning and management, some funding and a lot of political will. I hope that that will be found.

Photo of Murray Tosh Murray Tosh Conservative 5:44 pm, 22nd April 2004

I warmly congratulate Tricia Marwick on securing this very necessary debate. I should declare an interest of sorts, although it is of a non-material and non-financial nature. The elder of my younger sisters has MS; indeed, she is in an advanced stage of the condition. I say to Jeremy Purvis that she lives in the Borders. Paradoxically, although specialist housing could be provided for her, along with the expensive care package—albeit that that package works only because my mother, who is a full-time, unpaid provider of fallback care, is also the manager of the people who have been recruited to provide the care—the medical side of the package is erratic.

Jeremy Purvis spoke about the gaps in provision in the Borders. Many of us know about gaps in provision from our experience in our own areas. I recently attended the MS Society lobby in the Hub, at which I met a considerable number of constituents from the West of Scotland, who all had one message that they wanted to put across to their representatives. They were acutely aware that the level of service that was available to them in the Argyll and Clyde NHS Board area was not as good as the service provided by the Greater Glasgow NHS Board, which is itself not necessarily the best provider in Scotland.

I wrote a couple of letters on the matter to NHS Argyll and Clyde to press the board on issues such as physiotherapy and specialist nursing and I received constructive and sensible replies about the circumstances that the health board was in. The point was made to me that, if MS nursing was provided, it might soak up resources that could be better deployed in recruiting nurses with a wider speciality, who could cope with people with other neurological conditions. I could not argue with that in principle—except for the fact that those people are not there either, because NHS Argyll and Clyde has a very substantial financial deficit.

I understand the principle of deficits and the need to bring expenditure into line, but I make the simple point that none of the people with MS in Argyll and Clyde or their carers is responsible for that deficit. They are not responsible for the financial allocations. They want an end to the postcode provision of what they see as desirable and essential services. Those services are desirable because people want them very much and they are essential because people know that the progression of the disease can be eased or slowed by the application of appropriate treatment.

The MS sufferers know that they cannot get that, because there is a financial problem in their health board. I have no doubt that the health board would wish to provide the facilities, but it cannot. The Auditor General for Scotland indicated in his recent report that he suspected that NHS Argyll and Clyde has a cumulative deficit of £70 million. In his judgment, that sum could not be retrieved. Given the fact that the health board's financial position is so precarious, the reality for the patients—and I am sure that the MS patients are only the tip of an iceberg in Argyll and Clyde—is an inevitable clinical impact. People there are not getting services because of the deficit that the health board faces.

I do not know whether there are structural reasons for Argyll and Clyde NHS Board having such a large deficit and I do not know what the answer is. I am sure that it must be very difficult for ministers to grapple with an over-committed and overspent health board. The bottom line is that the impact will be primarily on patients. If there is a squeeze, it is patients such as MS sufferers who will find that they do not have the services.

It is appalling that, in our civilised society, we cannot find the means to give those people whose quality of life has declined so rapidly and descended to such dreadfully low levels access to the neurological treatment, physiotherapy and medicines that they need. Some way has to be found of ensuring that a level playing field is created for people in such circumstances. As their time on this earth is limited, and as the quality of life for people whose disease progresses so quickly can diminish perilously fast, we must surely do something to ensure that, in their remaining years, they are surrounded by a care package and a level of provision that gives them a sufficient quality of life.

It cannot be acceptable any more for us to allow such variations to exist, whereby people in one area look in awe at what is available in another area and say, "Why can't we get this?" It is a challenge to our national health service for us to provide standards that are nationally determined, nationally validated and nationally sustained.

Photo of Tom McCabe Tom McCabe Labour 5:49 pm, 22nd April 2004

Like other members, I begin by congratulating Tricia Marwick on securing a debate on this subject for the second time. I hope that the fact that we are debating the subject again goes some way to underline how seriously the Parliament takes this very important issue.

Tricia Marwick and other members have mentioned the work of the MS Society. On behalf of the Scottish Executive, I take this opportunity to express our appreciation of the role played by the voluntary sector, and by the MS Society in particular. It provides counselling and support for people with MS and their families, funds research into all aspects of the causes and possible treatments of MS, provides information services for health professionals, helps in the development of models of care and runs holiday respite homes. We cannot say often enough that its work is quite simply invaluable.

The Scottish needs assessment programme review report, which was published in late 2000, has been mentioned. It was initiated by an expert group of professionals appointed by the Public Health Institute of Scotland—which, as members know, is now part of NHS Health Scotland. The MS Society provided patient input to the assessment programme. On standards of care and in other aspects of service provision, the SNAP report concluded that there were wide variations in the accessibility and quality of care for patients with MS and that good standards of care were not being met throughout Scotland. It also made recommendations for improvements.

SNAP reports are intended to be tools for NHS boards to use in the planning of services. About 49 other SNAP reports, covering a wide range of conditions, have been published. It is understandable that the support groups for all those conditions would have liked the Executive to supervise the reports' implementation but, realistically, the Executive could not manage the implementation of 50 SNAP reports without making a major change to the way in which the national health service in Scotland is run. We are still convinced that service planning is best done locally.

David Davidson mentioned funding. Health boards are not left to muddle along with regard to funding. In recent years we have provided health boards with finance that is around twice the level of inflation, which is significant. The way in which we run the health service—this applies equally to some of Murray Tosh's comments—is that we leave service planning and decision making to be done locally. If members are saying that they want to change that radically, they should make that clear, but doing so would have a dramatic impact on the way in which health services are delivered throughout Scotland. We should be honest with ourselves, with the sufferers of a variety of conditions and with the support groups that, quite rightly, try to advance their cause.

Photo of Jeremy Purvis Jeremy Purvis Liberal Democrat

Does the minister agree that a national standard of care would at the very least provide guidance and information to local boards about levels of co-ordination, service planning and delivery that would be required so that the eloquent examples that Murray Tosh gave of people experiencing postcode provision of care would not continue?

Photo of Tom McCabe Tom McCabe Labour

I will talk in more detail about the concept of the managed care networks later. I do not claim that the standards of care for people with MS are up to the SNAP recommendations, but I take issue with some of the comments that Tricia Marwick made about the lack of progress. There has been significant progress.

Margaret Ewing mentioned neurologists. Between 1999, when the SNAP working group was gathering information, and 2003, the number of neurologists in Scotland increased by 17 per cent. There are now nine more MS specialist nurses in post than there were in 2000.

Photo of Margaret Ewing Margaret Ewing Scottish National Party

I have received a letter from Professor Charles Warlow of the Western general hospital in Edinburgh in which he points out that Scotland's neurologists are embarrassed by the waiting times for MS and sets out the differences between Scotland and Norway in this regard.

Photo of Tom McCabe Tom McCabe Labour

I regret the embarrassment that neurologists in Scotland have expressed. I have already said that there are more neurologists now than there were in 1999 and we will work to try to ensure that more are provided. However, the shortage of neurologists is not an exclusively Scottish problem; it is a problem throughout the United Kingdom and further afield. I hope that the neurologists do all they can in conjunction with the Scottish Executive and health professionals throughout Scotland to ease that embarrassment and to improve services for MS sufferers.

We are participating in the UK risk-sharing scheme and piloting managed care networks for multiple sclerosis. I want specifically to mention the risk-sharing scheme, as it is important. Beta interferon has a unique history that has demanded a unique solution. Uncertainty about the use of the drug meant that many patients missed out on treatment. That is why the health departments and the drug companies agreed to make the drug available in an innovative risk-sharing scheme. All MS sufferers who are considered by their neurologist to be eligible for treatment are able to receive that treatment on the NHS. As a direct result of the scheme, many hundreds of patients in Scotland are now receiving drug treatment.

The scheme has benefited people with MS not just through their getting access to beta interferon, but through the creation of new clinics and an increase in the number of specialist staff. Assessing all potentially eligible patients is a major undertaking and neurology services have to carry out those assessments without disrupting the vital work that they do in other areas. Therefore, many boards had to make substantial investment in their neurology services. Although that meant that patients throughout Scotland could not be started on treatment simultaneously, the number of sufferers who are now on treatment proves that the investment that was made is achieving results.

The motion calls on the Executive to develop a national standard of care for MS. As members will know, that would be a task for NHS Quality Improvement Scotland. We created NHS QIS as an independent advisory body, and its work programme for the financial year 2004-05 is already committed. However, to begin developing standards, the Executive is funding a pilot MS managed care network in Forth Valley that is led by a specialist nurse. NHS QIS will work with the Executive and NHS Forth Valley to develop the quality assurance framework for the network. That will take account of advice from a wide range of sources and we hope that it will encourage future MS MCNs to adopt the NHS Forth Valley quality assurance template. The overall aim is to ensure consistency of standards throughout Scotland. We are keen to work with the MS Society and health and social care professionals to develop more MCNs. NHS Ayrshire and Arran is working up a business case for pump-priming funding for one MCN, and we would be happy to consider other proposals. We are about to write to NHS Argyll and Clyde, following its bid for an MCN, with a view to taking that bid forward.

The first draft of the English national service framework on long-term conditions, which focuses mainly on chronic neurological conditions, is due to be published later this year. We have always said that we will study the draft with interest, and we would encourage NHS QIS to take on that task and consider the possibility of including the development of clinical standards for neurological conditions in its work programme for 2005-06. The final decision will rest with the NHS QIS board. NHS QIS will be helped in that task—if it is able to take it on—by the newly formed Scottish neurological alliance, which Susan Deacon referred to and which Malcolm Chisholm will launch later this month. The alliance is a group of voluntary organisations that support a substantial number of neurological conditions and which will work together towards common goals. The MS Society has played a major role in that very welcome development.

I genuinely congratulate Tricia Marwick on bringing this subject to the Parliament. I am glad to have had the opportunity to mark MS awareness week and to express the Executive's appreciation of the helpful and constructive contribution that the MS Society has made—and, I have no doubt, will continue to make—towards achieving the aim, which we all hold in common, of improving services for people with MS and similar chronic and enduring illnesses throughout Scotland.

I conclude by stressing that although we fully understand the severity of MS and fully appreciate the sincerity of the lobbying that the Executive receives in relation to the condition, we have to remember that there is a range of serious conditions for which people would like clinical standards, individual allocations of finance and specific responses. We need to take a wider approach to our health service in Scotland. That is not in any way to underestimate the seriousness of any condition; it is to say that we receive a range of requests for specific attention. As we run a health service that is devolved to the local level, and as we encourage health boards to develop services that address local needs, that conflict becomes ever more difficult to resolve.

Meeting closed at 18:00.