Epilepsy
The final item of business today is a members' business debate on motion S1M-3151, in the name of Gordon Jackson, on epilepsy. I invite Mr Jackson to open the debate as soon as the group of members who are standing in front of him has dispersed.
Motion debated,
That the Parliament notes with concern the 25% rate of misdiagnosis of epilepsy, as identified in The Misdiagnosis of Epilepsy: Findings of a Population Study (Scheepers, Clough and Pickles) and The Misdiagnosis of Epilepsy (Smith, Defalla and Chadwick); recognises and agrees that there is a need for a national framework for epilepsy, as already exists for diabetes, to improve standards of health care, and further notes that England and Wales are working towards such a framework for 2005.
I thank the members who have stayed for the debate and I am particularly sorry that Margaret Ewing cannot be with us tonight, because she and the individuals who work for her have done a power of work on the subject. She has been joint convener of the cross-party group in the Scottish Parliament on epilepsy for far longer than I have.
Why are we having the debate and why am I calling for a national framework on epilepsy? I will deal briefly with a number of answers to that question. Let no one be mistaken; this is a big issue. More than one in 200 people in Scotland suffer from epilepsy, so that at any one time 30,000 people, including 7,000 children, have what is a common neurological condition. Ten people are diagnosed with epilepsy every day and, perhaps most frightening, people die because of epilepsy. I say that because I was surprised to find that out; I had not associated the condition with fatal consequences.
The most recent UK report into such deaths has found that a large percentage of those deaths might have been preventable. That means that the mortality rate for the condition is not insignificant and we have to ask ourselves how many of the young people who die in Scotland each year because of epilepsy might have lived had better diagnosis and treatment been available.
Despite the fact that the condition is so common, there is still a stigma attached to it. People are afraid of how others will react, so often they keep the condition hidden within their family. We need to say that the issue is big and serious.
Epilepsy is difficult to deal with—there is no simple test for epilepsy and it can be difficult to diagnose. Research to which the motion refers suggests that diagnosis of epilepsy is inaccurate in 25 to 30 per cent of cases. Given that we have insufficient neurologists to serve 5 million people, diagnosis is often made by doctors who simply do not have sufficient clinical experience in the subject. Other conditions, such as heart and respiratory problems, are often mistaken for epilepsy. The trouble is that the prescribed treatment becomes highly inappropriate and wasteful. There is evidence that there is a treatment gap.
Not everyone who has epilepsy receives appropriate medication and 60 to 70 per cent of people who have epilepsy could become seizure free with the right drugs. We have the technology to achieve that, but it is not happening. Many people continue year after year on repeat prescriptions of medication that is often old and unsuitable.
I say to the minister that our epilepsy health care is simply not good enough. I mean no criticism of other places when I say this, but our health services for people who have epilepsy are on a par with what is available in countries that are just creating health services, for example eastern European nations. France has five times as many neurologists per head of population as does the whole the United Kingdom. One can wait as long as 12 months to see a specialist in parts of Scotland. Only four health boards in Scotland employ an epilepsy specialist nurse—north of Dundee there are no epilepsy nurses, epilepsy paediatric specialists or neurophysiologists. Seven out of 15 health boards have yet to consider epilepsy services or local epilepsy working groups in their health plans.
I am conscious that I am rattling off facts and statistics, but they are not lies; rather they represent the reality of what is lacking. When it comes to the treatment of epilepsy, Scotland ranks much further down the league table than it should. Therefore I call for a national framework. The Department of Health has recognised that the subject has been ignored for too long and it has agreed to establish a national service framework for epilepsy in England and Wales. It intends to draw that up by 2004, with plans to implement it not much later.
Without setting national standards, there can be no urgency for health boards to deal properly with epilepsy. What would happen if we had a national service framework? It would not be a panacea—nothing ever is—but we could expect certain things to happen. There would be more rapid referral when people first have a seizure and there would be better provision of clinics. We would have much better patient access to information. Services at primary care level would be improved by the appointment of a lead general practitioner who would assume responsibility for integrating epilepsy services in the local area. We would have regular audits of care practice and we would demand an annual review of each patient. There would be better care for those who are particularly affected; for example, there are pre-natal, post-natal and even pre-conception issues for women with epilepsy.
Gordon Jackson is talking about consistent standards for Scotland. Is he aware that a Scottish intercollegiate guidelines network guideline came out five years ago and that it has been largely ignored? Does he know that the Clinical Standards Board for Scotland does not intend to carry out any review of epilepsy services in the foreseeable future?
I thank Mary Scanlon for that information. I am aware that there are SIGN guidelines, but I do not think that that is good enough. The difficulty with guidelines, which might be good in themselves, is that they can be put on a shelf and not acted upon. The guidelines have not been effective. We need more than SIGN guidelines—we need to take the approach that we have taken in other areas, such as diabetes. We need a clearly established framework for the treatment and consideration of the whole issue of epilepsy.
I have outlined several things that I would expect from a national framework but, in a sense, those are just some of the things that could happen. The point is much more general. We need some kind of standards and equality of standards in epilepsy care throughout Scotland and within the rest of the UK. Although we have SIGN guidelines, without a national framework, we will be left further behind. In particular, we will be even further behind the rest of the United Kingdom when it puts its framework in place in 2004.
I therefore call on the minister to consider the matter seriously and to think about setting up whatever needs to be set up, so that we might in due course establish very clear guidelines and—more than guidelines—a framework for implementation. If we can do that, this cinderella condition, if I may put it like that, might no longer be thought of and treated in that way and we might see epilepsy getting the recognition that it should properly have.
I congratulate Gordon Jackson warmly on securing the debate and on the way in which he delivered his speech—with the lucidity and clarity that we expect from a Queen's counsel, if not always from MSPs. I also thank him for the kind remarks that he made about Margaret Ewing. I know that, had she been here, she would almost certainly have wanted to contribute to the debate. Margaret and Gordon have been the joint conveners of what I believe is the largest cross-party group in the Parliament and have been working together for the cause. Margaret is certainly examining the feasibility of a private member's bill to legislate for all student teachers—nursery, primary and secondary—to be trained in epilepsy first aid and awareness. I hope and expect that, when she resumes her parliamentary duties, that will be one of the first tasks to which she will set her hand.
I also add a word of congratulation to Murray Earle, who has put a great deal of work into the subject and has written an excellent research note—one of the most comprehensive that has been provided to the Parliament.
Gordon Jackson set out the need for a national framework and, in response to Mary Scanlon, he stressed the need for something more than guidelines. As has been pointed out, guidelines do not have a binding effect and need not always be implemented.
There is a lack of neurological specialists and specialist nurses in the Highlands and a large tract of the north of Scotland. It is unacceptable that there should be such wide variation in provision and I hope that the minister will address that. I pay tribute to Mary Scanlon for the work that she has been doing and which I presume she will describe later. It might not be normal party politics to congratulate people in other parties, but we should give credit where it is due. Mary has done a lot of work in helping to establish a support group in Inverness.
Part of the difficulty with epilepsy is that we do not understand it. I remember the first time I saw somebody having an epileptic fit—I had no idea what to do. I was slightly frightened by it and it was very dramatic. It happened to a chap in Church Street in Inverness. I felt totally helpless and I imagine that that is how many people must feel. If we can dispel some of the lack of knowledge of the condition by holding this debate, that is to be welcomed.
There is a stigma attached to epilepsy and it affects people in many ways. It makes them feel isolated, it can affect their employment opportunities and, of course, one practical consequence is automatic disqualification from driving for 12 months. People who live in rural locations who have had a seizure cannot drive themselves to hospital which, in the case of Raigmore, might be a long journey in any event. There is a specific need and I hope that the minister will agree that there should be a national framework. That would be a step forward. It would not be a panacea, but it would provide a genuine opportunity to make progress for people who have been ignored and misunderstood for far too long.
I am grateful to Fergus Ewing for his comments. Quite often in the Highlands people from all different parties are capable of putting party politics behind many of the health issues that we care about. When the Parliament was in Aberdeen, Tom McCabe, Gordon Jackson and I went along to the epilepsy action group meeting. I could not help thinking what my Tory members in Inverness would think of me going off with two Labour members when other MSPs were piling on to the bus to the Grampian reception. That is another example of how, in this Parliament, MSPs from all parties are capable of putting political hats aside and concentrating on issues.
As Fergus Ewing said, one of my ex-students came to a surgery I had about a year ago. She said that she had been diagnosed with epilepsy and told to go home and get on with it. She said that she wanted to talk to someone, but that there was no support group. The nearest groups were in Lossiemouth and Dundee. She did not understand the condition and was frightened to go out. She did not know whether she was able to drive. She said that she did not know what she was supposed to do, that she was scared and ashamed and did not know to whom she could talk.
We went about setting up a support group. I contacted Epilepsy Action Scotland in Glasgow, which wrote to its members. I used some of my parliamentary allowance to book rooms for the initial meeting of the group. I can honestly say that nothing in the world could have prepared me for the individual accounts of the experiences of people with epilepsy who turned up that evening. I could not even start telling members about them. I was left with an enormous feeling of having undertaken something that I could never fulfil. I had a huge feeling of responsibility because I had to address those problems.
Gordon Jackson referred to drugs. Many people said that they had been on the same drugs for 20 to 30 years. We had a visit from Dr Rod Duncan, the neurologist from Glasgow. When he heard of the drugs that people were on, he said that he had stopped using them decades ago. That is how the Highlands have been neglected.
I set about writing to the Highland health chiefs about specialist nurses and so on, but I did not get much response. I wrote to the primary care lead clinician to ask about services for epilepsy. The reply letter, which is now a historical letter in the Health and Community Care Committee, consisted of such comments as "Not a hope", "No chance" and "No comment".
Fortunately, when the Health and Community Care Committee called for evidence on a petition from Epilepsy Action Scotland, Hilary Mounfield and Dr Roberts from Dundee referred to that letter. The following week the Health and Community Care Committee was in Inverness. We questioned the local health officials on their approach to treating people in the Highlands who had epilepsy. Since then, the minister has made a commitment on managed clinical networks. The Health and Community Care Committee, in its deliberations on the budget, decided to recommend that the Executive allocate more resources for the care and treatment of people with epilepsy, given that there are 30,000 epilepsy sufferers in Scotland.
I support the emphasis on cancer, heart disease and mental health, but when priorities are being set it is important not to ignore other chronic conditions. That is exactly what has happened in the case of epilepsy. Many MSPs have talked about postcode prescribing for beta interferon. Dr Roberts said that to assess whether patients should get beta interferon would take up huge amounts of neurologists' time, which would mean that the services to those with epilepsy would suffer further.
I fully support Gordon Jackson's motion. I am delighted that he has raised the issue in a members' business debate. We need to be concerned about the 25 per cent misdiagnosis rate for epilepsy. We must support all the minister's proposals for managed clinical networks to allow equality of access and get rid of the social exclusion that people with epilepsy suffer throughout Scotland.
I am keen to support the motion, but I apologise to members because I must leave soon after giving my speech to go to a meeting in Glasgow. I say that in response to the Presiding Officer's comments earlier.
The motion is welcome and I support it. However, it is important to recognise, as Gordon Jackson and others did in their speeches, that the 25 per cent misdiagnosis rate, which is the motion's headline feature, identifies one of the starkest figures about epilepsy care. That also symbolises the whole problem of the lack of a national framework for epilepsy and the appalling lack of sufficient neurologists and epilepsy nurses throughout Scotland.
That is not unlike the situation that exists for other chronic conditions such as asthma or diabetes. Gordon Jackson touched on that point. Viewing that from a slightly different perspective from Gordon, it seems to me that we lack drivers, so to speak, in the health service to push those issues up the health agenda and ensure adequate progress on conditions such as epilepsy, which affects about 30,000 people throughout Scotland.
Apart from the personal suffering, the risk of premature death and the one third of patients who do not respond completely to the medication, there are people whose medication could control the symptoms and who could be free of seizure if they were treated by specialist consultants. The figures suggest that 70 to 80 per cent of sufferers could be in that position, compared to around 60 per cent when managed by GPs. That is not a criticism of GPs, but of the lack of facilities in the health service to deal with the matter properly.
National strategies are sometimes announced with great fanfare and then sink below the horizon without trace. The importance of a national strategy for epilepsy is that it will get the issue into the framework of health boards and decision makers. I thought that my amendment to the Housing (Scotland) Bill on the need to consider the interests of children was a notional measure and would not mean anything, but it had an effect. When subordinate legislation was considered, the matter had to be recognised because it was in the mechanism. We must go with the grain of the decision making if we are to get movement. A national framework will provide a focus for the development of epilepsy services throughout primary and secondary care, specialist centres and the voluntary sector.
Neurologists cannot be wished up from trees. As Dr Roberts, who gave evidence to the Health and Community Care Committee, said, the lack of neurologists in Scotland is equivalent not to that in eastern European countries, but to that in the third world. The potential for training neurologists will not solve the problem overnight. However, the potential for training epilepsy specialist nurses is better, because trained nurses who are already in place can go on to train in that specialism. Primary care centres and local health co-operatives might be able to provide a focus for development of that kind of service, which might lead to first-seizure clinics for accurate early diagnosis and effective epilepsy review clinics.
Epilepsy is not only a personal issue for those who suffer from it; it is said to cost the UK around £2 billion annually through lost employment and lost opportunities. The major cost to employers, individuals and the country could be dealt with by a relatively small investment and, equally important, the organisation of investment.
Hilary Mounfield of Epilepsy Action Scotland summed it up well when she said:
"The biggest obstacle is the inertia … to remove the inertia, we need the biggest energy at the beginning to get things going. We feel that a head of steam has been built up: we have the evidence, we know what to do and we have consensus. The biggest obstacle is the lack of a requirement for anybody to do anything."—[Official Report, Health and Community Care Committee, 24 April 2002; c 2598.]
That is what we need to change and what the motion is about. I am looking for a fairly positive response from the minister, if not today, then in the weeks and months to come. I support the motion.
Some of the statistics on epilepsy are rather confusing. In one place we are told that one in 130 people is affected by epilepsy, in another that the figure is one in 200 and in another that it is one in 300. The figure of one in 130 neatly illustrates the problem: there are 129 members in the Parliament, which means that, statistically speaking, one of us has or will develop epilepsy. That brings the issue closer to home.
We all know people or have met people who suffer from epilepsy. They have particular problems. There are many lifelong conditions with which we are all familiar, such as blindness, which is a very visible condition and one that most people can recognise. The broader community supports blind people through tax breaks and the widespread recognition ensures sympathy, understanding and support. Deafness can develop in later life or be present from birth. Again, there is widespread help, sympathy and understanding for deaf people. Type A diabetes is a lifelong condition and type B diabetes appears in later life. For people who suffer from those conditions there is increasing recognition, sympathy and understanding. However, epilepsy is a genuine hidden illness. It is misunderstood, and, as Gordon Jackson's motion points out, often unrecognised and misdiagnosed. It is important that we dwell on the subject today.
During my time at university, I spent three years in digs with someone who has remained a lifelong pal and who has subsequently been diagnosed with epilepsy. He cannot drive and has had to give up his job because he lives in the south of England, which involves substantial commuting. However, even before he was treated, he was experiencing seizures only every six months or thereabouts. That shows that relatively mild epileptic conditions can have dramatic social and economic effects on people.
Fergus Ewing referred to Murray Earle's research, which the Scottish Parliament information centre has helpfully provided. There is great diversity in provision across Scotland. Indeed, as Murray Earle points out, Highland NHS Board is in category D when it comes to provision, which means very basic or limited services. On the other hand, my party leader and his constituents are obviously much better off, because Tayside NHS Board comes top of the tree with category A provision. However, such distinctions are arbitrary, and reflect the lack of a national framework.
Gordon Jackson is right to call for a national framework. I am sure that the minister will respond positively to the debate and other representations that she has received. I urge her not to make any framework that might be developed a rigid set of walls that encloses the problem. To continue the analogy, I believe that she should consider that framework to be scaffolding, up which one might navigate ad lib to the upper parts of the support network and which will provide appropriate support for individuals.
Finally, I congratulate Gordon Jackson on securing this debate.
I also congratulate Gordon Jackson on securing the debate and echo his tribute to Margaret Ewing. Like Fergus Ewing, I look forward to her early return to her parliamentary duties. She is one of the few members—if not the only member—who is genuinely liked on every side of the chamber. It is a rare feat for a principled politician to be liked by even her own party.
Like Gordon Jackson, I feel that the Parliament cannot ignore the constituency of people who suffer from epilepsy. Members have already mentioned that there are 30,000 sufferers in Scotland. If we include the families, carers and friends of those who suffer from epilepsy, we are talking about a very large constituency of people in Scotland. It deserves to be heard by the Parliament, which must respond to its needs.
At last night's meeting of the cross-party group on epilepsy, I was shocked to hear that 100 people die from epilepsy every year. Moreover, 50 of those deaths could have been avoided if only the kind of services that could have reacted to such an incident had been in place. It would be a terrible blight on the Parliament's reputation if we allowed such a situation to continue.
It is important that we do something about epilepsy. It is not just another medical condition. Other members have referred to the social stigma that is attached to epilepsy. On a video that was shown at the cross-party group meeting last night, I saw an epileptic seizure for the first time ever. It is a very disturbing and frightening thing to witness. At the meeting, I also discovered that many people who witness a seizure do not even understand what they are seeing. They think that the person is drunk or is suffering from mental illness; they do not realise that they are witnessing a seizure and are frightened or even repelled by it. In fact, one professional talked about youngsters at school who not only suffer from seizures but are then bullied by other schoolchildren because of it. That reaction arises from the ignorance, prejudice and fear of those children. We face a big job to bring epilepsy out into the open and to get the public to understand what they might be dealing with.
We also heard that although some employers are very good, others will not even consider taking on someone who suffers from epilepsy because they believe that he or she will not be able to cope with the situation. The Parliament has a big responsibility. Indeed, the Executive has a big responsibility to listen to the Parliament and to do something about the appalling situation that we find ourselves in. The national health service provision has rightly been described as third world, not by me but by some of the leading neurologists who operate within the system.
Gordon Jackson mentioned that France has five times as many neurologists as we have. I could cite other European examples such as Italy, which has 21 times as many neurologists as we have. We must ask ourselves why the situation exists, why we have not addressed the problem and why we have allowed Scotland to slip so far down the league that such third-world comparisons can be made about us.
Mary Scanlon said that, bizarrely, Scotland leads the world in respect of SIGN guidelines, which give advice and guidance to health boards as to the kind of services that should be in place for people who suffer from epilepsy. However, it is no use having guidelines if those guidelines are never implemented. The trouble is that the Executive takes the position that it is not up to it to decide what services should be provided locally; it believes that that is a matter for the health boards.
As long as that situation exists, health boards can ignore the SIGN guidelines and do nothing. There will be no comeback. I do not necessarily blame the health boards. If every guideline issued by the Scottish health department were to be fully implemented, an awful lot of resources would be needed. Health boards must make tough choices about how to spend their resources locally.
That is why it is absolutely necessary that we follow England's example. I do not normally advocate that Scotland should follow England's example—the Scottish Parliament was set up to do the opposite of that—but England is well ahead of us in respect of epilepsy services, as the chief medical officer in England was persuaded to set the national service framework for epilepsy. Plans must be completed in 2004 and thereafter implemented by the health authorities there. They will be required to meet the standards that are set down by the framework.
We need such a framework in Scotland. Without the requirement of health boards to follow standards, they will continue to ignore the good guidelines that have been laid down, not because they are callous, but because they do not have enough money. We cannot allow that situation to persist. If we are serious about doing something for people who suffer from epilepsy, we must follow England's example. There must be a national service framework and national standards that all health boards will be required to meet.
I congratulate Gordon Jackson on securing this debate and Epilepsy Action Scotland on its work. Many members are using briefings that have been obtained from EAS.
Recently, I attended a question-time panel in my constituency, which was set up by the local Perth and Kinross epilepsy support group. Mary Scanlon is trying to ensure that a support group works well in Inverness. An enormous amount of work is done behind the scenes to try to make awareness of the condition greater. Dr Richard Roberts was there—I assume that he is the same consultant neurologist who works at Ninewells hospital and whom other members have mentioned—and he talked about epilepsy as more of a symptom than an illness. Epilepsy can be triggered by many things and the objective is to try to manage the symptoms.
How little I and others knew about the condition was interesting. Like everybody else, I knew that a person's having epilepsy meant that they had greater or lesser fits—fits do not have to be the massively disturbing type that members have described. I knew that driving restrictions could be imposed because a friend of mine had recently been diagnosed with epilepsy, which meant that he lost his licence. I had not absorbed that epilepsy would have that impact. Equally, it was only through my friendship with that person that I understood that epilepsy could develop in adulthood. I had always thought that people either had or did not have epilepsy and that one could not get it as an adult. We need to remember that any one of us could have epilepsy for a number of reasons at any time in our lives.
I suspect that I was at one with the vast majority of people in not realising that epilepsy can kill. When we realise that, we realise how incredibly important the issue is. Moreover, I did not realise the extent of employment restrictions or the extent to which people's lives and socioeconomic circumstances can be directly affected.
If we are being honest, we admit that we all have a certain degree of ignorance about the matter. Epilepsy has been in the shadows. It is important that it is brought out of the shadows—to use a phrase that EAS has used.
There is a patchwork of provision. The situation in Tayside has been mentioned. The panel discussion in my constituency made it clear that we have better provision than any other area. That is probably down to an accident of interest: the consultants in Ninewells happen to be interested in epilepsy, so they are driving provision in Tayside that is not happening elsewhere, perhaps because consultants elsewhere do not have that particular interest. It is unfortunate that health care provision in Scotland depends on that kind of accident of interest.
I say to the minister that we must eradicate the accidental basis of provision, which is basically what it amounts to. A person who has epilepsy does not wait long to be seen in Tayside, but in Forth Valley it is a whole different ball game. That is profoundly unfair and it must be addressed.
I congratulate Gordon Jackson on securing the debate. I speak as secretary of the cross-party group on epilepsy. I have held that post since its formation.
Margaret Ewing is absent, but I congratulate her on all the hard work that she has done, especially her cross-party work. She has involved my colleague, John Bowis, the Conservative member who speaks on health in the European Parliament, who has also been proactive. The respect in which the cross-party group is held is largely due to the work of Margaret Ewing from within the Parliament, and the work of others from outwith the Parliament.
Throughout the past three years, Epilepsy Action Scotland has lobbied and presented its concerns to all of us with a high degree of professionalism. What we have heard today, which has been said with genuine passion, we have heard before. I am not trying to do down what has been said; I am pointing out that the issue is a recurring one—it has not gone away. Epilepsy Action Scotland has shown what good lobbying is all about. The fact that so many members from all parties have asked for the same thing is proof of the good work being done by Hilary Mounfield and Alana Parker. It is now time for the Executive to start to deliver. In short, the gloves are starting to come off.
Unfortunately, epilepsy services have not improved across the board in the past four years. Many of us remember the debate that we had in the Parliament when it met in Glasgow, more than two years ago. Many of the points that have been raised today were made then, too. That does not give me much confidence.
On Monday, I received an answer to written parliamentary question S1W-26014, in which Frank McAveety, the other Deputy Minister for Health and Community Care, rejected our calls to introduce a national framework specifically for epilepsy. However, his response stated that the Executive
"is working towards the development of managed clinical networks".
If that is the case, I ask the minister whether we can have a timetable and targets. Let us get something concrete, so that we can get some momentum. It is not good enough to say, when there are so many other priorities in health care, that we are working towards something. Time is running out.
Many demands on the Government are rejected on the basis of reasoned opinion. We may disagree with the opinions, but they are reasoned. I have yet to see any reasoned opinions from the Scottish Executive as to why it is rejecting our calls for a national framework for epilepsy. It is not much to expect. We are not asking for massive pots of money or huge financial commitments: we are asking the Executive to say that it is not good enough only to bolster the SIGN guidelines and that there should be monitoring to see what progress is made. We are asking the Executive to ask the health boards to audit their services and state why they are not treating epilepsy, as the condition is being proved to be more and more serious for some people.
Postcode provision is increasingly common. Roseanna Cunningham is right to say that if somebody with epilepsy lives in Tayside, they are fine. If they happen to live in Glasgow, they are all right. At a dinner that Epilepsy Action Scotland held, I met the specialist in Grampian. It was his first meeting. Epilepsy Action Scotland should be congratulated on bringing us into contact. I know that I will be in contact with him—and, I hope, he with us—as much as possible.
We ask that the cross-party concern about how epilepsy is dealt with in Scotland be translated into a national framework. As I have said, the services throughout Scotland are an example of postcode prescribing. We are not asking for massive commitments of money. We are asking for action to be put behind the priority that the Executive has given to the treatment of epilepsy. It is not a difficult issue. If we can have such a framework for all the other services, why can we not have one for epilepsy?
We need a uniform service and services must be mapped. When I asked the Executive how many specialist nurses there are in epilepsy, it did not know. How can a network be run if the Executive does not know what assets are at its disposal?
It is time that we started to force the pace. We need a uniform service. People who have epilepsy need and deserve a better service. People such as Richard Roberts, who bashes his pan out for epilepsy and attends every meeting about epilepsy that he can throughout Scotland, deserve better provision and better support. We MSPs and our constituents deserve a better service. I call on the minister to reverse her view that we should not have a national framework. She should at least come half way and give us some targets and timings for a managed clinical network. Let us congratulate Epilepsy Action Scotland and hope that, in future, it sets an example of ways in which we can achieve our goals.
Members have had quite a lot to say on this important subject. I will not be able to call every member who has asked to speak unless we extend the debate. I am therefore minded to accept a motion to extend the debate until 5 past 6, if any member cares to move such a motion.
Motion moved,
That under Rule 8.14.3, the debate be extended until 6.05 pm.—[Fergus Ewing.]
Motion agreed to.
I apologise to the staff if that inconveniences anybody.
I, too, apologise in advance to the minister. I wanted to hear her winding-up speech, but I have another appointment.
Margaret Ewing deserves special congratulations on her many years of work on this subject, and I am sure that Gordon Jackson's powerful speech has moved the agenda along. As for Mary Scanlon, her dedicated work in the Highlands—as a pioneer, setting up groups—has been exceptional. No one could envy Mary for being the only representative of the Highlands on the Health and Community Care Committee, as we have come up against virtual blockades time and again involving health in the Highlands, which is a blank area for certain things.
Stewart Stevenson said that the Highlands are in D category for epilepsy services. When the Health and Community Care Committee visited Inverness recently, we discovered that the Highlands are in virtually no category for chronic pain services. Certain conditions seem to have been airbrushed off that part of the map. Perhaps there should be warning signs at the edge of the road approaching the region: "If you suffer from these conditions, do not enter" or, "Do not take up residence here." We cannot allow such a lack of provision to persist in that very large part of Scotland.
I am sure that there is good will in the area. Mary Scanlon and I, among others, found that the doctors from Highland Health Board who gave evidence were very willing to talk to us afterwards and to look for a way forward. Nonetheless, socks must be pulled up rapidly to help epilepsy patients. A national strategy is an absolute essential. Every time I hear the word strategy, a clammy hand clenches some part of my anatomy and the fear rises that something will be buried in a time capsule under the floorboards. However, Gordon Jackson certainly does not mean that to happen; I am sure that he wants a rapidly arrived at strategy.
As Mary Scanlon said, the Health and Community Care Committee has already acted with urgency. We are rather proud of the fact that, in May, the committee voted unanimously that the Finance Committee should be asked to allocate some of the new health money to epilepsy services. I hope that that money will be granted along with new money for chronic pain services. If so, the cross-party group on epilepsy—some members of it are here tonight—and the charities that are involved must have a say, along with the appropriate ministers, in how that money is spent. It is essential that people with real, practical, hands-on experience are involved.
I shall finish by referring to some of the deficiencies in the system. Only three out of 15 health boards in Scotland adhere to SIGN guidelines on epilepsy. Patients who suffer from epilepsy should get an annual check, but they do not—on average, that happens once every three years. We also know that people die even in their sleep.
There have been five Government reports over a 50-year period drawing attention to the terrible neglect of epilepsy services, but there has been little or no action. One of the great things about the Scottish Parliament is that there is immense good will, heart and a desire for real work. We have the will to right the political wrongs that have been done to epilepsy patients for many generations.
I congratulate Gordon Jackson on securing this debate about an illness that is, as has been said, a cinderella condition.
It is reckoned that about 3,000 people in the south of Scotland suffer from epilepsy. As has been said, there are no specialist nurses and no epilepsy neurologists in that area. Those 3,000 people are not getting the specialist treatment they require. That can lead to the high number of misdiagnoses, which the motion refers to, that can cause huge problems. I do not know why we do not have specialist nurses, given that we know the impact that they have in relation to heart disease, multiple sclerosis and Parkinson's disease. Specialist nurses not only treat people but educate the primary and secondary care professionals. They are a terribly important ingredient.
Supporting counselling has been mentioned. Somebody quite close to me was diagnosed with epilepsy and did not tell me for quite a while. They simply had to deal with the condition even though it did not just prevent them from driving but caused them to give up university. They were put on medication that was pretty hit and miss and made them sleep most of the day. Medication is a huge problem for people with epilepsy and the amount of trial and error that is involved can be incredibly disruptive to someone's life. I was therefore interested to hear about the importance of the review of medication. It is dismaying to hear that some people are on courses of medication for years without review.
The training of teaching staff is another important area that must be addressed, but I do not know whether it has been addressed at all.
Recently, the Scottish Executive published the "Scottish Diabetes Framework". It is an excellent document that if implemented constructively and with adequate resources—again we hit the wall of resources—would introduce a sea change in the way people with diabetes are cared for in the NHS. As the motion says, we need to develop a national framework for dealing with epilepsy so that we can get away from patchwork provision, postcode prescribing, hit-and-miss medication testing and the isolation that many people with epilepsy suffer when they have to deal with the problem on their own.
I am glad that we have had this debate, if only because the subject affects someone I know.
I will let David Davidson in for one minute.
As a professional pharmacist, I listened with interest to the debate and to what was said in last night's meeting of the cross-party group on epilepsy. One obvious measure that could result in savings to the health service and benefits to sufferers is the review of drugs. I suggest that community pharmacists collate records of the drugs that they dispense, as many of the drugs are old-fashioned and debilitating and newer treatments are available. If support is needed for the framework, why not use the pharmacists? Furthermore, why not push hard for a better use of statistics centrally in the Executive, so that the Executive can come to grips centrally with the problems? The need for that is manifest in almost every health debate that we have and epilepsy is a prime example of an issue on which the Executive could take positive action.
I am obliged to the minister for agreeing earlier to have the debate extended and I call her to respond to the debate.
I congratulate Gordon Jackson on his success in obtaining the debate. It is clear from the number of members who stayed in the chamber and took part in the debate just how seriously the issue has been taken by the Parliament and is being taken by the Executive.
The two studies on misdiagnosis that Gordon Jackson's motion refers to were carried out in England. However, we are aware that the situation in Scotland is no better. Epilepsy can be difficult to diagnose, as everyone accepts. It is of utmost importance that people who have epilepsy should be identified and treated at an early stage. The reason is simple: 70 to 80 per cent of people with epilepsy can lead completely normal and productive lives if they have been diagnosed correctly and put on appropriate medication. It is equally important that people who do not have epilepsy are not given inappropriate medication and that the pressures on NHS epilepsy services are not compounded by the fact that those services have to deal with people who do not have epilepsy at all.
The rewards and benefits of early and correct diagnosis are great and a huge incentive for us all to strive for continuing improvement while acknowledging that we have no magic wand to wave and no immediate panacea. The proposed English national services framework, for example, to which the motion refers, will not be in place for another three years.
Members have suggested that the Executive introduce its own national services framework for epilepsy. Christine Grahame mentioned the framework for diabetes as an example. The support groups for many other chronic conditions—multiple sclerosis, Parkinson's disease and chronic fatigue syndrome/ME, to name but a few—have also called for their own frameworks. It is clear that the diabetes framework has been widely accepted and it may well serve as a prototype for other conditions—we do not rule that out.
One of the most important parts of the "Scottish Diabetes Framework" is the section that deals with the future planning and management of services. As that section makes clear, the goal is to develop managed clinical networks for diabetes services in each NHS board area. Those who represent the interests of patients with epilepsy, such as Epilepsy Action Scotland, also consider managed clinical networks to be a way ahead, as do the health professionals who provide the services. There is already a synergy between what we are doing for diabetes and what is in train for epilepsy. Indeed, a number of NHS boards are actively exploring that approach, including Ayrshire and Arran, Highland, Greater Glasgow, Lothian and Tayside. I have listened closely to members' comments on the issue and will make further inquiries.
The Executive is keen to do whatever it can to encourage such developments, which fulfil the commitment in "Our National Health: A plan for action, a plan for change" to work with patient support groups to ensure that the needs of those with chronic conditions are met effectively.
On managed clinical networks, will the minister also consider a national centre for assessing young people with epilepsy and behavioural problems? I understand that those young people have to be sent to England, a process that takes six weeks and costs more than £25,000. Will the managed clinical networks deal with the high percentage of those with learning disabilities who also suffer with epilepsy? Will the impact of their epilepsy on their behaviour be examined?
I am not aware of such a proposal, but I will make further inquiries.
Let me explain what I expect the managed clinical networks to do for us on epilepsy. Epilepsy is a particularly promising condition for which to develop MCNs because of the extent to which it already satisfies the core principles that underpin all MCN development. I will illustrate that point with a number of examples.
One of the core principles of MCN development is that patients must be involved in the management of the network. Epilepsy Action Scotland exists to provide a powerful voice on behalf of patients with epilepsy and has been actively involved in promoting the MCN approach. Those core principles include a commitment that the networks must operate in accordance with a documented evidence base, such as SIGN guidelines. As Mary Scanlon said, there is a SIGN guideline on the management of epilepsy. That guideline is being revised and should be ready by the end of the year. I hope that it will take on board some of the complaints that were made about it, but epilepsy MCNs will have the required evidence base. MCNs also have an important role to play in raising awareness of the new SIGN guideline and in making sure that it is implemented through local protocols.
By linking all the points at which a service is provided to patients, MCNs will also tackle concerns about equity of access. The networks will aim to ensure that as many of the elements of the service as possible are provided close to the patient's home. Where more specialist advice or treatment is needed, there will be clear protocols for obtaining it. That process will be greatly assisted by family doctors and hospital staff working as part of the same network.
Will the minister take an intervention?
I will not take Ben Wallace's intervention, because I have another couple of pages of my speech to read and I am running out of time.
The authors of the recent articles on the misdiagnosis of epilepsy believe that part of the solution lies in the development of close links between neurology and local primary health care services. Such working across the barrier that has traditionally existed between primary and secondary care is at the heart of MCN development. Piloting MCNs for epilepsy services should help to resolve the problems that exist with diagnosis.
The Executive is keen to encourage the development of pilot MCNs for epilepsy services. We want Epilepsy Action Scotland, the clinicians and NHS boards to take that work forward and we stand ready to help with that process.
The debate has been most interesting and has demonstrated the great interest in epilepsy that exists in the Parliament. Before I became a minister, I was a member of the cross-party group on epilepsy, as I live with epilepsy on a daily basis. My husband has epilepsy and was diagnosed when we were youngsters at university. At the time, we did not know what epilepsy was, so I recognise some of the points that were raised about the uncertainty and disadvantage that people can feel during the diagnosis process.
I am glad that I have had the opportunity to say more about how the Executive will approach this difficult condition and how we will seek to encourage and assist those who have epilepsy to receive the treatment that they deserve. I look forward to working with people to develop the proposals for MCNs to address those issues.
Meeting closed at 18:07.