Health and Community Care Committee, 24 Apr 2002

Meeting date: Wednesday, April 24, 2002

Official Report 253KB pdf

---

Petition

---

Epilepsy Service Provision (PE247)

Agenda item 3 is on a petition about epilepsy services in Scotland. We welcome Hilary Mounfield and Dr Richard Roberts. You may start by making a short statement to us, although we have a series of questions to ask you, which may elicit more information.

Thank you very much. I shall try to make this short—what do you consider "short" to mean?

Two minutes.

I was told that I might perhaps have five minutes. This will be the condensed version. I am delighted to have the opportunity to speak for even two minutes and I hope to be able to answer your questions.

I am here representing not only the 30,000 people in Scotland who have epilepsy, but their families, friends and carers. The condition is not just a medical condition like any other; it has a fantastic impact on the lives of people who have it, because of the poor health care that they receive and the stigma that is still attached to it. The impact that that has on the education facilities that are available for children with epilepsy and on employment opportunities should not be underestimated. The condition has an impact in a much wider sense than the purely medical.

In respect of medical services for people with epilepsy, Scotland can truly be said to be a third-world country. Our standards of care, particularly in relation to the number of specialists, roughly equate to those in the emerging eastern European countries. There is a misdiagnosis rate of at least 25 per cent. That means that people are carrying the label of having epilepsy when they do not have it, simply because the diagnosis has been made by someone with insufficient experience and expertise. That is shocking and totally unacceptable; something needs to be done about it.

We are pushing to change services and to get epilepsy on to the agenda. There has been report after report on the scale of the problem and what the solution might be. There is no lack of evidence about what a good epilepsy service would be; indeed, there is huge consensus. I am here today sharing the platform with a clinical colleague. We work together to try to put epilepsy on the agenda. However, the sad truth is that the service that someone receives if they have epilepsy depends on the interests of one or two people, whether general practitioners or clinicians. There are only three epilepsy clinics in the whole of Scotland—one in Dundee and two in Glasgow—yet every report that has been produced has said that the key to providing decent epilepsy services is having specialist epilepsy clinics where people can be seen by someone who has enough experience to make the diagnosis. There is a lot to do.

You make a powerful case about misdiagnosis, saying that one in four people is misdiagnosed. You state that your claim that that happens because the doctors have insufficient experience and knowledge is underpinned by research. Could you give us details of the research?

I can, but I cannot quote chapter and verse at the moment. Much of the research comes from Professor Brodie's clinic in Glasgow, which is the biggest epilepsy clinic in the country. A quarter of the people who are sent to his clinic for review of their medication are found not to have epilepsy. People who have been on medication for 10 or 15 years might not have had their epilepsy reviewed until they are seen by a specialist. Those are the sorts of figures that give us our figure of 25 per cent to 30 per cent.

I take it that that is Scottish research. Are the figures borne out nationwide?

We are not much worse than England is, except that England has decided to do something about the situation. As a result of a meeting that I was involved in with the chief medical officer in England just over a year ago, moves were made to establish a national service framework for epilepsy. The plans will be drawn up by 2004 for implementation beyond that date. There is recognition in England that, without some setting of standards, there is no reason for health boards to find out how many people have epilepsy in their area. Our research has shown that they know neither whom they are treating nor whether the treatment is effective.

The level of misdiagnosis obviously works both ways and, as you have said, some people are often incorrectly diagnosed as having epilepsy and some people with epilepsy are incorrectly diagnosed as having had a panic attack, for example. Are you indicating that the training of GPs and paediatricians has been insufficient in that area? Does their initial training have to be better? Could that be done in relation to managed clinical networks or clinical governance? Are we going in the right direction?

General practitioners face a difficult task, as they are supposed to be able to cover all medical conditions. One cannot expect every general practitioner to become an expert in the diagnosis of attack disorders. One might expect that, in the future, there would be a lead GP in large group practices who would take a special interest in epilepsy, but the diagnosis would still be based in secondary care because of the expertise that is required and because of the need to access specialist investigations. A large study in Liverpool suggested that there was a 25 per cent misdiagnosis rate in relation to chronic epilepsy.

A current problem is the lack of specialists. The number of neurologists in Scotland and the rest of the UK is at third-world levels, as Hilary Mounfield dramatically put it. The number of neurologists per head of population in Scotland is tiny compared with that in any other European country. In Italy, there are 21 times as many neurologists per head and in France, which provides a good neurological service and is next to us on the list, there are four and a half to five times as many. It is therefore not surprising that people have difficulty accessing specialists.

Are you saying that, even if we got agreement today that every health board area would have a seizure clinic, for example, we would be unable to staff those clinics?

We could not staff a service overnight, but we must start to implement such a policy for the longer term, otherwise it will not happen. As Hilary Mounfield said, endless reports in the past 20 years have highlighted the deficiencies in services for epilepsy, but no action has been taken. New money is coming to the health service over the next few years and I hope that there will be an increase in the number of neurologists and specialists in epilepsy. That is absolutely necessary.

Other things can be done in the short term. We need more epilepsy specialist nurses to advise people. Those nurses can be produced more quickly. We certainly need to improve the education and training of those who are forced to take diagnostic decisions about epilepsy, but that has been difficult. As a result of the lack of neurologists, general physicians see much acute neurology in the UK. General physicians have wide interests, but they are a dying breed. Everyone is now a specialist. General physicians who are in training as specialist registrars do not receive any specific neurology training. It is no longer appropriate for people with attack disorders such as epilepsy to be referred to any old general physician.

In district general hospitals in more remote parts of Scotland in particular, some general physicians may take an interest in and will have had some training in neurology. They will be good, but the expectation now is that, if one has a neurological problem, one should see a neurologist, just as if one has a cardiac problem, one should see a cardiologist.

The idea that one goes to see a generalist has to change, but that will take time. Training a neurologist takes around 15 years, but there has been an increase in the number of specialist registrars. As long as the number of specialist registrars continues to increase, we can produce more neurologists. Training a specialist registrar takes only five years.

The issue is not just about epilepsy. Neurologists are involved in a range of issues, from multiple sclerosis to Parkinson's disease—some of us discussed that yesterday. I want to clarify what you are saying. Are you saying that, for the most part, people are being diagnosed by general practitioners who have had no neurological training at all?

That depends on what area of the country a person is in. Glasgow, Dundee and most of Tayside decided to prioritise epilepsy, no doubt at the expense of other neurological conditions. We considered that diagnosing epilepsy correctly should be a priority. We try to see new patients who are referred to us within a couple of weeks if a condition looks as though it might be epilepsy.

That is not always possible—it may take three weeks or four weeks—but we try to see them soon enough. That is how things should be, as patients often have their second fit—if they are going to have one—fairly soon after their first fit. They need to be seen and investigated urgently and a decision about treatment must be made promptly. Where neurological services are thinly provided, the waiting time for a routine neurological appointment can be up to a year. That is completely unacceptable for someone who has had a first epileptic seizure.

Epilepsy is usually prioritised, but even where it is, waiting times may be months. In parts of Scotland where there are no neurologists, such as the whole of the Highland area—no neurologists are based in Inverness or Elgin, although there are intermittent clinics—patients will be referred to general physicians for assessment and investigation. The same applies to paediatrics. Paediatric neurologists are even fewer and farther between—there are only a few in Scotland and there are none north of Dundee.

I am sure that Mary Scanlon wants to pick up on that point.

I was interested in Hilary Mounfield's comment that Scotland is a third-world country as far as epilepsy services are concerned. In your paper, you say that there are no epilepsy specialist nurses, paediatric neurologists or neurophysiologists north of Dundee. I confirm that there is nothing in the Highlands—there is not even one epilepsy specialist nurse. I set up a group because, when people are diagnosed, they are told to go home and get on with it.

My other point, which stems from my colleagues' discussion, concerns disinvestment in older, unsuitable drugs. I have found that, in the Highlands, many people who got a prescription 20 years ago are still on the same prescription. They have never seen a neurologist—they have not been asked to see one. How can we disinvest in old drugs? In addition, there has been a Scottish intercollegiate guidelines network—or SIGN—guideline on epilepsy for five years. Is that an example of such guidelines not being worth the paper on which they are written?

SIGN guidelines are remarkably good documents—indeed, Scotland has led the world in the area. I have attended conferences in other countries at which people say to me, "You are from Scotland—you have SIGN guidelines. They are wonderful things." Other people use them because they provide independent evidence.

The guidelines are not necessarily implemented, however. As Mary Scanlon said, we have had a SIGN guideline on epilepsy for five years. We just spent two years revising that guideline—a revised guideline will come out later this year under the chairmanship of Dr Richard Roberts. The guideline should be even more evidence based and stringent on what the service should be. However, will it just lie around on the shelf gathering dust, like the first SIGN guideline? The first guideline did not change practice in service.

If the Clinical Standards Board for Scotland, or a similar organisation, does not set standards, or if there is no service framework similar to the one that has been developed for diabetes—as I said, such a framework is to be developed in England—there is nothing that requires the health boards to address the problem or to recognise that a problem exists. Without that beginning, how can we move forward? We are trying to move forward. It is simply appalling if someone is on the same drug, which is probably old and ineffective, for 20 years. At the very least, everyone should have an annual assessment of their drug regime.

That certainly does not happen. We have just discussed regional centres of excellence in the context of the budget. Margaret Jamieson mentioned managed clinical networks. How does a patient in the Highlands who gets no advice or support fit into the system? How can they know what they should or should not be getting? At a recent meeting, a woman told me, "My daughter is 14, has started her periods and is still seeing a paediatrician. She has never seen a neurologist. Should I be asking for that?" How can we get through to the patients that they are not getting good value from the care that they are receiving? How can we end the postcode lottery? Are you on course for a managed clinical network? Will that address the issues?

I would be on course for a managed clinical network, but, unfortunately, it is beyond my organisation's competence to develop one. We have supported the idea of a managed clinical network since it was first mooted more than three years ago.

Everything is in the SIGN guideline. There is a shortage of specialists in the shorter term. How do we overcome that? How can we ensure some equity of care?

In the absence of standards that health boards are required to review and to monitor their services against, the situation is not encouraging. We have tried all the carrots, saying, "This is a good thing." We have provided evidence to show the scale of the problem, but there is still no requirement on health boards. Obviously, we are competing with every other priority.

Should the requirement be in the performance assessment framework?

Something like that should happen. I do not care what label is put on it. Within the managed clinical network, there is a requirement on the Clinical Standards Board to set a quality framework. That would be super, but I cannot see how to bring about that shift. We are discussing it with people in different health boards. However, even where we have discussed and examined the available services with health boards, that has not translated into new services. The response is, "This is very nice. We have done the report and listened to the patient's view, but—sorry."

Margaret Jamieson mentioned MS. I understand that all MS sufferers in Scotland are eligible for an assessment to find out whether beta interferon would help their condition. Most of us would agree with that increased emphasis on MS, but does it mean that epilepsy slips further down the list and that the skills of people such as Richard Roberts are required for MS because it has become a greater priority?

I will be able to answer that question in a couple of months. We have argued with our local health board that, if we do not have extra resources, we cannot implement the plan for MS—which we are eager to do—without detriment to current services. We have therefore applied for funding for additional neurological sessions, MS specialist nurses, additional secretarial time and a database co-ordinator. Even in our small patch of Tayside and north-east Fife, we have 1,200 patients with MS and three and a half neurologists, one of whom has a particular interest in MS. About half the patients will need to be assessed. We have a database and know about all the patients, which is pretty unique.

Are you saying that, without additional resources, you could not decide who is eligible for beta interferon?

We cannot do that without additional resources or detriment to other services.

You mentioned specialist nurses for MS. Earlier you mentioned specialist nurses for epilepsy. How many epilepsy specialist nurses do we have in Scotland and what role do they play? Is there scope not only for more such nurses, but for increasing their role?

I think that there are 12 epilepsy specialist nurses in Scotland, including those who work in paediatrics and those who work in adult services. Most of them are in Glasgow. There are a couple in Edinburgh and a couple in Dundee.

There are two in Tayside.

One post has recently been developed in Forth Valley, although I am not sure whether anyone has been appointed.

On the geographical spread throughout Scotland, we are not talking about the 12 epilepsy nurses being spread evenly across the 15 health boards; we are talking about small pockets of specialist nurses.

That is correct.

Do the majority of health boards in Scotland have no specialist nurses?

The majority of health boards do not have a neurologist, never mind an epilepsy specialist nurse.

We have covered neurologists. I think that we know where they are. Are the specialist nurses, who could play a specific, helpful role, also missing from most of Scotland?

Only four health boards have specialist nurses.

What role are those nurses who are in place playing and what scope exists for expanding that role?

The nurses can take on a number of roles. One of their most important roles is counselling patients on the diagnosis of epilepsy. An epilepsy specialist nurse is always in our clinic when we broach a diagnosis of epilepsy, because such a diagnosis has many implications. Initially, at least an hour is required to discuss those implications. After that, the nurse will visit the patients at home, see them in the home setting and see the rest of the family within the next week or two. That is a major difference in the quality of care from the neurologist saying, "You've got epilepsy. Take these pills. Off you go. You can't drive and you will lose your job." The nurses' role is obviously crucial.

The specialist nurses also provide support for many patients with drug-resistant epilepsy. About a third of patients will have epilepsy that does not respond completely to the medication and will have persistent seizures. A lot of support can be provided. The specialist nurses can reduce the number of times that such patients need to visit the epilepsy clinic. The nurses become experts in the management of epilepsy and can advise about changes in drug dosage—in other words, they can take on some of what the doctor would normally do. They will have more expertise in the drugs that are used to treat epilepsy than the GP will have. There are a lot of new drugs with which most GPs are not comfortable and not familiar.

As with other areas, specialist nurses have an important role to play. In a sense, they pay for themselves by reducing the amount of consultant time spent reviewing patients. They are an additional cost, but they allow the consultant to see more patients. Effectively, having a specialist epilepsy nurse is a cheap way for the consultant to buy time.

You have painted a frightening picture of what cannot as yet be called a national service in Scotland and you have said that many reports back up your statements. What is missing is action by the Executive. Do you know of any plans by the Clinical Standards Board to review epilepsy services in Scotland?

Funnily enough, yesterday afternoon I had a meeting with Dr David Steel of the Clinical Standards Board, at which I was told that the board has no plans to add epilepsy to its list of subjects for review. We talked about elements relating to managed clinical networks and we will certainly deal with that, but the fact is that he is waiting for a steer from the health department.

Last May, in an answer to a parliamentary question, the then Minister for Health and Community Care said that Epilepsy Action Scotland was willing to co-operate in the development of managed clinical networks, which would play a part in ensuring greater equity. On 14 February 2002, the current Minister for Health and Community Care said that he was examining the possibility of establishing a pilot managed clinical network for epilepsy, but that the only thing that had happened was a symposium.

We held the symposium.

Well, the Executive is claiming the credit.

Did the Executive fund it?

The Executive funded it, but it was our initiative.

What disturbed me was that, in the parliamentary answer, Malcolm Chisholm said that there were no plans for the establishment of an epilepsy framework. What is the reason for the Executive's resistance? You have obviously given good reasons why there should be such a framework, but the Executive just seems to be saying no. Why is that?

I wish that I could answer that question. We have presented a case that there is a poor service that needs energy and effort put into it by the people who have the power to make policy. The only thing that I can suggest is that epilepsy is one of many competing causes and that, as ever, the Government cannot risk adding epilepsy to the list of its priorities.

Last May, Susan Deacon said that the chief medical officer had been given a remit to work with patients groups to develop managed clinical networks. However, that has not happened.

We have been trying to work with individual health boards to move the matter forward. The answer from the health department is that the money is with the health boards and that, although it makes the overall policy, the decision lies with the boards.

There has been some movement. Some areas are starting to consider having epilepsy services, but that is not being translated into something that will make a difference to people's lives. Greater Glasgow NHS Board is the only health board that has allocated money specifically for epilepsy services.

That is why you argue that we need a national service framework like the one that has been agreed in England.

I would strongly support that, as it is the only thing that would create change. The health department gave us funds to conduct a large study into the implementation of SIGN guidelines in Tayside. I will not go into the details of the study, but it involved all the GPs throughout Tayside. The study showed that, on average, the GP notes of people who suffer from epilepsy mention epilepsy less than once every three years. Even in the high-intervention group, where we attempted to get an annual review going, the rate remained the same. We are preparing a paper on the study, which will be submitted soon. There is a lot of inertia. The study had to be done within three years; in the subsequent two years, quite a lot of general practices have inquired about setting up reviews and have sought advice, so perhaps change is slowly happening. However, GPs have an enormous number of competing demands and, if they are not instructed or given a financial carrot to do something, I do not think that they will.

I was going to ask the question on specialist nurses, which has been asked. On the paucity of NHS provision, it was said that there are 12 specialist epilepsy nurses who are confined to certain areas of Scotland. I recall that we were told that there were eight specialist multiple sclerosis nurses in Scotland and it turned out that several of them were financed by charities. Does Epilepsy Action Scotland or any other charity contribute to the funding of the 12 epilepsy specialist nurses or units? The Church of Scotland, for instance, has done a lot of good work on epilepsy.

Certainly—the church has a care home. Many epilepsy nurse posts in Scotland were established with charitable funding in the first instance, on the undertaking that the health board would continue the funding. Continuation of funding has sometimes been in doubt, but that is how posts have normally started up. Posts are being created in Glasgow. Another couple of epilepsy specialist nurse posts have been created that are funded purely by the health board and have not been subject to such sideways funding. The worth of such posts has been established.

Are any such posts in Scotland still wholly or partly funded by charity money? We do not want to claim that the NHS provides 12 specialist nurses if you are doing much more.

I cannot be specific about that. I think that most of the epilepsy specialist nurses are now funded by health boards, except perhaps those who work in one of the clinics in Glasgow. For years, most staff in that clinic were funded by research moneys from various sources and were not funded by the NHS.

It was said that it could take 15 years to train a neurologist and for him or her to gain proper experience. To return to Margaret Smith's question, could some managed clinical networks be more nurse led? Has there been any resistance to that within the medical profession?

I do not think that there has been any resistance to the idea of specialist nurses contributing to care; on the contrary, there has been enthusiasm.

Has there been any resistance to nurses leading?

Epilepsy nurses are concentrated where there are epileptic services and where there are specialists who have an interest in epilepsy.

So that is one way that can be gone down.

Those of us with an interest in epilepsy have campaigned for the appointment of specialist nurses. The trouble is that in regions such as Highland, there is simply nothing.

We are going to Inverness next week and I hope that that is on our agenda.

It would be useful and helpful if the committee were provided with written evidence to put more meat on the bones in respect of what is provided in each health board area. That would give us a better picture.

I want to pick up on the possible impact of MS trials on current epilepsy services, which is beginning to worry me. Have other services in other health board areas also put in bids for additional resources?

Scottish neurologists will meet on Friday and that is one of the items on the agenda. I have not yet heard what the bids have been in Glasgow and Edinburgh, but I have no doubt that there will be bids for appropriate funding. In Aberdeen, the situation is more complicated because many patients are already on beta interferon. The implications of implementing the new scheme there are much fewer, because most of the patients are already on the drug and will not require the detailed review.

Are you optimistic about the outcome of the bids for additional funding? I know that it is difficult for you to answer that question.

It is too early to say. I am reasonably optimistic. We will certainly get the MS specialist nurses, because industry will fund them for the first couple of years. All that we require is a commitment from the board that it will take up the funding thereafter. We do not want to get into the position in which we found ourselves with an epilepsy specialist nurse, who was trained up, was in post for a couple of years and was really getting stuck in when the funding suddenly ceased. In the short term, there will be quite a lot of funding from industry to support the MS specialist nurse posts. However, longer-term commitments from the boards are required.

Perhaps the committee should keep an eye on the outcomes of those funding applications and any possible impact on epilepsy services when the MS trials begin.

The evidence that we have heard shows that a number of the neurological issues are interrelated. Because of the shortage of consultants, change has a knock-on impact beyond any particular disease.

I will add to the point that Shona Robison made. Inverness, which covers a huge area, buys in the services of a neurologist from Aberdeen for three days a month. I understand that the demand in Aberdeen for neurologists' time is such that it is difficult to fulfil the obligations at Raigmore hospital. I am concerned about the testing of all MS sufferers for suitability for beta interferon because the knock-on effect could be that Grampian NHS Board says that the demands are too great in Grampian and that it cannot afford to let the neurologists go to Inverness for three days a month. The effects ripple through the system.

A certain amount of that is happening throughout Scotland. The Lothian neurologists, who go to Fife, are in a similar situation. That is an issue.

I thank the witnesses for their evidence. Is there anything else that you feel that we have not covered and that you want to put on the record, or do you feel that you have made the main points?

May I ask a general question so that we can get a clear answer from Dr Roberts and Hilary Mounfield? What are the biggest obstacles to improving services for people with epilepsy and how do we overcome them?

The biggest obstacle is the inertia about which we have spoken. It is partly a function of the ignorance about epilepsy, which is historical and widespread. In many ways, that applies to the medical profession as well as the general public. That may sound shocking, but it is a fair comment.

As you know, 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. Without some sort of standard monitoring of services or requirement for health boards to know what their services are, nothing will happen. We did a survey of services in Scotland two years ago—we can let the committee have a copy of it. Most health boards could not answer the questions because they did not know what services they had or did not have any services.

I concur with that. There are no really good services. Where there are better services, they have developed because there happens to be a clinician—a neurologist or clinical pharmacologist—who is interested in epilepsy and has developed the services. There has been no planning of services anywhere. Much more central direction is required if we are to have equity of service throughout Scotland.

Shona Robison asked for more details. Would it be possible, convener, to set a deadline for that in view of our visit to Inverness on Monday? Is it possible for the witnesses to get something in to us by Thursday or Friday?

We can give you copies of our survey because it has been published. It does not deal with the situation today, but provides a snapshot of the situation 18 months ago. In regard to your visit to Inverness, a response that I have seen from Highland NHS Board on the subject of epilepsy services and the SIGN recommendations contained phrases such as "no comment", "don't know", "we think the GPs do this" and "not a hope". The letter closed by saying that the board hoped that its comments were helpful. We can let you have a copy of that letter.

We might ask the board members whether they find our quoting that letter back at them helpful.

We will wait until we hear from you again. On Monday, we have to deal with the budget, but we can use certain points to talk about specific issues.

Some of our members are not present today, but the committee must discuss what can be done to take forward the issue in relation to the Executive, the Clinical Standards Board for Scotland and others who might be involved. We will return to that at a later date.

We have touched on the fact that there is an interrelationship between epilepsy and other neurological conditions and we have talked about the lack of neurologists and specialist nurses. Have you ever joined forces with other organisations in the same sort of field to lobby about general issues rather than just epilepsy?

Yes. A couple of years ago, an organisation called Voluntary Health Scotland, of which I am currently chair, was established. It works at the widest possible level, dealing with the voluntary sector's input to health services. I am passionately committed to ensuring that organisations work together.

A couple of weeks ago, there was the first meeting of organisations such as ours that have an interest in a neurological condition. There is a recognition that the Neurological Alliance, which is a UK body, has been largely ineffective in Scotland and that there needs to be a Scottish lobbying group. We agree that we have some degree of common cause and that it serves nobody to view our causes as being specifically to do only with the neurological condition that each group is primarily interested in. We must use our combined strength to make our voices heard, while fighting for our specific interests when we need to. We hope to work through the Neurological Alliance to strengthen its position in Scotland and ensure that it is focused not only on Westminster and is aware that, in relation to health in Scotland, Holyrood is the centre of the world.

That is useful.

I thank our witnesses for their attendance and for the evidence and background information that they have given to us and the Public Petitions Committee. We will return to this matter at a later date to discuss what we want to do with it next.

We now move into private session to deal with agenda item 4, which deals with witnesses for our consideration of the School Meals (Scotland) Bill

Meeting continued in private until 12:28.