Epilepsy

– in the Scottish Parliament at 5:01 pm on 17th May 2000.

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Photo of Lord David Steel Lord David Steel Presiding Officer, Scottish Parliament 5:01 pm, 17th May 2000

Members' business tonight is a debate on motion S1M-599, in the name of Mike Watson, on epilepsy. I will allow a moment for the chamber to clear.

Motion debated,

That the Parliament recognises the valuable work of the Glasgow based Epilepsy Association of Scotland, notes that approximately one in 130 of the population has epilepsy and agrees that an appropriate level of health care throughout Scotland for people with epilepsy is a matter of priority.

Photo of Lord David Steel Lord David Steel Presiding Officer, Scottish Parliament

Hold on a minute. [Interruption.] Order. In fairness to the member who has the debate, would those who are leaving please do so quietly, so that we can begin. That includes Mr Gallie and co.

Photo of Mike Watson Mike Watson Labour

I am especially pleased, during national epilepsy week, to have this opportunity to initiate a debate on the important health provisions for people with epilepsy in Scotland. At the outset, I should declare an interest. I am joint convener of the Scottish Parliament's cross-party group on epilepsy, which receives valuable administrative support from the Epilepsy Association of Scotland to enable it to progress its activities. Members of the association are in the gallery this evening.

The new forum of the cross-party group has brought together 44 members who wish to promote the welfare and well-being of around 30,000 Scots who are affected by the most common serious neurological disorder in the world. Before I deal specifically with health care provision for people with epilepsy, it may be helpful if I give a brief outline of the prevalence of the disorder and touch upon its consequences for those people whose lives are directly affected.

As the motion states, more than one in 130 of the Scottish population has epilepsy. For example, in my constituency, around 300 people are coping with this brain disorder, which involves repeated seizures. At some time in their lives, one person in every 50 will develop the condition, and at least eight new cases are diagnosed each day in Scotland. Epilepsy can affect anyone at any time, regardless of age, gender, race, sexual orientation, or ability. The condition does not discriminate.

Epilepsy is much more widespread than is commonly realised, but remains a hidden condition, which is frequently misunderstood and feared. A legacy of stigma and poor public awareness means that epilepsy remains in the shadows. We are all likely to be aware when someone has a physical or sensory disability, but we may not even notice when an individual with epilepsy experiences one of more than 20 different kinds of seizure, unless it conforms to the stereotype attack in which someone falls to the ground and loses consciousness.

Even in the third millennium, public ignorance of epilepsy persists. Because of the reactions of others, those who have the condition often deny their epilepsy or try to hide it. Further, few public figures are willing to accept the responsibility of becoming the role models that could help to dispel some of the damaging myths that surround the condition.

Having epilepsy is more than simply having seizures, or controlling them with drugs. The social, educational and employment consequences are also hard to face for individuals, their families and friends. Common prejudices persist, which can lead to some children with epilepsy being excluded from mainstream education, especially if they require rectal diazepam. In addition, many school pupils with the condition have been advised not to take part in recreational activities because of unfounded fears for their safety. Family, friends and acquaintances may become overprotective at times and worried about the embarrassment of seizures happening in public places, so people with epilepsy are, misguidedly, being prevented from leading socially inclusive lives.

Studies have shown that people with epilepsy are twice as likely as average to be unemployed, and the reasons for that are not linked solely to qualifications or any sickness or absences caused by seizures. People with epilepsy know that their reduced employment prospects are attributable, in part, to discrimination in the workplace.

The good news is that eight in 10 people with epilepsy suffer only minor problems. Their epilepsy can be controlled by medication, and new drug treatments are being developed. Sometimes surgery is an option and Scotland has an excellent reputation for being able to undertake such surgery, where costs permit.

It is important to place health care provision in Scotland in the context of the difficulties that people with epilepsy face daily. Epilepsy is notoriously difficult to diagnose. There is no simple test as there is for, say, mumps or measles. That means that other conditions, especially in older people, can be mistaken for epilepsy.

Recent research reveals a shocking statistic: as many as three in 10 people who have been told that they have epilepsy do not have it. That is a frightening level of misdiagnosis. One can only imagine what the public outcry would be if the same ratio of people who were told that they had cancer did not have the disease.

To assert that general practitioners are not specialists in epilepsy greatly understates the case. Incredibly, in six years of training, they receive only one afternoon's training in epilepsy. British medical schools and the British Medical Association should give urgent attention to that unacceptable situation. GPs can refer patients for tests and expert diagnosis but, in some parts of Scotland, the waiting time to see a neurologist is almost 12 months.

Given that it can take up to two years to help a patient become seizure-free with a variety of anti-epileptic drugs, access to specialist care is crucial when the seizures begin. Early medical intervention is vital to ensure that further damage to the brain is prevented, yet NHS accident and emergency staff are also given minimal epilepsy training, although they have to deal with four in 10 people who present to hospital following their first seizure.

That reflects the fact that epilepsy has always had a low priority for health care planners. For years, it has been a cinderella condition that has been given too little funding and service provision. Of Scotland's 15 health boards, only four have identified epilepsy in the current round of health improvement plans. Praise should go to Ayrshire and Arran, Greater Glasgow, Lanarkshire and the Western Isles boards for their foresight. The others should face up to their responsibilities now and provide the level of care that those living in their areas have a right to expect. I urge the minister to encourage those health boards to allocate sufficient resources to epilepsy care.

It needs to be stressed that epilepsy is a serious condition that, sadly, claims lives. Each year, there are nearly 100 epilepsy-related deaths in Scotland. The Scottish Executive is to be congratulated on supporting a national sentinel audit that is being undertaken this year in conjunction with an audit in England and Wales. The audit will provide valuable information on sudden epilepsy-related deaths and indicate how improving the clinical management of epilepsy might prevent further deaths.

However, medical care is only one part of the matter. Information and support to help individuals and their carers cope with the consequences of being diagnosed with epilepsy is crucial. Regrettably, as I have shown, the seamless networking between medical, social and voluntary organisations that is necessary to assist people with epilepsy is not yet uniformly available.

The Joint Epilepsy Council, an umbrella organisation that represents the views of leading epilepsy organisations in the UK and Ireland, recently produced a charter entitled "Bringing Epilepsy Out of the Shadows", which made specific recommendations about how to provide an appropriate level of health care throughout Scotland. I will outline the major points.

Patients should be entitled to accurate diagnosis and treatment. Ideally, a patient should see a specialist within four weeks of their first seizure. Health boards should be encouraged to include epilepsy in their health improvement plans. Resources are rarely given to treatments not within those plans. I would like the minister to refer to that when following my invitation to encourage health boards to review their provision for epilepsy. Health boards should consider how they might integrate the various services involved in treating patients with epilepsy so that the resources are used to maximum effect.

Local examples illustrate that primary care will deliver better services for epilepsy patients. A pilot project in the west end of Glasgow, run by a local health care co-operative, uses practice nurses in a key support role. That is particularly valuable for women with epilepsy who need pre-conception, pre-natal and post-natal counselling. Epilepsy training should be provided for all health professionals. That would enhance professional practice and, needless to say, recruiting more neurologists and epilepsy nurses would also improve services.

Our parliamentary group has already formed a close working relationship with the epilepsy unit at Glasgow's Western infirmary. Recently, a number of members visited the unit for a briefing on the clinical and specialist services available and detailed discussion was possible around the questions of effective diagnosis and options for treatment. Further visits will take place and other members might want to elaborate further on the excellent work of the unit.

It is important that the Scottish Parliament assists, by whatever means it can, in raising awareness of epilepsy issues. This debate is part of that process. Health and education are cornerstones of our parliamentary responsibilities and offer opportunities to highlight epilepsy needs. Our initial targets should include more comprehensive training for teachers in hidden disabilities, including epilepsy. Already, the Education, Culture and Sport Committee is examining the issue of the administration of medication in classrooms involving asthma, diabetes and epilepsy.

The Parliament should encourage greater awareness of the problems facing those with hidden disabilities through a public awareness campaign that includes basic first aid. The removal of medical information questions from employment application forms should be encouraged and all employers should be urged to follow the practice of the Parliament in respect of its staff of keeping health details separate until after a job offer is a made.

People with epilepsy do not deserve to live their lives in the shadows. They want a new dawn in the new Scotland. Let us help them to achieve it.

Photo of Margaret Ewing Margaret Ewing Scottish National Party 5:14 pm, 17th May 2000

There is too much to say in four minutes but I will try to be concise. Many people have stayed for the debate so it is important that they have an opportunity to speak. As joint convener of the cross-party group on epilepsy, I congratulate Mike Watson on bringing the motion before Parliament. I also thank the Epilepsy Association of Scotland for its tireless campaigning throughout Scotland and for the service it provides for the cross-party group.

Mention was made of the group's recent visit to the Western infirmary in Glasgow. I was on that visit, as was Robert Brown, who may want to mention it. I suggest to members who are not usually in Glasgow in the course of their duties that this may be a good opportunity to visit Professor Martin Brodie and his dedicated and committed team. I came away from the unit much better briefed and much more aware of the problems. Everyone will be warmly welcomed.

Mike Watson mentioned the provision of facilities. They include facilities for diagnosis at primary care level, which is particularly important, and assessment, involving specialists. We need to enhance the research and work done in many areas of treatment, now including the possibility of surgery in some cases. We need to help with children's education to ensure that they are no longer seen as failures, as is so often the case. We must remove the stigma of epilepsy in employment.

There is a need for parity of provision throughout Scotland. Having visited the specialist unit in Glasgow I wish that there was a similar unit to serve the Highlands and the Grampian area. In my constituency, Moray, 600 people are likely to have epilepsy. In the adjoining constituencies, Banff and Buchan will have 592, Inverness East, Nairn and Lochaber 646, and Gordon 608. That is based on 1991 statistics. There is no specialist unit in the area. As Mike Watson rightly said, none of the recently published health policy white papers mentions specialist care for epilepsy. Health boards' health improvement plans largely ignored the issue; only four out of 15 health boards made any specific mention of epilepsy, yet it is the most common serious neurological disorder.

Today, while we have been debating in this "dear green place", Glasgow, between eight and 11 more people will have been told they have epilepsy. As the lottery advert says, "It could be you". Epilepsy is not selective in terms of age, geography or race. The Epilepsy Association of Scotland and the joint council's requests are not large. All that is wanted is a co-ordinated strategy—simple actions to resolve real problems for people and their families.

The worldwide campaign is called Out of the Shadows, and I leave members with this thought. I recently watched again one of my favourite films, "Rob Roy". In that film, Mary says, speaking about her husband:

"My love of his honour is but a moon-cast shadow of my love for him."

Let this Parliament show our love for the people of this country by taking epileptics out of the shadow in which they have lived for far too long.

Photo of Patricia Ferguson Patricia Ferguson Labour

Many members want to speak in this debate. To allow as many as possible to do so, I ask members to keep their speeches to less than four minutes.

Photo of Ben Wallace Ben Wallace Conservative 5:20 pm, 17th May 2000

When I was asked to act as the secretary to the cross-party group, I was honoured to accept. As someone who knew little about epilepsy, I put my mind to it and learned a lot about the condition. I have a close friend who has been a sufferer of epilepsy for her entire life, and I now know what she has gone through.

I have learned of the problems that sufferers face, and of those that face the clinicians in the diagnosis of epilepsy. I have learned that epilepsy should not be a barrier and is not a handicap; unfortunately, however, it is regarded as such. Sufferers receive unequal medical treatment in the system that is set up for their care. I have also learned that many sufferers are denied work because of fears that are out there in the public perception of the condition.

Why is it that diabetes is accepted as an everyday condition in health boards but epilepsy is not? I welcome Lord Watson's motion, which expresses our desire to change the culture and people's perceptions. I commend the efforts of the voluntary agencies which carry out the work that many people think should be undertaken by the Government. I hope that the Executive will respond to our desire and require health boards to include epilepsy care strategies in their health improvement plans. I ask the minister to speak to the Minister for Finance, to ensure that, when the next round of European social funding comes, the epilepsy groups that carry out so much work for social inclusion are allowed a fair hearing when it comes to the granting of those moneys.

Let us seek a more comprehensive training for teachers, so that we can begin to change the public mindset. The fear of epilepsy is a great handicap, and I hope that my children will not have to face such dilemmas. Epilepsy is not a handicap, nor is it something to be feared. I hope that the Conservative group, the Parliament and the minister can join in the task of helping epileptic sufferers to lead a better and more equal life.

Photo of Nora Radcliffe Nora Radcliffe Liberal Democrat 5:22 pm, 17th May 2000

One of the privileges of being an MSP is having access to information. Like most people, I had heard of epilepsy but knew very little about it. I now know a lot more about it than I did.

One of the disquieting things about epilepsy is that other people who do not know enough about it include many general practitioners and health professionals. According to recent research, misdiagnosis of the condition runs at between 22 and 26 per cent. That means not only that people have been diagnosed as epileptic—with all the impact that that has on their confidence, lifestyle, employability and ability to drive a car, not to mention the impact of inappropriate drug regimes with associated costs and possible side effects—but that an unrecognised disorder is not being treated. It is obvious that careful and thorough diagnosis should be carried out by a specialist or a GP who has specialist knowledge. It has been suggested that one GP in every local health care co-operative could be designated as a specialist in the condition, to try to bring down the worryingly high level of misdiagnosis of a condition that can be different in different individuals.

There are at least 20 different types of seizure, and possibly as many as 40. Increased levels of knowledge and awareness of the condition are desperately needed. Myth and superstition surround the condition, which makes it hard for individuals and their friends and families to cope—not with the condition itself, but with the way in which other people react to it.

The level of ignorance, fear and stigma is surprising when one realises that epilepsy—as has been mentioned—is the most common serious neurological condition in the world. Its prevalence is similar to that of diabetes, but awareness of it and the treatment and service that are devoted to it lag far behind.

It is long past the time when epilepsy should have been de-stigmatised, better recognised and better treated. It is long past the time when those who suffer from epilepsy should have received informed acceptance from teachers and employers, friends and families, workmates and passers-by, medical and professional people and the general public. People should understand the condition and know how to deal with seizures. They should not react as if the sufferer is possessed by demons, which can still happen.

Knowledge and awareness are powerful tools that can dissipate ignorance and fear. I hope that this debate is the start of more vigorous deployment of those tools.

Photo of Richard Simpson Richard Simpson Labour 5:25 pm, 17th May 2000

I congratulate Mike Watson on securing the debate and on the detailed and professional manner in which he presented the facts about epilepsy. I would like to add that no one cannot have a seizure. Seizures are a matter of thresholds and all of us could, in the right circumstances, have one.

I was a general practitioner for many years and epilepsy was an area on which my practice audited itself on a number of occasions, but the outcomes were not good. When we asked patients, we found that their knowledge of their condition was poor. Their knowledge of their rights and the limitations of their rights was also poor.

Management of epilepsy in Scotland makes it evident that it is a condition that requires a holistic approach. Sufferers must be treated as individuals, but that is not happening. As Margaret Ewing said, we need a strategy to manage the condition. The issue is not entirely about finding massive extra resources—it is about a co-ordinated response. The Scottish Executive's policy of restructuring health care and the introduction of local health care co-operatives provide—as Nora Radcliffe suggested—a massive opportunity to get co-ordinated care in place in primary care for the first time. The role of nurses in that could be enormous. Through appropriate training, working to the right protocols and following guidelines, it is possible for nurses to improve enormously the condition of epileptic patients.

We must, however, recognise that there is a substantial shortage of neurologists and that neurological supervision of the condition is lacking because of lack of time. The situation has become worse in the past few years because of the success of certain treatments that have become available, such as new drugs and operative treatments. Those treatments require proper assessment in specialist centres, which would require resources.

I am concerned about the way in which some of our specialist neurological units operate. I will write to the minister regarding a couple of cases that have come to my attention recently. It is possible for Parliament to develop a strategy that will bring epilepsy out of the shadows, which is what those who are promoting the campaign for awareness want. We owe that to sufferers of epilepsy in Scotland.

Photo of Patricia Ferguson Patricia Ferguson Labour

We have only a short time remaining, but I am anxious to try to call the two members who still want to speak. They should both keep their speeches as short as they can.

Photo of Robert Brown Robert Brown Liberal Democrat 5:29 pm, 17th May 2000

We have heard a number of good members' business debates in the first year of the Parliament. They have become important in raising issues such as this. The quality of today's debate—particularly Mike Watson's introductory speech, which might be one of the best heard yet in Parliament—has been high.

Events such as the candlelit demonstration at lunch time—at least, it would have been candlelit but for the wind—and this evening's debate help to raise the profile of this issue. As Margaret Ewing said, she and I visited the Western infirmary unit a while ago. I was struck by the informality and non-bureaucratic approach, which is exactly what is wanted in a field where there are many hurdles to overcome. I suspect that such an approach does not altogether meet with the approval of the hierarchy as part of a pattern across Scotland, but it manages to achieve direct contact between the secondary health care specialists and the patients without intermediary red tape. Speed of response is important. We saw Professor Brodie's pink folders and the methods that are used to fund the regime. That regime is unique in Scotland and it may be a pattern for the rest of the country. We need to make best use of resources.

The situation in schools has been mentioned. There are some people in every school who suffer from epilepsy, asthma or diabetes. The conditions are not linked, but the need for a response and the way in which teachers can be trained to respond to them is a common feature. As was mentioned, the Education, Culture and Sport Committee is considering such response training. If there is one important step to be taken, that is it.

Let us bring epilepsy out of the shadows. This has been a superb debate and we have opportunities to make progress on the issue. If the minister can respond in a sensitive and progressive fashion, as I am sure he will, the coming weeks and months could see considerable improvements and changes that will bring relief to many people who have long been in the shadows and deserve to come out of them.

Photo of Gordon Jackson Gordon Jackson Labour 5:31 pm, 17th May 2000

Like Ben Wallace and Nora Radcliffe, I share a background of ignorance on this subject. I had no idea how many people suffered from epilepsy. When I read that 30,000 people in Scotland suffer from epilepsy and many more are diagnosed with the condition every day, I was horrified. I had just never thought about it.

I had never thought about the stigma either. I had not been conscious of just how horrible it often is for children at school, who are denied certain facilities, or for people who experience difficulties with employment as a result of their condition. People are always admitting certain things, but hardly anyone ever says, "I have epilepsy" because a stigma has been attached to it. I was unaware of that.

I welcome the debate and I am glad that Mike Watson has been able to draw the matter to our attention. It will be a start in increasing public awareness; I am sure that I am not uncommon in my ignorance. There is also a need to increase awareness among teachers and to ensure that they are properly trained. That is happening, but it needs to happen more. We must encourage teachers to recognise often shadowy, hidden disabilities such as epilepsy.

There is also a need, which again surprised me, for greater training among health professionals. In my ignorance, I would have thought that general practitioners and other health professionals would know everything about epilepsy. Even there, however, there is a need for training. If this debate starts that process, I will be delighted.

I am also delighted that representatives from the Epilepsy Association of Scotland are in the public gallery. Their office is in the Govan constituency. I went to see them and, in my ignorance, I learnt a great deal. I became aware that many people are working under the cosh, if they will allow me to say that, and doing everything they can although they are constantly under the pressure of not being properly helped and funded. Other members have said that to both ministers, the man and the woman—I think that the man one is going to answer this time. They have been told what is needed and I shall not add to that. However, I hope that they will be able to respond positively and support the association and the people who need the condition to be recognised and properly dealt with.

Photo of Iain Gray Iain Gray Labour 5:33 pm, 17th May 2000

I am, as Gordon Jackson put it, the man minister. I am well aware of the contribution of the Epilepsy Association of Scotland and its partner organisations toward enhancing awareness of epilepsy in Scotland and improving services—as is Susan Deacon, who has met representatives of the organisation. In November last year, she addressed a Scottish Executive funded symposium on epilepsy organised by the EAS. I know that she joins me in endorsing all that has been said—most recently by Gordon Jackson—in praise of the work of the Epilepsy Association of Scotland and its partners in the Joint Epilepsy Council and of all that they are doing to improve the public perception of epilepsy.

As every member has said, epilepsy is not an uncommon condition. As Mr Watson correctly said, an estimated one in 130 of the population has the condition. The great majority of them—70 per cent or more—will lead full and productive lives once they have been assessed and started on appropriate treatment. Mr Watson made an interesting point when he said that that must mean that there are people around who could be role models for others but who, for whatever reason, feel unable to come forward. As Margaret Ewing said, it is possible to go into history to find role models. The three that I came up with are Julius Caesar, Peter the Great and Byron. I am not sure they are role models for a normal life, but the point is that it seems that only by reaching back into history do we find role models. There must be role models around now, which would help.

Epilepsy still seems to inspire fear and hostility in some people. It is difficult to imagine why. Epilepsy is not contagious and a person having a seizure is not likely to harm anyone else—the stigma attached to it is irrational and rooted in the ignorance and superstition of the past. There is no place for it in the Scotland that we want to see.

As members are well aware, the current clinical priority areas in Scotland for physical illnesses are coronary heart disease, stroke and cancer. They are the big three killers and they must be tackled first. We do not propose to add epilepsy to those clinical priorities, but that is not to say that we neglect the condition or consider it unimportant.

There has been a considerable drive in the NHS in Scotland to improve treatments for people with epilepsy. One of the initiatives that we can take pride in is the Scottish intercollegiate guidelines network, known as SIGN. SIGN guidelines bring together all the evidence about a particular condition and present a digest of best practice.

A SIGN guideline, the "Diagnosis and Management of Epilepsy In Adults", was published in 1997. It covers nine key topics, such as how to diagnose epilepsy, when to start treatment and choice of first drug. We are not complacent: the guidelines can be improved. Arrangements are now in hand for revising and updating the guidelines, which will be distributed throughout the NHS. I hope that that provides some of the momentum that Mr Watson called for to ensure wider adoption of good clinical practice throughout health boards and health trusts.

We are also ready to learn from work done elsewhere. One of the last publications of the English clinical standards advisory group was a report on epilepsy. We have made arrangements for the executive summary of the report, with the information that the whole document is available on the Department of Health website, to be distributed to the NHS in Scotland.

We expect both publications will be of interest to health boards and NHS trusts in reflecting and planning the provision of services for people with epilepsy in their areas.

Photo of Margaret Ewing Margaret Ewing Scottish National Party

I am interested in what the minister is saying. Can he give us a schedule for when the new guidelines will be published and available throughout the health service?

Photo of Iain Gray Iain Gray Labour

The revision of the SIGN guidelines is in hand; it should not take an undue length of time.

The English clinical standards advisory group report is available and arrangements for its distribution are under way. I am glad that Mrs Ewing intervened, because I wanted to say that the points she raised earlier—about patient-centredness and equality of access—run through the advisory group guidelines. I hope that those two publications will provide momentum in bringing about the improvements for which members have argued.

Good communications between primary and secondary care are essential, as Dr Simpson said. We are seeking to promote the concept of managed clinical networks, which will benefit people with many conditions, particularly epilepsy. I know that managed clinical networks do not sound as exciting as some advances in health care, but they are a powerful way of redesigning services so that all the points at which patient care is delivered are linked. They cross traditional boundaries between primary, secondary and tertiary care and bring together all the health care professionals involved in delivering the service, which is extremely important when dealing with a condition such as epilepsy. Not only are clinicians around the country exploring the idea; the Epilepsy Association of Scotland has signalled its willingness to play an active part in the development of services. Its engagement is both crucial and welcome.

We should not forget those whose epilepsy is associated with serious disabilities or learning difficulties, or both. The Scottish Executive acknowledges that without the extensive care provided by informal carers, more people would need support from the statutory services to remain in their homes. The national carers strategy is one measure that will benefit the carers of people with epilepsy.

Least of all should we forget the small minority of people with epilepsy who die suddenly and unexpectedly—often very young, and sometimes without ever having had a seizure previously. That is why we are contributing to the national sentinel audit that is currently being carried out by Epilepsy Bereaved, to ensure that its work covers Scotland, too.

Our determination to advance our understanding of the condition is also demonstrated by the fact that the chief scientist office is currently funding two two-year research projects at a cost of some £277,000.

As always, we do not have time to give as much attention to this issue as everyone would like. I want to close by once again saluting the work of the Epilepsy Association of Scotland, by recognising that epilepsy is a condition that affects many Scottish people and by assuring members that we will continue to strive to improve care for those who live with epilepsy and to bring epilepsy out of the shadows. I hope that this evening represents a small step towards doing that and I congratulate Mr Watson and the cross-party group on ensuring that we have taken it.

Meeting closed at 17:44.