Epilepsy

HL Deb 28 February 2000 vol 610 cc394-409

7.49 p.m.

Baroness Gould of Potternewton rose to ask Her Majesty's Government whether they are satisfied with the level of healthcare for people with epilepsy.

The noble Baroness said: My Lords, I am pleased to have this opportunity to initiate a debate on the health provisions for persons with epilepsy. In saying that, I must declare an interest as the president of the British Epilepsy Association—the leading representative organisation in the UK for people with epilepsy.

Before dealing specifically with the level of healthcare provision for people with epilepsy, it may be helpful if I give a brief outline of its prevalence and touch upon the consequences for those affected.

Epilepsy is the most common serious, neurological disorder. It is more prevalent than is normally recognised or acknowledged. More than 50 million people worldwide are affected. The World Health Organisation has approved epilepsy as a cabinet project. One person in 50 will develop epilepsy at some time in their lives. That means that at any one time 420,000 people have some form of active epilepsy. Every day approximately 82 people in the UK will be told that they have epilepsy.

Yet, in spite of its prevalence, it remains a hidden condition that is frequently misunderstood and feared. With poor public awareness, it remains in the shadows. As a consequence, people with epilepsy are sometimes at a greater disadvantage than those with physical or sensory disabilities. Children with epilepsy may be excluded from mainstream education because of their seizures, and others may be excluded from recreational activities because of unfounded fears for their safety. I am sure that we shall hear much more about the educational needs of epileptic children when the special needs and disability Bill is debated.

There are too many cases where people with epilepsy are likely to be needlessly unemployed or socially excluded, not because they lack skills but because common prejudices continue to exist. It is clear that the social disadvantage, exclusion and disability caused by the label of epilepsy can compound the medical problems and are a cause of great distress, so much so that people often deny or try to hide that they are epileptic. The Disability Discrimination Act will help but legislation will not of itself overcome prejudice. There needs to be greater public support, more awareness and greater recognition of the problems faced by people with such hidden disabilities. They need to be fully understood and taken account of.

So, what is epilepsy? Some people liken it to an electrical storm in the brain. The nerve cells in the brain fire off signals randomly, causing a communication breakdown or overload. It can develop at any age. It can have no apparent cause. It can be the result of a brain injury or it can be caused by a genetically inherited condition, the onset of adolescence or old age. Each person's experience is different, dependent on what part or parts of the brain are affected.

Approximately 80 per cent of people with epilepsy suffer only minor problems. Their epilepsy will be "controlled" by medication, and new drug treatments are being developed. Only last week there was an interesting report in the papers on the development of a vaccine which, it is hoped, will reduce seizures. Seventy-five per cent of epileptics could become seizure-free or suffer only short-lived or infrequent seizures by pharmacological means, provided that they are guided by specialists. A few sufferers have intractable epilepsy, where neurosurgery is an option. In addition, 30 per cent of children with severe epilepsy may also have learning difficulties. That means that diagnosis is a critical factor, complicated by blackouts which have many causes. It is hoped that a new digital recorder will eliminate one of those factors, making diagnosis more accurate as recent research estimates that approximately 25 per cent of cases are wrongly diagnosed. That results not only in highly inappropriate and wasteful treatments being prescribed; it can also have important social and psychological implications for the wrongly diagnosed.

In addition, a treatment gap exists. Not everyone with active epilepsy receives medication or adequate treatment to control the seizures. The Clinical Standards Advisory Group has undertaken a review on the standards for clinical care and the access and availability of services for the NHS patient with epilepsy. Rightly, it places a major emphasis on the patients' perspective of the services available and offered. The findings show that although generally there were high levels of satisfaction with both routine and emergency access and levels of support from GPs for those patients with a mild condition, that was not the case for patients with more severe epilepsy. Even those who were generally satisfied also felt that GPs had a poor level of knowledge about epilepsy, its treatment, the side effects of their drugs and future prognosis. That shows the essential need for increased training for medical professionals, especially GPs, junior doctors and A&E staff.

The evidence also showed that many patients become lost in the system. There seems to be a lack of clarity regarding the role of the general practice service and the hospital service, with a striking lack of correlation between the severity of the epilepsy and the level of service access. Fifty per cent of those with active epilepsy and over 40 per cent of those with severe epilepsy, who should have attended hospital, were often referred to physicians without the necessary specialist training. Other patients with mild or controlled epilepsy routinely were going to hospital when they needed only to see a GP.

A major improvement in the quality of care would be a clarification of the role of primary, secondary and tertiary care. That could be achieved in a number of ways: by appointing lead GPs to assume responsibility for developing epilepsy services in their local area: by better communications with secondary care; and by placing more emphasis on recruiting more specialist nurses to support patients and carers and to liaise between medical and other professionals, including going into schools to inform and assist teaching staff.

The provision of integrated care would be aided by better co-ordination and better cohesion between health, social services, education, employment and the voluntary sector. There is a strong voluntary sector. Twenty-two organisations work cohesively under the umbrella of the Joint Epilepsy Council. They all deserve enormous credit for the tremendous job that they do. The British Epilepsy Association, with which I am connected, is celebrating its 50th anniversary this year. It has 140 self-help branches, involving more than 4,000 volunteers. Its importance and necessity is illustrated by its website, which attracted 2.7 million hits in 1999 and currently receives more than 10,000 hits a day. That is on top of the 28,000 people who use the helpline. I am sure that we shall hear from the noble Earl, Lord Howe, about the work of the National Society for Epilepsy.

Another area of crucial work conducted by BEA has been its study on women and epilepsy. Until recently, the management of patients with seizures took no account of gender. Epilepsy for a woman is not the same as epilepsy for a man. In particular, in women epilepsy affects sexual development, sexuality, the menstrual cycle, aspects of contraception, fertility, pregnancy, the mother/child relationship and the menopause. The study also showed that 51 per cent of women with epilepsy aged between 16 and 55 do not receive advice about the possible interactions between the oral contraceptive pill and anti-epileptic drug therapy, which could lead to contraceptive failure. With regard to pregnancy, 34 per cent did not receive any advice about the need for there to be a review of their drug therapy. Twenty-nine per cent of women in the study who were taking hormone replacement therapy reported an increase in seizure frequency without being informed of the possible side effects. All women should have access to specialist clinics run by nurses who are trained in epilepsy in order to provide pre-conception and pregnancy advice.

Having raised many areas of concern, it would be wrong of me not to acknowledge the recent government initiatives, such as the national sentinel audit on sudden death and epilepsy. There are some excellent epilepsy service models in the NHS. Unfortunately, these are few and far between. Too many people with epilepsy still continue to be denied good quality services.

I have identified some of the primary reasons, but principal among them must be the low priority given to epilepsy by healthcare planners at all levels of the NHS. It is not on the NHS priority list, which consequently means a low level of resources being allocated to epilepsy.

I have no doubt that in his response my noble friend the Minister will refer to cost. I recognise the need for the Government to set priorities for the NHS. However, much could be achieved to improve the service and level of care by reconfiguration of existing services and improving professional practice as recommended in the CSAG report and its plan of action, the publication of which and the Government's response are awaited with interest. I hate to ask when that will be. However, I know that all those working in the field are becoming anxious about the delay. Other government-sponsored reports have been largely ignored. I hope that we will have an assurance that that will not be the case in this instance.

There is now a worldwide momentum to address epilepsy and its consequences. The UK should be playing a leading role in this, using the opportunity to share the best it has to offer and to learn from others. I sincerely hope that we will hear that that will be so.

8.2 p.m.

Baroness Richardson of Calow

My Lords, I express gratitude to the noble Baroness for raising this important issue and for the wonderfully comprehensive overview she has given of the state of epilepsy today. I also express gratitude to organisations such as the British Epilepsy Association, of which she is president.

I can only add certain illustrations because my interest comes from personal experience. My husband was 41 when he had his first fit. He was diagnosed as having epilepsy. When I tried to insist to the consultant that further tests should be undertaken, I was told, "Stop fussing, woman. Epilepsy is as common as dirt". We had to come to terms with what it meant for us as a family: the uncertainty, inability to drive, and all the other things that come from having a breadwinner diagnosed as having epilepsy.

The hurt of that remark was only matched by some of my so-called Christian friends who wanted to organise an exorcism. Neither of those approaches was effective nor, indeed, appropriate. After two-and-a-half years I was finally able to persuade the doctor to obtain a second opinion. My husband was diagnosed as having a benign brain tumour, by which time it was too large to be removed successfully.

That was 20 years ago. I should like to think that things would be different today. I have to say that I am not convinced. It is true that the public at large are more ready to accept epilepsy as a condition that many more people have than they had at first supposed. It is true that employment issues are becoming a little easier. Insurance is now a little easier to acquire. People are not quite so ready to hide their condition and therefore accept support from the self-help groups and organisations which offer it.

However, I should like an assurance that when this disease is presented it will not just be considered as a condition. Now that there is a little more recognition of epilepsy as a condition, there is a danger that it is too easy to accept that and not see it as a symptom of other conditions. I should not like to see such recognition and acceptance mean less investigative procedures which would rule out other underlying conditions which should be treated.

I should also like to underline the issue of long-term management of epilepsy. Once a drug regime is established, it is too easy to continue it and for visits to hospital consultants to be hived off to those for whom it would be good practice to see the patient but who have hardly ever read the notes, let alone looked carefully at the lifestyle and the quality of life of that patient.

I pay tribute to our GP who, by his own interest in my husband's case, managed to find a further drug. When he challenged the hospital, he was told, "We had considered it, but it was very expensive". This is not just a question of resources but of quality of care, which makes such a difference not just to the lifestyle of the person suffering from the condition or symptom, but to the whole family and community in which we live. It is important that resources are available, but also that education is offered to those responsible for care and to society as a whole.

I am grateful that this issue has been raised in this place.

8.5 p.m.

Lord Rea

My Lords, once again my noble friend has put her finger on a subject which may not be prominent in the public eye but which is important to those affected in an area where, as she pointed out, we as a Government may not be doing enough.

As a doctor working in general practice in the National Health Service, I, like many others, felt that my treatment of those with epilepsy was somehow unsatisfactory and unsatisfying. This was partly because of the variable nature of the condition and the understandable reluctance of some patients to take medication regularly at the dose recommended by the neurologist who had last seen them often years previously. Sometimes they were reluctant to take such treatment because of side-effects including drowsiness or dizziness which patients sometimes perceived to be as much of a problem as the attacks.

As the noble Baroness, Lady Richardson, said, several new preparations have recently become available, at a price, which are sometimes more effective. However, I found that getting a patient an appointment with a neurologist, especially one with a particular interest in epilepsy, to assess or reassess the patient and advise on the most appropriate treatment often took several months.

These initial random remarks are based on the first thoughts that came to mind when thinking about my experience as a practising GP. To consider the condition more generally, epilepsy is the name given to the condition in which a patient experiences two or more unprovoked epileptic seizures. These start in the grey matter of the brain and consist of a paroxysmal burst of nervous activity that is uncontrolled and unpredictable. Sometimes the condition starts in childhood and goes on throughout life.

In all except the most severe case the attacks can be stopped or greatly reduced by anti-epileptic medication. Sometimes, and more so if it is adequately controlled by medication, epilepsy can go into full remission and the medication can be reduced and finally stopped. One study mentioned by my noble friend, Lady Gould, suggests that as many as 75 per cent of people with epilepsy will become seizure free within two years if treated appropriately. A number of those will be able to stop medication permanently. In certain abnormal conditions anyone can have an epileptic seizure; for example, children in response to high fever, or alcoholics coming down from a very high blood alcohol level. Such isolated attacks with a known cause do not justify a diagnosis of epilepsy. One in 25 of the population may experience an epileptic type of seizure at some time in their lives.

Persons with epilepsy as such have an increased tendency to develop an epileptic seizure in response to a given stimulus. Sometimes—often even—there may be no apparent provoking stimulus at all. Seizures can be of varied character ranging from the full-blown tonic/clonic convulsion where the whole body goes rigid followed by shaking spasms with loss of consciousness in what used to be called a grand mal attack, usually preceded by a warning aura of altered consciousness, to less severe, localised seizures, sometimes involving no loss of consciousness or perhaps petit mal where consciousness is lost temporarily without muscular spasms. There are also sensory seizures such as temporal lobe epilepsy which result in altered perception of the outer world and inappropriate behaviour.

Some epileptic episodes, especially if they occur for the first time in adult life, may be due to other pathological conditions—as the husband of the noble Baroness found—which can be detected by suitable investigations; for example, scans of one kind or another. The most serious of these may be primary or secondary brain tumours. The need for rapid access to specialist investigation is clear in that case, but delay can also be distressing for someone with early primary or "idiopathic" epilepsy since treatment is usually not started until investigations are completed and diagnosis achieved. Several distressing attacks may occur, one of which could be fatal, during the wait.

To complicate matters, there are other conditions which mimic epilepsy. For instance, hysterical patients can put on a close approximation of an attack at moments which suit their highly skilled, manipulative behaviour. To make matters more difficult, there are no reliable diagnostic tests for idiopathic epilepsy. Various forms of brain scan are useful in detecting structural lesions which may have provoked the seizures, but not for epilepsy itself where diagnosis depends more than anything on taking a detailed and careful history, particularly noting the account of witnesses. It is true that epilepsy runs in families, but at present inheritance is not predictable or detectable in utero since multiple genes are concerned.

Epilepsy is one of a group of chronic relapsing conditions which are increasingly providing the bulk of the workload of the National Health Service at both primary and secondary level, including asthma, diabetes, high blood pressure and depression. Acute diseases which could be cured by timely medication or surgery with full recovery are becoming less common, and if they do occur they are more quickly and easily dealt with. Improved medical science and better living standards share the credit for that. But it does mean, not only because the population is living longer, that a number of debilitating but mainly non-fatal conditions, which always existed, are now revealed more clearly and constitute a new challenge.

Most of today's doctors are not particularly good at the long-term approach needed to cope with chronic illness. "Carry on taking the tablets" is of course the caricature of the current approach. A new strategy is needed which takes a wider view of the needs of the patient with chronic or episodic illness. In this week's British Medical Journal a number of articles and an editorial are published looking at models of good care for those with chronic disease. The two main conditions chosen are asthma and depression which, like epilepsy, carries a social stigma.

The main themes, as I see them, are, first, the need to acknowledge the importance of partnership with patients in managing their care, and, secondly, the importance of a readily available named carer, not necessarily a doctor. There should be open access to follow-up clinics rather than three or six-monthly appointments. That more flexible approach may actually decrease the numbers currently attending outpatient or primary care follow-up clinics. I commend the articles in this week's British Medical Journal to the Department of Health. I do not have time in this debate to detail them for the benefit of the House.

How does the possibility of these improved methods of care look in comparison with the current situation in epilepsy care? Unfortunately, the short answer is: rather Utopian. Most of the support for patients with epilepsy comes from the several charities set up for the purpose, as mentioned by both noble Baronesses. Can my noble friend say when the Government are going to respond to the report of the Clinical Standards Advisory Group under the chairmanship of Professor Shorvon? It was sent to the Department of Health last year. Perhaps my noble friend can give a preliminary response now.

I can only emphasise some of the recommendations and requests made by the National Epilepsy Council and expressed by my noble friend to improve the current situation, which is not good enough. There is need to speed up the referral process for patients to see epilepsy specialists. That is not quite the same as referral to neurologists, not all of whom are interested in epilepsy. Neuro-psychiatrists may offer a better service. I am not sure that the current expansion of 7 per cent per annum of neurologists is adequate. There is also a great need to recruit and train general practitioners to take the lead and enthuse others in their local areas or primary care groups in all areas of the country through postgraduate training and the professional grapevine.

Finally, there is a particular need to recruit and train more specialist epilepsy nurses. To start with, they will have to work as an outreach service from neurology clinics, but ideally they should be based in primary care. There are too many deaths among those with epilepsy—600 were counted in 1995. The cause of many of those remains obscure but is almost certainly related to inadequate control of seizures. I hope the current National Sentinel study on mortality associated with epilepsy will produce results which reinforce the need to upgrade services for this unsung, deserving but too often neglected group of people.

8.15 p.m.

Lord Clement-Jones

My Lords, I congratulate the noble Baroness, Lady Gould of Potternewton, not only on initiating this important debate tonight, but also on the concise and comprehensive way in which she introduced a complicated subject in a short space of time.

In preparing for this debate, the most striking set of facts is one that I came across in the annual report of the National Society for Epilepsy, which gave a short summary of a Gallup Poll which had been carried out over the past year. Some telling points were made in that survey. First, the majority of those surveyed did not know what to do if someone had an epileptic seizure; one third of those surveyed would put something in the patient's mouth during a seizure or hold them down, both potentially dangerous procedures; and 78 per cent of those surveyed would call an ambulance, which is not necessary unless the seizure lasts for more than five minutes. Finally, most of those surveyed believed that they had only a one in 500 chance of developing the condition when in fact, as the noble Baroness, Lady Gould, pointed out, one in 50 has a chance of developing the condition. So that survey graphically illustrated just how little public understanding of the condition there is, despite the fact that it is the most common neurological disorder in the world. Around 420,000 people in this country suffer from epilepsy.

More information on the subject is needed, such as that contained in the British Epilepsy Association booklet. I pay tribute to the association for producing that kind of information, and I pay tribute to its work on its 50th anniversary. But it is difficult for the public to understand the condition. The causes are often not known; it is not necessarily inherited; it arises suddenly and death from epilepsy can tragically be extremely sudden. Around 1,000 people each year die of epilepsy from a condition known as "sudden unexpected death". I welcome the fact that a national survey, funded by the Government, is being carried out by the National Society for Epilepsy. One of the problems arising from the lack of public understanding is that there is concealment of their condition by those who suffer from epilepsy.

Another important survey which I came across in preparing for this debate was contained in January's BMJ. It dealt with what is a fairly typical group of patients in Norfolk. The survey illustrates that in that area there is very high unemployment among those who suffer from epilepsy—an average of 34 per cent compared with 9 per cent in the general population. That conceals an even worse picture, because underneath that, among those with uncontrolled seizures there is an unemployment rate of 47 per cent, but where it is concealed among those with controlled seizures, only 17 per cent are unemployed. Clearly, for those who are concealing the nature of their condition, there seems to be an incentive to carry on concealing it.

There is, clearly, an under-reporting of seizures. Patients were more willing in this survey to report to an anonymous questionnaire that they had seizures than they were to their own GPs. The survey concluded that this may be due to the fear of losing their driving licences or their jobs.

It is clear that we need much better public understanding of the nature of epilepsy, particularly among employers. According to the National Society for Epilepsy, those who are in employment have fewer accidents than other employees, and take less time off work.

We hope that the Disability Discrimination Act, which these Benches strongly supported, will improve matters. I pay tribute to all those voluntary organisations that are involved in dispelling myths about epilepsy—for example, the British Epilepsy Association and the National Society for Epilepsy.

We need to review the issue of driving licences. The noble Baroness, Lady Richardson, referred to the shock of losing a driving licence and having to come to terms with it. At the moment, those with epilepsy need to be free of seizures for one year before they can regain their driving licence. What is the real basis for this? There appears to be little evidence that certain types of epilepsy are predictive of an increased accident rate. In Wisconsin the current restriction on driving without seizures is three months.

The current law appears to lead to concealment, as the authors of the BMJ paper pointed out. The consequences of that concealment mean that those people are not receiving the treatment they need.

These are major issues, but there are other issues surrounding the treatment of epilepsy. There is a shortage of epilepsy specialists, doctors and nurses, despite the creation of Sapphire Nurses. There are very long waiting times, although of course it is absolutely vital that those who have had their first reported seizure should see a specialist quickly.

There is a very low accuracy of diagnosis and a great deal of ignorance among general practitioners.

We have heard about the issue of drugs that have considerable side effects, for example, Epilin. Are we sure that adequate resources are devoted to the provision of drugs that do not have side effects? In other areas of treatment, are there sufficient MRI scanners?

The programme of research being carried out at Queen's Square and at Chalfont St Peter must obviously be commended, but a chair in epilepsy is long overdue, since it is a condition that affects so many people in this country. Seventy-five per cent of people with epilepsy can become seizure-free within two years, when treated by specialist consultants. Is that not the key? We should be heeding the call of the Joint Epilepsy Council for better standards. There seems to be a form of post code treatment for epilepsy in this country, as with so many other conditions.

The noble Baroness mentioned some of the standards for which the JEC is calling, and I strongly support some of those: for example, the right of patients to receive an appointment to see an epilepsy specialist who can diagnose and initiate treatment within four weeks. As the noble Lord, Lord Rea, pointed out, failure to see a specialist early can cause not only distress but considerable danger to the patient. There should be improved services at primary care level by appointing lead GPs to assume responsibility for developing epilepsy services in their area, better integration and co-ordination between health, social services and other agencies, and of course the recruitment of more specialist epilepsy nurses to support patients and carers.

I look forward to hearing what the Minister has to say. I hope he can give us an assurance that improvements are on the way as a result of the independent report on standards of care and service provision. I very much hope that he can offer more than what the noble Lord, Lord Rea, described as "the usual tablets".

8.24 p.m.

Earl Howe

My Lords, the House will be more than grateful to the noble Baroness, Lady Gould, for initiating the debate this evening and for the very clear and persuasive way in which she did so.

Like the noble Baroness, I too am proud to have an interest to declare, as President of the National Society for Epilepsy, a charity founded over a hundred years ago and now one of the leading organisations in the world dedicated to the treatment of people with epilepsy and to improving our understanding of this often debilitating condition.

Anyone coming to this subject afresh cannot fail to be struck by one feature, to which nearly every speaker has referred, and that is the prevalence of epilepsy. It is far and away the most common serious neurological condition, affecting one in two hundred people. Its incidence is similar to that of diabetes and asthma. It is ten times more common than MS. Despite that, it is an affliction that lurks in the shadows, as the noble Baroness said.

We might sometimes be tempted to think that this liberated age of ours has banished all the taboos of past generations but that, alas, is not true for epilepsy. Many, if not most, of those who have epilepsy are reluctant to admit the fact publicly. The result is that epilepsy lacks one of the very things that it most needs, which is a co-ordinated voice from patients. It is in a real sense a Cinderella condition.

The low standing of epilepsy in the public mind also means that those few advocates that it has among clinicians are unable to make their voices heard as prominently as they deserve to be. This is more than just a pity; it is a cause of shame, not least because of the huge strides that have been made over the past five or six years in treating people with epilepsy. The headquarters of the National Society for Epilepsy in Chalfont St Peter is a centre of tertiary referral for those patients, about 10 per cent of the total, who have a severe and continuing form of the condition. It houses the only magnetic resonance imaging unit in the world dedicated to the diagnosis and treatment of epilepsy. Before that unit was opened in 1994 doctors at the centre were able to find a cause for a patient's epilepsy in only 20 per cent of cases. Now, thanks to far more accurate imaging from the MRI scanner, the figure is as high as 70 per cent.

Finding the cause of a patient's epilepsy is not just an academic exercise; it can often be the key that unlocks the door to a complete cure through surgery. These techniques were undreamed of only a handful of years ago, and it is perhaps not surprising that demand for places at the society's assessment centre is very high indeed.

Even when an outright cure is not possible, doctors are quite often able to control a patient's epilepsy completely using modern drug treatments. The importance of these clinical advances should not be underestimated. Some 400,000 people in the UK are currently afflicted with epilepsy in varying degrees of severity from a whole host of causes, including accidents, strokes and meningitis. Up to 1,000 people die suddenly from epilepsy every year, which is four times more than the numbers dying from AIDS.

The devastation that epilepsy brings to people's lives and to families cannot be imagined until it is seen, yet only a minority of patients in this country have access to the specialised care that they need. This should not and need not happen. Patients become lost in a system that has let them down. Only a comparatively small number of GPs has a real and detailed understanding of epilepsy. That is not a criticism of GPs, who cannot be expected to know the ins and outs of every condition that they deal with, but it means either that the patient is not referred to a consultant at all or, when a referral is made, it is made in all good faith to someone without the necessary specialist expertise in epilepsy. The truth is that there is a woeful lack of coordination between doctors at primary and secondary care levels on this subject and, in general, a lack of professional awareness of epilepsy in many branches of secondary care, such as geriatrics, obstetrics and A&E. The fact of a patient having an epileptic seizure is often missed altogether and its implications therefore overlooked. All too frequently women with epilepsy who want to start a family receive no advice whatever from their GP or their ante-natal clinic about the risks and consequences of pregnancy or childbirth.

These are deficiencies for which there is really no excuse. Many of us who are involved with epilepsy took heart when in 1996, under the previous government, the Clinical Standards Advisory Group was commissioned by the Department of Health to review existing epilepsy services throughout the United Kingdom and make recommendations for improvements. Its report is eagerly awaited. Like the noble Baroness, I should like to ask the Minister when he expects it to be published.

One of the central features of the research programme was that, for the very first time in an exercise for government, it attempted to gain a perspective of epilepsy services from the point of view of patients. The aim was to try to identify how best to organise and configure the delivery of epilepsy services, what those services should be and how to optimise their quality—what one expert referred to as a "joined-up epilepsy service".

Whatever the report's conclusions and recommendations, I believe that it is a certainty that the defects at primary and secondary care levels that I have just referred to will loom large in it. The key to any successful reorganisation of epilepsy services will be better communication between GPs, hospitals, the voluntary sector and tertiary referral centres—the aim being to ensure that each patient is looked after at the right level according to the severity and complexity of his condition, as the noble Baroness, Lady Gould, emphasised. Not all epilepsy sufferers need to keep going back to hospital all the time; yet, as the noble Baroness said, many of those with mild forms of epilepsy do just this when they could be seen just as effectively by their GP. By contrast, a great many of those with active or severe epilepsy who should be seen regularly by a hospital go for months, and even years, without a hospital visit.

The answer must be multi-faceted. One element must surely be to appoint at primary care group level a lead GP to act as a focal point for referrals and for the flow of information to patients and to ensure that there is proper communication with and from hospitals. At secondary care level there must be a powerful case to re-configure the outpatient service in each NHS region into dedicated epilepsy clinics. I see the role of epilepsy specialist nurses as crucial for the running of the service; indeed, more will need to be trained.

I mention tertiary referrals in particular because it is clear with epilepsy, as elsewhere, that the system of out-of-area treatments introduced by the Government last year is not working as it should in that context. I was recently told about one quite typical example of a patient who had been seen by a consultant neurologist at his local hospital. On the strength of this, his GP decided that he should be referred to an epilepsy specialist at a tertiary referral centre. The PCG refused to agree this referral and insisted that the patient should be seen instead by a second consultant neurologist who practises in a nearby hospital with which the PCG happens to have a contract—a neurologist who has no specialist expertise in epilepsy whatever. In other words, there is a drive, no matter what, to keep the patient on the home patch purely to prevent the budget of the PCG from being eroded.

At best, this roundabout procedure results in a delay in the patient being seen at tertiary referral level. At worst, the patient's problem remains unresolved and he is denied a tertiary referral altogether. Many patients now coming to the NSE say that they had to persist and persist to get the referral made. That cannot be right. Those 10 to 15 per cent of patients whose epilepsy is complex, either diagnostically or therapeutically, should have unfettered access to specialist centres of excellence, such as the Chalfont Centre or the National Hospital for Neurosurgery in Queen's Square.

Other noble Lords mentioned the shortage of neurologists. I should like to ask the Minister whether the Government recognise these shortages and what plans they have to address them. Does the Minister accept the recommendation put forward by the Association of British Neurologists that the numbers of consultant neurologists ought to be increased to 1 per 100,000 of the population?

I should like to think that the financial outlay for any concerted programme of action need not be all that great and certainly not great in relation to the health gain in prospect for those many thousands of people in need. Like the noble Baroness, Lady Gould, I believe that much can be achieved by better co-ordination of what is already there. We need to remember that if epilepsy patients are excluded from the clinical process, they certainly cannot hope to break out of the exclusion that they suffer in almost every other sense—educational, social, vocational and marital. Epilepsy sufferers feel these disadvantages even more keenly than the condition itself. That is why a sensible programme of action will yield real dividends for the nation, not least those that we can measure in purely financial terms, far in excess of the cost. I hope that the Minister will be able to send us away with something to cheer about.

8.35 p.m.

Lord Burlison

My Lords, perhaps I may join with other noble Lords who have thanked my noble friend Lady Gould of Potternewton for raising this very important subject tonight. I know that my noble friend puts a lot of time and energy into trying to bring improvements to those who suffer in this very important area.

The Government are well aware of the particular problems that epilepsy can bring to people and of the need for a well co-ordinated approach to service delivery. Epilepsy is the commonest serious neurological disorder—a sign of underlying disease in the brain—affecting more than 350,000 people or one in 200 of the United Kingdom population. At some time in their lives, between 3 per cent and 5 per cent of the population will have epilepsy.

Epilepsy can affect people of any age. Many of those who develop epilepsy start having seizures during childhood, but the condition can develop at any age, even among older people. Many people with epilepsy will have their seizures controlled. One might, therefore, think that they lead a fairly normal life compared with other people with disabilities. However, despite its prevalence, some people with epilepsy face stigmatisation by society and some are still unaware of the full nature of the condition and the services available to them.

As I said, most people with epilepsy have their seizures controlled. However, some 20 per cent of people with epilepsy have complex epilepsy and much time and effort may be needed to achieve seizure control; indeed, complete seizure control is never achieved by some people. People with complex epilepsy may well require specialist tertiary level assessment and treatment. Complex epilepsy is included in the comprehensive list of specialised services set out in the health circular on commissioning in the new NHS. This means that the NHS Executive's regional offices give special consideration to commissioning services for those people with complex epilepsy to ensure that there is proper access to such services for those who need them.

Epilepsy can bring serious problems for the person with the condition and for his or her family. It places restrictions on the way in which such people live. Some people with epilepsy lead lives of social isolation and exclusion. People with active seizures find that not being able to drive in this modern, car-dependent world—as mentioned by the noble Baroness, Lady Richardson, in her own circumstances—can place severe limits on their lifestyles and on their working potential. Children with epilepsy may need a good deal of care. As in all households caring for a sick child, this can cause potential difficulties for family relationships for the needs of one have to be balanced against those of the family as a whole.

The noble Baroness, Lady Gould of Potternewton, mentioned some of the problems that women suffering from epilepsy are confronted with. They often have hard choices to make about starting a family—choices which can sometimes be made even harder by the failure to give full information about the way pregnancy may affect them and the potential consequences for their children.

However, we also know that people with epilepsy face very real problems in obtaining and retaining employment, whether or not driving skills are required. This is largely because of the long-standing misapprehensions about the way in which epilepsy affects people's capacity to work and the widespread false perception that all people with epilepsy have seizures every day. This means that people are reluctant to have people with epilepsy as work colleagues in case they have seizures.

All these false perceptions lead to higher than average levels of unemployment for people with epilepsy compared with other people with disabilities. Helping people to find and keep work is a key priority for this Government. We have already introduced a Welfare to Work programme. This includes the New Deal for the Disabled. People with epilepsy will benefit from the New Deal and other proposals we are developing in this area, which I am sure will lead to better employment opportunities in the future.

Because of all these complex factors it is clearly important to get epilepsy services right. For many years epilepsy was acknowledged to be one of the National Health Service's more neglected service delivery areas. I am pleased to say that real improvements have been made in recent years as the National Health Service has started to tackle some of these long-standing service delivery problems.

There have been a number of specific initiatives aimed at improving the care and treatment of people with epilepsy. As well as the national guidance issued in 1995, the National Health Service has taken advantage of the help offered by the British Epilepsy Association to run regionally inspired seminars designed to help people devise local service improvement programmes. These seminars—usually chaired by the regional chair—have led to service delivery improvements on the ground as gaps in services have been identified and plugged.

A number of noble Lords, including the noble Earl, Lord Howe, the noble Baroness, Lady Gould, and the noble Lord, Lord Rea, mentioned the introduction of specialist nurses into epilepsy. There has been a real improvement in this area, particularly in the development of better care pathways, in talking to potential employers of people with epilepsy and in giving direct information and advice to patients and carers. The noble Earl, Lord Howe, emphasised that aspect, as did other noble Lords. Many of the earlier problems in epilepsy care were associated with the lack of good, readily understandable patient and carer information. With some support from government, the epilepsy voluntary organisations—especially the British Epilepsy Association—have been filling these long-standing information deficits for patients.

More recent work includes the service development kit put together by the Epilepsy Task Force, which gives comprehensive advice on the commissioning and provision of services, including service specifications, audit and briefing on potential service models. It also includes material on the health economic case for good epilepsy services.

The noble Lord, Lord Clement-Jones, asked about the role the Government are playing in improving care for people with epilepsy. There is a major Department of Health funded initiative aimed at discovering more about sudden death epilepsy. I trust that improvements will be made in that area as a result of that initiative.

My colleague, John Hutton, signed the foreword to the British Epilepsy Association's handbook Epilepsy Care: Making It Happen only last year. This is a useful tool kit for developing effective epilepsy services. In his foreword John Hutton stated that the Government want to see these services improve across the National Health Service as a whole and that we have an opportunity now to focus on the needs of people with epilepsy.

A number of noble Lords have mentioned the Clinical Standards Advisory Group and have asked about the date of publication of its report on epilepsy services. This has been received but has not yet been published by the Government. This is one of four final reports produced by the Clinical Standards Advisory Group which await publication. The remit of the group has now been subsumed into the work of the Commission for Health Improvement.

The report contains some excellent research material which looks at epilepsy from the patient's viewpoint in depth for the first time and draws a number of conclusions about the present state of services as well as making a number of recommendations for change. We are still considering the report and hope to be able to make an announcement shortly.

The noble Earl, Lord Howe, mentioned the number of neurologists. I am not in a position to give him the relevant figures at the moment but I shall, of course, write to him on that issue.

I conclude by saying that the findings of the CSAG report will prove most helpful when Department of Health officials meet representatives of the Joint Epilepsy Council shortly to take stock of recent service developments and recent medical research and to discuss ways of taking work forward in this area.

As the noble Earl, Lord Howe, mentioned, our approach to epilepsy has improved in recent years but there is still a long way to go. We are doing better in this area but we are perhaps not the best. However, I am sure that with the commitment that is demonstrated in your Lordships' House we shall get there soon. If there are points that I have not responded to, I shall reply in writing.

Baroness Ramsay of Cartvale

My Lords, I beg to move that the House do now adjourn during pleasure until ten to nine.

Moved accordingly, and, on Question, Motion agreed to.

[The Sitting was suspended front 8.47 to 8.50 p.m.]