Epilepsy is the most common serious brain disorder in every country of the world. Forty million people worldwide have epilepsy and over a hundred million have had epileptic symptoms at some time of their life. In the United Kingdom 400,000 people have epilepsy, a million have had it at some time of their lives and one and a half million will have experienced a seizure on one occasion. There are 30,000 new cases annually. Each year around a 1000 patients with epilepsy die suddenly as the result of the condition. It is a hidden disorder for patients, relatives, and friends - hidden because epilepsy is still considered, as it was in earlier centuries, as a shameful disease, not to be talked about. The stigma surrounding epilepsy is as impenetrable as ever. The discrimination suffered by those who have epilepsy starts in their primary schooldays, continues in their secondary and tertiary education, if they receive it, and finally plagues them in their workplace.

It is a condition which has fundamental consequences on every aspect of a patient's life. The physical impact on their quality of life and the type of employment they can follow is obvious. Likewise the psychological tensions, which seizures engender, lead to feelings of inadequacy and lack of self esteem. These commonly blight social, sexual and professional life.

Epilepsy doesn't only impact on the quality of life of the patient but also of all around them. The whole family's standard of living is affected. Many patients with epilepsy are receiving incomes which are much lower than those of their contemporaries who have similar qualifications and education. The rate of unemployment at any time is about three times greater than the general rate. Evidence shows that the reluctance to employ patients who have epilepsy is greater than for engaging other people with other disabilities.

Anyone may have a seizure, male or female, at any age (but most frequently when under 20 and over 60) and of any class or race. This occurs when a person's brain undergoes a disturbance of its electrochemical activity. Given an appropriate stimulus any person's brain's sensitivity may be so changed that they too can have a seizure. Seizures, and epilepsy, may be a symptom of many diseases. The terms "grand mal" and "petit mal" frequently appear in Victorian literature, a time when most seizures were classified into one of two types. In the "grand" mal the patient's seizure was like the classic convulsive fit of film and stage whereas the "petit" mal described the momentary loss of consciousness with at most a slight flickering around the eyes and face. The different types of seizure are now carefully classified into eight different groups. This classification is important when selecting appropriate treatment. Seventy to 80 per cent of attacks can be controlled with drugs, another three per cent by surgery after full neurological examination including MRI studies.

It would be thought that when confronted with a condition which produces social isolation, reactive depression, poverty, and the ever present risk of death, there would be huge enthusiasm to see that it was well treated. Spurred on by the thought that when epilepsy is well treated 70 to 80 per cent of people can lead normal lives it would be expected that it would be high on any government's future plan for the health of the nation, so that those who were unfortunate enough to suffer this disability would be offered every facility to lead a safer and easier life. Not so. The resources specifically allocated to epilepsy are inadequate and the stigma which is attached to it remains as strong as ever. As epilepsy is too often not socially accepted it has a low political profile. There are few votes to be won by an improved service for patients with a hidden disease. Despite five government reports between 1953 and 1999 the services offered to people with epilepsy remain fragmented and poorly coordinated. The present government has also produced an action plan and a further report from NICE is expected.

There are more deaths in the UK each year from sudden unexpected death from epilepsy (SUDEP) than from sudden cot death. As the first concern must be to keep patients alive it is worthwhile reviewing the situation which were uncovered by the National Sentinel Audit into Epilepsy Related Death a year ago. Only 13 per cent of deaths of people with epilepsy were adequately investigated. Of the 1000 who died because of the epilepsy a third never saw an appropriate specialist. Eighty-nine per cent of the deaths where the patients had only received GP care, 41 per cent hadn't had their condition reviewed in the two years before their death. Records weren't available in many cases of the type of seizure from which the patient was suffering and only eight per cent who it is known should have been referred for specialist treatment and advice were. Drug management in 18 per cent of cases was poor and in 14 per cent patients had difficulty in taking the treatment which had been prescribed. Doctors were reluctant to discuss with the family the possibility of sudden death from epilepsy and so far as could be discovered from notes only one per cent of families had been warned of this possibility. The most important finding of the audit and the most disturbing was that 42 per cent of deaths in epilepsy were potentially avoidable.Drug treatment has to be tailored for the individual patient. The treatment will depend on the type of fit and their frequency. The standard and by now traditional treatments are sodium valproate (Epilim) and carbamazepine (Tegretol), there is an analogue of carbamazepine oxcarbazepine (Trileptal), pyrimidinedione (Mysoline), phenytoin (Epanutin) and for absences - the type of attack in which the patient doesn't have a readily obvious seizure but is unconscious for such a short length of time that they don't fall - ethosuximide (Zarontin). Over the past few years other anti convulsant drugs have been introduced such as lamotrigine (Lamictal) levetiractam (Kepra) tiagabine (Gabitril), various other analogues of gabapentin and topiramate (Topamax). With such a large and ever increasing choice of anti convulsants it becomes even more important that patients with epilepsy should see a neurologist with a specialist interest in the subject.

One aspect of epilepsy needs greater consideration. Women with epilepsy have three periods in their life where their gender may be of importance. In adolescence the advent of puberty may affect their liability to seizures, and their treatment may have cosmetic implications. In their reproductive years the contraceptive pill may be undermined by some anti epileptic drugs. Unfortunately these drugs also have teratogenec properties, that is to say the unborn baby may be affected. Expert advice is needed by women with epilepsy before they venture into childbearing and / or breastfeeding so that the appropriate treatment consistent with pregnancy may be agreed upon. At the menopause those women who need HRT must be aware of its affect on seizures and on the best type of anti epileptic treatment to take with HRT.

The government's action plan is full of imprecise aims loaded with talk of partnership, provision of good quality information, using peoples' expertise and experience to the best advantage, raising awareness, improving the quality of patient and clinician relationship and providing workshops. What the patients and the doctors looking after them are looking for from the government is rather more precise. They welcome the government's aims, however vague, but they want commitment to provide the specific ring-fenced funds to add substance to pious hopes. They want to know that there will be a suitable work force to implement recommendations and the widest range of anti epileptic medication for people with epilepsy. They are appalled that the misdiagnosis rate for epilepsy is unacceptably high at 20 to 40 per cent and 30 per cent of people with active epilepsy are not being treated by a specialist. In the opinion of experts new patients with a possible diagnosis of epilepsy should be seen by a neurologist with a particular interest in epilepsy within 28 days.

Dr Thomas Stuttaford isThe Times' Medical Columnist