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Epilepsy Services

I am pleased to have obtained this debate, which is about epilepsy services and the all-party group on epilepsy’s report entitled, ““Wasted Money, Wasted Lives””. It is a hard-hitting report about the human and economic costs of epilepsy in England today, and in undertaking it the all-party group was supported by the Joint Epilepsy Council of the United Kingdom and Ireland. The report found that people with epilepsy are being left behind by society and by a system that has consistently failed them, despite the development of effective treatments in recent years. Some 69,000 people live with unnecessary seizures, while 74,000 people take drugs that they do not need. The regularity of avoidable deaths, at almost 400 a year, is shocking. In addition, the number of people who experience seizures unnecessarily and the number taking anti-epileptic drugs for which they have no need, is an issue that demands recognition as a national scandal. The money wasted in delivering inadequate services is almost as appalling as the unnecessary deaths and the damage to quality of life that people with epilepsy experience. The all-party group gathered evidence to provide a realistic picture of epilepsy services, and it highlighted problems caused by poor service provision. The written and oral evidence from patients and their families highlights the challenges of life with the condition—and in some cases, death. During our inquiry, it became increasingly clear that even in today’s world of competing health interests, the case for improving epilepsy services is overwhelming. Government guidelines for major changes to the treatment of epilepsy exist, but without targets or powers they are little more than wish lists, and of little use to patients who face critical failure. The all-party group calls on the Government to accept responsibility for the shortfall in services, and to ensure that health care providers implement guidelines. It also urges the Government to address work force shortages by increasing as a matter of urgency the number of doctors with a special interest in epilepsy. The group invites the Health Select Committee to drive progress by examining the provision of health services for people with epilepsy in England, and looks to the Government to account for the decades of under-investment in this neglected area. Epilepsy, which is the most common serious neurological condition, affecting about 382,000 people in England, is defined as a tendency to have recurrent seizures. A seizure is caused by a sudden burst of excess electrical activity in the brain, which causes a temporary disruption in the messages passing between the brain cells. Epilepsy is not a single condition; there are about 30 different epileptic syndromes and more than 38 different types of seizure. A person may have more than one type, and epilepsy can affect anyone at any age from any walk of life. Every year 990 people in England die from epilepsy-related causes, of whom about 365 are young adults and children. Many people are wrongly diagnosed with epilepsy, and many have been diagnosed with the wrong type of epilepsy. Misdiagnosis rates in England are shocking, standing at between 20 and 30 per cent. An unknown number of people also experience misdiagnosis whereby they have epilepsy, but it is diagnosed as something else. Assuming a misdiagnosis figure of 23 per cent., that means that in England alone, about 74,000 people who do not have the condition are diagnosed with it and receive treatment for it. The Joint Epilepsy Council, in its recently published manifesto for epilepsy, shows how improvements in epilepsy care in England could realise estimated savings of £134 million a year in the annual cost of epilepsy misdiagnosis, based on figures from the National Institute for Health and Clinical Excellence. The medical cost alone of the unnecessary treatment of people who do not have epilepsy, and of the wrong treatment of people who have been diagnosed with the wrong kind of epilepsy in England, is estimated to be £22.5 million a year. That includes neither the economic cost nor the cost in lost opportunities to people who, because of misdiagnosis or mistreatment, could be in work but are not. When those costs are included, the estimated total cost of misdiagnosis in England rises to £134 million a year. Some 70 per cent. of the population with epilepsy in the UK could be seizure-free with optimal treatment.