A catalogue of failures in the care and treatment of people with epilepsy has resulted in around 400 avoidable deaths a year, and £189 million in wasted funds, according to a report by the All Party Parliamentary Group (APPG) on Epilepsy published tomorrow (June 27).
Wasted money, wasted lives, a hard-hitting report into the human and economic costs of epilepsy in England, condemns continued government failure to meet the needs of people living with the condition.
The report, supported by the Joint Epilepsy Council of the UK and Ireland (JEC), says 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, 69,000 people are living with unnecessary seizures, while 74,000 people are taking drugs they do not need.
Baroness Gould of Potternewton, chair of the APPG, said: “The regularity of avoidable deaths at nearly 400 each year is shocking. In addition, the numbers of people who experience seizures unnecessarily and the numbers taking anti-epilepsy drugs for which they have no need demands recognition as a national scandal.
“The waste of money in delivering inadequate service is almost as appalling as the unnecessary deaths and damage to quality of life experienced by people with epilepsy”.
The APPG gathered evidence to provide a realistic picture of epilepsy services, which also highlights issues caused by poor service provision. The written and oral evidence received from patients and their families highlighted the challenges of life with the condition and, in some cases, death.
Karen Deacon, chair of the JEC, said: “During the course of our inquiry it has become clear that even in this world of competing health interests the case for improving epilepsy services is overwhelming.
“Government guidelines for major changes to the treatment of epilepsy do exist, but without targets or powers, these are no more than wish-lists and of little use to patients facing critical service failures.”
The APPG is calling 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 workforce shortages by increasing the numbers of doctors and nurses with a special interest in epilepsy as a matter of urgency.
The APPG invites the Health Select Committee to drive progress by examining the provision of health services for people with epilepsy in England and look to the government to formally account for decades of under investment in this neglected condition.