Incompetent epilepsy care is taking a heavy toll in England, both in terms of lives and money - nearly 400 lives and £189m every year, according to a report published today by the All Party Parliamentary Group (APPG) on Epilepsy.
The report - Wasted Money, Wasted Lives - concludes that, despite effective treatments, there are 365 avoidable deaths a year from epilepsy, 69,000 people are living with unnecessary seizures, and 74,000 people are taking anti-epilepsy drugs they do not need.
Baroness Gould, chair of the APPG, says the report identifies a national scandal: "Perhaps the most shocking aspect of the report is the fact that better services would result in savings for the NHS ... and around £189m could be saved every year. This would more than cover the cost of improved services."
Supported by the Joint Epilepsy Council of the UK and Ireland (JEC), the report also condemns what it calls the continued government failure to meet the needs of people living with the condition. "Government guidelines for major changes to the treatment of epilepsy do exist," says Karen Deacon, chair of the JEC.
"But, without targets or powers, these are little more than wish lists and are of little use to patients facing critical service failures." The JEC says the government should accept responsibility for the shortfall in services and increase the numbers of doctors and nurses specializing in epilepsy as a "matter of urgency".
The panel called for greater awareness of Sudden Unexpected Death in Epilepsy, responsible for two-thirds of epilepsy deaths and a particular risk for those who have either not been diagnosed, or whose medication is not effectively controlling their seizures.
"The report's recommendations will simply lift the levels of epilepsy services to match those provided for other long-term conditions," Gould says. "This calls for action at a national level, rather than shifting the blame down to local level."
Epilepsy is the most common serious neurological disease in England, affecting 382,000 people. According to the APPG, misdiagnosis rates stand at 20%-31% and cost around £134m a year.
Epilepsy seizures occur when too many nerve cells send messages at once, producing what could be described as an electrical storm.
Epilepsy has been linked to brain damage from birth injuries, head injuries, stroke, brain tumours and alcoholism, while some seizures are thought to have a genetic basis. However, no one exact cause has been pinned down.