Policy makers must increase investment in services to improve the lives of people with epilepsy, according to The Lancet Neurology this month.
An article, published in the July issue of the journal, highlights how health services are failing many people with epilepsy, an often overlooked and misunderstood condition. This is despite epilepsy being the most common neurological condition in the UK, with 456,000, or one in 131, people affected. The article also highlights how greater investment and awareness of the personal and economic burden of epilepsy is needed.
The piece follows various reports by epilepsy organisations, which show that epilepsy is still a worryingly low priority for England's health providers. A report by national charity, Epilepsy Action, Epilepsy in England: time for change, identified considerable failings against national guidelines for epilepsy services set out by the National Institute for Health and Clinical Excellence (NICE) .
The report, which draws on results from a survey of primary care trusts (PCTs) and acute trusts across England, exposed a bleak picture for people with epilepsy.
- Despite NICE guidelines that all people with suspected epilepsy should be seen by an epilepsy specialist, half (49 per cent) of acute trusts do not employ one.
- Despite NICE guidelines stating that all people with suspected epilepsy should be seen urgently (within two weeks), most trusts (more than 90 per cent) have waiting lists of longer than this.
- Despite NICE guidelines stating epilepsy specialist nurses (ESNs) should be an integral part of the medical team providing care to people with epilepsy, well over half of acute trusts (60 per cent) and of PCTs (64 per cent) do not have one.
The results also revealed that the majority of trusts lack even the most basic information to allow them to design adequate services. It was found that many trusts do not hold basic data on the prevalence and population of people with epilepsy in their region. Without this vital information, it's impossible to see how trusts are able to plan and provide services of an acceptable standard.
The All-Party Parliamentary Group on Epilepsy also published a report, Wasted Money, Wasted Lives, in 2007. The report revealed that £189 million is needlessly wasted every year, due to misdiagnosis. The report highlights how many people are wrongly diagnosed with epilepsy or have been diagnosed with the wrong type of epilepsy.
Simon Wigglesworth, deputy chief executive at Epilepsy Action, said: "Epilepsy services in the UK are not good enough. Despite NICE guidelines setting out key recommendations for improving epilepsy services, health services are still not prioritising the condition. We are calling on the government and policy makers to take a lead in driving improvements to epilepsy service provision, to ensure people with epilepsy receive the level of care they deserve."