A serious neurological condition affecting nearly 400,000 people in England is largely being ignored, according to a report launched today by Epilepsy Action.
‘Epilepsy in England: time for change’ shows that epilepsy is a worryingly low priority for England's health service providers, despite numerous expert reports highlighting the need for better service provision. The report has 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. The survey uncovered huge discrepancies in the way trusts currently gather and collate information on epilepsy. It was found that many trusts do not hold basic data on the prevalence and population of people with epilepsy in their region. In particular, only 18 per cent of PCTs provided figures on the number of children with epilepsy. Without this vital information, it's impossible to see how trusts are able to plan and provide services of an acceptable standard.
Epilepsy Action is now calling for the government to show leadership by driving improvement in epilepsy services. ‘Epilepsy in England: time for change’ sets out a ten point plan to address the specifics of adequate service provision for all epilepsy patients in England and ensure patients’ lives aren’t compromised.
Baroness Ford of Cunninghame, Epilepsy Action's President, said: "What the report reveals about the state of epilepsy services in this country is astonishing. It shows that health trusts are unlikely to be able to provide decent epilepsy services, when they don't have many of the resources underlined as critical in the 2008 NICE commissioning guide.
She continues: "It's time for health commissioners to start implementing NICE guidelines; it's time for the government to wake up and take the lead on this issue; it's time for people with epilepsy to stop getting such a raw deal."
Earl Howe, Chair of the All Party Parliamentary Group on Epilepsy, said: “Uncontrolled epilepsy can have a devastating impact on the quality of life of people with epilepsy. Every seizure brings the risk of injury and even death, and early treatment means that seizures may be reduced. The results in today’s report are deeply concerning.”
The full report is available for viewing at www.epilepsy.org.uk/timeforchange. Patient case studies, health professionals and Epilepsy Action representatives are available for interview. The report is being launched by Baroness Ford at a reception at the House of Commons, 4-6pm, 14 January 2009. Press welcome to attend.
For further information about the report, or to arrange interviews or attend the launch event, contact Keeley Eastwood in the press office on 0113 210 8870 or email press@epilepsy.org.uk. For enquiries made outside normal office working hours, please call Aimee Bowen on 07745 095 838.
*All results are expressed as a percentage of responses received.