All-Party Parliamentary Group on Epilepsy - Inquiry into epilepsy services - 26 June 2007

'If only we'd pushed it' - BBC News 25 June 2007

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 June 27 2007.

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.

If you would like to raise awareness of this report with your local MP please contact sally.gomersall@epilepsybereaved.org.uk

Epilepsy Bereaved worked with other epilepsy organisations across the UK and Ireland as part of the Joint Epilepsy Council to bring evidence to the APPG earlier this year. Several EB families gave evidence of their experiences of epilepsy and SUDEP. Families have appeared on the BBC supporting action on the report.

The report, 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. 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. 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 report includes a wide range of recommendations including specific recommendations on SUDEP and Epilepsy Bereaved will be calling on government to specifically address why urgent action has not been taken since Epilepsy Bereaved highlighted 400 avoidable deaths in the NICE National Audit of Epilepsy Deaths 2002. We welcome all the plans that have been made by government since then to address SUDEP, but plans must be translated into action if progress is to be made and live saved.

The charity will also be calling on government to urgently act on previous promises to reform the system for investigation of deaths so that lessons can be learnt from avoidable deaths and that bereaved families can receive appropriate information and support.

We need to raise awareness of this report with as many MPs as possible.