Epilepsy Action and the Joint Epilepsy Council (JEC) - the umbrella body of epilepsy organisations in the UK and Ireland - welcomes the attention that the Chief Medical Officer has brought, through the government action plan on epilepsy, to the serious deficiencies in service provision for people with epilepsy and the significant potential for saving of life in this area.
While welcoming the increased profile that the Government has given to epilepsy through the Action Plan, the JEC calls on the Government to improve on the series of initiatives that are planned, to ensure that real action results in benefit for people with epilepsy.
The voluntary sector calls on the government to strengthen the plan by making clear what funds will actually be available to local health organisations to develop epilepsy services and how the government intends to monitor or check whether services have improved and whether lives have been saved.
The Joint Epilepsy Council views the Action Plan as insufficient to tackle the serious shortfalls identified in the National Sentinel Audit of Epilepsy Related Deaths (SUDEP) in May 2002. While we welcome the fact that the Action Plan brings epilepsy to the fore in a number of existing initiatives, the Action Plan is fundamentally flawed in that it does not contain:
- any target for the reduction of epilepsy related deaths
- any proposed means for monitoring the effectiveness of the plan
- any significant injection of funds to deliver improved services.
It is reliant upon recommendations and requests to the Health Service, which, when faced with competing directives for action from the government in other areas of health provision, is unlikely to deliver any significant improvement in care for people with epilepsy and, critically, unlikely to reduce the 400 annual preventable deaths from epilepsy.
We believe there should be a national target of a 40 per cent reduction in epilepsy related deaths within three years.
We are committed to working with the government and health service to deliver improvements in care and remain available to help develop these initiatives into effective plans.
In the following pages we have briefly analysed the various points within the governments action plan and indicated our view on these and how they could be improved.