Resources > Publications
The documents below can be viewed online by simply clicking its title (displayed in PDF format) or alternatively hard copy versions are available from Sharon Wood, JEC Chief Executive.
37kb PDF File. Don't have Adobe PDF Reader? Click here to download
1.1MB PDF File. Don't have Adobe PDF Reader? Click here to download
Wasted Money, Wasted Lives, a hard-hitting report, supported by the Joint Epilepsy Council of the UK and Ireland, into the human and economic costs of epilepsy in England, condemns continued government failure to meet the needs of people living with the condition.
Epilepsy Prevalence, Incidence and Other Statistics
184kb PDF File. Don't have Adobe PDF Reader? Click here to download
The JEC have launched an Epilepsy Prevalence, Incidence and Other Statistics document in response to requests from member organisations. The data is intended to provide a consistent approach to epilepsy statistics and members and others are invited to use the information if they so wish.
Department of Health Action Plan
2.6MB PDF File. Don't have Adobe PDF Reader? Click here to download
In February 2004, the Department of Health published its Health Action Plan - 'Improving Services for People With Epilepsy'. The Action Plan was drawn up in response to the National Clinical Audit of Epilepsy Related Death (NCAERD) that was published in May 2002 (see issue 21 of Focus for details) and as a result of recommendations in the Chief Medical Officer's 2001 Annual Report that epilepsy services should be improved.
The Action Plan covers three areas targeted for improvement:
Care, management and treatment of epilepsy
Information provision
Pathology and post mortem investigations
and within these areas are specific objectives.
Care, management and treatment of epilepsy
NCAERD found that 54% of adults had inadequate care and 77% of children had inadequate care. The Action Plan states the Department of Health will make improvements in the following ways:
By engaging with NHS and Primary Care Trusts and Strategic Health Authorities to suggest they review local epilepsy services and address shortfalls.
£1.2million will be invested in a two year project to improve quality and access in neurology services.
By liaising with the Royal College of GPs to develop more GPs with a special interest in neurology.
The National Service Frameworks for Children and Long Term Conditions will both focus in part on epilepsy.
The National Institute for Clinical Excellence has been commissioned to look at anti-epileptic drugs for children and adults.
Information provision
NCAERD found deficiencies in communication between healthcare professionals and patients. To address this the Department of Health has funded the National Society for Epilepsy to expand its Epilepsy Information Network. NHS Direct Online will also be updating its epilepsy information.
Pathology and post mortem investigations
NCAERD found that only 10% of families were contacted by a specialist following an epilepsy related death and that there were no specific guidelines for the investigation of epilepsy specific death. The Department of Health is aiming to improve post mortem practice and to improve support for families at the time of bereavement.
Whilst it is gratifying that epilepsy has finally been included on the Department of Health's agenda, the Action Plan is primarily based on existing initiatives to improve the NHS - many of which deal with neurology generally rather than epilepsy specifically. What is particularly disappointing is that the Action Plan promises to engage with local health organisations to improve epilepsy services, but there is apparently no power or will to force improvements through. Without making significant investment available it is difficult to see how any such improvements will be made. The situation may change in the future with the implementation of the various National Service Frameworks, but sadly epilepsy remains a severely underfunded condition.
JEC Response to the Department of Health Action Plan
The Joint Epilepsy Council 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.
Whilst 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. Whilst 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 attached document we have briefly analysed the various points within the governments action plan and have indicated our view on these and how they could be improved.