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of everyone affected by epilepsy

Action Plan - Introduction

February 2003

You can read the Department of Health's Action Plan below, with comments by Epilepsy Action and the Joint Epilepsy Council are in the boxes:


1. Epilepsy is the most common chronic disabling condition of the nervous system affecting around 380,000 people in England. Almost 800 of these people die every year as a result of epilepsy and most of these deaths are associated with seizures.

2. The National Clinical Audit of Epilepsy-related Death (SUDEP audit) published in May 2002 has provided some useful information to improve our understanding of epilepsy deaths. The Department of Health welcomes the report and acknowledges the important role played by the voluntary organisation, Epilepsy Bereaved in project managing the audit. We will continue to work with the epilepsy voluntary organisations to ensure that the views of patients/service users and their representatives are fairly represented in the development of epilepsy policy.

3. In his 2001 report, the Chief Medical Officer recommended that an action plan to improve epilepsy services and address the audit findings should be published. The Department of Health is committed to improving standards of care and support for people with epilepsy and their families. We hope this action plan will be the start of a process of improving awareness and understanding of Sudden Unexpected Death in Epilepsy (SUDEP) and will lead to improved care and services for people with epilepsy. It is intended to address the needs of all groups, including those with learning disabilities.

4. The action plan recognises that local health services face many challenges and priorities. It has therefore been developed in a way that complements rather than duplicates existing initiatives and policies. It also recognises the broader context of the Planning and Priorities Framework (PPF) which sets out the current priorities for the NHS, and substantial increases in resources for health and social care which give local health communities the opportunity to plan and deliver services over the next three years with a greater degree of flexibility and autonomy.

The JEC says:

We are very concerned that epilepsy is to be excluded from any target setting. At the very least there need to be specific targets relating to long term monitoring, reduction of mortality, severe morbidity and diagnostic accuracy. PCT Indicators 2002 included asthma, diabetes & monitoring change in deaths from a range of conditions, but epilepsy was excluded.

It essential that there is an indicator collecting data on age-standardised mortality rate from epilepsy in persons under 75 per 100,000 population.

We would like to see a specific indicator for epilepsy as epilepsy management in primary care has not benefited from developments focused on asthma and diabetes. There are many potential indicators but even one indicator would be a start for ensuring epilepsy was not entirely excluded from a PCT agenda.  

5. The action plan should inform what local health communities do in the short term to address key findings and recommendations of the audit and recommendations in the Chief Medical Officer’s 2001 report. It takes into account two major pieces of work currently in development that will contribute significantly to better epilepsy services:

The National Institute for Clinical Excellence (NICE) is looking at a range of anti-epileptic drugs for children and adults and is expected to produce guidance by October 2003 which will help address the ‘post-code lottery’ of getting these treatments. It is also developing a clinical guideline for the diagnosis, management and treatment of epilepsy, by June 2004.

The National Service Framework for Long-term Conditions (NSF) will have a particular focus on neurological conditions, including epilepsy. We expect to publish the NSF in 2004 with a 10-year implementation programme starting in 2005.

The JEC says:

We are concerned that without any specific recognition of epilepsy in the development of service models, serious deficiencies in access to epilepsy expertise in the NHS will continue. For example we are aware that patient organisations are lobbying on the grounds that the Mental Health Service Framework is not delivering change on the ground as Primary Care Trusts are prioritising resources to meet waiting times for surgery.  


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