Epilepsy is not a priority for local healthcare decision makers in England according to a new report, published October 22, 2014 by national charity Epilepsy Action. This is despite the fact that epilepsy is one of the most common serious neurological conditions in England, affecting 500,000 people and costing an estimated £2 billion each year[1].

Epilepsy Action's report Epilepsy in England: The Local Picture draws on information from health and wellbeing boards and clinical commissioning groups (CCGs)[2]. These organisations have responsibility for identifying local health needs and commissioning healthcare services to meet them. They were asked to provide information on their plans to support people with epilepsy. The report reveals that:

  • Just three out of 140 health and wellbeing boards in England provided evidence of making local plans for people with epilepsy
  • Only 10 per cent of CCGs have a written needs assessment in place for people with epilepsy
  • Of the CCGs surveyed 78 per cent have not developed, and do not intend to develop, a written needs assessment for people with epilepsy in their area

Previous research[3] has shown that people with epilepsy are not getting a consistently good level of care across England. Many can't access epilepsy specialist nurses, wait too long to see specialists and aren't being referred to explore other treatments for their epilepsy. Epilepsy Action is concerned that without effective assessments of need and robust plans, services for people with epilepsy will not improve and that inequalities in the availability and the quality of care will continue to exist.

In response to the report findings, Epilepsy Action is asking health and wellbeing boards and CCGs to sign up to its Pledge of Action, making a promise to address the needs of people with epilepsy by April 2016. The charity is also encouraging local decision makers to work together to support people with epilepsy to identify priorities and to commission services based on need.

Simon Wigglesworth, deputy chief executive of Epilepsy Action, said: "The findings of this report are concerning. They show that the organisations tasked with understanding the local needs of people with epilepsy do not consider it to be a priority and, in many places, don't even know how many people with epilepsy live in their area. Not enough is being done to understand and meet the healthcare needs of people with epilepsy on a local level - this must change. If the organisations who plan the services won't consider the needs of people with epilepsy, who will?

"We want local decision makers to take steps now to improve healthcare services for people with epilepsy in their area. The first step is for health and wellbeing boards and CCGs to sign up to our Pledge of Action and make a commitment to put plans into place by April 2016. Only then will people with epilepsy in local communities begin to feel that their voice is being heard."

The report is accompanied by online maps which highlight local information provided by the CCGs and health and wellbeing boards that were surveyed. The maps can be viewed at epilepsy.org.uk/localpicture CCGs and health and wellbeing boards can also sign up to the Pledge of Action on the website.