International Epilepsy Day and the WHO’s global action plan

Posted: 09/02/2024

Falling on the second Monday in February, International Epilepsy Day this year is on 12 February 2024. International Epilepsy Day seeks to raise awareness and educate the general public, and to provide a platform for people with epilepsy to share experiences and break down misconceptions around the condition.

Organised by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), the focus of International Epilepsy Day is driving forward the implementation of the WHO’s Intersectoral global action plan on epilepsy and other neurological disorders 2022 - 2031 (IGAP).

The IGAP is a roadmap for strengthening the public health approach towards epilepsy worldwide. It aims to address the treatment and inclusion gaps people with epilepsy face. The WHO notes that significant barriers to equality include a lack of understanding about what epilepsy is, and the social stigma attached to it.

A lack of knowledge also contributes to challenges in accessing treatment, misdiagnosis, inappropriate treatment decisions and insufficient support for people with epilepsy. Three key areas of action as recognised by the WHO include: the ability of health workers to diagnose epilepsy, the availability of medicines and treatments, and research into the health and social care response to epilepsy.

What is epilepsy?

Epilepsy is the fourth most common neurological disorder in the world, with 65 million people diagnosed worldwide. It is a brain disorder where surges of electrical activity can cause recurring, unprovoked seizures. Whilst every brain has the potential to suffer from seizures, those with epilepsy have a lower seizure threshold, meaning they are more likely. It is often a lifelong condition, but for some people symptoms can improve slowly over time.

Epilepsy is a spectrum disorder, where people can have different types of seizures of different frequencies and severity levels. However, it is important to note that not everyone who has a seizure has epilepsy, and a seizure as an individual event can be a symptom of other medical problems.

There are many different causes of epilepsy, and these can differ from person to person; for example: genetics, brain trauma, autoimmune disorders, metabolic issues or infectious disease. For others there is no identifiable cause. Sadly, there is also a higher prevalence of mental health difficulties, learning difficulties, neurodevelopmental comorbidities and dementia in people with epilepsy, as well as a higher risk of suicide compared with the general population.

How is epilepsy treated?

Whilst epilepsy is usually a lifelong condition, most people are able to live normal lives if their seizures are well controlled. However, people with epilepsy often have to think more carefully before doing things those without epilepsy may take for granted, such as driving, applying for certain jobs, swimming, using contraception, and planning a pregnancy.

There are multiple treatments available for people with epilepsy, which include antiseizure medications (ASMs), surgery, dietary therapy and neurostimulation devices. ASMs are the most common way of treating epilepsy and successfully control seizures for about 7 out of 10 people. Often medication is used in conjunction with other therapies such as dietary therapy.

Where epilepsy may be drug resistant, neurostimulation devices can be used to send small electric currents to the nervous system, to make the brain cells work correctly and reduce the number of seizures suffered. Alternatively, surgery may be used to remove the affected part of the brain to control the seizures and provide an improved quality of life.

Epilepsy caused by clinical negligence

Failings in care during pregnancy or delivery of a baby can lead to injuries that may result in an epilepsy diagnosis. For example, epilepsy occurs in about one-third of people with cerebral palsy, which can be caused by a lack of oxygen at birth.

Clinical negligence claims can also arise where there has been a misdiagnosis of epilepsy, or a failure to correctly diagnose it. This could lead to a person without epilepsy receiving treatment that does not address the underlying condition, causing their seizures or a person with epilepsy receiving incorrect treatment. There may also be concerns about the mismanagement of the person’s condition by their health care professionals.

How to get involved

This year, there will be a worldwide effort to increase epilepsy awareness by promoting the hashtag #EpilepsyDay across all social media sites. To find out more ways to get involved, please visit the Epilepsy Foundation’s website here. Epilepsy Action has also launched its campaign to ‘turn the world purple’ to help raise money for people living with epilepsy. More information can be found here.

To help someone who may be having a seizure, more information can be found here.

This article was co-authored with Ellen Banks, trainee solicitor in the clinical negligence team.

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