Current affairs

There has been a failure of global health systems to properly tackle epilepsy

The ‘care gap’ is a term used across healthcare to describe the notable difference between best practice and the care people receive.

This is a term we see used quite often and it is especially relevant to the field of epilepsy, as the gap feels as though it isn’t closing fast enough or it may be getting even wider.

I’ve been working alongside a group of epilepsy specialists identifying the gap and proposing solutions to it. Recently, we published our work, which demonstrated a global failure of health systems to use new breakthrough treatments for epilepsy in the US.

Our work, however, only tackles one of the types of barriers faced by people with epilepsy – something that is part of a wider issue, which for the millions living with epilepsy worldwide, is devastating, and in many cases, preventable.

Epilepsy is one of the most widespread neurological diseases in the world, affecting approximately 50 million people of all ages.

The recurrent seizures associated with this condition have wide-ranging effects on a person’s broader health, well-being, education, employment and relationships.
In Europe, of the six million people diagnosed with epilepsy, some 60% are receiving ongoing treatment.

As a largely ‘invisible’ condition – there is limited ‘physical’ presentation except when seizures are active, coupled with low awareness and societal stigma – these patients’ needs are not recognised.

Many countries do not categorise epilepsy as a brain disorder, leading to a more difficult journey to care on both a policy and healthcare system level.

What is not invisible is the enormous damage these oversights cause. The complications associated with epilepsy are severe, with a risk of premature mortality up to three times higher and life expectancy reduced by as much as ten years.

Add the daily challenge of being discriminated against, not having proper access to care or support services, and feeling unsafe in many settings, this can lead to extreme feelings of isolation, anxiety and depression.

Unemployment is also three times higher for people with epilepsy. When we consider seizures can happen at any time and everyday activities such as climbing stairs or standing on a train platform could suddenly become fatal, we can begin to understand why managing a long-term job might be difficult.

It also radically impacts relationships, causing real difficulties in maintaining a good quality of life.

Think for a moment how you would feel if you had to bear these burdens. Basic human needs can be incredibly hard to achieve for people with epilepsy, who can experience a near-constant state of exhaustion due to the seizures themselves, as well as concomitant sleep disorders and psychiatric problems often associated with the condition.

While there are treatments available and a renewed spur of research to bring more innovation to this space, these challenges mean the majority of patients do not receive adequate care to manage their seizure-related symptoms.

From what I have seen in my clinical practice, and within the brain health space more broadly, our healthcare community knows how to help patients and close the care gaps they face – but they need help to do so.

Simple changes to close care and treatment gaps can radically improve their condition and quality of life. First, more needs to be done to help understand the perspectives and challenges of those living with the condition.

This could be as simple as increasing primary care awareness of epilepsy and how it can be treated, or as big as training and expanding the presence of support structures and systems in countries with poor coverage.

At its core, the overarching goals should be: increasing understanding and access to medical care; tackling institutional and social stigma; and building greater awareness and allyship in the broader public.

It is my hope we can work together to help alleviate what can be a vicious cycle for people living with epilepsy.

I believe we can, and that these ‘invisible’ gaps must be addressed to bring light to and solutions for these patients.

The struggles people living with epilepsy face should be visible, and they deserve more from us as healthcare providers, in systems of care and government and within society to have a better chance for improved quality of life.

Dr Bernhard Steinhoff is Professor of Neurology and Clinical Neurophysiology at University of Freiburg