Functional/Dissociative Seizures in Wales

Background
Functional/dissociative seizures (FDS) can resemble epileptic seizures, but they are not caused by epileptic brain activity. They occur in susceptible individuals due to abnormal processing of triggers such as thoughts, emotions or sensory stimulation. They are frequently misdiagnosed and treated as epilepsy.

FDS are often unpredictable and distressing. They can cause injuries and leave people in a vulnerable state. They are associated with high rates of mental and physical illness and unemployment, and a high premature-death rate, like epilepsy.

Many patients with FDS are frequent emergency-service users, but in Wales they face large gaps in diagnostic and treatment services. Estimates suggest that FDS may affect as many as 1 in 1,000 people, making it more common than Multiple Sclerosis. However, we don’t know how many people in Wales have FDS or what factors can increase their risk of poor outcomes.

Aims
To improve outcomes for people in Wales with FDS by creating a method of accurately identifying the condition; and to produce data to inform healthcare-service planning, enabling better targeting of those at highest risk of poorer outcomes.
To achieve our aims, we will:

• Develop a method of identifying people with FDS within routinely-collected healthcare data
• Use this method to describe the characteristics of people in Wales with FDS
• Measure their healthcare usage
• Measure important outcomes, including healthcare problems and deaths
• Identify those at higher risk of severe outcomes

We will involve individuals with lived experience of FDS throughout.

If we can develop a method for reliably identifying patients with FDS, we can use it to determine: how many people are affected by FDS in Wales; their backgrounds (deprivation level); other illnesses that they face; how they use healthcare services; and their outcomes (including deaths and other medical problems). We also aim to discover features that predict risk of poor outcomes for people with FDS, to support the development and targeting of interventions and treatments.

Making a difference
We have co-developed this proposal with FND Hope, a charity representing people with FDS, and discussed it with members of the public from diverse backgrounds. Six public partners with lived experience of FDS have co-developed the proposal and will be part of the project team.

We aim to use the results of our study to improve the care and lives of people living with FDS in Wales and beyond. Our FDS identification method could be used in healthcare settings to identify individuals with FDS. Better data about these patients will help with planning and developing services. Information about those at risk of poorer outcomes will help target limited resources and interventions to greatest effect, improving and saving lives while reducing unnecessary healthcare costs.