As the parent of a child living with complex drug-resistant epilepsy, one of the greatest barriers we face is not just the condition itself, but the widespread lack of awareness and understanding of seizures. This lack of knowledge is not limited to the general public; alarmingly, it extends to many healthcare professionals.

Epilepsy is a complex neurological disorder with seizures as its defining symptom. However, there is a prevalent misconception that all seizures are convulsive. This is far from the truth. Seizures can manifest in various forms, both convulsive and non-convulsive, each with its own level of seriousness. Ignorance regarding non-convulsive seizures can lead to inadequate emergency responses, delayed treatment, and sometimes, tragic outcomes.

Paramedics, often the first medical responders during a seizure, must be adequately trained to identify and manage all types of seizures, including non-convulsive seizures which are often overlooked. Current training programs for paramedics and medical professionals frequently fall short, lacking comprehensive and updated content on the full spectrum of seizure types.

Statistics indicate that approximately 1 in 26 people will develop epilepsy at some point in their lives. Despite its prevalence, epilepsy awareness and education remain inadequate. This gap in knowledge and preparedness can mean the difference between life and death during a seizure episode, especially in cases of complex, drug-resistant epilepsy.

This isn’t just our experience, it’s supported by evidence.

Research suggests that UK paramedics do not currently receive comprehensive epilepsy awareness training. Studies have found that:

Only 27% of UK paramedics feel very or extremely confident making non-conveyance decisions for people experiencing seizures.

Training often focuses on convulsive status epilepticus, while seizure recognition, seizure differentiation, and post-seizure risk assessment receive far less attention.

Limited access to patient medical histories and specialist care pathways can lead to unnecessary hospital conveyance, placing additional pressure on emergency departments and causing avoidable distress for patients and families.

We call for mandatory training requirements to be established for all paramedics and healthcare providers to encompass comprehensive education on all types of seizures. This training should include up-to-date modules on the diagnosis, identification, and management of both convulsive and non-convulsive seizures. Furthermore, continuous education on epilepsy should be mandated to ensure that all current and future medical professionals maintain and expand their knowledge base in this critical area.

By signing this petition, you are adding your voice to a crucial cause that aims to equip our emergency responders and medical community with the tools needed to successfully manage epilepsy in its many forms. This initiative seeks to save lives, reduce stigma, and provide better support for individuals living with epilepsy and their families.

Please sign this petition to advocate for life saving training and contribute towards a future where epilepsy is understood, and managed effectively.