The COVID-19 pandemic has wrought devastation across the globe, resulting in unprecedented changes to our personal and professional lives
The excess burden on national health systems largely falls on healthcare workers, who are situated at the epicentre of this crisis. However, while public health priorities must focus on COVID-19, delivering regular epilepsy services remains as important as ever.
In response, SUDEP Action and the University of Oxford are researching how the COVID-19 pandemic has affected the delivery of services for people with epilepsy. This research will also contribute to our ongoing work on epilepsy risks and Sudden Unexpected Death in Epilepsy (SUDEP), by identifying the level of risk that people with epilepsy are exposed to, particularly in the context of public health emergencies.
How you can help
We want to understand the experiences of healthcare professionals who are actively treating people with epilepsy during the COVID-19 pandemic. We are interested in hearing your:
- personal experiences in working during the pandemic
- how wider disruption to healthcare services has impacted your ability to diagnose and treat patients with epilepsy
- the impact the current pandemic may be having on the safety and management of epilepsy risks for those with epilepsy
The survey will take around 15 minutes to complete. By sharing your information with SUDEP Action and our team of researchers, you can play a vital role in uncovering the exposure to risk for people with epilepsy both during the COVID-19 pandemic and beyond.
Looking forward, this information will help to identify which areas of epilepsy care are most affected when health services experience periods of increased pressure.
Why is this research important?
21 people with epilepsy die suddenly each week in the UK alone. Nearly half of these deaths are thought to be preventable. For many people, the risk of seizures, and the associated risk of death, is modifiable with well-planned treatment. An awareness of lifestyle-associated seizure risk has also demonstrated to lower the number of seizures, helping people to manage and, where possible, avoid certain triggers.
However, the current disruption to health services and day-to-day life could impact people’s access to appropriate health interventions and ability to manage their epilepsy. This survey aims to understand how changes related to COVID-19 are affecting people with epilepsy, from a patient, carer and clinician’s perspective.
Phase 1 – gather data on epilepsy services, risks and health outcomes (including deaths) on a local, national and global scale.
Phase 2 – Contextualise the data, comparing differences in risk during normal periods and during the COVID-19 ‘lockdown’ measures.
Phase 3 – Identify the strengths and weaknesses in health service delivery for people with epilepsy, informing guidelines for best-practice in seizure risk reduction and enhancing preparedness strategies during health emergencies.
To keep up to date on the progress of the project & to hear about SUDEP Action’s other research, projects, free resources & information – sign up to our professional enews here.
If you would like to access to resources on communicating risk to patients, see our evidence-based SUDEP and Seizure Safety Checklist. You can also find information on our award-winning EpSMon epilepsy self-monitoring app, which was developed to help patients understand their exposure to seizure risk (UK only).
Information on epilepsy risks to support your patients is also available for free here: https://sudep.org/epilepsy-and-risk
If you have questions or concerns about the project, please contact us:
SUDEP Action – [email protected] or 01235 772850
Lead Researcher – Dr Arjune Sen ([email protected])