The role of third-sector helplines in epilepsy support: Insights from a retrospective analysis of routine data from a UK service (2020–2024)

Purpose

Globally, free-to-access epilepsy helplines run by third-sector organizations are an established part of the support landscape. Despite guidelines recommending clinicians signpost individuals to them, their usage and impact have never been reported. We aimed to quantify demand for, and the nature of, contacts to a UK epilepsy helpline; assess reach and equity of access; and explore whether data on the issues people raised might serve as an indicator of changing community needs.

Methods

Retrospective analysis of anonymized records from contacts to Epilepsy Action’s helpline between October 2020 and September 2024. Descriptive statistics and incidence rate calculations were used to assess contact characteristics, geographic and socioeconomic distribution, and the topic codes assigned to contacts by trained advisors.

Results

Helpline received 32,964 contacts from 25,316 individuals—mainly people with epilepsy (69.7 %) and family/friends (24.6 %). Use increased by 40 % over the period, exceeding population growth, with 11.43 contacts per 1000 prevalent cases in 2020/21 and 16.03 in 2023/24. Contacts came from across the UK, but fewer originated from more deprived areas than expected. Users sought support on a wide range of medical, emotional, and practical issues, with increasing contact complexity over time. Topics varied by deprivation level. Shifts over time in issues raised aligned with real-world events (e.g., COVID-19, medication shortages).

Conclusion

This first systematic examination of a third-sector epilepsy helpline reveals high and growing demand, broad reach, and access inequities. Routine helpline data may offer a novel, real-time lens on community needs. Our analytic method could support evaluations of other helplines.