01

Systematic review of under- and over-reporting of seizures in epilepsy: prevalence, mechanisms and clinical implications

Naveen Kumar¹, Joao Pizarro², Rohan Kandasamy³, Matthew Walker^2,4, Mahinda Yogarajah⁵

¹King’s College Hospital, ²Chalfont Centre for Epilepsy, ³Department of Clinical Neurophysiology, The National Hospital for Neurology & Neurosurgery, ⁴Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, ⁵Institute of Neurology, Queen Square

Introduction: Seizure frequency guides clinical decisions, driving advice, and trial endpoints, yet commonly patients both under- and over-report. Under-reporting may reflect impaired awareness/recall, but this cannot explain over-reporting. This review aims to quantify under- and over-reporting, identify predictive factors for both, and discuss possible mechanisms.

Methods: Following PRISMA (2020) standards, we searched Medline, Embase, and PsycINFO (1990–present) for articles comparing patient-reported to EEG-determined seizure frequency. All seizure types were included, and paediatric-only and carer reporting-only studies were excluded. Article screening/data extraction were completed in duplicate.

Results: Fifteen studies were included. 62.2% (38.6%-98.3%) of seizures were unreported and 48% (26%-76%) were over-reported. Under-reporting was highest for nocturnal and impaired-awareness seizures, while over-reporting was commonest with absence-type seizures and in female patients.

Conclusions: Seizure misreporting is highly prevalent and bi-directional. Traditional explanations, focusing on impaired consciousness and recall, do not account for missed pre- or postictal cues, and cannot explain over-reporting. Altered interoception, and hence altered bodily self-awareness, may contribute to unrecognised or misattributed seizures, providing a parsimonious mechanism for seizure misreporting, and highlighting potential markers to identify patients at risk of diary inaccuracy.

02

A Disappearing Disease? Epidemiologic Trends of Hippocampal Sclerosis in a Multicentre Cohort

Nicholas Fearns¹, Paula Albert i Gracenea², Selina Trapp², Kai Michael Schubert¹, Luisa Delazer¹, Jan Rémi², Christian Vollmar², Josemir Sander¹, Ingmar Blümcke³, Christoph Helmstaedter⁴, Elisabeth Kaufmann², Matthias Koepp¹

¹UCL Queen Square Institute Of Neurology, ²LMU University Hospital, Department of Neurology, ³University Hospital Erlangen, Institute of Neuropathology, ⁴University Hospital Bonn, Department of Epileptology

Rationale: Hippocampal sclerosis (HS) is the classic structural basis of mesial temporal lobe epilepsy and has historically been the most common histopathological diagnosis in epilepsy surgery. Single-center studies suggest a decline in HS and changes in its clinical phenotype, but large-scale multicenter analyses with histopathological validation are lacking. This study examined temporal trends in the frequency and clinical profile of HS in a large European multicenter cohort. We tested the hypotheses that (1) the proportion of HS among epilepsy surgery specimens decreases over time and (2) the age at epilepsy onset in patients with HS increases, particularly as a birth-cohort–dependent effect.

Methods: We conducted a retrospective multicenter cohort study based on the European Epilepsy Brain Bank (EEBB), including 9,147 patients operated on between 2000 and 2012 at 36 European epilepsy centers. HS was defined histopathologically per the ILAE classification. Primary analyses comprised temporal trends in the proportion of HS and changes in age at epilepsy onset. To address selection and referral bias, analyses were performed both by year of surgery and by year of epilepsy onset.

Results: HS was diagnosed in 3,260 of 9,147 cases (35.6%). The proportion among all surgical specimens decreased significantly from 42.2% in 2000 to 25.2% in 2012 (–1.57 percentage points/year; p<0.001), reflecting a moderate reduction in absolute HS cases alongside a marked increase in non-HS procedures. Analyzed by epilepsy onset, the trend was more pronounced: HS fell from ~47% for onset in the 1960s–1970s to 14.5% for onset in 1995–2012, and below 10% in the most recent cohorts. In parallel, age at onset in HS rose significantly. By year of surgery, mean onset age increased from 15.6 to 18.2 years (p<0.001), whereas non-HS patients showed the opposite trend. This effect was stronger by year of onset: mean onset age in HS rose from 12.5 years (1960–1979) to 21.7 years (1995–2009; p<10⁻¹⁸), versus 8.8 to 11.1 years in non-HS patients, widening the group gap from 3.7 to 10.6 years.

Conclusions: This large multicenter analysis confirms a clear decline in HS and a shift toward later epilepsy onset across several decades, suggesting that classic HS-associated temporal lobe epilepsy is becoming increasingly rare and clinically changing. Possible explanations include improved treatment of prolonged febrile seizures, viral encephalitides, and autoimmune encephalitides.

03

Mind the Epilepsy Treatment Gap: Structural, Social and Health-system Barriers

Paola Favarato^1,2, Sena Kaya^1,2, Rebecca Yerin Im^1,2, Kasturi Kannan^1,2, Prem Jareons ettasin^1,2, Josemir W. Sander^1,2

¹UCL Queen Square Institute of Neurology, ²Social Determinants of Health in Epileptic Disorders (SdHIELD) Research Group

The epilepsy treatment gap (TG) is the proportion of people with epilepsy who require treatment but do not receive it. Despite many campaigns, TG remains large and persistent, particularly in low-resourced settings. We review the available evidence on TG, particularly potential causes and modifiable factors. We used the PRISMA extension for scoping reviews. We searched PubMed, Web of Science, Embase, Scopus, Ovid Global Health, PsychINFO and identified 393 relevant articles. 

TG is not a single problem but a cascade of barriers (the 5 ‘A’s):1) Epilepsy Awareness, 2) Care Availability, 3) Treatment Accessibility, 4) Treatment Affordability, and 5) Treatment Adherence. The TG varies geographically, between and within countries. TG severity and patterns of underlying causes vary geographically between and within countries. This variation is largely driven by social determinants of health (SDH). 

The awareness gap comprises multiple failure points. These include awareness, in which seizures are misattributed to supernatural, moral, or contagious causes; community awareness, in which social exclusion shapes health-seeking behaviour; and provider awareness, which can delay or divert treatment. Many studies measure TG among recognised cases and fail to include those who fail to enter the care pathway. Availability of neuroimaging, EEG, basic antiseizure medications, and epilepsy surgery is low in low-income countries. High-income countries show a geographical mismatch between supply and demand for specialist services, contributing to socioeconomic and racial inequality. The accessibility gap persists even where services exist. Factors include rurality, opportunity cost and medication distribution constraints. The affordability of antiseizure medications (ASM) remains a large problem that goes beyond drug price alone. It includes travel costs, wage loss, repeated appointments, and costs of long-term treatment. Adherence gaps are driven more by clinic-demographic factors, including ASM costs, availability, tolerability, and polytherapy, than by beliefs in low-income settings. Higher literacy is a protective factor, as it improves perceptions of treatment need. Seizure remission and employment status paradoxically increase non-adherence by reducing perceived need or making regular medication harder to sustain. Recent work has shown that exposure to environmental toxins, such as air pollutants, can affect pharmacokinetics and, consequently, ASM tolerability.

Despite progress in understanding potential causes of TG, significant knowledge gaps remain and require further work. The TG is particularly worse amongst disadvantaged groups such as ethnic minorities and those of low socioeconomic status. An understanding of SDH and local factors is needed to develop optimal intervention strategies.

04

Non-attendance at first seizure education sessions: associated factors and potential solutions

Dr Rhys Thomas, Raphaëlle Landais, Laure Juliette Landais, Mary Thornton, Joanne Glenton

Newcastle University

Purpose: As per NICE, all patients should see an epilepsy specialist nurse after receiving a diagnosis of epilepsy. At the Royal Victoria Infirmary (RVI), this is carried out through a group consultation. A previous audit (2022) found that this was poorly attended, particularly by patients from more deprived socioeconomic backgrounds. To encourage attendance, these sessions were reframed as a necessary part of the treatment pathway and video links were provided to non-attenders. This re-audit evaluates the effectiveness of this intervention.

Methods: We reviewed all patients who were invited to attend the group consultations at the RVI in Newcastle between July 2025 to March 2026. Information was collected on patient demographics, intellectual disability, and mental health, drug and alcohol history. Postcodes were used to calculate the index of multiple deprivation (IMD), and distance from the RVI.

Results: 211 patients were invited to the group consultation; 105 (50%) attended. 63% of attenders and 56% of non-attenders were male (not significant). Attenders had a mean age of 40y (17-83y), which was higher than the mean of 35y for non-attenders (17-81y, p=0.013). Attenders did not differ from non-attenders with regards to learning difficulties, or drug/alcohol problems (3.8% vs 6.6%; 17.1% vs 27.4% respectively), however the incidence of mental health problems was greater in non-attenders (55% vs 38%, p=0.015). Mental health (37.8% v 37.8%) was not found to be a factor for non-attendance in the previous audit. Attenders lived a mean of 9.0miles (0.5-57.7mi) from the hospital, similar to non-attenders (8.3mi, 1.0-33.7mi). Both groups had low average deprivation deciles (mean decile 4.0 vs 4.3 for attenders, p=0.39), compared to the previous audit which showed non-attendance correlated with lower deprivation scores (mean decile 3.5 vs 4.9 for attenders, p<0.005).

Discussion: This intervention reduced the discrepancy in attendance between socioeconomic backgrounds; however attendance was poorer amongst younger patients and those with mental health problems. To improve access to the information delivered in the session, we designed an easy-read leaflet with simple explanations and pictorial representations. The information was taken from the NHS website and checked by an experienced clinician. This leaflet offers an adjunct to group consultation sessions and aims to empower every patient, regardless of literacy level, by providing them with an easily accessible source of clinical information outside of the doctor’s office.

05

A rationalised approach to the management of newly diagnosed seizures in hospital 

Piotr Wasilewski², Cameron Pinn², Andrew Dimech¹, Emily Bligh¹, Nilesh Mundil¹

¹Department of Neurosurgery, Wessex Neurological Centre, ²University of Southampton Medical School

Purpose: Epilepsy is the second commonest neurological condition. Its diagnosis carries significant physical, psychological and lifestyle implications for patients. 

Not every suspected seizure represents epilepsy, particularly in an acute setting, where seizures may be provoked by structural, metabolic, infective or iatrogenic causes. NICE recommends urgent specialist assessment after a first suspected seizure and institution of AED therapy once epilepsy is confirmed.

We aimed to evaluate the investigation, treatment and follow up of newly diagnosed seizures in hospital with a view to rationalising and standardising future management.  

Methods: A retrospective review of adult and paediatric patients admitted to Wessex Neurological Centre (neurosurgery, neurology and Neuro-ICU) between 01/12/2024 and 31/01/2025. Patients were identified using a search of seizure- and epilepsy-related ICD-10 codes.

Electronic records were reviewed for semiology, collateral history, diagnostic classification, investigations, aetiology, AED initiation/modification, prescribing rationale and follow-up.

Results: Of 73 records, 41 fulfilled our inclusion criteria: 21 adult neurology, 9 adult neurosurgery and 11 paediatric neurology admissions. AED therapy was started, changed or continued in 36 patients (87.8%). Levetiracetam was the most frequently prescribed AED, (75.6%): 15/21 adult neurology, 5/9 adult neurosurgery and 11/11 paediatric neurology cases.

Treatment prior to formal diagnosis occurred in 8/21 adult neurology patients (38.1%), 6/9 adult neurosurgical patients (66.7%) and 6/11 paediatric neurology patients (54.5%).

An electroencephalogram was requested in 39.0% cases, while cranial imaging was performed in 82.9% patients. Neurology/neurosurgical follow-up was arranged in 70.7% cases, with 26.9% patients reviewed within 8 weeks of ictus and 73.1% reviewed thereafter. 

Safety-netting was documented in 85.4% patients, with specific driving advice/restrictions recorded in only 16.7% adult cases. Documentation regarding intended AED duration and continuation planning was by and large absent or unclear.

Conclusions: Prescribing anticonvulsants on presumption of epilepsy was more often initiated in surgical patients. Levetiracetam was the commonest anticonvulsant used, in keeping with its more favourable side effect profile. Long-term dosing plans, driving advice and timing of follow-up were inconsistently documented. Future multi-centre studies could evaluate variation in local inpatient post-first seizure review protocols.

Epilepsy remains poorly understood in an acute inpatient setting and improved education about its management and long-term implications would be beneficial. A suspected seizure proforma was generated, to be issued to medical and nursing professionals alongside targeted education sessions before a closed-loop re-audit is performed to assess the impact of rationalising seizure diagnosis and management in this setting. 

06

Improving maternity care for women with epilepsy in the UK: a national quality improvement initiative

Jen Cannon

Epilepsy Action

The Ockenden¹ and Amos² reports deliver a damning finding: without urgent action, maternity care in the UK will continue to put women and babies at risk. For pregnant people with epilepsy (PWE), the risks are even more significant: a ten-fold higher risk³ and the fifth leading cause⁴ of maternal death, alongside increased risks of miscarriage, complications and infant mortality⁵. These dangers persist in the UK despite clear national guidance⁶,⁷. The gap is not a lack of evidence, but inconsistent implementation, leaving preventable harm unaddressed. With epilepsy named as a priority in the NHS England Maternal Care Bundle (NHSE MCB)⁸, services face a pressing challenge: turning national guidance into reliable care in everyday clinical practice. 

In collaboration with two regional maternity providers in England, Epilepsy Action led a quality improvement initiative to address gaps in care for PWE. A mixed-methods approach was used in one pilot region, including regional gap analysis across providers, UK-wide surveys, and engagement with healthcare professionals and PWE. Identified barriers included limited awareness of guidance, insufficient preconception counselling, disparate multidisciplinary care, and a lack of confidence and trust among patients.

To address these issues, a self-assessment and benchmarking tool was co-produced with healthcare professionals in the pilot region. This tool aided the evaluation of adherence of current services to existing guidance, including the NHSE MCB.

Baseline benchmarking revealed substantial variation in care. In one region, providers met an average of 40% of minimum standards (range 24–69%), with governance-related measures showing particularly low adherence (13%), while pregnancy care and discharge planning showed higher adherence (56%). In the second region, overall adherence was 47% (range 30–69%), with governance again the lowest scoring domain (18%).

Following implementation, providers reported greater confidence in reducing mortality and stronger assurance against the epilepsy standards in the NHSE MCB. As a result of this work, one region’s Maternal Medicine Network has commissioned an epilepsy specialist midwife role to support patients with complex epilepsy.

This initiative shows the value of collaboration between the NHS and the third sector on healthcare improvement projects. It demonstrates that co-produced, practical tools enable providers to translate national guidance into a standardised, routine practice and support implementation of the NHSE MCB. If this initiative is adopted across the UK, this will enable consistent, safe maternity care for PWE, which have the potential to reduce maternal mortality and improve outcomes for pregnant PWE and their babies across the UK.

07

Area-Level Deprivation and Clinic Non-Attendance in a Regional Maternal Epilepsy Service: A Retrospective Audit

Gemma Clarke, Katie Cranfield, James Cameron, Dr Rhys Thomas

Newcastle University

Background: Pregnant women with epilepsy require timely specialist review to optimise seizure control, minimise maternal and foetal complications, and ensure appropriate medication management. Regional guidance recommends early risk stratification and regular antenatal follow-up; however, clinic non-attendance may delay delivery of this care. Identifying patients at higher risk of non-attendance could allow targeted interventions. This audit assessed whether socioeconomic deprivation, measured using the Index of Multiple Deprivation (IMD), was associated with clinic non-attendance.

Methods: A retrospective audit was performed of consecutive maternal epilepsy clinic appointments between January and May 2026. Attendance status was recorded for each clinic encounter. Patients who were no longer pregnant were excluded. Residential postcodes were mapped to IMD scores to obtain overall deprivation and seven domain-specific scores (income, employment, education and skills, health and disability, crime, living environment, and barriers to housing and services). Mean deprivation scores were compared between attendees and non-attendees. The average age of non-attendees and number of telephone appointments were recorded. As this was a service evaluation audit, analyses were descriptive.

Results: 97 clinic encounters were analysed, of which 11 were recorded as non-attendances (DNA rate 11.3%). Non-attendees demonstrated higher mean IMD scores overall (65.1 vs 61.2) and across five of seven deprivation domains. Median IMD score were 70 for non-attendees compares to 65 for attendees. However, differences between groups were consistently below 10%, with substantial variability within both cohorts. Patients from highly deprived neighbourhoods frequently attended appointments, while some individuals from relatively low-deprivation areas did not, indicating considerable overlap between groups. Although 11 appointments were not attended, 9 patients were subsequently reviewed during later antenatal appointments, with only two patients remaining unseen within the audit period.

Of the 11 non-attendances, the average age was 22.5 years. 5 patients were not previously known to the service and 5 of the missed consultations were scheduled as telephone appointments. No patient missed more than 1 scheduled appointment within the audit window.

Conclusion: Within this cohort, area-level deprivation measured using the IMD was not sufficiently discriminatory to identify women at increased risk of clinic non-attendance. The findings suggest that deprivation alone is unlikely to be an effective basis for targeted intervention. Future work should evaluate individual-level predictors, including previous engagement with healthcare services, co-existing mental health conditions, social support and safeguarding concerns, to improve attendance and optimise maternal epilepsy care.

08

Menopause and Epilepsy: An interim analysis of baseline data from the Epilepsy and Menopause Register 

Emily Pegg^1,2, Rebecca Bromley²

¹Manchester Centre For Clinical Neurosciences/ University Of Manchester, ²Division of Neuroscience, University of Manchester 

Background: Previous studies on menopause and epilepsy are sparse but suggest earlier menopause and increased perimenopausal seizure frequency in some women with epilepsy. Despite a lack of strong evidence of increased seizure susceptibility with HRT, concerns may deter use and limit its benefits. To address these knowledge gaps, the Epilepsy and Menopause Register was established to improve understanding of interactions between epilepsy, hormones, and comorbidities during the menopause transition.

Methods: Women with epilepsy aged 40-65 years were recruited via clinics and social media for a questionnaire-based study of menopausal stage, epilepsy characteristics, HRT use, and comorbidities. Validated questionnaires included GAD-7, PHQ-9, and PROMIS Sleep Disturbance. Baseline data from the first 6 months were analysed.

Results: 177 (77%) of enrolled participants (N=252) completed the study in 6 months. Most participants are white (92.2%) and living in areas of low socioeconomic deprivation. 35.5% were seizure free. 6.5% were premenopausal, 44.3% were perimenopausal, and 28.2% were postmenopausal. Peri- and post-menopause could not be distinguished in 11%, and menopausal status was unclassified in 8.5%.

Mean menopause age was 48.6 years. 38% of peri/post-menopausal participants used systemic HRT. Menopause status (pre- compared to peri- or post-menopause) was not associated with significant differences in seizure freedom rates. Peri/postmenopausal women using HRT were more likely to be seizure free than those not using HRT, χ2 (1, N=119) =4.05, p=0.044. 76% of participants met criteria for depression, 60% for anxiety, 62.1% for sleep disturbance, and 80% reported poor memory in the preceding four weeks. Depression and anxiety severity were higher in peri/postmenopausal than premenopausal women (mean PHQ-9 9.44 vs 5.92, t=-2.8, df=15.4, p=0.012, mean GAD-7 7.17 vs 3.33, t=-3.2, df=15.7, p=0.06). Menopause status was not associated with differences in sleep disturbance severity.

Conclusions: Menopause age was similar to the UK average. Depression, anxiety, and sleep disturbance were common, with depression and anxiety severity increasing from perimenopause onwards. In this cohort, HRT use is higher than in the general population, and HRT use is associated with higher seizure freedom rates. Longitudinal research is needed to determine whether this pattern reflects greater reluctance to use HRT among women with frequent seizures, or their clinicians, than when epilepsy is well controlled, or whether HRT itself may reduce seizure vulnerability, for example by reducing hormonal fluctuations. This is the largest study of menopause and epilepsy to date. Future recruitment should focus on premenopausal women and those from underrepresented groups.

09

Transforming Epilepsy Care in Pregnancy in Swansea Bay: Delivering Safe, Coordinated and Effective Multidisciplinary Care

Dimitri Akrivis, Jenny Edwards, Sharon Brown, Jorden Llewellyn, Owen Pickrell, Robert Powell, Madhuchanda Dey, Samantha Thalayasingam, Sara Williams, Inder Sawhney

Swansea Bay University Health Board

Background: Women with epilepsy are a high-risk obstetric group and require coordinated specialist care before, during and after pregnancy to minimise maternal and fetal complications. MBRRACE-UK has repeatedly identified epilepsy as a significant contributor to indirect maternal mortality. National guidance recommends preconception counselling, medication optimisation, seizure-risk assessment and coordinated obstetric and neurological care. A local review in Swansea Bay University Health Board identified similar findings to MBRRACE-UK, including fragmented pathways in which women attended separate obstetric and epilepsy appointments, often across different hospital sites, leading to duplication, inconsistent advice and delayed specialist input.

Aim: The aim was to establish a dedicated multidisciplinary Epilepsy in Pregnancy Clinic to provide timely, evidence-based, patient-centred care throughout pregnancy and the postnatal period, reducing variation and improving safety, experience and efficiency.

Method: In March 2021, Swansea Bay established the first dedicated multidisciplinary Epilepsy in Pregnancy Clinic in Wales, bringing together obstetricians, epilepsy specialist midwives, epilepsy specialist nurses and neurologists. The clinic introduced early referral, joint obstetric-neurology review, individualised epilepsy management plans, standardised counselling on anti-seizure medication adherence and SUDEP risk, birth planning, infant safety advice and structured postnatal follow-up.

Outcome: This clinic successfully integrated neurology and obstetric care into a single coordinated pathway, reducing fragmentation and improving communication between specialties. The service has seen an average of 40 women per year and supported each woman across her pregnancy journey for approximately seven months on average. Compared with the previous pathway, the integrated model reduced average antenatal appointments from eight to four by replacing separate specialty visits with one coordinated clinic. More than 90% of women were seen within two weeks of referral. Seventy-five percent remained seizure free during pregnancy; no women experienced an intrapartum seizure or developed status epilepticus. Overall, the obstetric intervention rates (e.g. Caesarean sections) remained comparable to the wider maternity population. Outcomes also include reduced clinic visits, consistency of advice, improved patient satisfaction.

Conclusion: Patient and clinician feedback showed improved continuity, clearer communication and greater confidence in medication decisions, seizure-risk management, birth planning, breastfeeding, contraception and postnatal safety. This project showcases that a multidisciplinary “epilepsy in pregnancy” clinic is feasible and sustainable, using existing resources. It demonstrates how a locally identified safety gap can be addressed through evidence-based pathway redesign and sustained collaboration. The Swansea Bay model aligns with MBRRACE-UK, RCOG and NICE recommendations and is informing wider service development through the All-Wales Epilepsy in Pregnancy Task Group.

10

Epilepsy care in pregnancy - a scoping survey

Emily Pegg, Dr Fahmida Chowdhury, Pooja Dassan, Christina Giavasi, Ana Garcia, Robert Powell, Ronan McGinty, Kasia Sieradzan, Janine Winterbottom, Ela Akay

Manchester Centre For Clinical Neurosciences/ University of Manchester

Background: Optimal epilepsy management during pregnancy is essential to reduce maternal morbidity and mortality while minimising foetal risk. National guidance, including NICE, MBRRACE-UK and the recently published NHS England Epilepsy Maternal Care Bundle, emphasises the need for multidisciplinary epilepsy-in-pregnancy services. Postnatal review and medication management is also recognised as a critical component of epilepsy care.

Currently, there is variation in the organisation and delivery of epilepsy care during pregnancy and there is limited consensus on the management of key aspects of clinical management of epilepsy in pregnancy.

This scoping survey, undertaken by the Epilepsy in Pregnancy Specialist Interest Group, aims to explore current models of care, identify variation in service provision and clinical practice, and highlight priorities for standardisation of practice and service development. 

Methods: Neurologists and Epilepsy Specialist Nurses (ESN) were invited to complete a 30-item online questionnaire from May-June 2026. The survey was disseminated via the ABN, ESNA, and the ILAE through conference promotion and member newsletters.

Results: There were 141 respondents, representing services across England, Northern Ireland, Scotland, and Wales. A joint neurology-obstetric clinic was available in around 50% of regions. Appointments were delivered via face-to-face, video, and telephone consultations. Clinics were led by consultants or ESN, and new appointments lasted 30-60 minutes.

88% of respondents recommended 5mg folic acid pre-conception and during the first trimester. However, 38% continued high-dose supplementation throughout pregnancy.

Variation was observed in antiseizure medication (ASM) monitoring and dose-adjustment practices. Although 74% measure ASM levels preconception and 88% monitor ASM levels during pregnancy, practices varied widely regarding monitoring frequency, selection of ASMs for monitoring, and dose-adjustment strategies.

Turnaround times for ASM level results ranged from a few days to 6 weeks. Postnatal ASM dose adjustments and follow-up practices also varied considerably.

SUDEP risk was assessed by 86% of respondents and discussed with patients by 80%.

Common themes identified by respondents for future guideline development included ASM monitoring and interpretation, timing of reviews, folic acid dosing, breastfeeding advice, and discussion of SUDEP risk.

Conclusions: There is currently substantial variation in how maternal epilepsy care is delivered, particularly in relation to ASM level monitoring and dose adjustments, clinic design, and postnatal care. Alongside implementation of the Epilepsy Maternal Care Bundle in England, these findings underscore the need for consensus-driven guidelines and standardised care pathways to ensure safer, more equitable care for women with epilepsy during pregnancy and the postpartum period.

11

From inequity to action: Co-producing equitable access to specialist epilepsy care for adults - findings and approach from the PROPEL project (UK)

Adam Noble

University Of Liverpool

Objective: Ensuring equitable access to specialist epilepsy care within resource-constrained health systems is a global challenge. However, how inequities arise in high-income countries — and how they might be reduced without major new resources — remains poorly understood. We examined how inequities in ongoing adult epilepsy care emerged within an exemplar English epilepsy service, patient experience impact, and co-produced feasible service improvements. Importantly, PROPEL also provides a rare and potentially transferable framework for co-producing epilepsy service redesign within existing resource constraints. 

Methods: PROPEL was an 18-month, multi-stage mixed-methods study. Six knowledge-exchange focus groups involving clinicians, administrators, people with epilepsy, and significant others first explored experiences of care and barriers to access. Findings informed iterative discussions by a 6-member multidisciplinary panel about required service revisions which were then refined through a mixed-stakeholder workshop. Data were analysed using rapid techniques.

Results: Across workshops involving 24 participants, stakeholders identified fragmented access pathways and inconsistent triage as contributors to delayed and inequitable specialist support. Access was perceived to depend partly on patients’ ability to navigate complex systems rather than need. Stakeholders also discussed increasing use of ‘Patient-Initiated Follow-Up’ (PIFU), in which patients request appointments when needed instead of offering scheduled follow-up appointments. PIFU was viewed positively for flexibility, but concerns remained regarding patients’ understanding of when and how to seek help. Following seven service-development panel meetings and a further stakeholder workshop involving 8 participants, two linked service modifications were co-produced: (1) a Single Point of Access to centralise and triage support requests; and (2) enhanced PIFU communication and safety-netting through clearer information and reminders.

Significance: Organisational complexity may itself drive inequities in epilepsy care. This co-produced redesign identified practical changes that may improve equity, responsiveness, and patient navigation without substantial workforce expansion. PROPEL offers a potentially transferable framework for strengthening specialist epilepsy services across health systems.

This work is part of a Collaborative Working project that was funded by Angelini Pharma UK-I Limited.

12

Scalable Home Video-Audio Monitoring (Nelli) in Adults With Epilepsy and Intellectual Disability

Dr Rhys Thomas, Vivienne Evans, Keith Young, Henry Bullogh

Newcastle University

Rationale: People with epilepsy, intellectual disability (ID) and autism are at high risk of seizure-related harm, and misdiagnosis, but are often poorly served by conventional diagnostic pathways. Inpatient video-EEG maybe difficult to tolerate, and carer diaries or ad hoc smartphone videos undercount events, particularly nocturnal seizures. Domiciliary monitoring offers the opportunity to capture typical events in the person’s usual environment. Nelli is a contactless, AI-informed video-audio monitoring system designed to identify and prioritise review of possible motor seizure events at home. We established this study to assessfeasibility, diagnostic yield and clinical utility in adults with epilepsy, and ID.

Methods: Patients are being recruited through our complex epilepsy service at the Royal Victoria Infirmary, Newcastle, with a target of 32 adults during 2026. Nelli operates as a device preparation, rental and installation service, with GDPR-compliant data storage. Possible seizure events are reviewed by medical personnel, with rapid reporting via a secure web platform that allows video review and, where appropriate, sharing with families. We will report demographics, seizure/event types, monitoring duration, event capture, diagnostic conclusions, safety, acceptability, report turnaround time, and management changes. The cohort is enriched by eight adults with Dravet syndrome who are also participating in the SCN1A Horizons natural history study with regular caregiver seizure diaries, and by two participants in REAL-ASE undergoing ultra long-term subcutaneous EEG, allowing exploratory comparison between routine diaries, prior home videos, video-audio event detection, and continuous EEG-derived seizure counts.

Results: At the time of abstract submission, 16/30 participants had been recruited, ahead of the expected recruitment trajectory. No adverse events, withdrawals due to tolerability, or patient/carer complaints have been reported. Reporting has been rapid, with reports returned within 10 days. Our analyses will include the complete 30-participant cohort and will summarise the proportion with clinically useful event capture, change in seizure classification or diagnostic confidence, discrepancy between carer-reported and recorded events, comparison with prior videos, and subsequent treatment or care-plan changes,including antiseizure medication adjustment, rescue medication review, nocturnal supervision planningand decisions about further EEG investigation.

Conclusions: Early experience supports the feasibility, acceptability and scalability of at-home AI-informed video-audiomonitoring for adults with epilepsy, ID and or autism in a busy tertiary NHS epilepsy service. This model of diagnostic support aligns with the NHS’ 10 Year Health Plan’s priorities of moving care closer to homeand supporting safe, clinically governed digital innovation. This approach may offer a flexible route to improving diagnostic confidence and guiding safer, treatments.

13

How Much Can We Trust Witnesses? The Accuracy of Eyewitness Recall of First Transient Loss of Consciousness Event Details at Clinically Relevant Time Intervals

Adam Noble

University of Liverpool

Background: Diagnosis after a first transient loss of consciousness (TLOC) often depends on eyewitness accounts, particularly when distinguishing epileptic seizures from functional/dissociative seizures (FDS), where clinical history is central and objective diagnostic tests may be limited. Despite their pivotal role, the accuracy of eyewitness accounts over clinically relevant delays is unknown. We therefore examined eyewitness recall of epileptic seizures and FDS immediately and after delays representative of UK clinical practice, assessed whether witness confidence predicts accuracy, and investigated whether immediate structured questioning improves subsequent recall.

Methods: Two parallel UK experimental studies recruited adults from the general population to view a standardised video of either an epileptic seizure (n=304) or an FDS (n=300). Participants were randomised to immediate free recall or immediate structured questioning before reassessment at either 2 or 7 weeks, reflecting recommended and typical UK waiting times for first seizure assessment. Recall accuracy was measured using 15 standardised semiology questions scored against consensus ratings from five consultant neurologists. We also evaluated the relationship between witness confidence and accuracy, and the effect of structured questioning on later recall.

Results: Eyewitness recall was only modest immediately after witnessing a seizure under optimal conditions (63–67% correct) and declined substantially over time. By two weeks, participants correctly recalled only 54–59% of key semiological features, with further deterioration at seven weeks. Witness confidence was consistently poorly correlated with objective accuracy. Several clinically important seizure features were especially vulnerable to forgetting. Immediate structured questioning improved later recall after epileptic seizures by 6.7% (95% CI 3.3–10.0), but conferred no meaningful benefit following FDS.

Conclusions: These studies provide the first experimental evidence quantifying the reliability of eyewitness recall across the two principal diagnostic considerations in patients presenting with undifferentiated TLOC. Eyewitness memory was inherently limited, declined over clinically relevant intervals, and was not reliably reflected by witness confidence. Although immediate structured questioning modestly improved later recall of epileptic seizures, it did not overcome these broader limitations. Clinicians should therefore interpret delayed eyewitness accounts with caution when distinguishing epileptic from functional seizures. These findings identify an important source of diagnostic uncertainty and highlight the need for new approaches to capture contemporaneous witness observations and support earlier diagnostic decision-making.

14

An audit of outpatient standards of care for patients with a diagnosis of epilepsy in a large male category B prison

Laura Sewell, Sharon Brown, Jenny Edwards, Jorden Llewellyn, Inder Sawhney, Rob Powell, Owen Pickrell

Department of Neurology, Morriston Hospital, Swansea Bay University Health Board, Heol Maes Eglwys, Swansea, SA6 6NL

Purpose: Following the death of a male prisoner due to sudden unexpected death in epilepsy (SUDEP), all prisoners in a male category B prison, with a diagnosis of epilepsy, were identified as part of a pilot on-site prison epilepsy clinic run by Swansea Bay University Health Board. We aimed to assess standards of care, in line with National Institute for Health and Care Excellence (NICE) epilepsy guidelines, to optimise outpatient management and prevent avoidable deaths. 

Methods: Thirty-nine prisoners were identified by the Prison Healthcare Team. Electronic clinical record data (clinic letters, GP referrals, discharge summaries and investigation results) from Welsh Clinical Portal were retrospectively reviewed. Twelve patients were excluded prior to analysis, due to never having been seen in a secondary care setting. One patient was excluded as an epilepsy diagnosis was refuted.

Twenty-six patients were reviewed in secondary care. Data regarding demographic information, prisoner status, epilepsy diagnosis and investigation results, risk factors for SUDEP, anti-seizure medications, comorbidities and availability of and compliance with follow up appointments were collected. Emergency Department attendances and hospital admissions due to epilepsy in a 12-month period prior to an outpatient appointment were also reviewed.

Results: Seventeen patients resided in this category B prison during data collection and analysis. Mean age was 45.6 years. Fourteen patients had generalised seizures, of which one had been seizure free for at least one year. Five had seizures from sleep. Three patients were in a cell alone. SUDEP was discussed with five patients. Three patients received sleeping advice. Eight patients were compliant with anti-seizure medications. Five patients had regular follow up arranged. Did not attend (DNA) rates for appointments were between 0 and 50 %. Twelve patients had either open access or no follow up. There were no Emergency Department attendances nor hospital admissions due to epilepsy in the preceding 12 months.

Nine patients had been released or transferred to another prison. No patient received a transfer of care letter from the Prison Medical Team. Only four patients had regular follow up arranged.  

Conclusions: Standards of care for patients with epilepsy in prison, as outlined by NICE, are not being met, based on a hospital-based outpatient clinic model.

Implementing a monthly prison-based outpatient epilepsy clinic, offering review of six patients per clinic, supported by prison healthcare staff, could allow each patient to be seen biannually and help mitigate the risk of substandard care and SUDEP in this vulnerable population.

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Clinical Nurse Specialists across Wales: A workforce report 

Malisa Pierri

Neurological Conditions Network for Wales: NHS Wales: Performance and Improvement

Introduction: National guidelines such as NICE, (National Institute for Health and Care Excellence) and SIGN (Scottish Intercollegiate Guidelines Network) recommend all patients with epilepsy have access to an Epilepsy Specialist Nurse (1,2). The CNS in epilepsy has become a front line post in epilepsy care. 94% of CNS in Epilepsy are monitoring and adjusting-seizure medications (1), Studies also suggest that a lack of effective care from an CNS result in increased risk of hospital admission, injury, sudden unexpected death in epilepsy, and a poorer quality of life (2). 

A national scoping exercise was undertaken with the aim to identify the numbers of CNS’s and the variations across Wales.

Method: With no recognised career pathway to become a CNS in Epilepsy the roles vary. This makes it very difficult to identify using employment systems such as Electronic Staff Record (ESR). Collection of data for this workforce report was undertaken using a grassroot cascade method. Stakeholders were identified by establishing through face-to-face meetings and by using the Welsh Epilepsy Nurses Group (WEN) and information about the scope cascaded out.

Results: The data was separated into geographical area, area of clinical practice (for example paediatrics or adults) and whole-time equivalents (WTE). There were two UHB’s that employed specific CNS’s to work with epilepsy in learning disability. Some nurses were employed by one UHB but some time outsourced to another and so the results were reflected according to WTE available in each UHB.

Recommendations for caseloads of CNS in Epilepsy vary, with the Royal College of Physicians and the Association of British Neurologists suggesting 9 CNS in Epilepsy per 500,000 population 54 (3). Wales has an estimated population of 3,186,600 (4) and according to the above should have 57.6 WTE. 

The data shows that the current CNS in Epilepsy workforce across paediatrics and adults is 32.3 WTE posts. An additional 25.3 additional 25.3 WTE CNS in Epilepsy are therefore required in Wales to meet recognised guidelines for care.

Conclusion: The profile of a CNS in Epilepsy has increased immensely over the last 20 years. Disappointingly, however, this exercise has outlined large discrepancies of availability of CNSs in Epilepsy across the Wales. This leaves some patients living in some areas of Wales with no access to a CNS in Epilepsy. More work is needed to highlight the essential nature of these posts in particular, areas where access to neurology services on a whole is limited.

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Incidence and excess disease burden of acquired epilepsy across 20 brain insults in 4.4 million adults

Kai Michael Schubert^1,2, Miranda Stattmann², Carolina Ferreira-Atuesta², Katharina Schuler², Philip Curman^3,4, Ralf J. Ludwig³, Anton Schmick^2,3, Matthias Koepp¹, Marian Galovic^2,3

¹University College London, ²Department of Neurology, Clinical Neuroscience Center, University Hospital and University of Zurich, ³Lübeck Institute of Experimental Dermatology, University of Lübeck, Lübeck, Germany, ⁴Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden

Background: Epilepsy is a frequent and feared consequence of brain injury, yet how often it arises after different insults, and whether the seizures themselves worsen outcomes or merely mark sicker patients, remains unclear. Burden-of-disease frameworks rarely treat acquired epilepsy as a distinct entity, obscuring the morbidity attributable to epilepsy itself. We aimed to estimate the incidence of acquired epilepsy across diverse brain insults, quantify the excess morbidity and mortality independently associated with it, and examine whether antiseizure-medication (ASM) treatment is associated with outcomes.

Methods: In a global federated network of electronic health records (TriNetX), we identified 4,435,452 adults meeting criteria for one of 20 structural, infectious, or inflammatory epileptogenic aetiologies. Ten-year cumulative incidence of acquired epilepsy was estimated using Aalen-Johansen methods with death as a competing risk. In aetiology-stratified landmark analyses, individuals who developed epilepsy were matched 1:1 by propensity score on 62 covariates to those who did not, and 1-year outcomes were pooled by inverse-variance synthesis. Prespecified negative-control outcomes and E-values assessed residual confounding.

Results: Acquired epilepsy occurred in 191,904 adults (4.3%), most often after ischaemic stroke (37.1%), traumatic brain injury (21.4%), and brain tumours (8.4%). Ten-year cumulative incidence ranged from 1.5% (95% CI 1.4 to 1.6) after multiple sclerosis to 36.9% (31.0 to 42.8) after neurocysticercosis. After matching (99.4% of standardised differences below 0.05), acquired epilepsy was independently associated with higher 1-year mortality (HR 1.20, 95% CI 1.16 to 1.24) and with excess emergency visits (HR 1.22), hospitalisations (HR 1.31), major bleeding (HR 1.38), head or facial injury (HR 1.64), pneumonia (HR 1.30), dysphagia (HR 1.37), depression (HR 1.30), and dementia (HR 1.36). Negative-control outcomes were near-null with small E-values, in contrast to high E-values for the main analyses. Among individuals with epilepsy, ASM treatment was associated with lower 1-year mortality (HR 0.70, 95% CI 0.62 to 0.78) despite more recorded seizures, consistently across the eight largest aetiologies.

Conclusion: Across 20 brain insults, acquired epilepsy is common and an independent contributor to death and disability, while antiseizure-medication treatment is associated with lower mortality. These findings support vigilant detection and timely management after brain injury.

17

Adult epilepsy care in the North East: workforce provision, clinical outcomes and economic burden compared with other English regions

Thurstan Moncrieff, Dr Rhys Thomas, Hannah Steele

Purpose: Regional inequalities in epilepsy prevalence and workforce provision are well established across England, but do not align. Following new Association of British Neurologists (ABN) workforce recommendations (1.6 consultant neurologists and 0.6 adult Epilepsy specialist nurses (ESNs) WTE per 100,000 population), we evaluated workforce provision, clinical outcomes and service costs in the North East (NE) compared with other regions.

Methods: Using the 2026 ABN epilepsy workforce report, Epilepsy Action’s 2024 report and NHS workforce statistics, we calculated consultant neurologist and adult (ESN) WTE per 100,000 population by ICB. NHS pay scales were used to estimate the cost of achieving recommended workforce provision in the NE.

Clinical outcomes, including A&E attendance, emergency admissions and years of life lost (YLL), were compared using data from the Royal College of Emergency medicines report: ‘A Dangerous Wait: Addressing the NHS Epilepsy Crisis’ Medicine and other sources. 

NHS costings were used to estimate costs of unscheduled epilepsy care and potential savings.

Results: Only 50% of English regions met the recommended consultant levels, while no region met ESN recommendations. The NE had the highest epilepsy prevalence (1.1%) but the lowest neurologist provision (1.31 WTE per 100,000 population). Although ESN provision in the NE was around the national median (0.20 WTE per 100,000), this remained only one-third of the recommended minimum (0.60). Meeting workforce recommendations in the NE would come to £2.13m additional spend annually.

The NE demonstrated consistently poor outcomes, with the highest YLL rate (3.7), second-highest standardised mortality rate (1.3) and excess bed-day rate (4.63 per 100,000 population). It also had the third-highest rates of ambulance use (200.1 per 100,000) and A&E attendance (178.3 per 100,000). The region recorded 1,611 epilepsy-related emergency admissions annually (54.6 per 1,000 people with epilepsy).

Estimated annual spending on unscheduled epilepsy care in the NE was £4.48m, with per-capita costs that were 59.1%, 15.2% and 28.5% higher than London, the East of England and the South West respectively. Excess YLL was associated with estimated annual economic losses of £1.58m compared with London, £0.85m compared with the East of England, and £1.96m compared with the South West.

Conclusion: Significant disparities exist between epilepsy workforce provision in the NE and national recommendations. The region experiences poorer outcomes and higher unscheduled care costs. Although various factors, including deprivation, contribute to regional variation, the findings suggest that investment in consultants and ESNs could improve outcomes and reduce healthcare expenditure. 

18

Implementing Emerging Epilepsy Therapies in Resource-Limited Settings: Healthcare-Worker Readiness, Awareness, and Access Barriers to Ketogenic Dietary Therapies and Pharmaceutical Cannabidiol in Kenya

Phyllis Kimani, Lucia Keter, Calvin Omolo

Neuro Reach Africa CIC

Background: The WHO Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022-2031 calls for improved access to evidence-based epilepsy care. Ketogenic dietary therapy (KDT) and pharmaceutical cannabidiol (CBD) are increasingly used for drug-resistant epilepsy, yet whether the workforce in resource-limited settings is prepared to support them is unclear. In Kenya, where epilepsy care is constrained by workforce shortages, a substantial treatment gap and limited structured KDT services, healthcare-worker readiness is central to implementation.

Methods: We report an integrated two-phase study. Phase 1, now complete, was a rapid scoping evidence review of healthcare-worker awareness of KDT and pharmaceutical CBD for epilepsy, focused on Kenya, Africa and other low- and middle-income countries. Phase 2 is a cross-sectional mixed-methods survey of 40-60 healthcare workers across pharmacist, nursing, medical-officer, clinical-officer, nutritionist and specialist cadres with direct epilepsy contact, recruited via hospital and professional-network routes in urban and peri-urban Kenya. The questionnaire, developed and translated into Kiswahili, assesses familiarity with KDT variants and pharmaceutical CBD (including distinguishing CBD from recreational cannabis), counselling confidence, perceived effectiveness and safety, and referral pathways and barriers, with key informant interviews in a purposive sub-sample. Ethical review is underway through the KEMRI Scientific and Ethics Review Unit, with data collection beginning on approval. Quantitative data will be analysed descriptively across cadres and qualitative data by thematic analysis within a healthcare-equity framework.

Results: Phase 1 established a clear evidence gap. In Kenya, KDT awareness has been measured only among dietitians, where about two-thirds reported knowledge but fewer than one in ten answered all knowledge items correctly. CBD awareness for epilepsy has been surveyed mainly in Europe, North America and the Gulf, while the African evidence identified related largely to medical cannabis/CBD broadly rather than pharmaceutical CBD for epilepsy. No study was identified assessing awareness of both therapies across the broader practising epilepsy-care workforce in Kenya, and none evaluating awareness of pharmaceutical CBD for epilepsy among practising Kenyan healthcare workers. These findings frame Phase 2.

Conclusions: This review identifies a clear Kenyan evidence gap in healthcare-worker awareness of KDT and pharmaceutical CBD for epilepsy. Phase 2 is designed to provide the first Kenya-based evidence on broader workforce readiness for these therapies across multiple epilepsy-care cadres, informing continuing medical education, referral pathways, and implementation and equity-focused policy aligned with IGAP.