Story Highlight
- Nearly four in five epilepsy-related maternal deaths in pregnancy are avoidable.
- Maternal death rates increased 20% from 2019 to 2021.
- Black women are nearly three times more likely to die.
- Epilepsy and stroke are the fourth leading cause of maternal deaths.
- Improved communication and care are essential for pregnant women with epilepsy.
Full Story
Nearly 80% of deaths in women with epilepsy during pregnancy are potentially preventable, according to a report published recently. The Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE-UK) report indicated an increase in maternal deaths during pregnancy or in the six weeks following childbirth in the UK for the period 2022-2024 compared to 2019-2021. The rate of maternal deaths is now 20% higher than it was in 2009-2011, when the government aimed to halve these figures.
The report highlights certain demographic groups, notably black women, who face nearly three times the risk of maternal death compared to white women. Women from poorer regions also exhibited double the risk of their wealthier counterparts. Among the various causes of maternal death, “epilepsy and stroke” ranked fourth, behind blood clots, heart disease, and mental health issues.
Jen Cannon, health improvement and innovation lead at Epilepsy Action, described the findings of the MBRRACE report as “heartbreaking.” At the report’s launch, she stated, “It was difficult and shocking to hear that avoidable maternal death continues to increase, despite recommendations being in place for many years.” She noted that people with epilepsy do not receive adequate care during pregnancy, leading to a higher risk for mothers. Cannon added, “While ensuring the baby’s safety is highly important, there can be less focus on ensuring the mother’s seizures are as well controlled as possible, putting her safety and wellbeing at significant risk.”
The MBRRACE report revealed that between 2022 and 2024, 15 women died from epilepsy-related causes, with 13 cases attributed to sudden unexpected death in epilepsy (SUDEP). Assessors were of the opinion that improvements in care could have prevented 79% of the deaths among the 19 women who died from epilepsy or experienced functional (dissociative) seizures.
A specific case cited involved a young woman who had experienced epilepsy for 10 years and died during her third trimester. She had seizures during sleep which intensified from 20 weeks into her pregnancy, but a lack of communication between maternity and neurology services resulted in the increased risk being overlooked. The report emphasised the significance of coordinated care between neurology and maternity providers.
Another highlighted case concerns a woman who died in her third trimester after experiencing multiple seizures over weeks. She had seen a senior obstetric registrar and an epilepsy specialist nurse but did not meet an epilepsy in pregnancy specialist in a timely manner as per NHS England recommendations. The report also mentioned that clinicians must “remember the mother,” referencing a case where a young woman, taken off sodium valproate during pregnancy, experienced recurrent tonic-clonic seizures and died seven months post-delivery.
In response to these worrying findings, Epilepsy Action has developed clinical guidelines and a service specification in collaboration with the maternity and midwifery teams in North West England. The charity has engaged with nearly 60% of maternity providers in England to improve benchmarking of epilepsy care, with plans to reach 90% by year-end. They are also part of the government’s Expert Reference Group for the Maternity Neonatal Taskforce and provide resources for individuals with epilepsy regarding pregnancy and medications.
Source: read the original report.
What this means for your site
This report indicates a significant gap in the care of pregnant women with epilepsy, leading to preventable deaths. Improvements in communication and collaboration between maternity and neurology services are crucial to mitigate these risks. Healthcare providers should implement more rigorous protocols to ensure that healthcare teams share vital information regarding the patient’s condition and treatment adjustments, particularly during pregnancy.
The relevant UK health and safety legislation includes the Health and Safety at Work etc. Act 1974, which mandates the provision of safe systems of work and proper communication for the health and safety of employees and service users. Furthermore, the Management of Health and Safety at Work Regulations 1999 apply, requiring risk assessments that should consider the health conditions of pregnant women. The local NHS maternity services should conduct frequent audits and training sessions focusing on the management of complex care needs associated with epilepsy.
To improve the safety of pregnant women with epilepsy, sites could establish multidisciplinary teams that regularly review cases and develop integrated care pathways. Additionally, training sessions on the importance of documentation and communication would enhance awareness and adherence to best practices among healthcare professionals.
