Nearly four in five deaths in women with epilepsy during pregnancy could be avoided, according to a new report looking at risks to mothers and babies, published yesterday.
The latest Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE-UK) report showed an increased rate of maternal deaths during pregnancy or in the six weeks following birth in the UK in 2022-2024 compared to 2019-2021.
The report highlighted that the rate of maternal deaths in this time period is 20% higher than that in 2009-11, when the government set an ambition to cut the number of maternal deaths by half.
It also reconfirmed that certain groups are at a higher risk, including black women at nearly three times the risk of white women, and those from poorer areas, who were at twice the risk of those from wealthier areas.
‘Epilepsy and stroke’ was the fourth leading cause of maternal deaths in the time period, behind blood clots, heart disease and mental health conditions.
Epilepsy Action said the MBRRACE report findings are “heartbreaking”.
Epilepsy Action health improvement and innovation lead Jen Cannon, who was at the MBRRACE report launch, said: “It was difficult and shocking to hear that avoidable maternal death continues to increase, despite recommendations being in place for many years.
“The data we see year on year is the same – people with epilepsy are not cared for as effectively as they should be if they have epilepsy and are pregnant. There is still a distinct lack of understanding and joined up care for a pregnant person with epilepsy.
“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 heartbreaking thing is that most of the deaths attributed to epilepsy could have been avoided if they had received the care they should have. This simply cannot continue to happen.
“That is why we have been working with NHS maternity providers in England asking them to use our self-assessment tool to benchmark their service against the national guidance on care for pregnant people with epilepsy. This means that we can help the NHS identify areas of gaps in care and help them build systems that provide good, safe and effective care for pregnant people with epilepsy.”
MBRRACE report: epilepsy deaths
The MBRRACE report research showed that 15 women died from epilepsy-related causes from 2022-24. In 13 of those cases, this was due to sudden unexpected death in epilepsy (SUDEP). Two other deaths were suspected as SUDEP, but the women did not have an epilepsy diagnosis at the time of their death.
Among all 19 women who died from epilepsy or who had functional (dissociative) seizures, “assessors felt that improvements in care would have made a difference” in 15 of the cases (79%).
One young woman who had had epilepsy for 10 years died in her third trimester. She had seizures during sleep, which worsened from 20 weeks of pregnancy. She was treated by maternity services for her pregnancy and by neurology services for her epilepsy, but lack of communication between the teams meant that the increased risk to the woman from her worsened sleep seizures was missed.
The MBRRACE report says ensuring there is joined-up care between neurology and maternity is an important lesson from this case.
The report also stressed the importance of specialist care in complex epilepsies, highlighted by the case of a woman who died in the third trimester after having several seizures over several weeks. She had met with a senior obstetric registrar and epilepsy specialist nurse, but she didn’t see an epilepsy in pregnancy specialist and was reviewed later than NHS England guidance advises.
Another point the report stresses that clinicians must “remember the mother”, after a young woman was taken off sodium valproate for the duration of her pregnancy, during which time she experienced recurrent tonic-clonic seizures. She was not prescribed sodium valproate again after the birth of her baby and died seven months later.
The MBRRACE report said counselling after pregnancy should consider the mother’s situation and whether “it may be appropriate to reassess ongoing seizure frequency and re-start ASMs that were previously effective but which should be avoided in pregnancy”.
Epilepsy Action resources
In light of the stark findings from this and previous MBRRACE reports, Epilepsy Action has worked on clinical guidance and a service specification with the maternity and midwifery team covering the North West of England to help support better care for people with epilepsy before, during and after pregnancy. There is more information on the Epilepsy Action website.
The organisation has also worked with nearly 60% of maternity providers in England on benchmarking their epilepsy and maternity care, and is expecting to have 90% of providers complete this by the end of the year.
Epilepsy Action is also on the government’s Expert Reference Group feeding into the Maternity Neonatal Taskforce.
The charity also has information for people with epilepsy around pregnancy and epilepsy and epilepsy medicines and pregnancy, as well as an epilepsy and pregnancy virtual group.
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