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New study “a wake up call” to the challenges facing women with epilepsy

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Nathan Draper

“Alarming” new study raises SUDEP concerns

The Epilepsy Society has expressed alarm about the doubling of Sudden Unexpected Death in Epilepsy (SUDEP) in pregnant and postnatal women.

Data released as part of an MBBRACE-UK report into mother and infant mortality shows that maternal deaths due to SUDEP have increased by 125 per cent compared to previous figures.

Commenting on these concerning findings, Professor Ley Sander, Medical Director of the Epilepsy Society, described the doubling of SUDEP as “alarming” and a “wake up call to the challenges faced by women with epilepsy.”

Between 2016 and 2018, 18 women in the UK and Ireland died of SUDEP either while pregnant or within a year of giving birth, compared to eight women for the period 2013 to 2015. This represents an increase in mortality from 0.32 to 0.74 deaths per 100,000 maternities.

The report, titled Saving Lives, Improving Mother's Care 2020, notes that a further four women died due to unspecified "causes relating to epilepsy."

Speaking after the report’s publication, Professor Sander said:

“These figures are alarming, particularly when you see that many of these women do not appear to have received the support from the healthcare system that could have helped to save their lives. Every woman who is planning a pregnancy should be referred to her neurologist for specialist review and to optimise her treatment options.

“Seizure control may not always be possible but it is imperative that there is a full discussion between the woman and her specialist, in order to ensure the best possible outcomes. It is significant that many of the women were taking lamotrigine. During pregnancy, the levels of this medication need to be carefully monitored through blood tests as a normal dose may not be adequate to control seizures. Similarly, the drug levels need to be monitored after birth to reduce the medication to an optimum level.

“This report follows on very closely from the MHRA’s report into the risks associated with some of the commonly prescribed epilepsy drugs during pregnancy. Both reports are a wake-up call to the challenges faced by women with epilepsy and the very real need for the healthcare system to up its game in supporting and protecting them.”

In their report, MBRRACE-UK identify a number of failings in care provision. Of the 22 women who died due to "causes related to epilepsy" – 18 of which were due to SUDEP - a majority had not received a specialist review during pregnancy. This is despite 16 of the women having "uncontrolled" epilepsy prior to pregnancy.

In 13 of the cases, improvements in care were identified which could have "changed the outcome."

And the report suggests that there may be further challenges ahead. Although there is no confirmed data yet, early indications are that issues “highlighted in the report are likely to have amplified in 2020” during the Covid-19 pandemic.

The report goes on to make a series of recommendations for health professionals on how to tackle the troubling increase in SUDEP.

Professional bodies such as the Royal College of Obstetricians and Gynaecologists are encouraged to develop guidance for their members to ensure SUDEP awareness, risk assessment and minimisation are part of the standard care for women with epilepsy before, during and after pregnancy.

The report urges Health Trusts and Boards to ensure all maternity units have access to an epilepsy team. Pregnant women with worsening epilepsy symptoms should also have "rapid referrals" for neurology review, the report says.

MBBRACE-UK is a collaboration between the Nuffield Department of Population Health and the University of Oxford which investigates maternal and infant deaths, their causes and ways to limit mortality.

For more information, please view the Epilepsy Society’s dedicated SUDEP resource. Saving Lives, Improving Mother's Care 2020 can be viewed in full here.