A national study has uncovered that SUDEP (Sudden Unexpected Death in Epilepsy) occurred almost twice as often among women who were pregnant between 2016 and 2018. 

Epilepsy is a key focus of the MBRRACE (Mother and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK) enquiry; ‘Saving Lives, Improving Mother’s Care’. The report includes data of 547 women who died during or up to one year after pregnancy between 2016 and 2018 in the UK. MBRRACE UK hopes the report will help to inform maternity care, to improve the safety of pregnant women. 

What does the report show?  

The key findings of the report relating to epilepsy were: 

  • There has been a significant increase in maternal deaths due to SUDEP, which was the main cause of epilepsy-related deaths. 
  • 22 women died in the year after pregnancy in 2016-2018 from causes related to epilepsy compared to the previous 13 women in 2013-2015. 
  • 4 women were not taking epilepsy medications and very few women had documented pre-pregnancy counselling. 
  • Neurological causes (such as epilepsy or stroke) are the second most common indirect cause of maternal death, and the third commonest cause of death overall.  

You can view a lay summary of the report here. 

Epilepsy Research UK welcomes the publication of this important study. Epilepsy Research UK Trustee, Consultant Neurologist and Epilepsy Neuroscientist Dr Rhys Thomas said:

“This year’s report makes for agonisingly painful reading. Epilepsy has now overtaken high blood pressure as a cause of maternal death, with almost a doubling of cases since the last report. Importantly we know that some anti-seizure medicines are less safe for children exposed to them in the womb, but we must not lose sight that treatments must also be safe for women before and after pregnancy to reduce the risks of seizures and sudden death. There is a continued and urgent public health need for research in to medicine safety and the direct and indirect reasons as to why we are losing mothers, in increasing numbers. The MBRRACE report reaffirms that we must be investing in vital epilepsy research to save lives and improve the quality of life for people with epilepsy.”

If you have concerns about epilepsy and pregnancy you should always speak directly to your neurologist or epilepsy nurse. Our partner charities such as SUDEP Action and Epilepsy Action also provide excellent information and advice about assessing risk.   

To drive more investment in this vital area of research, we need people with epilepsy who have been pregnant or are considering pregnancy, to share your views on this as a research priority.  You can do this by answering our Shape Network questions here: https://epilepsyresearch.org.uk/ShapeNetwork.
By becoming part of the network you will also have the opportunity to participate in research, play a role in study design, and help Epilepsy Research UK choose which research receives funding through our annual grant round. 

The report follows this week’s government response to the Independent Medicines and Medical Devices Review, or ‘Cumberlege Review’which investigated the effects of antiepileptic drug sodium valproate. The report highlighted failures in our present system of care for people with epilepsy and insisted that patients must be central to research and treatment decisions. 

Responding to the Cumberlege Review on behalf of the government, Minister for Patient Safety Nadine Dorries MP, presented a focus on ensuring the voice of patients was listened to in establishing safety mechanisms and supported the establishment of a data collection system. 

Read more about the release of the ‘Cumberlege Review’ here.