SUDEP Action

Making every epilepsy death count
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A closer look at the MBRRACE Maternal Deaths Report

Women with epilepsy are dying and unaware of the risks they face according to a new report. But what steps are being taken to reduce deaths in mothers with epilepsy?
A recent enquiry into maternal deaths has shown significant failings in care for women with epilepsy during and after pregnancy; leading to many potentially avoidable deaths. The MBRRACE report (Mothers & Babies: Reducing Risk through Audits and Confidential Enquiries across the UK) focused on epilepsy as one of its main conditions.
2,500 women with epilepsy become pregnant each year, a time which has been flagged in research as being particularly risky for women with epilepsy (Nashef, 2014). This is a time which should be their happiest, yet for some, it can prove fatal. 
With over 1,200 epilepsy-related deaths each year, many of which are SUDEP (Sudden Unexpected Death in Epilepsy) - it is time to move past acknowledging this is a problem, and time for the wider health community to join us in tackling this issue, to help keep those living with epilepsy safer. 
14 women with epilepsy died during the reporting period - 9 of these deaths were reviewed in detail. 
Key facts from the report:
Bullet points
In June 2016, SUDEP Action wrote about the urgent need for action to be taken to help keep these women safer. Also, how guidelines, whilst helpful and important in supporting those (who are not epilepsy specialists (to support risk management in these women, are still a first step in reducing the number of maternal deaths. This is not new – a maternal deaths enquiry back in 2011 flagged this problem following 14 deaths; and the key findings outlined above, echo similar messages from this report 6 years previous. For many years, we have shared similar stories from our bereaved families to highlight this issue and push for lessons to be learned. 
So, what steps are being taken to reduce deaths in mothers with epilepsy? 
Don’t we owe it to these women, and all those who have died from epilepsy, to learn lessons from their death and make changes that may help save future lives? 
In light of the ongoing publicity about Sodium Valproate medication warnings, and how women are not aware of the medication’s risks, or their risks should they stop taking it; it is a really worrying time, as noted by experts in the field. One thing which must be considered is - what the impact is on women with epilepsy facing medication scares when little is being done to ensure they get balanced conversations about risks? How can they make informed choices about their and their baby’s care?
As a charity funded almost entirely by families who have lost a loved one to epilepsy, we know that there is no time to waste in educating the epilepsy community about risks, in the hope of stopping epilepsy deaths; and have been tackling this issue head-on for over 21 years. It is also why we have pump-primed research into epilepsy deaths, which has not only lead to increased understanding among researchers and clinicians about this topic but has led to the creation of tools and resources for clinicians and people with epilepsy, which actually help keep people with epilepsy to stay safer right now, including those who are pregnant. Educating, empowering and enabling them to reduce their risks
Our EpSMon app for people with epilepsy and our SUDEP and Seizure Safety Checklist for clinicians, as well as resources such as the Pregnancy Toolkit created by Kim Morley (Epilepsy Specialist Midwife) are examples of how solutions to these problems can be made freely available and accessible now to those who need them. 
We also run the Epilepsy Deaths Register for bereaved families to share information which helps researchers learn lessons from epilepsy deaths. With over 700 registrations, the stories of those who have died play an important part in our work – and sharing the experiences of our bereaved families is part of everything we do, in the hope that changes can be made and future lives saved. 
These tools are supported by our bereaved families, supportive clinicians and even a section of NHS England – yet there are gaps in the country where they are not being used, and some people do not know SUDEP Action exists, or about the free services we offer to help. 
We offer our services free to those who need it, in memory of those who have died; but we can’t do this alone. There are many people involved in the care of people with epilepsy, both across the health sector and across families who can help. It is time for us to join forces in tackling these epilepsy deaths by being open and honest about risks, so informed choices can be made about care, risks can be reduced, and steps were taken. The majority of deaths highlighted in this report were potentially avoidable – so let’s stop these same patterns repeating and help us to make sure their deaths count.  

People with epilepsy:
  • For more information on how to reduce risk see our information pages
  • To download our free, award-winning app which helps you manage your epilepsy visit 
Bereaved families:
  • Help future research into epilepsy deaths by providing information to our Epilepsy Deaths Register 
  • Could you share your and your loved ones’ story with us to help us make change happen quicker? Your experiences are vital to our work. Contact [email protected] for more information 
  • Don’t forget our support team are here for anything you may need: 01235 772852 or [email protected]