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New enquiry report highlights increasing maternal epilepsy-related deaths

Pregnancy

 

The MBRRACE report (Mothers & Babies: Reducing Risk through Audits and Confidential Enquiries across the UK) has released their latest findings on maternal deaths in the UK between 2015-2017.

This latest 2019 report highlights that there has been no significant decrease in the number of women dying during or shortly after pregnancy between 2013-2015 & 2015-2017. However, the number of epilepsy related deaths has risen.  

This alarming rise adds to our concerns shared when MBBRACE released their earlier 2017 report, which focused specifically on epilepsy maternal deaths. You can read our article about our concerns here.

 

Key findings from the latest report

  • No decrease in overall maternal deaths in the UK
  • Neurological conditions are the 3rd highest cause of maternal death
  • Epilepsy-related deaths have increased (9 deaths during 2013-2015 up to 14 during 2015-2017)
  • Those facing inequality and disadvantage seem at increased risk
  • Maternal epilepsy deaths and those due to suicide are continued areas of focus
  • Most women are young and previous fit

 

Judy Shakespeare, a retired GP who is an editor of the MBRRACE report, and is also one of SUDEP Action’s Trustees, commented, “It is disappointing to see that deaths from epilepsy are not reducing. The numbers are small, but this is a tragedy for every woman and family affected. The deaths will be examined in detail next year and reported at this time next year for 2017-2019.

While the report provides limited detail on what lessons can be learnt from these tragic epilepsy maternal deaths, at SUDEP Action, we know that there is likely to have been actions which could have been taken which may have saved the lives of some of these women and their babies.

With over 21 epilepsy-related deaths happening weekly across the UK and nearly 50% of these deaths thought to be preventable, steps must be taken to better protect these women and their babies who will be among this unacceptable statistic.

SUDEP Action has repeatedly spoken about the urgent need for action to be taken to help keep women with epilepsy safer, particularly during and after pregnancy. This is not new – a maternal deaths enquiry in 2011 flagged this problem following 14 deaths; and the key findings outlined above in both the 2019 and 2017 MBRACCE reports, echo similar messages from this report eight years ago.

For many years, we have shared similar stories from those bereaved by epilepsy to highlight this issue and push for lessons to be learned. 

Much can be done to improve the safety of women with epilepsy during and after pregnancy – most importantly it is vital they are told of epilepsy risks, including risks linked to Sudden Unexpected Death in Epilepsy (SUDEP), in order to make informed choices about their, and their babies’ care.

This vital knowledge is why SUDEP Action and leading experts created the SUDEP and Seizure Safety Checklist (for clinicians) and EpSMon app (for people with epilepsy) – to support these important conversations and promoting positive epilepsy risk management.

 

For further information on epilepsy risks and their management: https://sudep.org/epilepsy-and-risk

If you are living with epilepsy and are pregnant access free resources to support you: https://www.womenwithepilepsy.co.uk/ and http://www.epilepsyandpregnancy.co.uk/

If you have been bereaved by epilepsy and would like to know more about our free specialist support or to get involved: https://sudep.org/someone-has-died

To share information about an epilepsy-related death with researchers: www.epilepsydeathsregister.org