SUDEP Action

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Latest maternal data shows doubling of deaths of women with epilepsy

Pregnancy

 

A national enquiry has today revealed the shocking finding that the number of maternal deaths of women with epilepsy has doubled in three years, during 2016 to 2018.

A key focus for this report is epilepsy and Sudden Unexpected Death in EPilepsy (SUDEP) which ‘occurred almost twice as often among women who were pregnant, or in the year after
pregnancy’. It also discovered that “most women who died had clear risk factors for SUDEP but had not had risk or prevention measures discussed with them.” 

MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) investigated the maternal deaths of 547 women, who died up to one year after pregnancy, in a bid to improve the safety and care of pregnant women.

Key report findings:MBBRACE logo

  • Twice as many women with epilepsy (twenty-two) died during or up to a year after the end of pregnancy in the UK and Ireland in 2016-18 from causes related to epilepsy, compared to 13 women in 2013-15
  • SUDEP was the main cause of death for these women (15), though 2 drowned and 2 died due to status epilepticus (prolonged seizures). Exact cause of death was not available for 3 women though they were known to have epilepsy
  • 4 women were not taking epilepsy medications and very few women had documented pre-pregnancy counselling

The majority had uncontrolled epilepsy pre-pregnancy, less than half had specialist review during pregnancy


Recommendations from the clinical (NICE) guidelines from 2004, state that it is imperative to discuss and educate the patient of the risk factors, particularly surrounding death, relating to their epilepsy. However, communicating serious information like this, is not easy, if it happens at all.

In the same year, Christine Carter, lost her 25yr old daughter, Samantha, who was 7months pregnant with her son, Christine’s first grandchild. The first time they heard about SUDEP, was when the coroner gave it as the cause of Samantha’s death.

Its evident that the vital conversation about person centred risk is crucial for those with epilepsy, and women need to have positive conversations about their choices if, and when, they become pregnant.

Advanced Clinical Practitioner, Kim Morley expressed ‘extreme concern’ about the pressure of the current COVID-19 pandemic on the NHS, which has already impacted existing neurology and maternity care provision. The epilepsy specialist midwife commented, “Out of all the deaths reviewed in the report, improvements in care may have changed the outcome in approximately two thirds of the cases.

The COVID pandemic has impacted service provisions for those with epilepsy, (‘1 in 5 experiencing problems accessing support’, according to the Lives Cut Short Report, Nov 2020) but it is imperative that women have access to services and signposted to safety resources to allow them to make choices. This is vital given the introduction of the Prevent’ programme by MHRA, and their recent epilepsy medications review which could cause worry among women with epilepsy, or uniformed decision making if they (& their clinicians) are not aware of epilepsy risks and SUDEP.


Report recommendations:

Women with epilepsy should:

  • have a pre-pregnancy discussion with their epilepsy team and agree a plan if thinking about pregnancy
  • not stop taking their epilepsy medications but discuss them with their epilepsy teams (and maternity team if pregnant)
  • Be aware of epilepsy and SUDEP risks and how you can reduce them – the free EpSMon app can help you with this (www.sudep.org/epsmon)

 

Clinicians should:

  • Check that there has been a positive conversation about minimising epilepsy risks and SUDEP (alongside the Pregnancy Prevention Programme)
  • Use standardised safety tools to check discussion of medication changes are informed and balanced; the SUDEP and Seizure Safety Checklist can support this (https://sudep.org/checklist)
  • Work across maternity and epilepsy services to make sure women are well supported during and after pregnancy


Both the MBRRACE report, the recent Learning Disabilities Mortality Review (LeDeR), and the NHS RightCare Epilepsy Toolkit, advocate taking a risk management approach in epilepsy appointments, which can be facilitated by free resources such as the SUDEP & Seizure safety Checklist (clinician), and the patient epilepsy safety app EpSMon to help with monitoring risks and general wellbeing in between appointments.

Read the lay summary of the MBRRACE report here

 

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