In connection with the recent national enquiry by MBBRACE, revealing the shocking finding that the number of maternal deaths of women with epilepsy has DOUBLED in three years, Kim Morley, Advanced Clinical Specialist, Midwife and Nurse (pictured right), blogs about her recommendations...
MBRRACE review findings
Pregnancy for most women with epilepsy in the UK is safe and majority of women will have a good outcome and deliver a healthy baby. However, epilepsy is a serious disease and in maternities, there is a significant increased risk of maternal mortality and morbidity. Of extreme concern is the MBRRACE review findings identifying that the mortality rate in women with epilepsy due to Sudden Unexpected Death in EPilepsy (SUDEP) has more than doubled since the 2013-15 MBRRACE review. Between 2016-18, 18 women died from SUDEP (0.74 per 100, 000 maternities) and four women died from other causes.
Women at increased risk
Women at particular increased risk of SUDEP, were those who had uncontrolled seizures. This risk is increased if epilepsy medicines are not taken or if the medicine or dosage is ineffective in controlling seizures. Tonic clonic seizures arising from sleep are a major risk factor for SUDEP. This risk may be increased further for women living in difficult social situations and facing inequalities.
Care provision concerns
It is imperative to standardise person centred care in the UK for all women with epilepsy. Out of all the deaths reviewed, improvements in care may have changed the outcome in approximately two thirds of the cases. Of extreme concern, is that the NHS is under unprecedented pressure due to the COVID-19 pandemic and this has impacted on existing neurology and maternity care provision.
Risks associated with epilepsy medicines
The MBRRACE review has coincided with the recent release of the MHRA publication on epilepsy medications and pregnancy. Without epilepsy specialist support and counselling, this has the potential to cause further fear about taking epilepsy medicines which could lead to a woman stopping her medicine or taking a medicine or dosage that does not provide seizure control. This has already been apparent due to the restrictions on valproate medicines being prescribed to women of child bearing potential. For some women, particularly those with generalised epilepsy, this has meant their seizure control is suboptimal on an alternative epilepsy medicine and this factor may be contributing to the tragedy of the MBRRACE review findings.
How can we turn this around?
Women themselves are faced with multiple dilemmas from all angles therefore it is more vital than ever to utilise the resources that are already available and equip women and their families with these tools. It is also imperative that healthcare professionals work together to provide consistent, proactive, flexible support that meets the needs of the individual woman and not the service. This must also be achieved for women living with additional vulnerabilities who have problems accessing care by outreaching to these women through seamless working between maternity and social services.
The pregnancy journey
Pregnancy can be an unpredictable time for seizures even for women who have been seizure free for many years. Therefore, it is vital that women and their families are aware of how to reduce the risk of SUDEP and other adverse outcomes and consequences associated with uncontrolled seizures.
Reducing your individual risks:
- Ensure you are fully risk aware before pregnancy. Download the Epilepsy self monitor (EpSMon) app on your phone or tablet. These tools will enable you to do an individual risk assessment and identify how you can reduce your risks of SUDEP. Your risks can change over time, so checking them regularly can help you know when action should be taken to reduce your risks.
- Attend for pre-pregnancy counselling for reassessment of your diagnosis and ensuring your seizures are controlled on a medicine and dosage that provides you with minimal risk of seizure occurrence and least likely to cause you adverse effects or cause harm to your developing baby.
Download: Epilepsy medicines in pregnancy.
- Ensure where possible, pregnancy is planned by using a contraception that does not interact with your epilepsy medicine.
- As soon as you have a positive pregnancy test, contact your GP to action an urgent referral to an epilepsy specialist nurse or midwife, a consultant obstetrician or obstetric physician and neurologist in addition to your community midwife. This team should provide prompt support to guide your epilepsy medicines management and screening tests and ensure you have a shared care plan in place.
- Download and print the maternity epilepsy toolkit to guide you safely through your pregnancy journey into motherhood and help with information sharing about your epilepsy and treatment.
How can health professionals screen for risk?
- Sign up for the SUDEP & Seizure Safety Checklist and use this tool to assess individual risk before, during and following pregnancy
- Encourage women to download Epilepsy self monitor (EpSMon) app on their phone or tablet
- Download and print the maternity epilepsy toolkit to guide you with providing information about safety, risk and details of the woman’s epilepsy and treatment. Place this in her hand-held notes and use it as a navigation aid from the booking appointment to discharge, postnatally.
- Provide an urgent assessment and on-going support following notification of pregnancy. If this pregnancy was unplanned, or the women has not received specialist pre-pregnancy epilepsy care and support, urgently refer the woman to an epilepsy specialist and follow this up if you have not heard back within two days.
- Provide women with accurate information about Epilepsy medicines in pregnancy
- Ensure a person centred approach is provided and the woman is central to decision making
- Make ongoing sensitive enquiries about epilepsy medicines adherence and feel able to challenge non- adherence.
- If you are unable to provide medicines management advice, identify the member of team who is available to do this, urgently. Obstetricians and epilepsy specialist nurses and midwife prescribers are ideally placed to provide this specialist support.
- If the woman has a history of prolonged or recurrent seizures, provide an emergency medicines management plan for the administration of buccal midazolam.
- Ensure the partner and family network are aware of first aid management of a seizure and what to do if a seizure occurs.
- Use the opportunity of caring for a woman with epilepsy to learn about her epilepsy and the impact of that journey on her life.
- Women with epilepsy have increased risk of mental health co-morbidities, screening for this should be made at each healthcare contact.
- Provide evidence based care RCOG, epilepsy in pregnancy guidelines
In conclusion, the finding from the latest MBRRACE report of a dramatic increase in maternal death associated with SUDEP was devastating. We owe it to the bereaved families to work together across all professional, healthcare and social barriers to reverse this risk factor in order no epilepsy maternity outcome reviewed in the future reveals any shortcomings in care.