APPG meeting raises issues around epilepsy maternal deaths and effects of epilepsy medicine in pregnancy with MPs

9 Apr 2021

Read about the latest APPG meeting hosted by Epilepsy Action.

Maternal deaths in epilepsy and the effects of epilepsy medicines when taken during pregnancy were the focus points of the latest All-Party Parliamentary Group (APPG) hosted by Epilepsy Action.

The Zoom meeting, held on Monday 22 March, was chaired by Valerie Vaz MP and Yasmin Qureshi MP.

APPGs are informal cross-party groups representing specific interests in Parliament. They can be an impactful way of raising awareness of important issues among parliamentarians. Together with SUDEP Action, Epilepsy Action is co-secretariat of the APPG on Epilepsy.

Professor Marian Knight presented the findings of the MBRRACE report into maternal deaths in epilepsy. MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in UK) published the report ‘Saving Lives, Improving Mothers’ Care 2020’ in January this year.

The report examines the care received by women who died during or up to a year after pregnancy. The current report covers all pregnancy-associated deaths involving UK women between 2016 and 2018.

The national inquiry investigated 547 maternal deaths, occurring during or up to one year after pregnancy. It found that 22 women with epilepsy died during pregnancy, or up to a year after pregnancy, during 2016-18, compared with 13 women with epilepsy in 2013-15.

Sudden unexpected death in epilepsy (SUDEP) was the main cause of death in 15 of the 22 women, and four of the women were not taking epilepsy medicines. Very few of the women had documented pre-pregnancy counselling. Epilepsy Action has called for all women with epilepsy to receive pre-conception counselling and family planning advice so that they can make an informed decision about their medicine, and we will continue to do so.

Professor Knight’s presentation was followed by Jane Hanna, CEO at SUDEP Action. Jane Hanna also discussed the MBRRACE report, and concerns that the risk of SUDEP are not properly communicated to women with epilepsy.

Sarah Mee, the senior medical assessor at the Medicines and Healthcare Products Regulatory Agency (MHRA), also delivered a presentation. She shared the work the MHRA is doing to communicate the risks of taking certain epilepsy medicines in pregnancy. This included communicating the findings of the recent CHM review on epilepsy medicines, and work to establish the valproate registry.

Following these two presentations, the APPG heard from a number of leading clinicians about what next steps need to happen to ensure that the issues raised are addressed. This included further research into epilepsy medicines, more epilepsy nurses and more funding for epilepsy services.

There was also a powerful and important story from Joanne Doody about her son Peter who died due to SUDEP at the age of 21.

Epilepsy Action will be writing to the Department of Health to outline the key points raised during the meeting, on the advice of APPG chair Valerie Vaz. The organisation will be asking Health Secretary Matt Hancock to attend a future APPG meeting to address these points.

The event was attended by almost 50 representatives, including patient groups, clinicians, researchers, MPs and Peers.

There is more information on the APPG on Epilepsy on the Epilepsy Action website.

Comments: read the 1 comments or add yours


Could there be some kind of register, say for women with learning disabilities, and for whom discussions about pregnancy are at best irrelevant and at worse painful? Regularly, we when see the GP or consultant, they bring up that she is on sodium valproate and then time is wasted on yet another futile best interests meeting, in which its concluded that sodium valproate is by far the most effective anti-epileptic drug (think 6 - 10 seizures a day, instead of 50); but she doesn't have capacity for informed consent for sex, never mind pregnancy and labour, and would be totally unable to care for a baby, because she needs 1:1 care herself.

Submitted by Susan Lyons
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