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'Mothers in mind': information for health care professionals

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September 2008

As part of Epilepsy Action’s 'Mothers in mind' campaign launched September 2008, we are delighted to make available three publications.  One for health professionals working in an obstetrics setting, one for health visitors and community practioners and one for patients.
These have been specifically designed as a practical tool which we hope will help you support your female patients with epilepsy. Epilepsy is the most common serious neurological disorder.
Mothers in Mind bookletWhile one pregnancy in every 7,700 women without epilepsy results in death, the incidence shoots up to one in every 1,150 for women with the condition. This equates to four women a year and it is vital to work towards closing the gap.

Saving Mothers' Lives, the latest Confidential Enquiry into Maternal and Child Health (CEMACH) report , made a number of recommendations for maternal healthcare provided to women. These included greater provision of pre-conception advice for women with epilepsy.

The CEMACH figures are just a part of the picture. The UK Epilepsy and Pregnancy Register  has provided evidence that there is a higher risk of malformations linked with maternal epilepsy. These risks can be minimised by paying close attention to the type, combination and dosage of anti-epileptic drugs (AEDs) in consultation with a health professional.

Dr Jim Morrow, consultant neurologist at Royal Victoria Hospital in Belfast, said: "The majority of women with epilepsy have uncomplicated pregnancies and 96 per cent give birth to healthy babies . However, the fact that women with epilepsy have a higher risk of maternal death surely demonstrates a need for these deaths to be addressed. Many women are never made aware of the risks associated with epilepsy and being pregnant. Some women therefore abandon their medication during pregnancy for fear of the effects it may have on their unborn child. They can be unaware that uncontrolled seizures during pregnancy can also damage the unborn child. In some rare cases, this can result in sudden unexpected death in epilepsy (SUDEP) in women."

Further evidence was uncovered in Epilepsy Action's own surveys , showing how women with epilepsy are still largely not receiving specialist advice before, and adequate healthcare during, pregnancy. This is despite national guidelines set down by the National Institute for Health and Clinical Excellence (NICE) on the management of epilepsy.
Epilepsy Action is now urging health professionals responsible for the care of women with epilepsy - namely obstetricians, midwives, health visitors, general and community practitioners - to take these issues on board. There is a real need for health professionals to increase their knowledge of how to best manage the condition in women before, during and after pregnancy.

Epilepsy Action recognises that epilepsy is a complex condition to treat, and it can sometimes be difficult for health professionals not specialising in epilepsy to access accurate information on the condition. The charity is therefore working to support health professionals in their delivery of well-informed and accurate care and advice to women. The experience of neurologists, epilepsy specialist nurses (ESNs) and epilepsy specialist midwives is now available in new information packs. These have been developed by a working party of experts in the field of epilepsy, and are designed to promote a better understanding on epilepsy and its management.

Dr Jim Morrow welcomes Epilepsy Action's release of the new information packs: "It is important for health professionals working in antenatal settings to have access to information about epilepsy, due to the increased risk of complications. For example, there is a growing awareness that serum levels of specific anti-epileptic drugs change during pregnancy. These changes leave some women prone to seizure breakthrough, leading to significant clinical and occupational consequences."
To help ensure that women are receiving the most appropriate information about health issues in relation to epilepsy and pregnancy, the Epilepsy Action 'Mothers in mind' campaign is being launched this month.


Epilepsy Action has launched a campaign calling for improved care for women with epilepsy, to address the seven times higher risk of maternal death they face.

While one pregnancy in every 7,700 women without epilepsy results in death, the incidence shoots up to one in every 1,150 for women with the condition. This equates to four women a year and the charity says it is vital to work towards closing the gap.

Saving Mothers' Lives, the latest Confidential Enquiry into Maternal and Child Health (CEMACH) report , made a number of recommendations for maternal healthcare provided to women. These included greater provision of pre-conception advice for women with epilepsy.

The CEMACH figures are just a part of the picture. The UK Epilepsy and Pregnancy Register  has provided evidence that there is a higher risk of malformations linked with maternal epilepsy. These risks can be minimised by paying close attention to the type, combination and dosage of anti-epileptic drugs (AEDs) in consultation with a health professional.

Dr Jim Morrow, consultant neurologist at Royal Victoria Hospital in Belfast, said: "The majority of women with epilepsy have uncomplicated pregnancies and 96 per cent give birth to healthy babies . However, the fact that women with epilepsy have a higher risk of maternal death surely demonstrates a need for these deaths to be addressed. Many women are never made aware of the risks associated with epilepsy and being pregnant. Some women therefore abandon their medication during pregnancy for fear of the effects it may have on their unborn child. They can be unaware that uncontrolled seizures during pregnancy can also damage the unborn child. In some rare cases, this can result in sudden unexpected death in epilepsy (SUDEP) in women."

Further evidence was uncovered in Epilepsy Action's own surveys , showing how women with epilepsy are still largely not receiving specialist advice before, and adequate healthcare during, pregnancy. This is despite national guidelines set down by the National Institute for Health and Clinical Excellence (NICE) on the management of epilepsy.

 

  • December 2007 Confidential Enquiry into Maternal and Child Health: Saving Mothers' Lives – Reviewing maternal deaths to make motherhood safer 2003-2005; The Seventh Report of the Confidential Enquiries into Maternal Deaths in the United Kingdom. To view the report, go to: http://www.cemach.org.uk/getdoc/7cbb498a-f176-4cb5-ab83-6549bb19a886/Maternal-and-Perinatal-Health.aspx
  • Morrow J I, Russell A, Gutherie E, et al 'Malformation risks of anti-epileptic drugs in pregnancy: A prospective study from the UK Epilepsy and Pregnancy Register', J Neural Neurosurg Psychiatry. 2005 Sep 12.
  • Morrow J I, Russell A, Gutherie E, et al 'Malformation risks of anti-epileptic drugs in pregnancy: A prospective study from the UK Epilepsy and Pregnancy Register', J Neural Neurosurg Psychiatry. 2005 Sep 12. Evidence from the above study showed that on average, women with epilepsy taking any anti-epileptic drug have a 4.2 per cent chance of having a baby with a major congenital malformation (MCM).
  • The Ideal World for Women Survey was sent to 2000 women with epilepsy, aged over 16. Some 537 usable responses were returned, a response rate of 26.85 per cent.
  • December 2007 Confidential Enquiry into Maternal and Child Health: Saving Mothers' Lives – Reviewing maternal deaths to make motherhood safer 2003-2005; The Seventh Report of the Confidential Enquiries into Maternal Deaths in the United Kingdom. To view the report, go to: http://www.cemach.org.uk/getdoc/7cbb498a-f176-4cb5-ab83-6549bb19a886/Maternal-and-Perinatal-Health.aspx
  • Morrow J I, Russell A, Gutherie E, et al 'Malformation risks of anti-epileptic drugs in pregnancy: A prospective study from the UK Epilepsy and Pregnancy Register', J Neural Neurosurg Psychiatry. 2005 Sep 12.
  • Morrow J I, Russell A, Gutherie E, et al 'Malformation risks of anti-epileptic drugs in pregnancy: A prospective study from the UK Epilepsy and Pregnancy Register', J Neural Neurosurg Psychiatry. 2005 Sep 12. Evidence from the above study showed that on average, women with epilepsy taking any anti-epileptic drug have a 4.2 per cent chance of having a baby with a major congenital malformation (MCM).
  • The Ideal World for Women Survey was sent to 2000 women with epilepsy, aged over 16. Some 537 usable responses were returned, a response rate of 26.85 per cent.

 

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