Patients
What patients could do
(When planning pregnancy, thinking they might be pregnant, becoming pregnant, booking into the obstetric services, planning delivery or preparing for the first year after delivery)
- Be aware what effect their AEDs will have on contraception, fertility, and conception
- Be aware what extra vitamins might help their baby to be fit and well
- Plan for pregnancy (we realise this is not always possible)
- Be active in ensuring availability of shared care pregnancy notes.
- Request rapid access to specialist epilepsy services
- Register online on the epilepsy in pregnancy register or ask their healthcare professional to register their pregnancy
Obstetricians
What obstetricians and midwives should do
- Ensure that all pregnant women with epilepsy are directed towards specialist epilepsy services at the first opportunity
- Ensure that a plan is in place for action if seizures occur during delivery
- Where patients are seizure free – epilepsy expert advice should be sought to establish which dosing regime is most appropriate
- Where seizures continue – epilepsy expert advice should be sought to discuss treatment change and action should be considered to improve epilepsy control
- When discharge is planned after delivery, ensure that follow up is arranged in the next month with telephone or clinic contact. Discussion should include reinforcement of the benefits of breastfeeding.
Neurologists, epilepsy nurses, and epileptologists
What neurologists, epilepsy nurses, and epileptologists should do
- Ensure that all women are provided with information about epilepsy and reproduction from the earliest stages of their diagnosis
- Ensure that rapid access is available for epilepsy review for anyone planning pregnancy, at any stage in pregnancy, and in the immediate post-partum period.
- Provide individualised assessment of risk of drug continuation and drug withdrawal in pregnancy
- Communicate using patient-held pregnancy notes
- At each encounter with a woman of reproductive age taking AEDs, there are major questions to address:
- Is the diagnosis of epilepsy secure?
- Is current treatment effective?
- Is it possible to reduce dose or number of AEDs?
- If valproate is being used, is it possible to withdraw valproate or reduce daily dose?
Pharmacists
What pharmacists can do
- Ensure that any woman of reproductive age prescribed valproate is counselled about the associated risks in pregnancy, and how to access advice regarding alternative treatments. The application of MHRA’s policy on valproate would be appropriate.
- Advise adherence with current regime pending specialist review
Emergency Physicians
What emergency physicians should do
- Ensure that any woman of reproductive age receiving valproate is directed towards epilepsy specialist services to allow assessment of appropriateness of use +/or dose
- Ensure women with epilepsy or first seizures are directed or referred to specialist services for urgent review if pregnant.
- Communicate using patient-held pregnancy notes
Primary Care Physicians
What primary care physicians should do
- Ensure that any woman of reproductive age receiving valproate is directed towards epilepsy specialist services to allow assessment of appropriateness of use +/or dose
- Ensure women with epilepsy or first seizures are directed or referred to specialist services for urgent review if pregnant.
- Ensure that rapid access is requested for epilepsy review for anyone planning pregnancy, at any stage in pregnancy, and in the immediate post-partum period.
Commissioners
What those commissioning services should do
- Ensure that epilepsy services are commissioned to include rapid access available (<2 weeks) for high risk groups
- Ensure that Obstetric services are commissioned to deliver effective multi-disciplinary epilepsy care for women with epilepsy
- Ensure that robust and monitored referral pathways are in place facilitating timely access to specialist services for women with epilepsy
- Ensure that the needs of women with epilepsy are met by collecting and monitoring patient engagement feedback