good practice
Specialist midwife — epilepsy
... specialist services for women with epilepsy were lacking within most maternity hospitals. I decided to become a voice for these women.
Kim Morley, a midwife from Hampshire, UK, describes how she was motivated to set up an epilepsy specialist service and launch her own charity, Women with Epilepsy.
In 2000, marshalling for a school cross country run, I met a grandfather whose daughter-in-law died as a result of sudden unexplained death in epilepsy (SUDEP). Her child had similar features to babies I had delivered who had been exposed to excessive alcohol in pregnancy. I found myself literature-searching about the effects of anti-epileptic drugs on the unborn child.
I gathered information from experts researching the effect of these drugs and from families whose children had a diagnosis of fetal anticonvulsant syndrome, and shared this information with my professional colleagues through lectures and seminars.
Filling the gap
It became apparent that not only was there lack of knowledge about this, but specialist services for women with epilepsy were lacking within most maternity hospitals. I decided to become a voice for these women and gained the support of our head of midwifery and senior obstetric consultant. In 2002, I set up an epilepsy specialist service at the Royal Hampshire County Hospital, Winchester, providing preconceptual and pregnancy counselling and information from the epilepsy support groups. For my work and dedication I was awarded a bursary from the hospital enabling me to study for a professional diploma in epilepsy.
Due to lack of resources, the service I provided was unfunded; most of the work was in my own time, at my own expense. This changed in 2005, when Natasha Olsen decided she wanted other women to benefit from the specialist service she received and asked me to form a charity. She raised £3,000 which launched my charity, Women with Epilepsy. This partly funded my work and gave the service justified recognition.
My encounters with women with this condition have provided avenues of experience and diversified my learning to encompass child protection, women with complex needs, domestic abuse, psychogenic dissociative seizures (events resembling an epileptic seizure), mental illness and substance misuse. In 2006, I qualified as our first independent and supplementary non medical prescriber. This enabled me to support women and their prescribers with medication management advice during the transitional process, preconceptual years and throughout the pregnancy continuum.
Optimal care
With the provision of optimal preconceptual care, epilepsy diagnosis can be reviewed, appropriate specialist referral made, folic acid prescribed, treatment choices discussed and appropriate medication can be prescribed depending on epilepsy type or syndrome. For many, seizures can be stabilised and pertinent issues such as fertility, contraception, safety, risk assessment, screening tests, breastfeeding and future parenting can be discussed, as well as the provision of essential information in the appropriate format to meet individual needs.
Prescribing anti-epileptic drugs in monotherapy (i.e. using a single drug treatment) at the lowest therapeutic dosage reduces the risk of major congenital malformation in pregnancy. For some women, this is not possible due to the nature of their epilepsy or because they have not had the benefit of appropriate preconceptual care. Each woman requires individual assessment of the risks of uncontrolled seizures balanced against potential drug exposure in pregnancy, helping the woman and her partner make an informed decision. It is recommended that women taking anti-epileptic drugs are prescribed folic acid five milligrams once daily preconceptually and for the first trimester of pregnancy to supplement for the known anti-folate effect of these drugs. This is thought to reduce the risk of neural tube defects. This recommendation is still valid despite a recent publication from the UK Epilepsy and Pregnancy Register in the Journal of Neurology and Psychiatry identifying eight neural tube defects among 1,935 cases exposed to anti-epileptic drugs in utero who were taking folic acid preconceptually.
If drugs are prescribed in high doses and/or combination therapy, the provision of evidence-based information from the UK Epilepsy and Pregnancy Register and careful screening and support in pregnancy, can help reduce fears.
Reassuringly, the majority of women will stay seizure-free, have a normal vaginal delivery and deliver a healthy infant. If abnormality is detected in the newborn, early recognition and appropriate intervention ensures that the baby has the best possible outcome. This includes the recognition of fetal anticonvulsant syndrome; a group of disorders where the baby can have a characteristic facial appearance, major congenital malformation(s), developmental delay and medical disorders. If the condition is diagnosed, early intervention with physiotherapy, speech therapy and Portage play therapy (a home-visiting educational service) ensures these children reach their full potential.
Informed choice
There has been much press coverage about the risks of anti-epileptic drugs, but women should not stop taking their medication unless their epilepsy and treatment have been reviewed by a specialist and the decision they make is an informed one. If the decision to withdraw medication is made, an individualised plan will demonstrate how to gradually withdraw the medication. This will reduce the risk of a seizure occurring as a result of a sudden drop in blood drug levels. Any changes in prescribing should be completed before a pregnancy is planned; therefore the provision of accurate contraceptive advice is essential as part of this management as the enzyme inducing anti-epileptic drugs reduce the efficacy of some hormonal methods of contraception including the oral contraceptive pill and hormonal implant.
In 2007, I made the difficult decision to take the full-time job of Sapphire Epilepsy Specialist Nurse in Southampton City PCT. I have since established a flexible, holistic community service available to adults with epilepsy over the age of 16 years. My women with epilepsy clinic continues to thrive one day a fortnight in Winchester; however, my personal sacrifice has been to only have the pleasure of working one long day on a labour ward per month.
Was this my destiny; helping a population of women with a disability? Every few days, I encounter the unexpected, unprovoked reverberations of pain associated with nerve damage as a result of my spinal injury. Could this be the bond I have with people who encounter seizures; intermittent, unexpected, unwanted episodes that remind you of your condition? I am not sure what continues to drive my passion but all I know is that through my dedication to provide optimal care to women with epilepsy, I have given them a voice and empowered them to make choices that reduce their risks from seizures while ensuring, where possible, that their developing babies are only exposed to the minimal amount of medication required in monotherapy.
With the recession and lack of time for fundraising, the future of my charity is in jeopardy. I will continue to commit myself to this remarkable group of women and next year hope to travel to Ethiopia to extend my work there.