Copyright Simon Way Photographer  

Kim Morley, Email: epilepsymidwife@gmail.com Twitter @epilepsymidwife

A peer reviewed maternity epilepsy toolkit1 designed to improve history taking; reduce risk, increase knowledge and awareness and provide a summary of a woman’s epilepsy management in pregnancy. Documentation should start at the booking appointment and continue throughout pregnancy and the postnatal period. Please use alongside information from the RCOG green top epilepsy in pregnancy guidelines (2016) and this website. Print in colour, double sided. 
Copyright Kim Morley: please reference if used in any publications. 

1. Morley K (2020) Reducing risks for pregnant women with epilepsy: A qualitative study exploring experiences of using a toolkit at the antenatal booking appointment. Epilepsy & Behavior Abstract

5/09/2024 MHRA advises men and their partners taking valproate to use effective contraception. Please click onto link for latest guidance GOV.UK 

20/06/24 New pregnancy prevention measures introduced for topiramate. Topiramate must no longer be prescribed to women and girls unless they fulfil the requirements of a Pregnancy Prevention Programme GOV.UK

22/01/24 Safety and educational materials to support the regulatory measures for prescribing valproate for epilepsy & bipolar for women of child-bearing age & when initiating prescribing in men & women 12-55 years GOV.UK

28/11/23 MHRA National Patient Safety Alert for valproate prescribing Gov.UK Review & expert advice

12/10/23 Lessons learnt from neurological complications MBRRACE-UK UK Maternal Report p70-82

12/12/22 MHRA statement: Valproate reminder of current Pregnancy Prevention Programme: GOV.UK 

12/12/22: Drug safety update article. Because of the known risk of birth defects and neurodevelopmental disorders following use of valproate in pregnancy, valproate should only be used in women of child-bearing potential if a Pregnancy Prevention Programme is in place, which includes a requirement to use effective contraception GOV.UK No one should stop taking valproate without advice from their healthcare professional.

12/12/22: How effective are the different form of contraception? NHS UK. Check antiseizure interactions with hormonal contraceptives in resources from: Epilepsy Action Epilepsy Society

21/7/22 Safety review to begin on topiramate which will look at possible harms in the learning and development of children exposed during pregnancy GOV.UK Advice for professionals on gov.uk- 

• Continue to advise patients on the already known risks associated with topiramate during pregnancy. See article in the MHRA’s Drug Safety Update from July 2022 for a reminder of current advice.
• Before starting topiramate in a woman of childbearing potential, fully inform the patient of the risks and the need to use highly effective contraception throughout treatment with topiramate.
• Do not prescribe topiramate during pregnancy for migraine prophylaxis. Specialist advice should be sought for patients with epilepsy who are pregnant.

29/6/22 Taylor, E., Junaid, F., Khattak, H., Sheikh, J., Ghosh, J., Kemah, B.L., Piercy, C.N., Morley, K., Moss, N., Knox, E. and Allotey, J., 2022. Care of pregnant women with epilepsy in the United Kingdom: A national survey of healthcare professionals. European Journal of Obstetrics & Gynecology and Reproductive Biology. ejog.org Privileged to have been part of this team & scoping exercise confirming that current care for women with epilepsy in UK is fragmented. Future research from the team aims to standardise accessible care, improve communication, optimise seizure risk prediction & improve understanding of impact on unborn babies from anti-seizure medicines. Proud for the maternity epilepsy toolkit to feature. 

22/6/22 Research opportunity: now closed "The MuM-PreDiCT team are interested in speaking with women and birthing people who are at least 28 weeks pregnant and/or have given birth in last 2 years and who are living with two or more long-term health conditions, including epilepsy, to understand their experiences of pregnancy care. 

21/6/22 Independent Neurology Inquiry, Belfast Report 

27/4/22 Epilepsies in children, young people and adults NICE guideline [NG217] publication NICE

26/1/22 Kim Morley blog for epilepsy research: Epilepsy in Pregnancy in the Clinic | Epilepsy Research UK

11/1/22 Epilepsy Research UK webinar including Epilepsy in pregnancy Research Roundtable webinars Epilepsy Research UK

11/11/21 Following latest MBRRACE UK Maternal Dec 2021 report. It remains vital health professionals and women with epilepsy in pregnancy and postnatal year are aware of risk reduction strategies for sudden unexpected death in epilepsy (SUDEP).

17/6/21 Risks of sodium valproate. GMC case study scenario for GPs, Pharmacists, epilepsy nurses & health professionals involved in a woman's care partnership: Ethical guidance and learning

16/06/21 Letter to women and girls taking sodium valproate with information re safety, contraception & pregnancy NHS England Do not stop taking valproate unless you have spoken to your doctor or
nurse. If valproate is stopped without receiving specialist advice, seizure control may change and uncontrolled seizures can increase the risks of accidents, injuries and seizure related deaths. Further information Epilepsy Action Epilepsy Society SUDEP Action

03/05/21 Are you part of a UK professional team offering support to women during pregnancy? Please take part in the National Mapping Survey of Epilepsy in Pregnancy Now closed

16/02/21 Join us for this GOLD Midwifery 2021 Online Conference presentation with Kim Morley, MSc, INP, RM, RN! "Epilepsy in Pregnancy: Reducing Risks with a Multiprofessional Healthcare Team" is an info-packed presentation with the latest evidence on the impact of care on outcomes for mothers and infants. You'll learn about the potential health burden associated with epilepsy, how to reduce risks during pregnancy, and the importance of a multi-professional approach.GOLD conference

14/01/2021 Doubling of deaths of women with epilepsy SUDEP-Action. My perspective about this: Blog  

14/01/21 Mortality rate in women with epilepsy due to sudden unexpected death in epilepsy (SUDEP) has more than doubled (2016-18) since the 2013-15 MBRRACE review. MBRRACE 2020 report

7/01/21 Review looks at risks associated with epilepsy drugs during pregnancy Epilepsy Society  

7/01/21 Epilepsy midwife looks at risks around epilepsy drugs during pregnancy for Epilepsy Society

Kim Morley's blog

7/01/21 Press release - safety review of epilepsy medicines in pregnancy - women who may become pregnant urged to discuss treatment options with their doctor GOV.UK

7/01/21 Click GOV.UK for latest safety leaflet on epilepsy medicines and pregnancy to help patients and their families understand the risks.

7/01/21 The Public Assessment Report of antiepileptic drugs: review safety of use during pregnancy GOV.UK

08/07/20 This report captures the voices of victims & their families with hidden conditions associated with harm from valproate, primodos and mesh: The independent Medicines and Medical Device Review

06/05/20 Valproate Pregnancy Prevention Programme: temporary advice for management during coronavirus (COVID-19). Click: GOV.UK 

22/03/20 Advice regarding coronavirus (COVID-19) for pregnant women: rcog.org.uk

2/2/20 Special Edition: Prevent 21: SUDEP summit: International journal publishes research on tackling epilepsy deaths: epilepsybehavior.com

26/01/20 Valproate use by women and girls update: www.gov.uk 

3/01/20 Mothers on antiepileptic drugs can safely breastfeed Medscape.com

9/09/19 Epilepsy community calls for urgent action to prevent Brexit-related epilepsy deaths. Link: 

SUDEP Action

06/08/2019 Morley k (2019) Reducing risks for pregnant women with epilepsy: A qualitative study exploring experiences of using a toolkit at the antenatal booking appointment​ Epilepsy & Behavior

16/04/19  Valproate medicines & serious harms in pregnancy: New annual risk acknowledgement form Drug Safety Update volume 12, issue 9: April 2019: 2.

30/03/19 Guidance on valproate use in women/girls of childbearing years. Royal Colleges Guidance

28/03/19 Valproate in children, young people and adults NICE update

21/03/19 Medicines with teratogenetic potental: effective contraception/pregnancy testing: GOV.UK

18/12/18 Valproate medicines: are you acting in compliance with the pregnancy prevention programme? Gov.UK 

02/11/18 SUDEP Action Prevent 21 Summit, collaboration of families, professionals, patient support groups, staff, trustees and MP's from SUDEP Action passionate about reducing preventable deaths from epilepsy. Find out more:  SUDEP Action

26/09/18 Valproate Pregnancy Prevention Programme: actions required now from GPs, specialists, and dispensers GOV.UK

2/09/18 Midwives do read my latest article and learn about how you can optimise safety for women with epilepsy British Journal of Midwifery Look out for publication details of research into midwives experiences of using the maternity epilepsy toolkit later this year. 

17/07/18 Medicines taken during pregnancy: please report suspected drug reaction, including in the baby or child, on a Yellow Card GOV.UK

14/07/18 at 12pm. 'Picnic in the Park' Join us with your families at 'Queen Elizabeth Olympic Park' Meadow off Essex Way (near Velodrome), London, E20 1DY, UK. Please bring your own picnic. This event will provide an opportunity of getting to know other women with epilepsy. Further details and booking click Epilepsy Action.

16/06/18 Cannabis treatment for epilepsy. Is there enough evidence of its efficacy?  Pharmaceutical Journal

7/06/18 Pharmacovigilance Risk Assessment Committee (PRAC) assessment report for valproate. 

valproate and related substances

May 2018 AntiEpileptic drug Monitoring in PREgancy: a double-blind randomised trial on effectiveness and acceptability of monitoring strategies

Royal College of Obstetricians and Gynaecologists (2016) Epilepsy in Pregnancy. Green-top Guideline No. 68. Royal College of Obstetricians and Gynaecologists

SIGN 143 Diagnosis and epilepsy management in adults

International League Against Epilepsy Guidelines

Epilepsies in children, young people and adults NICE guideline [NG217] NICE  Published: 27 April 2022

Epilepsy Action Research

Epilepsy Society Research projects

Epilepsy Research UK Transforming lives through research

Allotey J, Fernandez-Felix BM, Zamora J, Moss N, Bagary M, Kelso A, et al. (2019) Predicting seizures in pregnant women with epilepsy: Development and external validation of a prognostic model. PLoS Med 16(5): e1002802. PLOS Medicine

Al Wattar B, Tamilselvan K, Khan R, Kelso A, Sinha A, Pirie A, McCorry D, Khan K and Thangaratinam S (2016) Development of a core outcome set for epilepsy in pregnancy (E-CORE): a national multi-stakeholder modified Delphi consensus study, BJOG: An International Journal Of Obstetrics And Gynaecology, MEDLINE, EBSCOhost, viewed 14 December 2016.

Asadi-Pooya  AA (2015) Review: High dose folic acid supplementation in women with epilepsy: Are we sure it is safe?. Seizure: European Journal Of Epilepsy 27: 51-53

BNF on line service BNF publications

Bromley R (2016) The treatment of epilepsy in pregnancy: The neurodevelopmental risks associated with exposure to antiepileptic drugs. Reproductive Toxicology 64, 44th Annual Conference of the European Teratology Society 203-210

Bromley, R, Weston, J, & Marson, A (2017) Maternal Use of Antiepileptic Agents During Pregnancy and Major Congenital Malformations in Children. Jama 318 (17):1700-1701

CEU Guidance:Important contraception advice lamotrigine & enzyme inducing epilepsy medications Drug interactions with hormonal contraception January 2017

Epilepsy Specialist Nurse Association (ESNA) Contact:ESNA online

Gov.UK: Sodium valproate alert abnormal pregnancy outcomes & new communication materials  Feb 16

Generalised Anxiety Disorder Assessment: GAD-7 Anxiety Test Questionnaire

GP and Health Professional Resources: Epilepsy Action Primary Care Resource Pack

Herzog A, Mandle H, Cahill K, Fowler K, Hauser W and Davis, A (2016) Contraceptive practices of women with epilepsy: Findings of the epilepsy birth control registry. Epilepsia (Series 4), 57(4): 630-637

ILAE Epilepsy and Womens Group Archive epilepsy and women Joining together to make pregnancy outcomes better

Kinney MO and Morrow J (2016) Epilepsy in pregnancy BMJ 353:i2880 

Learning disability health charter

Multi-drug Interaction Checker Medscape.com drug/drug/interaction/checker

NHS Choices: Moodzone: Self help toolkit for Stress, Anxiety & Depression

Neurochecklist includes evidence based advice for epilepsy diagnosis & management 

Panebianco M, Sridharan K and Ramaratnam S (2017) Yoga for epilepsy:  Cochrane Review 

Patient health questionnaire (PHQ-9) Instrument for measurement of common mental health disorders

Pennell PB, French JA, May RC, Gerard E, Kalayjian L, Penovich P, Gedzelman E, Cavitt J, Hwang S, Pack AM, Sam M, Miller JW, Wilson SH, Brown C, Birnbaum AK, Meador KJ; MONEAD Study Group. Changes in seizure frequency and antiepileptic therapy during pregnancy. N Engl J Med. 2020;383(26):2547-2556. https://www.nejm.org/doi/full/10.1056/NEJMoa2008663. 

Preventing maternal mortality: Its better to ask Royal College of Physicians and Surgeons of Glasgow & Royal College of Obstetricians & Gynaecologists.

Reiter S, Bjørk M, Daltveit A, Veiby G, Kolstad E, Engelsen B and Gilhus N (2016) Life satisfaction in women with epilepsy during and after pregnancy. Epilepsy & Behavior 62: 251-257 http://www.sciencedirect.com/science/article/pii/S1525505016302037

Royal College of General Practitioners Clinical epilepsy resources

Royal College of Obstetricians and Gynaecologists: RCOG information leaflet for women with epilepsy in pregnancy

Royal College of Psychiatry: Mental Health Problems in Pregnancy

Spencer B (2015) 'Medications and Breastfeeding for Mothers With Chronic Illness' JOGNN: Journal Of Obstetric, Gynecologic & Neonatal Nursing 44(4): 543

Thangaratinam S, Marlin N, Newton S, Weckesser A, Bagary M, Greenhill L, et al. AntiEpileptic drug Monitoring in PREgnancy (EMPiRE): a double-blind randomised trial on effectiveness and acceptability of monitoring strategies. Health Technol Assess 2018;22(23)

Tomson T, Battino D, Bonizzoni E, Craig J, Lindhout D, Perucca E, Sabers A, Thomas S  & Vajda F (2015) Dose-dependent teratogenicity of valproate in mono-and polytherapy. Neurology 85 (10): 866-872

Tomson, TorbjörnFaravelli, Francesca et al. (2018) Comparative risk of major congenital malformations with eight different antiepileptic drugs: a prospective cohort study of the EURAP registry. The Lancet Neurology. 17(6): 530 - 538 The Lancet Neurology

UK Teratology Information Service UKTIS for information leaflets about topiramate, gabapentin, pregabalin, sodium valproate, carbamazepine and lamotrigine.

Voinescu PE, Page B, Pennell MD (2018) Delivery of a personalised treatment approach to women with epilepsy Semin Neurol 37(6):611-623

Weston J, Bromley R, Jackson CF, Adab N, Clayton-Smith J, Greenhalgh J, Hounsome J, McKay AJ, Tudur Smith C and Marson AG (2016) Monotherapy treatment of epilepsy in pregnancy: congenital malformation outcomes in the child Cohrane Database of Systematic Reviews 11 Available from: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010224.pub2/epdf  

Morley K. (2024) Epilepsy and Pregnancy.  ISSN 2516-5852 (Online). AIMS Journal, 2024, Vol 36, No 2. aims.org.uk 

Allison Felker*, Kim Morley*, Pooja Dassan*, Upma Misra, Samantha Holden and Marian Knight on behalf of the MBRRACE-UK neurology chapter writing group.  Learning from Neurological complications. In: Knight M, Bunch K, Felker A, Patel R, Kotnis R, Kenyon S, Kurinczuk JJ (Eds.) on behalf of MBRRACE-UK. Saving Lives, Improving Mothers’ Care Core Report - Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2019-21. Oxford: National Perinatal

Epidemiology Unit, University of Oxford 2023: p70-82

Taylor, E., Junaid, F., Khattak, H., Sheikh, J., Ghosh, J., Kemah, B.L., Piercy, C.N., Morley, K., Moss, N., Knox, E. and Allotey, J., 2022. Care of pregnant women with epilepsy in the United Kingdom: A national survey of healthcare professionals. European Journal of Obstetrics & Gynecology and Reproductive Biology. ejog.org

Morley, K., 2021. Enhancing patients' experiences of living with epilepsy. Nursing Standard (Royal College of Nursing (Great Britain): 1987).

Morley K (2021) MBRRACE review findings: SUDEP Action Blog  

Marian Knight, Adrian Wills, Sreeman Andole, Kathryn Bunch, Samantha Holden, Sebastian Lucas, Kim Morley, Catherine Nelson-Piercy, Judy Shakespeare, Esther Youd on behalf of the MBRRACE-UK neurology chapter-writing groupIn Knight M, Bunch K, Tuffnell D, Shakespeare J, Kotnis R, Kenyon S, Kurinczuk JJ (Eds.) on behalf of MBRRACE-UK. Saving Lives, Improving Mothers’ Care - Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2016-18. Oxford: National Perinatal Epidemiology Unit, University of Oxford 2020: p36-42​ 

MBRRACE UK Maternal Dec 2020 report

Morley K (2021) Epilepsy midwife looks at risks around epilepsy drugs during pregnancy for Epilepsy Society: Blog

Morley K interview with Dr Ruth Oshikanlu MBE, 2020 Celebrating the Year of the Nurse and Midwife: Nurses & Midwives Talk

Morley K (2020) Reducing risks for pregnant women with epilepsy: A qualitative study exploring experiences of using a toolkit at the antenatal booking appointment. Epilepsy & Behavior PDF

Blake J, Ablitt A, Ruffmann C, Morley K, Williams S, Moore A & Papps B (2019) Functional neurological disorder: Reflections on a pilot psychoeducational group in Hampshire. The Neuropsychologist: 8.

Morley K (2019) Reducing risks for pregnant women with epilepsy: A qualitative study exploring experiences of using a toolkit at the antenal booking appointment. Epilepsy & Behavior Medscape.com

Watkins L, Cock H, Angus-Leppan H, Morley K, Wilcock M, Shankar R, (2019) Valproate MHRA guidance: limitations and opportunities. Frontiers in Neurology. Available from: Front. Neurol. Front. Neurol.

Morley K (2018) Epilepsy in pregnancy: The role of the midwife in risk management. British Journal of Midwifery 26 (9): 564-573 

Morley K (2018) The Royal College of Midwives (RCM) Epilepsy i-module. Poster Abstract. Patient Safety Congress, Manchester    

Morley K (2017) The Royal College of Midwives (RCM) Epilepsy i-module. Poster Abstract. MBRRACE-UK Launch meetings, 2017, London and Manchester   

Morley K (2017)  Exploring midwives experiences of using a maternity epilepsy toolkit. Poster Abstract. MBRRACE-UK Launch meetings, 2017, London and Manchester.  

Morley K (2017) Exploring midwives experiences of using a maternity epilepsy toolkit. Poster Abstract 26 p68. The International League Against Epilepsy (ILAE) British Chapter Conference 2017, Leeds. 

Morley K (2017) Epilepsy i-learn module Royal College of Midwives. Available from: RCM Epilepsy i-learn module  

Morley K (2016, October) Validation of an epilepsy shared-care toolkit designed to reduce disparity in maternity care provision. Poster presented at the International League Against Epilepsy (ILAE) British Chapter Conference 2016, Dublin, Republic of Ireland. 

Morley K (2016) Specialist Midwifery (pt 2) The career journey of an epilepsy specialist midwife practitioner Epilepsy Professional  Autumn 2016 Leeds: Epilepsy Action (42): 24-27

Morley K (2016) More than a midwife Epilepsy Today September 2016 Leeds: Epilepsy Action (131): 18-20

Morley K (2016) Looking forward IN: Academy of Royal Colleges (eds) A vision of healthcare 20/20. London: Academy of Royal Colleges 102-103 pdf

Morley K (2016) Specialist Midwifery (pt 1) The career journey of an epilepsy specialist midwife practitioner Epilepsy Professional Summer 2016 Leeds: Epilepsy Action (41): 18-22

Morley K (2016) Antiepileptic drug management during pregnancy: A shared decision approach. British Journal of Midwifery 24(5): 353-361 Available from:

http://www.magonlinelibrary.com/doi/10.12968/bjom.2016.24.5.353

Morley K (2016) Optimising midwifery care for women with epilepsy. Nursing in Practice. Available from: http://www.nursinginpractice.com/article/optimising-midwifery-care-women-epilepsy

Morley K (2010) Book review: Effective Migraine Treatment in Pregnant & Lactating Women: A Practical Guide. Authors: DA Marcus and PA Bain (2009) Humana Press The Obstetrician & Gynaecologist 12(1): 6 Link

Morley K (2009) Specialist midwife-epilepsy Disability, Pregnancy & Parenthood International 66. 

Morley K (2009) Sudden unexpected disablement Disability, Pregnancy & Parenthood International 66

Morley K (2008) Improving care for women with epilepsy. British Journal of Midwifery 16(10): 649-655 Available from: http://www.magonlinelibrary.com/doi/abs/10.12968/bjom.2008.16.10.31233