Women with epilepsy
Women with epilepsy

Professional page

26th September 2017: The voices of families and professionals passionate about ensuring all women of child bearing potential receive accurate information about sodium valproate before there is risk of pregnancy. Proud to be part of this EMA first public hearing.

 

26/09/17 Pharmacovigilance Risk Assessment Committee (PRAC) Public Hearing on valproate and related substances, European Medicines Agency. Pleased to be speaking at this hearing on behalf of women with epilepsy.

 

22/09/17 Many women still not aware of risks of taking valproate in pregnancy survey conducted by Epilepsy Society, Epilpsy Action and Young Epilepsy reveals: Link to Epilepsy Action news page 

 

18/08/17 Please take part in this survey to find out how many women under 50 with epilepsy are aware of the risks around the epilepsy drug sodium valproate https://www.surveymonkey.co.uk/r/SVArisks 

Please share with friends and family.*Brands/Names of sodium valproate include Epilim, Episenta & valproic acid.

4/04/17 Patient Safety Alert click: NHS Improvements Resources to support safe use of valproate 

About Kim Morley

Kim is an award winning registered midwife, nurse and independent nurse prescriber with additional qualifications in epilepsy, complex pregnancies, child protection, pharmacology, research in evidence based practice, diagnosis and history taking, epidemiology and advanced clinical practice. Kim specialises in antiepileptic drug prescribing management and all aspects of epilepsy. She conducts a unique service alongside her obstetric colleagues, personalising holistic care and treatment support from the preconception years to motherhood. In addition, she works as an epilepsy specialist nurse in neurology.  

Contact details for further information, presentations & lectures

Kim Morley, Epilepsy Specialist Nurse/Midwife Practitioner, Florence Portal House, Royal Hampshire County Hospital, Romsey Rd, Winchester, SO22 5DG. Email: kim.morley@nhs.net Appointments: 01962 824210 Facebook Group: women with epilepsy Twitter: @epilepsymidwife  

The new maternity epilepsy toolkit

 A new peer reviewed maternity epilepsy toolkit 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. Click on the PDF below to download and print the PDF double sided to form a three page booklet. Qualitative research into midwives views of toolkit starting soon. 
Maternity epilepsy toolkit
Please ensure you always download the latest copy of the toolkit
maternity epilepsy toolkit PDF.pdf
Adobe Acrobat document [975.1 KB]

Presentations & study days. Out of Trust requests: please give plenty of notice as these are conducted on annual leave days.

15/11/07  Valproate in women of child-bearing potential, Psychiatry, Parklands Hospital Basingstoke

4-6/10/17 International League Against Epilepsy (Leeds) Poster Abstract Presentation Agenda

26/09/17 Pharmacovigilance Risk Assessment Committee (PRAC) Public Hearing, European Medicines Agency. Professional Speaker Agenda

07/09/17 North Hampshire CCG, 'Specialist support for all women with epilepsy and those taking AEDs'

14/08/17 Increasing epilepsy awareness, Andover War Memorial Hospital, Nurse training

07/08/17 First seizure, pearls and pitfalls. Medics training, Royal Hants County Hospital 

07/07/17 St Helen's & Whiston Hospital RCM Branch: Epilepsy training day for midwives

23/06/17 Wessex & Oxford Obstetric Medicine, Newbury, Preconceptual & Pregnancy Management in women with epilepsy: Best practice 

21/06/17 Royal Hants County Hospital Medics, Increasing epilepsy awareness

20/06/17 RCM HHFT Branch, Embracing midwifery support to optimise care for women with epilepsy

05/06/17 McGill Ward Royal Hants County Hospital Increasing epilepsy awareness  

05/05/17 Barnsley Hospital NHS Foundation Trust. Embedding a maternity epilepsy toolkit into clinical practice. Obs, Gynae and midwifery attendees. Improving safety for pregnant women with epilepsy

16/03/17 Epilepsy Specialist Interest Group Bristol Audio presentation, Perinatal women with epilepsy 

12/01/17 Education Centre, Queen Alexandra Hospital, 'Epilepsy in Pregnancy'. Obs & Gynae trainees. 

11/01/17 LSA Annual Southern Supervisors of Midwives Conference, Reading 'Women with epilepsy'.

29/11/16 Epilepsy Action Professional Workshop, St Peter’s Hospital. 'Epilepsy in pregnancy' 

16/11/16  University of Hertfordshire Current Research on epilepsy assessment, treatment and management (genetics) and evidence based practice.

19-20/1016: RCM conference the contribution midwives can make in reducing human factors associated with poor fetal and maternal outcomes in women with epilepsy. 

12/10/16 University of Hertfordshire Epilepsy Pharmacology, Emergency management & Toolkit for epilepsy management

5/10/16 ILAE British Chapter Dublin.'Validation of an epilepsy shared-care toolkit designed to reduce disparity in maternity care provision'. 

14/09/16 University of Hertfordshire (Oxford Study Centre) Epilepsy Diagnosis and Differential Diagnosis 

Learn about care for women with epilepsy in pregnancy.                                               RCM Better Births Webinar Morley K (2016) 

News update

Are you a girl or woman under the age of 50, with epilepsy? Please take part in this survey to find out how many women are aware of the risks around the epilepsy drug sodium valproate during pregnancy. The survey is being run by Epilepsy Society, Young Epilepsy and Epilepsy Action: 

https://www.surveymonkey.co.uk/r/SVArisks 

Please fill in the survey and share with friends and family.*Forms of sodium valproate include Epilim, Episenta and Epival. It may also be called valproate or valproic acid. 18 August 2017

 

European Medicines Agency Public Hearing on valproate risks when prescribed in pregnancy on 26th September 2017. Chance to have your voice heard and take part. Do read Public Hearings Guidance before completing the Application form for participation Closing date 25 August 2017: sorry expired now.

 

New RCM epilepsy i-learn module launched for midwives on 16th June 17.

Click RCM epilepsy in pregnancy i-learn So proud to have been asked to write this on behalf of the RCM.

 

New evidence in France of harm from epilepsy drug valproate BBC News 20/04/17 Important for women taking valproate to have preconception counselling whilst using effective contraception. Please do not just stop your medication because of the risk from seizures if you are unmedicated. Do consult your doctor promptly for advice and specialist referral.    

 

NHS Improvements Safety Alert resources to support safe use of valproate Click: MHRA Alert 6/4/17

If you are prescribed sodium valproate & a woman of child-bearing potential, please use effective contraception and seek prompt preconception advice to help you with decision making and choice for future child-bearing. If your baby has been exposed to valproate & your are concerned about your child's development, please discuss this with your GP and health visitor   

 

Important information for girls and young women: sodium valproate and pregnancy. Click: Medicines For Children 22/03/17 

 

Two students have invented the MediVest’ for people with epilepsy. The designers claim this device monitors heart rate variability and body temperature to predict a seizure up to eight minutes in advance. Epilepsy vest award. As with any seizure detection device, featuring on this website is not an endorsement of its efficacy. For further information please see: Epilepsy Action Daily Living Aids

 

ILAE Classification of the Epilepsies (2017): Position paper of the ILAE Commission for Classification and Terminology

 

Association of British Neurologists (02/2017) Statement on valproate

 

European Medicines Agency launches new safety review of prenatal valproate exposure Medscape 10/03/17

 

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

 

CBT nonadherence common in patients with psychogenic seizures  Medscape 16/12/16

 

New ILAE classification of seizures Medscape 12/12/16

 

France sets up fund for Sanofi epilepsy drug victims Reuters 16/11/16

 

Women with epilepsy should be better informed about risks associated with sodium valproate in pregnancy Epilepsy Action Survey, published 31 October 2016. If you would like further information, please click on MHRA Toolkit for women taking sodium valproate and arrange to see your GP if you have not had the opportunity of a review of your epilepsy and treatment. 

 

Emergency contraception update MHRA: interaction with enzyme inducing drugs September 2016 

 

According to a new study, pregnant women & new mothers with epilepsy have reduced life satisfaction 

reported in RCM news 24 August 2016

 

Ten thousand pregnant women took epilepsy drug that raises risk of birth defects Daily Telegraph 10 August 2016. To provide accurate individual counselling about the safety of antiepileptic drugs taken during pregnancy, please contact the UK Epilepsy & Pregnancy Register

 

Neurochecklists to support professionals with neurological diagnosis and management 3 July 2016

 

SUDEP article epilepsy pregnancy and maternal deaths 20 June 2016. To assess your own risks and take control to reduce these risks, see Pregnancy toolkit  and download EpSMon app free of charge. 

 
Pregnant women with epilepsy need specialist care RCOG guidelines press release. BBC News 20 June 2016
 
 
Pregabalin linked to increased risk of birth defects 18 May 2016
Speaking up for women with epilepsy Huffington Post article published 19th May 2016


Other useful tools, articles, organisations and links

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

CEU Guidance:Important contraception advice lamotrigine & enzyme inducing AEDs 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

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

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

Neurochecklist includes evidence based advice for epilepsy diagnosis & management 

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

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

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

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  

Professional guidelines

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

SIGN guidelines (2015) Diagnosis and management of epilepsy in adults

International League Against Epilepsy Guidelines, Reports & Position Papers on Epilepsy

NICE clinical guideline 137 (2012) The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care.

Research opportunities

Epilepsy Action Research studies

Epilepsy Society Research projects

Epilepsy Research UK Transforming lives through research

Publications by the author

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

How can you empower women to manage their own epilepsy?
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