COVID-19 information

Visiting is once again welcomed at The Walton Centre. So that we can safely reintroduce visiting, visits should be pre-booked with an allocated appointment slot. Patients can have two visitors each.

General safety measures remain in place at The Walton Centre - and in our other clinic settings within the community – until further notice. These include temperature checks, the wearing of face coverings and social distancing.

Developing a preconception care pathway for women with epilepsy 

 

 

This is a national study to develop a preconception care pathway for women with epilepsy in the UK. The National Institute of Health Research* has funded this study as part of their research for patient benefit. 

(*This study is funded by the NIHR [RfPB (NIHR200791)]. The study team acknowledge support from NIHR Research for Patient Benefit and Clinical Research Network. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.)

We hope this study will improve the lives of women with epilepsy planning pregnancy. This will be achieved by:

  • identifying essential preconception support
  • identifying the stages along the pathway to step in and support; and
  • understanding what outcomes of preconception support are important from a patient's point of view

An update on the study (April 2022) - The survey is now open

We are at a vital stage of the project, the UK online Delphi survey. We developed the survey by analysing the results of interviews and focus groups.

In the first stage of the study we spoke to 57 women, their partners, spouses, family, friends and carers to understand their experiences of preparing for pregnancy. Thank you to everyone who has helped us in the survey development  and to those who took the time to participate in interviews and focus groups. Thank you for sharing your experiences and we look forward to you joining the online survey. By registering to take part in the online Delphi survey you are helping in working together to develop a preconception care pathway for epilepsy.

You can take part if you are a:

  • Woman with epilepsy, their partner, spouse, family, friend or carer
  • Health professional who works with women with epilepsy
  • Commissioner of services for women with epilepsy
  • Researcher
  • Person involved in providing help and support for women with epilepsy

Join the survey now

Do you know someone who you think might be interested, want to let persons in your service know about this study, and interest in participating yourself? Check out the study leaflet/poster

For further information check out the study information leaflet or a guide to completing the online survey

You can contact the research team with any questions or for more information. If at any time you would like to discuss the Delphi survey or if you are experiencing any difficulty accessing the online system, please contact: Janine Winterbottom (Project Lead) and Jessica Gay (Research Assistant) via preconceptionstudy@liverpool.ac.uk or 0151 556 3721

 

Can I take part?

This study invites 'experts' stakeholders who have experience and can share their views about the care and support for women with epilepsy who wish to plan a pregnancy.

For this study, experts stakeholders are

  • People with personal experience of living with epilepsy (women with epilepsy aged 16 – 50 years, their partner, spouse, parents, siblings, extended family, friends and carers
  • Health professionals (including primary care, secondary care and tertiary care, allied health professionals, and healthcare commissioners)
  • Members of voluntary organisations supporting people living with epilepsy and preconception care
  • Researchers who work in the field of preconception care

The survey will determine stakeholders' views on what preconception care should be done and when. By registering to take part in the online Delphi survey, you are helping in working together to develop a preconception care pathway for epilepsy.

Please check out the study letter of invitation and study recruitment poster.

Recruitment is open for anyone working or residing in England, Wales, Scotland and Northern Ireland. Please check out the study poster.

 

What happens next?

You can participate in the online survey which is now open. This survey is the first of two online surveys in this Epilepsy Preconception study. We will ask you to complete the registration process using your preferred e-mail to generate your unique study ID. Your ID will ensure your registration details will be confidential and that your survey responses will be anonymous. Completing registration involves confirming your agreement to participate and receiving e-mails about the survey completion. You will receive a confirmation e-mail of successful registration. When you press register, the survey opens for you to get started.

The survey involves completing two online surveys a month apart. If you have already registered your interest in participating, we will send you the link to join the survey. If you have not received this e-mail, please check your junk e-mail. The online survey will take about 20 - 30 minutes to complete, and you can take breaks and save your responses. The survey will remain open until 31 May. Completing both surveys strengthens our understanding on what is essential for women with epilepsy who wish to plan a pregnancy.

Click here for a guide to completing the online survey

 

The research team

Dr Janine Winterbottom – (Research Lead) Advanced Nurse Specialist in Epilepsy at The Walton Centre NHS Foundation Trust, Liverpool

Professor Tony Marson – Consultant Neurologist at The Walton Centre NHS Foundation Trust, Liverpool and Professor of Neurology at the University of Liverpool

Dr Adam Noble – Senior Lecturer (Health Service Research) at the University of Liverpool

Professor Pauline Slade - Prof in Clinical Psychology/Consultant Clinical Psychologist at the University of Liverpool

Professor Catrin Tudur-Smith - Professor in Medical Statistics at the University of Liverpool

Dr Kiran Jilani – Consultant Obstetrican at the Liverpool Women's Hospital, Liverpool 

Miss Emily Lloyd – Patient co-researcher

Miss Jessica Gay – Research assistant, University of Liverpool

FAQs

Take a look at our FAQs for more information on the study.

Study flow chart

Contact Information

Research Team Telephone: 0151-556 3721

Study email: preconceptionstudy@liverpool.ac.uk or preconceptionstudy@nhs.uk 

Are you a healthcare professional?

Please share the study details with anyone you feel might be interested in this study. We are keen to involve all members of the multidisciplinary professional team in supporting women with epilepsy in primary, secondary and tertiary care. Click here for more information. 

If you have any questions, please e-mail preconceptionstudy@liverpool.ac.uk 

Please also check out the participant information leaflet.

Page last updated: 09 May 2022