Developing a preconception care pathway for women with epilepsy

Welcome!

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. 

We hope this study will have an impact to 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 the outcome of this support that is important from a patient's point of view

Stage 1 Interview and focus group

Thank you to all those who have taken time to get involved and participating in interview and focus group.

The study team thank you for sharing your experiences, and look forward to your continued support.

 

We are moving to the next key stage of the study, the UK Delphi survey – happening in Autumn 2021.  

This is a key part of the project to find out all stakeholders’ views on what should be done and when.

 

Stage 2 Survey (online Delphi survey)

For women with epilepsy, their partner, family and friends. Register your interest to take part, and we will email you with study details and happy to arrange a chance to discuss

REGISTER YOUR INTEREST NOW

 

For health care professionals & services providing support for women with epilepsy

Want to let persons in your service know about this study and register an interest to take part yourself?

REGISTER YOUR INTEREST NOW

 

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 
  • A person involved in providing help and support for women with epilepsy

 

We are currently recruiting in England, Wales, Scotland and Northern Ireland, with support from our research partners, based in each country below:

    • Scotland – Kircaldy (Fife)
    • England – Liverpool / Knowsley
    • Wales – Aneurin Bevan University Board 
    • Northern Ireland – Belfast

We are happy for you to share this research information with other women with epilepsy and others you feel might be interested.

 

Your invitation to take part:

You may have received a letter of invitation from your doctor or nurse; a copy is available here.

With your invitation, you will have received a Participant Information Sheet (dated 10/2020, v3). A copy is available here.

 

What what happens next:

You will be asked to read the particiant information sheet and you can contact the research team with any questions or for more information.

We will require you to sign the consent form; a copy is available here. You can do this when speaking to the research team on the phone.

Once you have signed the consent form, you will be invited to take part in the study.

There are two key stages for taking part:

Stage 1 Interview and Focus groups. REGISTER NOW

Stage 2 Survey (online Delphi survey) REGISTER YOUR INTEREST NOW

To find out more, click here

 

Get involved

Participant information sheet 

Consent form 

 

Join us in research to develop a care pathway for women with epilepsy in the UK on Biteable.

 

More information

Epilespy Action 

Epilepsy Society 

Epilepsy Scotland, Wales & Northern Ireland

UK epilepsy and pregnancy register 

International League Against Epilepsy

NHS England

Contact Information

Research Team Telephone: 0151-556 3721

Study email: preconceptionstudy@thewaltoncentre.nhs.uk 

 

The research team

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

Professor Tony Marson – Consultant Neurologist at The Walton Centre Foundation Trust, Liverpool

& 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.

Take a look at our FAQs for more information on the study. There is also a useful video below:

Study Flow chart