At INFACT, we believe that access to clear, compassionate, and trustworthy information is vital for every parent and carer navigating the impact of Sodium Valproate. That’s why we’ve created a range of free resources, written personally by our founders, Emma and Janet , both parents, carers, and long-standing campaigners in this field.

Our resources cover a wide range of topics, including:

Understanding Fetal Valproate Spectrum Disorder (FVSD)
Accessing support services
Navigating education and healthcare
Guidance on rights and entitlements
Practical tips for daily living and emotional wellbeing

We know that not everyone has easy access to a printer, so if you need printed copies, we’re more than happy to post out an INFACT Information Pack , completely free of charge and directly to your home.

You can also access and print all of our resources below

Our resources include:

Educational materials for families and professionals
A Women’s Guide to Anti-Epileptic Drugs (AEDs) in Pregnancy
Parent booklets to help you understand and manage day-to-day life with Fetal Valproate Spectrum Disorder

These materials are here to support you, inform you, and remind you that you are never alone in this journey.

Education for FACS Leaflet 2017 (1)

FACSA Educational Booklet 2014

FSA Parent Booklet 2013

FVS & Educational Co-Morbidities 2017

Womens Guide to AED’s in Pregnancy INFACT & FACSA

Educational Support Letter 2013

The Hughes Report – Patient Safety Commissioner Dr Henrietta Hughes recommendations for Financial Redress for those disabled by Sodium Valproate

Condition Insight Report – What Is This?

We here at INFACT worked with Capita to produce this document A Condition Insight Report for Personal Independence Payment (PIP) . This is a document that provides the DWP (Department for Work and Pensions) and assessors with detailed medical and functional information about a specific condition. It helps assessors understand how a condition typically affects someone day to day , including symptoms, likely challenges, and the variability of impact. These reports are often written in general terms, based on clinical knowledge, but they can strongly influence the outcome of PIP assessments.

When applying for Personal Independence Payment for your child harmed by Valproate, please print this Condition Insight Report document off and include it with your application. This document has been made available to print from the Law Society NI

Supporting Families with PIP: How INFACT Helps Those Affected by Fetal Valproate Spectrum Disorder (FVSD)

Join Our Facebook Support Group

If you’re a parent or carer affected by Sodium Valproate or other medications in pregnancy, we warmly invite you to join our private Facebook support group. This is a safe, understanding space where we share knowledge, offer emotional support, and lift each other up through:

Epilepsy-related challenges and questions
Health and wellbeing tips and advice
Navigating education systems and support for children
Adult support services and transitions
Bipolar Disorder and mental health
Medication discussions and lived experiences

You’re not alone and in this group, you’ll find others who truly get it.

Facebook Online Support Group – Epilepsy, Pregnancy & Pills https://www.facebook.com/groups/1385175595060351/?mibextid=wwXIfr

FEMS Service (Fetal Exposure to Medicines Service)

🌟 Understanding the Fetal Exposure to Medicines Service (FEMS)

If you live in the North of England and are concerned that a child or adult in your care may have been affected by certain medications taken during pregnancy, especially anti-seizure medicines

🧠 What Is FEMS?

The Fetal Exposure to Medicines Service (FEMS) is a special NHS service offering expert advice and support for individuals who might have been affected by exposure to specific anti-seizure medications before birth. This service is currently a pilot project funded by NHS England and is available at:mft.nhs.uk

Royal Manchester Children’s Hospital
Newcastle Upon Tyne Hospitals NHS Foundation Trust

The pilot runs until March 2026

Which medicines are included in the pilot?

Initial pilot referral criteria based on exposure to the following medications:
Sodium valproate	Topiramate
From April 2025, the pilot will extend to cover the additional medications below:
Acetazolamide	Everolimus	Piracetam
Brivaracetam	Fenfluramine	Pregabalin
Buccal midazolam	Gabapentin	Primidone
Cannabidiol	Lacosamide	Rufinamide
Carbamazepine	Lamotrigine	Stiripentol
Cenobamate	Levetiracetam	Tiagabine
Clobazam	Oxcarbazepine	Valproic acid
Clonazepam	Perampanel	Vigabatrin
Eslicarbazepine acetate	Phenobarbital	Zonisamide
Ethosuximide	Phenytoin

👨‍👩‍👧 Who Can Access FEMS?

FEMS is available to :

Children and adults living in the North of England (North West, North East, Yorkshire, and Humber)
Individuals who have been exposed to certain anti-seizure medications during pregnancy
Those experiencing health or developmental concerns that might be linked to this exposure

📝 How to Get a Referral

To access FEMS, a referral must be made by a GP or another healthcare professional. The referral should include:

The type and dosage of medication taken during pregnancy
Details of any health or developmental concerns

Referrals can be sent to:

📧 Fem.Service@mft.nhs.uk

Please note, referrals are accepted until the service reaches capacity or December 2025, whichever is sooner. If multiple children from one family have been exposed, they can be referred together, but each person needs a separate referral form.

🏥 What Happens After a Referral?

If FEMS can help, you’ll be invited to one or more appointments. These may include assessments and tests to understand if any physical, learning, or social difficulties are related to the medication exposure.

The FEMS team includes:

Clinical geneticists
Neuropsychologists
Physiotherapists
Occupational therapists
Speech and language therapists
Care advisors
Clinic coordinators

Together, they’ll create a detailed plan to support health, daily life, and education needs.

📚 Research Opportunities

As part of the pilot, FEMS is involved in research to better understand the effects of medication exposure during pregnancy. You may be invited to participate, but it’s entirely voluntary, and choosing not to participate won’t affect your care.

📞 Contact Information

For more details or to discuss a potential referral:

📧 Fem.Service@mft.nhs.uk

📞 0161 701 4514mft.nhs.uk

Copyright Emma Murphy, Janet Williams – Independent Fetal Anti Convulsant Trust

All materials written and designed by E Murphy & J Williams