Questions and answers about the fetal exposure to medicines service (FEMS)

Q. What is the fetal exposure to medicines service (FEMS)?

FEMS is a pilot clinical service to provide expert assessment, diagnosis and advice for children and adults who have problems following exposure to certain antiseizure medicines (also known as anticonvulsants) before birth.

The pilot currently covers the North of England only – which equates to NHS England’s North East and Yorkshire region (incorporating the North East, north Cumbria, Yorkshire and the Humber).

The service will initially invite referrals for individuals exposed to sodium valproate or topiramate, and over time open to referrals based on the additional medications listed below.

Q. How long does each appointment take?

The first appointment will take around one hour.  Further appointments could take up to three hours because they involve meeting with more people or more detailed testing.

Q. Why are there so many different specialists involved?

Diagnosis is not straight-forward, and some symptoms are shared by different health conditions. Each specialist has different expert knowledge, so together they can work out if fetal exposure is likely to explain all or some of your symptoms.

Q. Will there be a blood test?

If a blood test is needed, we will discuss this with you first and explain why it is important. For example, genetic testing is often part of a fetal exposure assessment.  We would always explain and agree this with you.  Wherever possible, we will use previous test results.

Q. Are x-rays or scans going to be done?

X-rays and scans are not needed for everyone.  If they are needed to provide more information about the right treatment or to make a diagnosis, we would explain, and they would only be done if you agree.

Q. Are travel costs covered?

Travel costs are not covered. If you are receiving income support or family credit you can get help with the cost of travelling to and from your appointments. People on a low income may also be entitled to help. Visit healthcare travel costs scheme (HTCS) to find out more.

Q. Will FEMS help with any future legal action?

No. FEMS is an NHS service for health care and would not share your information with any legal teams. We will provide you and your care team with a summary of your assessment with us. It is your personal choice whether to share this information with others.

Q. How do people access the service?  

Referrals into the service will generally be via a GP or another clinician (doctor, nurse or therapist) involved with the patient.  In some cases, it may be appropriate for a person to contact the service direct for an initial discussion about suitability for referral. Please email [email protected]

Q. Can people be referred to FEMS if they do not live in North England?

FEMS is a new pilot service, currently with limited availability.  The pilot is initially running in the North of England because the national experts are in Manchester and Newcastle. The pilot will be used by NHS England to inform how service options for the future.  

Q.  What happens if the pilot service ends before the assessment results are ready?

Anyone seen as part of the pilot, will be contacted by a member of the team to discuss their results and care, even if the pilot has officially ended.

Q. What will happen at the end of the pilot?

NHS England and the pilot programme team will review the findings of the pilot evaluation to inform service options for the future.  

Q. Foetal or Fetal?

In this booklet, we use the spelling ‘fetal’ to match with wider healthcare systems.  You might also see it spelled ‘foetal’ at other times, which is the British spelling.

Q What medicines are an anti-seizure medicine?

The pilot covers a list of all medicines used for treating seizures, which has been agreed by experts.  If new medicines become available, these will be added to the list. The service will initially invite referrals for individuals exposed to sodium valproate or topiramate, and over time open to referrals based on the additional medications listed below.

To be referred to the FEMS clinic a person must have been exposed to one or more of the medicines below and have health problems that might be linked to the exposure.

It is important to be aware that not all anti-seizure medicines are thought to cause problems for the baby when taken during pregnancy. Information about the individual medicines below can be found in the product leaflet in the packet. Information specific to using some of the medicines during pregnancy is at Bumps – Best use of medicines in pregnancy