People affected by epilepsy medications while they were in the womb can now seek support from a new Fetal Exposure to Medicines Service (FEMS), available in the north of England.
FEMS is being piloted at Saint Mary’s Hospital in Manchester and Newcastle Hospitals NHS Foundation Trust. The service, funded by NHS England, will run until March 2026.
Children or adults living in the north of England who have problems that could be because of exposure to epilepsy medicines in the womb can be referred to the service by their doctor.
People will then be informed by the service whether a FEMS appointment would be of use to them.
Appointments will offer assessments and tests and offer detailed plans where needed to support people affected by medications.
Initially, people who have been exposed to the medications sodium valproate and topiramate will be eligible for a referral, but this will expand to include other medication from April.
Sodium valproate was at the centre of a health scandal, as the risks of taking this medicine in pregnancy were known but not communicated to women for decades.
In 2018, the Medicines and Healthcare products Regulatory Agency (MHRA) made the rules around the prescription of this medication much stricter, including the patient signing a risk acknowledgement form.
In June 2024, rules about prescribing topiramate became stricter too, following a review into its effects if taken during pregnancy.
From April 2025, the pilot will extend to include a much wider range of medications, including cannabidiol, carbamazepine, phenobarbital and phenytoin, as well as medications considered safer in pregnancy, such as lamotrigine and levetiracetam.
However, the FEMS services said: “It is important to be aware that not all anti-seizure medicines are thought to cause problems for the baby when taken during pregnancy.”
It urged people to check the product leaflet in their medication packet for more information.
“Still waiting for redress”
Alison Fuller, director of Health Improvement and Influencing at Epilepsy Action said: “It’s certainly a positive that additional support is being offered to people who have been harmed by exposure to certain medications in the womb. These families face massive challenges day in and day out, and need all of the help they can get to navigate the complex circumstances they’re in.
“As this project is only a pilot for a specific area of the country, we’re hoping this will be extended to the rest of the UK to give more people the chance to access this kind of support on the NHS.
“We also can’t forget that these families are still waiting for a redress scheme that could, amongst other issues, cover specialist care on a regular basis. We will continue in our work to call for its implementation until people who have been harmed get the justice they deserve.”
People may also be invited to participate in research but are not obliged to participate.
There is more information about FEMS at Saint Mary’s Hospital and Newcastle Hospitals NHS Foundation Trust.
There is more information on epilepsy and pregnancy on the Epilepsy Action website.
Pregnancy and epilepsy
Having epilepsy means there are some extra things to be aware of when you’re pregnant, including issues around seizures and pregnancy and reducing risks for you and your baby.