Anti-seizure medicines, also known as anti-convulsants or anti-epileptic drugs, are used by people who have epilepsy and other disorders to manage symptoms.
Some medicines, when taken by pregnant women, can cause problems in babies’ development. This can show at birth, or later, and lead to difficulties throughout life.
The fetal exposure to medicines service (FEMS) provides expert assessment, advice and care plans for people who are thought to have been affected by exposure to certain anti-convulsant medicines in the womb.
Who can use the service?
Children or adults who live in the north of England, who have problems that could be from exposure to an anti-seizure medicine in the womb, can be referred by their doctor. A full list of included medicines is at the bottom of this page.
They will meet the following criteria:
- exposed to one or more of the listed medicines during pregnancy, and
- have health or development concerns that may be linked to this exposure
After this first referral, we will let you know if you can be seen in the FEMS clinic, or why we do not think an appointment will be helpful for you.
What happens next?
If we think we can help, you’ll be invited to one or more appointments to see how you are and, if needed, we will offer assessments and tests to see if any physical, learning, cognitive or social difficulties you have could be linked with medicines taken before you were born.
We will use this information, plus the knowledge and skills in the team, to produce a detailed plan about the support that we would recommend for you – this could be for health care, daily life and/or help at school/college.
If you need to bring anything, we will let you know in your appointment letter. This could include:
- Information or letters from other hospital appointments or assessments.
- Child healthcare record (sometimes referred to as a red or yellow book).
- Photos of you as a baby.
Who will be at the appointments?
The FEMS team includes different kinds of therapists, doctors and nurses, who all have knowledge and expertise to help. You might only need to see some of the team.
We’ve included more information about ‘who’s who’ later in this leaflet.
What happens at the end of the appointments?
We will write a detailed plan about how health services, education services (for example: nurseries, schools and colleges) and employers can provide the help and support you need. Those teams will also be able to get in touch with us at any time if they want more information or advice.
You might need to see some different experts, outside of the FEMS team, to help with certain health needs. We can refer you for those appointments if they are needed.
Information sharing
To make sure we have the right information to help you properly, we might need to speak with other people working in the NHS, school or other services. If we need to share any information, we will always ask you.
Who’s in the team
Clinical geneticists
A specialist doctor who helps to diagnose and provide health advice for patients and families affected by genetic conditions. They are also trained to look for particular features that may suggest a non-genetic diagnosis, such as a Fetal Exposure Syndrome. They may ask about your family history and suggest a test for genetic conditions. If the doctor thinks you need a genetic test, this would usually involve taking a sample of your blood. You would be given more information about when to expect the results, depending on the tests to be done. The geneticist would also decide whether it would be helpful for you to be referred to other specialists for specific treatments or tests.
Neuropsychologist
Looks at how the brain works, including attention, memory, how things are perceived, language and problem-solving, through using various activities and questions. Will also talk about mental health and social skills, to provide recommendations for support.
Physiotherapist
Helps people to manage pain, balance and movement through providing information, advice, ‘hands-on’ therapy and exercise.
Occupational therapist
Works with people to look at daily activities that may be difficult, to see if there’s another way to do them. This could involve using special equipment.
Speech and language therapist
Provides assessment of speech and language functioning and of social and interaction skills.
Care advisor
The care advisor will talk to you, to make sure everyone’s needs are being met. They will also follow up after your last appointment to help you find local care based on the plan provided.
Research
We are still learning about the problems that anti-seizure medicines and some other medicines can cause during pregnancy and work is taking place to look at this more closely. Therefore, you might be asked to participate in a research study. If you wanted to take part in any research, you would be able to ask as many questions as you needed before deciding and your NHS care will not be different if you choose not to take part.
Anti-seizure medicines included in the pilot
Specialists and NHS England decide which medicine exposures are included in this service. These exposures are known to carry a higher risk of affecting a baby’s development during pregnancy. At present, the service focuses on certain anti-seizure medicine exposures where there is clear evidence of possible physical or developmental effects on a child. The list of these medicines is regularly reviewed and updated as new information becomes available.
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
Anti-seisure medicines currently included:
- Carbamazepine
- Phenobarbital
- Primidone
- Topiramate*
- Valproate*
How do people access the service?
Referrals into the service must meet the eligibility criteria and will normally be via a GP or another clinician such as a doctor, nurse or therapist involved with the patient. The health care professional must complete this referral proforma and send to the email address below.
Email: [email protected]
Telephone: 0191 241 8658
