Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what practical steps he is taking to ensure that the experiences and interests of children with fetal valproate syndrome and their families are represented as an integral part of patient involvement at every level of the NHS in England.

NHS England and NHS Improvement have commissioned the Paediatric Neurosciences Clinical Reference Group to develop care pathways and a service specification to improve for patient support and co-ordination for children affected by teratogen exposure. A multi-disciplinary group including patient representatives and expert clinicians with experience in responding to and managing teratogen exposure has been established. The group will report its recommendations to NHS England and NHS Improvement in March 2022.

The Royal College of Obstetricians and Gynaecology’s guidance recommends that all women with epilepsy of childbearing age are counselled on the risk of sodium valproate. In the first instance, this will take place with the woman’s neurologist and general practitioner. The Royal College recommends that such counselling is provided by a clinician competent in the management of epilepsy, usually a neurologist and or an obstetrician with a special interest in epilepsy. Midwives may take a supporting role, unless they specifically work in this context and have obtained additional training.