About this work

We have been asked by the Area Drug and Therapeutics Committee Collaborative (ADTCC) to carry out a Gathering Views exercise by asking patients about their lived experience of taking Valproate. The ADTCC are part of Scottish Government. They give professional and clinical advice and leadership to NHS boards and consider national and local guidance, which supports the safe, effective, and patient-centred use of medicines.  

Valproate is a medication used to treat epilepsy, bipolar disorder, migraine and other off label conditions. While it can be a highly effective treatment, it poses a significant risk to babies born to women taking it during pregnancy, and there is evidence that there may also be risk associated with men taking Valproate when getting someone pregnant. In March 2018, the Medicines and Healthcare products Regulatory Agency (MHRA) strengthened its regulatory position, prohibiting its use in pregnant women, girls, and persons of childbearing potential unless a risk acknowledgement form is in place and they are enrolled in a pregnancy prevention programme. All Scottish Health Boards are putting an action plan in place in response to a National Patient Safety Alert issued by the MHRA (Medicines and Healthcare Products Regulatory Agency) in November 2023, which called on organisations to adopt new regulatory measures for Valproate, Valproic Acid, and Valproate Semisodium. The alert can be found here NatPSA/2023/013/MHRA  

Patient views and lived experience will inform NHS Boards' plans for the safe use of Valproate, and help to consider any specific needs relating to diversity and health inequalities. This will ensure the person-centred, safe, and effective implementation of new measures, including for marginalised groups most at risk from inappropriate prescribing of Valproate.   

Who can take part  

We are looking to talk to you if you are: 

• currently taking Valproate or have stopped taking Valproate since August 2023. Examples of medicines that include Valproate are Belvo, Convulex, Depakote, Dyzantil, Epilim, Epilim Chrono or Chronosphere, Episenta, Epival, and Syonell. If you are in doubt whether a medication contains Valproate, you can search for it here: Home - electronic medicines compendium (emc). 

• a woman or man able to become pregnant or get someone pregnant if not on contraception 
• between 12 - 55 years old or 
• a carer of people with the above characteristics. 

How can you take part 

If you want to participate in this work or have any questions, please get in touch with us via email at his.engagementevidence@nhs.scot  

We will then get back in touch with you to arrange an interview.  Engagement for this piece of work will be taking place from November 2024 until June 2025, and the report is anticipated to be published in August 2025, though this is subject to change.