We and our colleagues in OACS Ireland are pleased to inform our members and service users that there have been two positive developments recently regarding our ongoing joint campaign on Sodium Valproate (Epilim).
The first relates to the recruitment of additional epilepsy specialist nurses for the implementation of the Valproate pregnancy prevention programme (PPP). In 2018, it was recommended that 6 additional Epilepsy Nurse Specialists be recruited to provide further capacity to epilepsy services to implement the PPP. However, only two nursing posts were filled at the time and the recruitment of the remaining four posts has been a key aspect of our campaign for the past four years.
One further post was filled earlier this year and we have now been informed by the Department of Health that funding has been secured for the recruitment of the three outstanding posts through the Women’s Health Taskforce. While this is very welcome, it is now critical that recruitment begins without delay to improve patient safety and the management of epilepsy in women of childbearing potential more generally. We will be seeking regular updates from the Department and the HSE on this process.
In a further positive development, both Epilepsy Ireland and OACS Ireland recently attended the inaugural meeting of the Sodium Valproate Stakeholder Group. This forum is something we have also been calling for since 2018.
Despite positive efforts in recent years to increase the knowledge of the risks of Sodium Valproate use during pregnancy, data collected by Epilepsy Ireland and via studies conducted by the Royal College of Surgeons in Ireland showed that there was still a concerning lack of awareness of the risks and risk reduction measures amongst both patients and healthcare professionals.
Because of this, Epilepsy Ireland and OACS Ireland had continually stated that a forum needed to be established; consisting of representatives from the different pillars of the medical community, the state, and patient representatives; to assess the effectiveness of the measures that have been taken to date and establish how we can work together to strengthen them.
While the headline focus of the group is on Sodium Valproate and the measures which exist currently exist around the prescribing and dispensing of the medication, there will also be a wider scope to assess practices around all Anti-Seizure Medications .
The group will meet again in January 2023, and we look forward to working with all members of the Stakeholder Group to achieve positive progress on this most important matter.
These are two positive developments, and we would like to thank all our members and supporters for using your voice to help support our campaigning over the years. We would also like to thank the many elected representatives who have used their platforms to raise these important issues, as well as the Department of Health and Minister Donnelly for their commitment in overseeing these developments.
Regarding the establishment of the historical inquiry on the licensing and prescribing of Sodium Valproate, we expect to have further news on this by the end of the year.
Further information
- To learn more about the Sodium Valproate Pregnancy Prevention Programme, visit the 'Sodium Valproate' section of our website
- To learn more about this ongoing campaign to date, visit the 'Advocacy' section of our website
- Further information on OACS Ireland can be found by visiting the OACS Ireland website
- The studies referenced about the risk reduction measures can also be found by visiting the links on our website listed below:
- Epilepsy Ireland Survey on awareness of risk reduction measures amongst women with epilepsy
- RCSI study on awareness of risk-reduction measures amongst Healthcare Professionals