Sodium Valproate “Epilim” Campaign Update
We and our colleagues in Epilepsy Ireland are pleased to inform our members and supporters that there have been two positive developments recently regarding our ongoing joint campaign surrounding Sodium Valproate (Epilim). Which are the Nurses and the Sodium Valproate Stakeholder Group.
Sodium Valproate (Epilim) is a common epilepsy drug which was licensed in Ireland in 1975. However, since the 1960s, evidence was emerging that the drug could have a severe impact on the unborn child if prescribed in pregnancy. Despite this, it was not until 2014 and again in 2018 that significant measures were taken to warn women of childbearing age about the potential impacts of this drug. In the years since it was first licensed in Ireland, many women continued to be prescribed Sodium Valproate with no warnings. For this reason, Minister for Health, Deputy Stephen Donnelly announced in Nov 2020 that an inquiry would be established into the historical licensing and prescribing of Sodium Valproate. This was a very welcome development by both OACS Ireland and Epilepsy Ireland. However, there has been little progress made since then on establishing the inquiry. Families affected by this drug have waited long enough for answers on why this was allowed to happen to them, and the promised inquiry needs to be urgently established.
The Disability Pathway:
That Disability Pathway and services that needs to be put in place to support families who have been affected by the medication. OACS Ireland still wait for a full disability pathway to encompass the needs for children harmed by Sodium Valproate (Epilim) right now all families have is a one-page document called the community pathway which is clearly not working. Many of our members are still not receiving the services from the HSE that their children so badly need. OACS Ireland has requested a meeting with the HSE to discuss said pathway. Four years on families are calling on the Minister for Health to now put in place a full disability pathway.
Regarding the establishment of the historical inquiry on the licensing and prescribing of Sodium Valproate, OACS Ireland last month communicated our acceptance of the Terms of Reference proposed by the Department of Health for the establishment and running of the inquiry. From our most recent meeting with Department officials, we understand that the Department intends to bring proposals for the inquiry to Cabinet before Christmas. We look forward to a decision being taken In the coming weeks and to making a further statement then.
In 2018, it was recommended that 6 additional Epilepsy Nurse Specialists be recruited to provide further capacity to epilepsy services to help aid the implementation of the programme. However, only two nursing posts were filled and the recruitment of 4 additional nurses was a key aspect of our campaign on this matter. A 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 3 outstanding nurses through the Women’s Health Taskforce. While this is welcome, it is critical that this recruitment process begins without delay to have this additional capacity added to epilepsy services as soon as possible – which will be crucial to ensuring women on the medication are fully informed of the risks. We will be seeking regular updates from the Department on this process.
Sodium Valproate Stakeholder Group:
In a further positive development, both OACS Ireland and Epilepsy Ireland recently attended the inaugural meeting of the Sodium Valproate Stakeholder Group. This forum is something we have been seeking to be established for many years. Despite positive efforts in recent years to increase the knowledge of risks of the use of Sodium Valproate 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, OACS Ireland and Epilepsy 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 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, 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 their voice to help support our calls on these matters 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.
If you feel your child/children are impacted by sodium Valproate (Epilim) we urge you to contact OACS Ireland email address: email@example.com or contact us via the OACS Ireland mobile number 089 219 6011 and/or our colleagues in Epilepsy Ireland.
“It is important to note that you should NOT STOP taking your medication without seeking medical advice”