In a welcome development for campaigners in the UK, a new report from the Patient Safety Commissioner has recommended that a redress scheme be set up quickly to help support families who have been impacted by Sodium Valproate.
Sodium Valproate is an anti-seizure medication which if prescribed during pregnancy can lead to the development of congenital malformations in 10% of cases, and neurodevelopmental delays in 30 – 40% of cases where children have exposed to the medication in-utero.
In the UK, an inquiry into the historical licensing and prescribing of the medication has already taken place which made a recommendation of redress for patients impacted. This new report, written by the UK’s Patient Safety Commissioner, Dr. Henrieta Hughes, outlines what an appropriate redress scheme should look like.
In the foreword to her report, Dr. Hughes states:
The past cannot be changed. But the provision of redress gives the government an opportunity to demonstrate that the concerns of these patients have been heard, listened to and that their needs are being prioritised.
While it remains to be seen how the UK Government will act in response to this report, the reiteration of the need for a redress scheme for the thousands of patients impacted in the UK is an important step to families receiving the support they need to help care for their loved ones who are living with a range of disabilities. We would like to congratulate the patient groups in the UK who have campaigned hard for many years and hope that the recommendations will be acted upon quickly.
In Ireland, we still await the appointment of a Chair of the non-statutory inquiry into the historical licensing and prescribing of Sodium Valproate approved by Government in 2023.
Epilepsy Ireland has worked closely with our colleagues in OACS Ireland to secure approval for the Irish inquiry for several years. While a number of outstanding matters remaining to fully establish the inquiry – including a data protection framework and the provision of supports for families to take part in the inquiry effectively - it is vital that decisions on these specific matters, above all else, meet the needs of those most directly affected. Ultimately, those needs are best represented by the families themselves, and in recent months, OACS Ireland have been leading on agreeing these final steps with the Department of Health.
We hope that the Irish inquiry will be established as soon as possible so families impacted in Ireland can get the answers they so richly deserve about why this happened to them, and that recommendations like those being seen in the UK will ultimately be repeated in Ireland.
To read the new report from the UK, visit the Patient Safety Commissioners website. You can also learn more about the history of this issue and our work alongside OACS Ireland on this matter by visiting the 'Advocacy' section of our website.