On the fourth day of #EpilepsyWeek, we focus on the families who have been impacted by Sodium Valproate (Epilim). As a result of being exposed to Valproate in utero, families are caring for children with a range of disabilities – many of whom are now adults and whose care needs are complex & ever evolving.
Throughout our campaign, we have fought for these families to have a pathway of supports to help assist them with the care of their loved ones. In 2018, this reached its fruition with the agreement of a Community Operations Package. Families with a diagnosis of FACS would be able to access a number of supports as a result of their diagnosis which would assist both the person and the wider family unit with the care needs.
To receive a commitment to these supports was very welcome but like many aspects of our ongoing campaign, the necessary resources have yet to be put in place. Families with a diagnosis of FACS / FVSD have not been able to access the agreed services.
This needs to change and the Community Operations Programme must be implemented.
Families need these vital supports to assist them with the needs of their children and we will continue fighting for families until the necessary supports are put in place.