A new report commissioned by our colleagues in Children In Hospital Ireland (CIHI) has highlighted the additional costs families face when they have a sick child or a child with a long term health condition.
The report is the culmination of research carried out by Children In Hospital Ireland to establish the hidden costs many families face when it comes to the care needs of their child.
Epilepsy Ireland shared the survey that CIHI issued as part of their research and the experience of many parents or carers of a child with epilepsy would've contributed to the final report.
A key finding from the report has stated that parents can face costs of up to €150 per day when their child needs hospital care. Hospital visits can be frequent for some children with epilepsy when the condition is difficult to control - either due to prolonged seizures or injuries associated with seizures - or when the child is living with a severe form of refractory epilepsy such as Lennox Gastaut Syndrome or Dravet Syndrome.
The report makes a number of recommendations which aim to ease the financial burden experienced by parents - many of whom are already in difficult circumstances due to the care needs of their child.
You can read the report in full by visiting the Children in Hospital Ireland's website. We would like to commend our colleagues in CIHI for highlighting this most important issue. We would also like to thank all families of children with epilepsy who contributed to the findings of the report and we hope that the report will encourage action on this most important matter.