New leaflets to help parents of children with epilepsy to minimise risk
SUDEP Action is delighted to share two new risk leaflets to support parents of children with epilepsy in understanding and reducing risks. The charity has seen a huge demand from parents, carers and paediatric clinicians, asking for information and tools to support them in managing and discussing risk.
Much of the charity’s work to date has focused on adults – so this is the exciting next step, to bring vital risk information, resources and tools to children and young adults, living with epilepsy, as well as to the parents, carers, and clinicians who support them.
1 in every 200 children live with epilepsy. But each year, 40-80 children with epilepsy die unexpectedly (1 in every 4,500 children in the UK). The number of children who die due to SUDEP is lower than in adults, but the risks are not something that should be ignored, as we know there are positive actions paediatric clinicians, families and young people can take to minimise epilepsy risks.
Working with Dr. Colin Dunkley (Consultant Paediatrician) and the Childhood Epilepsy Workstream in Trent (CEWT) network, which Dr. Dunkley leads, two leaflets have been created.
One discussing epilepsy risks in general, which focuses on learning about risks to help the family and young person build healthy habits in managing epilepsy. The second gives vital information about SUDEP and how to take action to reduce risks linked to it. The leaflets go as a pair, to give families tips and advice they can refer to in-between appointments with their clinician.
“All children with epilepsy, and their families, should have ongoing discussions with their clinicians regarding risk and how to fully and safely take part in life. Until now, there has been a lack of comprehensive and up to date leaflets to specifically support this.” Dr. Colin Dunkley, Consultant Paediatrician; Sherwood Forest Hospitals NHS Foundation Trust, & Epilepsy12 Clinical Lead.
As part of the review process, clinicians, parents of children with epilepsy and some of our bereaved supporters, were invited to give feedback.
“The leaflets look absolutely fantastic! They’re excellent, including everything I say to my newly diagnosed families. A brilliant tool to give out and parents can digest all the information at their leisure.”
Kirsten McHale – Clinical Nurse Specialist for Pediatric Epilepsy and Neurodisability; Surrey & Sussex Healthcare NHS Trust.
You can see and download the new leaflets here: https://sudep.org/leaflets-and-downloadable-information
Copies will be available to order from the SUDEP Action office soon.
If you would like to receive some either as a clinician, or a supporter who wishes to help us raise awareness of these new leaflets, do get in contact: [email protected].