Prevention, Children Young People & Families: Provider CCGs Current Position Current Position (Definition of prevention in this case is based on harm and seizure reduction) CCGs have indicated that they are aware of approaches to self-management and providing information to children young people and their families, these Services have a variety of things in place to meet the self-management include: needs of children young people and families, providing them with information and support. One trust offers Parent support groups as part of transition, although limited attendance reported. Parents are being encouraged to use mobile phones to take videos of seizures. Aware of information and leaflets but unsure of usage locally Some trusts are using videos to increase parental awareness understanding or epileptic and non-epileptic events Exploring the use of epilepsy monitoring e.g. cameras and mat. The majority of information provided is carried out face to face or using Pathway and development work to include a focus on leaflets, with some services signposting to Epilepsy Action. and information for CYP and Families Information technology is gradually being introduced with the use of Skype, Social media use is very limited; it is being developed in some CCGS email and text messages. and other sign post to apps developed by charities. One trust stated that they are training parents in emergency management of prolonged seizures. Another trust responded that training needs are met by the Epilepsy Nurse Specialist with the families in regard to rescue medication, their diagnosis and future. All information is shared with parents and families to create expert patients when it is age appropriate. Social media use is very limited only one Trust stated that they used social media. Prevention, Children Young People & Families:
Prevention, Children Young People & Families: Provider CCGs Current Position (Definition of prevention in this case is based on harm and seizure reduction) Services have a variety of things in place to meet the self-management needs of children young people and families, providing them with information and support. Parents are being encouraged to use mobile phones to take videos of seizures. Some trusts are using videos to increase parental awareness understanding or epileptic and non-epileptic events The majority of information provided is carried out face to face or using leaflets, with some services signposting to Epilepsy Action. Information technology is gradually being introduced with the use of Skype, email and text messages. One trust stated that they are training parents in emergency management of prolonged seizures. Another trust responded that training needs are met by the Epilepsy Nurse Specialist with the families in regard to rescue medication, their diagnosis and future. All information is shared with parents and families to create expert patients when it is age appropriate. Social media use is very limited only one Trust stated that they used social media. Current Position CCGs have indicated that they are aware of approaches to self-management and providing information to children young people and their families, these include: One trust offers Parent support groups as part of transition, although limited attendance reported. Aware of information and leaflets but unsure of usage locally Exploring the use of epilepsy monitoring e.g. cameras and mat. Pathway and development work to include a focus on and information for CYP and Families Social media use is very limited; it is being developed in some CCGS and other sign post to apps developed by charities. Prevention, Children Young People & Families:
Epilepsy%20Scoping%20Report%20V7%20Final.docx