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:
in what is included in the pathway, improvements and efficiencies. Clear and agreed roles and responsibilities identified within the pathways. Clear definition of what is included in an integrated pathway e.g. only health? Social care? Community? CAMHs? Clear and concise information is needed around pathways and protocols for referrals in to tertiary centres. Access to psychological services/assessment needs to be reviewed and considered across providers in Y&H Commissioners to monitor and evaluate use of health plans and templates e.g. Integrated Health Care Plan, Education Health Care Plans, Epilepsy Passport. The type of plan used must be determined by the needs of the child, young person and their family and available with all agencies supporting the child, young person e.g. a section that should be added and updated. Ensure age appropriate information is available for all young people and their families Prevention, Children Young People and Families Development of Children and Young People, Parent and Carers Surveys to include: quality and implementation of health plans self-management quality of and access to information, Scope and understand national and regional best practice for self-care and management interventions and programmes. Including : Agreed definition of self-management support and interventions Continuum of self-management from minimum to maximum offer for CYP and families. Technology and voluntary sector. E.g. promote Learning from Adult based programmes Use of Social Media Need to be a more holistic in the approach to provision of care and identifying the needs of CYP with epilepsy e.g. not just a medical approach looking at wider social determinants and need. Trusts should make available emergency and first aid training for parents and professional (e.g. teachers) in contact with CYP with epilepsy e.g. consider promoting