Young Epilepsy is a national charity for children and young people aged 5 to 25 with epilepsy and other neurological conditions.
Epilepsy can magnify some of the problems associated with adolescence and can affect an adolescent’s independence, self-esteem and sense of identity.
Adolescents with epilepsy are often caught between paediatric and adult medical disciplines, with neither service specifically addressing their needs.
Young people and their families and have informed Young Epilepsy that they face a ‘cliff edge’ where services fall away when the young person reaches the age of 16 or leaves school.
Young Epilepsy is working towards the development of a model for transition clinics that can be adopted on a nationwide basis. DJS Research Ltd was commissioned to seek the views of stakeholders to inform the development of the model.
• Initial period of desk research to identify clinics already operating in the UK and to establish services available at these clinics.
• Twelve depth interviews with a variety of professionals and stakeholders i.e. Paediatricians, Epilepsy Specialists, Community Nurses and Neuro-Disability Consultants.
• Ten audit interviews with pre-existing clinics.
• Quantitative research utilising an online survey methodology – completed by 115 stakeholders and an additional 112 who suffered from epilepsy.
The report identified the main issues faced by young people suffering from epilepsy and their families, issues related to making the move from paediatric care to adult care, and several of the key stresses of adolescence for those suffering from epilepsy. The vast majority of respondents (90%) felt there was a definite need for the clinics, and all respondents felt they would be beneficial. The main benefits identified included helping adolescents to take charge of medication, providing a visible link between paediatric and adult care and providing information. The research also provided Young Epilepsy with several points of best practice and numerous individual case studies.
"Having never used a market research company before we have been really pleased with the way that DJS have guided us through the process and worked with us to ensure that we achieved our objectives. They completed depth & audit interview along with a national survey, representing both us and our funders in an extremely professional way."
National Services Programme Manager, Young Epilepsy