Epilepsy is a condition that affects about 60,000 young people under the age of 18 which means that most health, education and care professionals will work with a child who has epilepsy at some point in their career. Epilepsy is a complex range of conditions with many possible underlying causes. It is also widely misunderstood. Families often have a long and difficult path to get the correct diagnosis and appropriate treatment for their child. This often takes months and even years.
It is very important for those professionals working with children with epilepsy and their families to understand the condition so that they can give the most appropriate support. Young Epilepsy provides training to all professionals about epilepsy and associated issues. We hold a series of training events around the country and are able to provide tailor made packages for individual organisations.
Young Epilepsy has a wide range of resources for both professionals and families to help them learn about, and manage, the condition. These include downloadable record sheets such as individual healthcare plans and emergency treatment records.
Our handbooks were developed for professionals to use with parents to help them understand epilepsy. The handbooks provide families with information and sources of support.
For children and teenagers lively, informative seizure diaries can be provided which encourage effective communication between families and professionals. They also enable young people to take increasing responsibility for living with, and managing their own condition.
It is important for professionals to understand the many issues facing the family such as diagnosis, treatment, emotional impact and living with epilepsy. For the families whose child has complex epilepsy there will be many other issues to deal with. Certain co-morbidities quite commonly occur and families may need help managing behaviour, language and communication and other multisensory impairments.
Teenagers also have a wide set of concerns facing them and professionals are in a good position to help them learn how to live with, and manage their condition. This is particularly important during the transitions facing teenagers (e.g. paediatric to adult healthcare services and primary to secondary education). As young adults this group will then face the challenges of leaving home, going to college and starting work. The professional has an important role in supporting them through these various challenges.