Epilepsy Passport evaluation (2018)

Two years after its launch, we carried out an evaluation to understand how healthcare professionals, children and young people and their families use the Epilepsy Passport. This tells us which aspects of the Passport have been successful and which need improvement.

In 2015, we developed the Epilepsy Passport to facilitate communication between children, families and clinical professionals. It is a paper record containing relevant and up-to-date clinical information about a child or young person’s epilepsy. It is designed to be used primarily when families access emergency healthcare, to enable clear communication and avoid unnecessary delays. It may also be used in other circumstances such as sharing information with schools, residential or respite care services.

The evaluation was carried out from July 2017 to March 2018 using two methods.

Orders of the Passport

Over 10,000 Epilepsy Passports wallets have been ordered since its launch - from about 300 healthcare professionals and 150 from families. Nine orders came in from outside the UK.


We developed two surveys: one for children, young people (CYP) and families; and one for healthcare professionals. 

The responses and comments highlighted that there was confusion, and a lack of understanding of how the Passport can be used. Some suggested improvements that are already available, such as a version available to download and save on a computer. 

There was also agreement among healthcare professionals, CYP and families that the concept of the Passport would help to improve care. However, there were also comments that highlighted it was not user friendly in its current format, and this in turn is limiting its use. For example, some respondents would prefer a version that could easily be updated on their PC or laptop.

You can download the full evaluation report, including recommendations for improvements, below.