Designed as a paper record of relevant and up-to-date clinical information to be carried by children and young people or their parents and carers living with epilepsy.
The 2013 Child Health Review into Epilepsy highlighted the importance of clear and comprehensive care plans for parents, schools and others caring for children and young people with epilepsy; providing them with information on how to respond to prolonged seizures. This finding supports the recommendations on emergency care plans as set out in the NICE and SIGN guidelines.
A key recommendation from the Review was for clinical teams looking after children and young people with epilepsy to consider introducing an ‘epilepsy passport’ as a means of improving communication and clarity around ongoing management.
The main aim of the Epilepsy Passport is to serve as a means of improving communication between and within clinical teams that care for children and young people with epilepsy. Importantly, it also serves to improve clarity around ongoing management for children, young people and parents.
The Epilepsy Passport is designed as a paper record of relevant and up-to-date clinical information to be carried by children and young people or their parents and carers. It is available to download as a pdf from the RCPCH website. It is expected that the form will be filled in at epilepsy clinic appointments by paediatricians and specialist epilepsy nurses. It will then be given to children and young people with epilepsy and their parents/carers.
The Epilepsy Passport was launched on 18th September 2015. It was trialled from April to July 2015 with a number of paediatric neurologists, epilepsy specialist nurses, A&E consultants, parents and young people. An evaluation of the impact of the tool in a clinical setting will be carried out at 6 months and 12 months after the launch.
Suggestions for Further Implementation
There is interest in developing this tool in adults. There are also discussions about developing a similar tool in other long term medical conditions.
Challenges and Learning
Patient buy-in has been a very important part of developing the Epilepsy Passport. Feedback from children and young people as well as their parents and carers played a significant role in the design and launch. Also, having a project board with experience in working with the stakeholders at different levels has been key to the success of the project.
The tool is endorsed by the RCPCH.
Project Lead: Dr Richard Appleton, Consultant Paediatric Neurologist
Organisation: Royal College of Paediatrics and Child Health
Published: May 2019