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Pioneering Epilepsy Passport launches in bid to transform children’s epilepsy care

Innovative tool developed by Royal College of Paediatrics and Child Health set to improve communication between professionals and keep children and young people out of hospital

With lack of communication being one of the major factors leading to poor epilepsy care and management, child health experts have today launched a pioneering ‘Epilepsy Passport’ which aims to improve the sharing of information between young patients and their healthcare professionals. 

The Epilepsy Passport, which is hoped one day to be a recognised symbol of epilepsy care, is designed to be carried by a child with epilepsy to provide healthcare professionals with easily accessible and up-to-date information on their condition in the event of an emergency. In addition, it will mean that parents do not need to repeat their child’s epilepsy history at each medical visit – a major frustration for parents. 

Developed by the Royal College of Paediatrics and Child Health (RCPCH), the information contained within the passport includes:
•    information on the type of seizures and epilepsy the child has
•    the medications they are receiving
•    what their ‘rescue medication’ is and which medications should be avoided 
•    the clinicians leading their care
•    the child’s emergency care plan

Dr Richard Appleton of the Royal College of Paediatrics and Child Health and Clinical Lead for the project, said: 

“Poor communication has been one of the most important and longest standing issues linked to poor epilepsy care and it may contribute to poor seizure control and hospital admissions. Approximately 5-10% of A+E and outpatient paediatric attendances per year will be seizure-related. 

“Our Epilepsy Passport is a simple idea which will help bridge the gap between patients and medical, as well as other professionals. When a child passes their Epilepsy Passport to a clinician, it allows an immediate understanding of their epilepsy and its treatment as well as their health background without the need for the child or parent to give this information themselves.  We hope that with widespread use of the Epilepsy Passport, we will help to reduce the 5-10% of unnecessary hospital attendances related to epilepsy.”

Funded by the Healthcare Quality Improvement Partnership (HQIP), it is hoped that the Epilepsy Passport will subsequently also be rolled out and used in adult epilepsy services across the UK.

Dr Richard Appleton continues: 

“With approximately 60,000 children suffering from Epilepsy in the UK today and with epilepsy related-deaths one of the top ten causes of death in the UK, this passport also has the potential to be lifesaving.

“I would encourage and urge health professionals to work with families to complete their child’s Passport and begin transforming epilepsy care.” 

John & Lisa Thurston, parents of Owen, a 16 year old with epilepsy who is speaking at the official launch of the Epilepsy Passport* said:

“An epilepsy passport containing specific details of a young person's condition and treatment will be a valuable addition to our overall care plan. 

“For us, and for all parents, it will bring peace of mind knowing that whoever is caring for our son - be it family, friends or the school - will have access to all the information healthcare professionals would need in an emergency situation.”

“This product would have saved us hours of updating the 8 page A4 document we produced to serve a similar need!”

Samantha Ashby, Policy and Development Officer SUDEP Action commented:

"The new Epilepsy Passport is a great physical tool for children and young people with epilepsy to carry which enables them to more easily engage with various health professionals about their epilepsy, management and treatment to encourage more standardised care. It would be great to see the Epilepsy Passport routinely used for coordinating paediatric epilepsy care to not only give children and their parents’ piece of mind in case of emergency, but also as a step closer towards consistent communication between patient and professionals about their specific epilepsy needs."

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