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Pioneering 'epilepsy passport' to cut child admissions

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An innovative tool has been launched today to help improve communication between health professionals and children with epilepsy, with the aim of keeping them out of hospital.

The Royal College of Paediatrics and Child Health has developed an “epilepsy passport” that aims to improve the sharing of information between young patients and their healthcare professionals.

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

Richard Appleton

The passport, which is hoped one day to be a recognised symbol of epilepsy care, is designed to be carried by a child 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 recognised frustration for many parents.

The idea has been backed by the Royal College of Nursing.

Fiona Smith, professional lead for children and young people’s nursing at the RCN, said the new passport was a “simple yet innovative solution to a very common problem”.

Royal College of Nursing

Fiona Smith

“Specialist children’s epilepsy nurses play a significant role in caring for children and young people with epilepsy, tirelessly supporting them and their families, and they will be very encouraged by this potentially life-saving development,” she said.

“This is an exciting step forward in children’s care that could make a huge difference in the day-to-day lives of young patients and their families,” she added.

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 names of the clinicians leading their care and the child’s emergency care plan.

“This is an exciting step forward in children’s care that could make a huge difference in the day-to-day lives of young patients and their families”

Fiona Smith

Dr Richard Appleton, the paediatric college’s clinical lead on 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.

He noted that around 5-10% of emergency 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,” he said.

“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,” said Dr Appleton.

He added: “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.”

The college hopes the initiative will subsequently be rolled out and used in adult epilepsy services across the UK.

Dr Appleton said: “I would encourage and urge health professionals to work with families to complete their child’s passport and begin transforming epilepsy care.”

The passport idea was one of the key recommendations in the college’s Child Health Review UK report on epilepsy, published in 2013.

The idea has so far been piloted by four hospital sites since May 2015 – Nottingham University Hospital, Alder Hey Children’s Hospital, Lewisham Hospital and Whittington Hospital.

It was funded by the Healthcare Quality Improvement Partnership – a consortium that includes the medical royal colleges and also the RCN.

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