First seizures are a complex area in which to provide useful health information. There are many different diagnoses to consider and often there is much concern and uncertainty. It is easy to provide insufficient or confusing information, and it is also easy to miss opportunities to provide key safety advice, details regarding local pathways or signposting information.
I don't think you ever get used to seeing a child having an epileptic seizure. Whether it is subtle or dramatic, there is something about a seizure that is always distressing. What makes it even more difficult is when it is your child, you are not completely sure what it was, why it happened and when and whether it will happen again. It is easy for families and professionals to give vague, incomplete information, to over-react or under-react.
In 2019 a multi-professional working group led the development of a safety-netting information leaflet for parents or carers of children and young people who have had a first seizure that was not considered to be a ‘febrile convulsion’.
Led by Dr Colin Dunkley (RCPCH Epilepsy12 audit clinical lead / Consultant Paediatrician), the working group comprised representation from several Royal Colleges and Associations, including:
- Jayne Wheway - Patient Safety Expert Advisor for Children and Young People and Patient Safety Concerns (NHS Improvement)
- Dr Rachel Rowlands - Paediatric Emergency Consultant
- Dr Maria Moran - Consultant Paediatrician
- Dr Katerina Vraka - Paediatric Registrar
- Rachael Wheway - Children’s Epilepsy Nurse Specialist
- Dr Carole Buckley - General practitioner (retired) / Royal College of General Practitioners representative
- Dr Paul Wright - Consultant Developmental Paediatrician / British Association for Community Child Health representative
- Dr Michelle Jacobs - Consultant in Emergency/Paediatric Emergency Medicine / Royal College of Emergency Medicine representative
- Sara Haveron - RCPCH Quality Improvement Team
The information leaflet is intended for UK use as is or for adaption locally to all involved in the regulation or practice of the care of children and young people who have had a first seizure.
A child and young person friendly information leaflet will be available shortly. The information leaflet is intended for UK use as is or for adaption locally to all involved in the regulation or practice of the care of children and young people who have had a first seizure.
About the parent and carer information leaflet
Designed with emergency departments, general practice and initial paediatric services in mind, this leaflet is for parents and carers of children and young people after they have been initially assessed after a first afebrile seizure. In some circumstances it may be suitable for older child over 6 years with a seizure and fever.
It is designed to be appropriate whether the seizures are single or recurrent, epileptic, non-epileptic or uncertain and whether associated with other problems and provides information in the gap between initial assessment and first specialist paediatric assessment. It is for parents and carers to have correct early information around what to do following a first seizure, until the first assessment with a specialist, as well as to ensure initial patient journeys are appropriately described and improved.
As well as describing the first aid steps for helping a child who has had/is having a convulsive seizure, the leaflet covers key questions a parent or carer may have, such as: ‘Do I need to do anything differently after this first seizure?’, ‘What will happen next?’, ‘What can I do in the meantime?’ and ‘Where can I find other information?’.
There is also a tear-off ‘Information Provision Checklist for Healthcare Providers’ at the back for the healthcare provider to print/save and retain in patient records.
The leaflet is endorsed by the British Association for Community Child Health, British Paediatric Neurology Association, Royal College of General Practitioners, Royal College of Emergency Medicine, Epilepsy Action and Young Epilepsy.
About the children and young people information leaflet
Currently in development, an accompanying information leaflet will be aimed at children and young people who have had a first seizure.
The leaflet will be designed and developed with the Epilepsy12 Youth Advocates to ensure it reaches out to the correct audience.
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