Epilepsy passport will ‘help doctors see the bigger picture’
A new report raises the concern that while day-to-day paediatric epilepsy care in the UK is sound, doctors are at risk of “losing sight of the bigger picture”.
Accordingly, the Royal College of Paediatrics and Child Health (RCPCH) – which published the report yesterday (September 23rd) – has recommended that parents keep an ‘epilepsy passport’ on behalf of their children.
This document would identify the clinician responsible for coordinating the child’s overall care, the therapies they are receiving and the emergency care required if a seizure occurs.
Researchers believe the passports would improve communication between medical professionals and the families of patients, helping to minimise the number of children with epilepsy who die needlessly.
The report was commissioned by Healthcare Quality Improvement Partnership and studied data from a total of 162 patients, 61 of whom experienced epilepsy-related mortality or morbidity.
It found that more than 85 per cent of children with epilepsy in the UK who have been either admitted to intensive care, or have died as a result of their conditions, had associated developmental impairments too – meaning they were regularly receiving care from more than one medical professional.
In fact, nearly half (44 per cent) had at least three individuals involved in their on-going care, among them paediatricians, health visitors, geneticists, neurosurgeons and school nurses. The RCPCH claims communication between these parties is lacking.
Hilary Cass, president of the college, commented: “This latest research found that in nearly a quarter of cases studied where children with epilepsies died, the reviewers identified things that could be done to reduce the likelihood of future deaths.”
She cited clear emergency care plans, and more effective communication between professionals and parents, as some of the “achievable interventions” that the proposed epilepsy passport would make simpler to implement.
Dr Peter Sidebotham, a consultant paediatrician and clinical lead on the project, said it was crucial that children receive “joined-up and well-planned care”.
“Seeing this bigger picture has huge benefits for the quality of life of the child, peace of mind for parents and ultimately the day-to-day management of epilepsy,” he commented.