Children with epilepsy miss out on life-changing treatment

Published: September 10 2020
Last updated: September 27 2022

More than two-thirds (70%) of children eligible for epilepsy surgery to treat their seizures were not referred, a new report has found.

The Royal College of Paediatrics and Child Health (RCPCH) has today published the latest Epilepsy12 report. The report highlights the experiences of children with epilepsy services across England and Wales between 2018-19.

Epilepsy surgery has the potential to stop seizures for children with some types of epilepsy. It can be a life-changing treatment for those who are eligible.

As well as finding that children were not being referred for surgery, the report revealed delays in children receiving tests and scans. Around a third (31%) of children who should have had an MRI scan to help with diagnosis and treatment, did not receive one. Just under half (44%) of children with epilepsy also didn’t have an EEG within four weeks, as recommended by the National Institute of Health and Care Excellence (NICE).

Additional gaps were shown in mental health provision, with only 14% of health boards and trusts being able to integrate these services into children’s epilepsy care. Transition from children’s to adult epilepsy services was also highlighted as an issue. Four-fifths (81%) of children’s services reported that there are no agreed pathways for children to move from children’s to adult services.

The Epilepsy12 report has also shown improvements in some areas of epilepsy care, such as increased access to epilepsy specialist nurses (ESNs). ESNs are a key part of the epilepsy team and can make a big difference to patient care.

Chief executive of the charity Young Epilepsy, Mark Devlin, said: “The Epilepsy12 report shows great work being done by many children’s epilepsy services across the country, but the report also shows that too many children are waiting too long for diagnostic tests or not even having the recommended tests. The NHS Commissioner must ensure that every child with epilepsy has timely access to the investigations and treatments they should have to help families manage this serious condition.

“Children with epilepsy rely on investigations to help pinpoint a diagnosis and get the right treatment to control seizures. These seizures can significantly disrupt children’s day-to-day lives at home, at school and with their friends. The sooner the right treatment can be identified by specialists, the better chance families have to manage their child’s condition and enable them to achieve their full potential.”

Angie Pullen, epilepsy services director at Epilepsy Action, added: “The report shows many encouraging improvements in epilepsy services for children, with better access to and input from epilepsy nurses and doctors with expertise in the condition.

“In November 2019, we were looking at an improving picture of access to care. However, in September 2020, services may not be sustaining those improvements. The response to COVID-19 has focused attention and led to increased waiting times for diagnostic tests like MRI scans. Appointments are now often [over] telephone, and though sometimes very helpful, we question if best care can always be delivered from a distance.”

The full report is available on the RCPCH website.