3 in 4 children not referred for epilepsy surgery

Published: July 14 2021
Last updated: September 28 2022

Findings from the latest Epilepsy12 report reveal issues among children’s epilepsy services in England and Wales with referrals, information provision and school care plansThe latest Epilepsy12 report from the Royal College of Paediatrics and Child Health (RCPCH) was published in July 2021. Much of it reflects the state of children’s epilepsy services during the COVID-19 pandemic as it describes the situation in November 2020.

The report showed that three-quarters (77%) of children who should have been considered for epilepsy surgery had not been referred. Epilepsy surgery in children where a specific part of the brain is affected can cure a child’s epilepsy.

The report also found gaps in the safety information given to children and their parents and carers. In one-fifth of care plans, there was no evidence that water safety had been discussed, and a similar proportion showed no evidence of information on general participation and risk being discussed. Only a third (32%) of children had a school Individual Healthcare Plan.

Less than half (43%) of children and young people with epilepsy, and their families or carers, had received information around Sudden Unexpected Death in Epilepsy (SUDEP) in the first year since diagnosis. There was a significant variation in SUDEP information provided across different regions in England and Wales.

The report also identified issues around timely delivery of care, waiting times for diagnostic tests, like EEGs, and lack of referrals to paediatric neurologists or surgery services. Mental health support services for children with epilepsy were also found to be lacking, with only 15% of Health Boards and Trusts being able to include these within epilepsy clinics.

However, the report also pointed out there was evidence that despite the challenges of the pandemic, there was a good effort to continue to provide and improve epilepsy services.

Angie Pullen, director of epilepsy services at Epilepsy Action, said: “The pandemic has understandably impacted children’s epilepsy services and care for children with epilepsy has undoubtedly been negatively affected. But there have also been missed opportunities to make early epilepsy surgery referrals, along with access to timely diagnostic tests.

“The report also highlights a huge variation in the SUDEP information provided in different regions of the UK. It is unacceptable that where you live could determine the level of potentially life-saving information families receive. It is vital that children and young people, along with their families, are given all the facts about SUDEP so that they can learn the best way to manage risk and live safely.”

Mental health and wellbeing should be at the centre of children’s epilepsy care, according to Mark Devlin, chief executive of Young Epilepsy. He said: “The findings of this report are of particular concern, as children and young people have had to cope with the impact of the COVID-19 pandemic on their mental wellbeing, whilst still having to come to terms with their diagnosis and the challenges they might face.

“Epilepsy is not a mental health condition, yet children and young people with epilepsy are four times more likely to develop mental health problems than their peers.”

The full Epilepsy12 report can be accessed online on the RCPCH website.