Three in four children who should be considered for epilepsy surgery not referred, Epilepsy12 report shows

14 Jul 2021

Findings from the latest Epilepsy12 report reveal issues among children’s epilepsy services in England and Wales with referrals, information provision and school care plans.

The 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.


You may also be interested in...

New Sheffield study to compare remote and face-to-face seizure clinics

Epilepsy Action and Epilepsy Research UK are jointly funding a new research project comparing remote and face-to-face seizure clinic consultations.

There are no comments yet. Be the first to comment...

Question about your epilepsy?

Your question will be sent to our helpline advisors.

Have a comment about this page?

All comments are reviewed by a moderator before publishing. Comments will be edited or deleted if they are offensive, libellous, slanderous, abusive, commercial or irrelevant.

We ask for your email when you make a comment through this website. This means that we can let you know directly that we have replied to you. By making a comment through the website, you allow us to use the comment in our publicity without using your name. If we would like to use your name, we will email you to get your permission.

The content of this field is kept private and will not be shown publicly.
This question is for testing whether you are a human visitor and to prevent automated spam submissions.
13 + 3 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.