We fight to improve the lives
of everyone affected by epilepsy

Children with epilepsy missing out on diagnostic tests and life-changing treatment

10 Sep 2020

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.


You may also be interested in...

Epilepsy organisations and leading neurologists call for urgent restart of epilepsy services

Epilepsy services need to resume as quickly and safely as possible, say leading epilepsy charities and health professionals. In a statement released last week, they have urged decision makers and clinicians to prioritise neurology, including epilepsy, as lockdown eases and services resume. 

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.
8 + 3 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.