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Children missing out on vital epilepsy care - new report finds

 A new report charting children’s first year of epilepsy care shows families facing delays and barriers to diagnosis and treatment.  

The latest Epilepsy12 report from the Royal College of Paediatrics and Child Health (RCPCH) highlights the experiences of children across England and Wales in 2018-19. 

The report shows improvements in some areas of care, such as increased access to epilepsy specialist nurses (ESNs). These healthcare professionals help children and their families navigate the challenges of this complex condition. However, the Epilepsy12 report also highlights gaps where further improvements are still needed. 

This latest evidence shows that many children (70%) who should have been considered for epilepsy surgery had not been referred as expected. Brain surgery has the potential to cure a child’s epilepsy where it affects a specific part of the brain. 

Alongside this, 31% of children who should have received an MRI scan to help identify areas of the brain that could be treated by surgery did not receive one. Magnetic resonance imaging (MRI) uses strong magnetic fields and radio waves to produce detailed images which can show any structural issues in the brain that can cause particular types of epilepsy. 

MRI scans and EEGs (electroencephalograms) are tests that can help determine the type of epilepsy a child has, enabling more effective targeted treatments to be used. The Epilepsy12 study found that nearly half of children with epilepsy (44%) did not receive an EEG within the expected four weeks set out by NICE (the National Institute of Health and Care Excellence). An EEG records electrical activity in the brain using small sensors attached to the scalp. 

Mark Devlin, Chief Executive of Young Epilepsy, 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. NHS Commissioners 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.”  

In other findings, the Epilepsy12 report showed that only 14% of health boards and trusts were able to integrate mental health support into children’s epilepsy care, despite the increased mental health risks for young people with epilepsy. This comes amid concerns about increasing mental health issues as the country deals with the coronavirus pandemic.  

Transition from children’s epilepsy care to adult services was also an issue, with four fifths of children’s epilepsy services (79%) reporting that there are no agreed pathways for children to move across to adult services. Where these pathways do exist, this often constitutes just one joint meeting for the young person with adult and paediatric services together.  

You can read the full Epilepsy12 report at www.rcpch.ac.uk/epilepsy12.  

Read Millie's epilepsy surgery story on The Channel - https://thechannel.org.uk/treatment/brain-surgery-millies-story

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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