Children with epilepsy are missing out on vital support

An integrated approach to mental health support is important to help children and young people with epilepsy, as research shows they face an increased risk of mental health challenges. Following the report findings, Young Epilepsy is calling for better support provision across the board.

Mark Devlin, Chief Executive of Young Epilepsy explained:

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 report evidences the great work continuing during the challenging time of the pandemic, however, it also reinforces our belief that now is the right time to put mental health and wellbeing at the centre of children’s epilepsy care. As part of our #OnTopOfEpilepsy campaign we continue to advocate for integrated mental health support for children and young people with epilepsy.

The Epilepsy12 Youth Advocates, who include children and young people living with epilepsy, have been working with healthcare professionals to improve care for children with epilepsy and their families. They identified four top priorities for a ‘gold standard’ clinic which supports patients’ anxieties and worries with their epilepsy:

  • Access to information at the right time,
  • Having an epilepsy specialist nurse (ESN) who is easy to contact,
  • Having a calm, kind and understanding team,
  • Access to mental health services.

The Epilepsy12 report also found that less than half of the children and young people with epilepsy or their families or carers received information on Sudden Unexpected Death in Epilepsy (SUDEP) in the first year since their diagnosis. There was a significant variation on SUDEP information provided across different regions in England and Wales.

SUDEP refers to deaths in people with epilepsy that occur when someone dies suddenly and unexpectedly for no known reason with, or without, evidence of having had a seizure. It usually occurs at night when there are no witnesses.  While extremely rare it is crucial that relevant information on SUDEP is provided to children and young people with epilepsy and their families at the point of diagnosis to minimise the risks.

In other findings, the Epilepsy12 report showed that three quarters of children (77%) 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.

The findings are published in the latest Epilepsy12 report from the RCPCH and specifically highlight the experiences of children across England and Wales whose epilepsy care started between December 2018 and November 2019. The report shows significant variations in children’s epilepsy care across the country.

Epilepsy12 seeks to help improve the standard of care for children and young people with epilepsy. To do this, the audit collects and processes patient and organisational data to highlight areas where services are doing well, and also identify areas in which they need to improve.

Find out more about the Epilepsy12 report

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Infographics courtesy of the Royal College of Paediatrics and Child Health (RCPCH).