A national charity has welcomed new guidelines for the care of children and young adults with epilepsy that include a focus on mental wellbeing and making sure transitions from paediatric to adult services run smoothly.

Scottish Intercollegiate Guidelines Network (SIGN), which publishes evidence-based best practice advice for healthcare professionals, patients and their families, has updated its epilepsy guidance to include recent evidence and clinical experience around imaging, neurophysiology and genetic testing in the diagnosis of the condition.

Epilepsy is a condition where people have repeated seizures which start in the brain and is the most common neurological disorder in children.

The guidelines committee weighed up research on the role of new antiepileptic drugs, a ketogenic diet, surgery and vagus nerve and deep brain stimulation in the management of patients with drug-resistant epilepsy.

The guidance also focuses on the importance of recognising that a lot of children and young people will experience depression and anxiety that may be helped if they receive cognitive behavioural therapy.

The chair of the guideline development group, Dr Jay Shetty, a Consultant Paediatric Neurologist at Edinburgh’s Royal Hospital for Children and Young People, says there are a series of challenges for healthcare professionals in diagnosing and managing the condition:

“Epilepsy is a complex condition where diagnosis is based on witness account and reviews of videos of someone living with the condition and that can be difficult to diagnose.

“This guideline brings together the best available evidence to help healthcare professionals diagnose the condition and provide the best care.

“As part of the guideline development process, young people identified by Epilepsy Scotland were invited to attend an interactive group session to discuss their priorities and their views were then considered by the guideline group. The information they provided ensures that patient needs, concerns and issues that matter to young people living with epilepsy were heard and addressed.”

Dr Shetty added that the guidelines also highlight the role young people can play in managing their condition:

“Young people also told us that being asked about their mental health was a priority for them. Depression and anxiety can be common in children and young people with epilepsy and so one of our key recommendations is for healthcare professionals to routinely enquire about depression and anxiety symptoms in all children and young people with epilepsy.”

Lesslie Young, Chief Executive of Epilepsy Scotland, says SIGN guidelines are the gold standard model of care and can drive improvements in diagnosis and care:

“We are delighted young people living with epilepsy have been involved in this way and contributed to this guideline. By listening to young people living with epilepsy, this guideline reflects their experience which can only improve the lives of those children and young people living with the condition across Scotland.”

Ryan Burnett, who is 21, attended the group session and shared his experience of living with epilepsy:

“It is important that SIGN consulted with us to understand what epilepsy means to us so that they can explain it to others. I have experienced living with epilepsy for a long time and can say how it affects me. It is important for others to know and how to help.”

Around 55,000 people in Scotland are affected by epilepsy. With more than 40 different types of seizures and syndromes, it’s thought that no two people are affected by the condition in exactly the same way.

 

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