Mental wellbeing and learning impact now included in NICE epilepsy quality standard

Young Epilepsy has welcomed a new quality standard for epilepsy care that say children and young people should be asked about their mental wellbeing and learning at their epilepsy appointments.

The National Institute for Health and Care Excellence (NICE) published the updated epilepsy quality standard in December 2023. It highlights six priority areas for quality improvement in epilepsy care for children, young people and adults:

  • Referral and assessment after first seizure
  • Referral to tertiary specialist services
  • Epilepsy specialist nurse access
  • Epilepsy care plans
  • Mental health and wellbeing
  • Neurodevelopment and learning disabilities

Young Epilepsy contributed to the development of the quality standard by sharing evidence and recommendations based on the experiences and views of children and young people with epilepsy.

Mental health, neurodevelopment and learning disabilities have been included in the epilepsy quality standard for the first time:

  • Quality statement 5

People with epilepsy are asked about their memory, mental health, and social and emotional wellbeing at epilepsy appointments. 

 Quality statement 6

Children and young people with epilepsy are asked at epilepsy appointments about neurodevelopment and learning difficulties or changes in their learning progress, and adults who have learning disabilities are asked at epilepsy appointments about changes in their condition and other [conditions that affect them].

Young Epilepsy has been calling for greater awareness and support for the mental health and learning needs of children with epilepsy as part of our #OnTopOfEpilepsy and #UnderstandMyEpilepsy campaigns. We’re delighted that these areas have been integrated into the new NICE quality standard.

Other areas of the quality standard also highlight other important areas for improvement:

  • After a first suspected seizure, people should be seen by an epilepsy expert within two weeks
  • People who need specialist care for their epilepsy should be seen within four weeks of referral to a tertiary epilepsy service (or two weeks if it is an urgent referral)
  • People with epilepsy should have access to an epilepsy specialist nurse.
  • People with epilepsy should have an up-to-date and agreed epilepsy care plan.

Find out more on the NICE website: Overview | Epilepsies in children, young people and adults | Quality standards | NICE