We exist to improve the lives
of everyone affected by epilepsy

Referral to a CESS centre

These pages are about surgery in the UK. If you are looking for information about surgery in another country, please contact your local epilepsy organisation.

The National Institute for Health and Care Excellence (NICE) says that children with epilepsy should have regular reviews of their epilepsy and treatment. At their review, or if they are having problems with their epilepsy at any other time, they may be referred to a CESS centre. This is most likely if they:

  • Have severe epilepsy that started in the first few years of life, and is thought to come from one part of their brain or
  • Have had a magnetic resonance imaging (MRI) brain scan which has shown an abnormality in one or more parts of the brain. An example might be a benign tumour or an hypothalamic hamartoma or
  • Have focal epilepsy (also called partial epilepsy) that has not been controlled with 2 epilepsy medicines, used either singly or together. These children may, or may not, have an abnormality on an MRI scan or
  • Have a weakness down one side of the body (hemiplegia) and epilepsy that has not been controlled with 2 epilepsy medicines, used either singly or together or
  • Have Sturge-Weber syndrome or Rasmussen syndrome or
  • Have drop attacks or
  • Have tuberous sclerosis complex (TSC) with epilepsy that has not been controlled by 2 epilepsy medicines, used either singly or together

Support and services

The centre your child is referred to will make sure you and your child have access to the support and services listed below. This includes during the assessment, before, during and after their surgery. 

  • The chance to visit the CESS centre and meet the surgery team before surgery
  • Support for your family for the time when your child is in hospital
  • A child-friendly environment with toys, books and activities that are right for your child
  • A management plan that you and your child agree with – updated as needed - including details about follow-up care and the monitoring and review process 
  • A named doctor or healthcare professional who will coordinate your child’s care and act as a link between you and the people treating your child
  • Access to a member of the team for advice, information and support 24 hours a day
  • Access to an epilepsy specialist nurse

You will also be given clear information about your child’s condition including:

  • A description of their epilepsy
  • How their epilepsy will be managed
  • Medicines and other treatments they might receive
  • How you and your child can get the best from their treatment
  • Emotional and behavioural support
  • Details of patient support groups and charities
  • Contact details for your child’s named nurse

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
B157.02

Epilepsy Action wishes to thank Prof. Richard Appleton, honorary professor in paediatric neurology and Dr Tim Martland, consultant paediatric neurologist at Royal Manchester Children’s Hospital and Lead Clinician for NorCESS for their contributions.

Prof. Appleton and Dr Martland have declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated May 2017
    To be reviewed May 2020

There are no comments yet. Be the first to comment...