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.
All children being considered for epilepsy brain surgery must be assessed by a CESS centre. They may go on to have surgery at a CESS centre, or the CESS centre may indicate that the surgery can be done locally.
Support and services
The centre will make sure you and your child have access to any support and services you need, before, during and after surgery including:
- 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
- Information about patient support groups and charities
- Contact details for your child’s named nurse
Referral to a CESS centre
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
- 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
- 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
- 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
- Have Sturge-Weber syndrome or Rasmussen syndrome
- Have drop attacks
- Have tuberous sclerosis complex (TSC) with epilepsy that has not been controlled by 2 epilepsy medicines, used either singly or together
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.
Epilepsy Action wishes to thank Dr Richard Appleton, consultant paediatric neurologist at Alder Hey Children’s Hospital, Liverpool, UK, for his contribution.
Dr Richard Appleton has no conflict of interest.
This information has been produced under the terms of The Information Standard.
- Updated May 2016To be reviewed May 2019