Developmental Epilepsy Clinic

The Developmental Epilepsy Clinic at Great Ormond Street Hospital (GOSH) is a multidisciplinary clinic that provides specialist assessment and management of the interaction between complex epilepsy and development.We are part of the Neurodisability Service and also work closely with the Epilepsy Service. We carry out developmental assessments, which show the child’s level of abilities and explore any behavioural issues. This information is then used to make diagnoses, direct medical and surgical interventions, and to guide education, therapy and behaviour management.

Only referrals from a paediatric neurologist or paediatrician can be accepted. Referrals can be made online by emailing:

gos-tr.neurodisabilityreferrals@nhs.net

Team members vary depending on the child’s need, but will generally include a doctor, speech and language therapist and clinical psychologist. An occupational therapist is also available.

We see children up to the age of 16 years who have epilepsy with complex developmental issues. We particularly focus on:

• Landau-Kleffner syndrome (epileptic aphasia spectrum) and other epilepsies where there may be difficulties with speech and language, social communication, learning, behaviour or movement
• genetic forms of epilepsy
• monitoring of development for specific epilepsy treatments
• evaluation of development before and after epilepsy surgery
• children who find some assessments challenging due to behaviour, sensory impairment or unusual developmental profiles

When you arrive please check in at the Outpatient Reception Desk on the ground floor of the hospital. Appointments last approximately four hours and may involve some waiting, so do bring a snack. It may help to note down your main concerns or questions before clinic. Please complete the pre-visit questionnaire and bring it and copies of any previous assessment reports to clinic or upload them to MyGOSH.

This is how sessions within this clinic usually run:

• Interview: We explore your child’s history and your concerns. Currently this occurs by phone or video link and is booked for the week before assessment
• Assessment: We assess your child’s abilities and behaviour using standardised assessments, involving pictures, puzzles and games.
• Questionnaires: You may have to fill out some questionnaires or answer questions to help understand how your child is going at home, school or in the community.
• Feedback: We take a break to discuss the assessment as a team, and then meet with you to discuss our findings and recommendations. You will be given a brief summary report to take away on the day and a full written report will follow.

From our assessment and observations we aim to describe your child’s strengths and areas of need and can provide suggestions for support strategies. Sometimes this can lead to identifying a new diagnosis like intellectual disability (learning disability) or language disorder.

We aim to work with the child’s local team to ensure a shared understanding. Therefore as part of our assessment process we routinely liaise with local professionals who have been involved in the child’s care including health, education and social care. If you have concerns with respect to this please contact our administrator on extension 1144. mila.bibi@gosh.nhs.uk

Our reports are routinely shared with parents, the referring clinician, the child's GP and social care (if the child is known to social services). If it is in the child's best interest the report may also be shared with other relevant professionals.

We are actively involved in research and may ask you and your child if you are interested in being involved. We keep a registered database (ref: 04NR21) of clinical information that may be used to improve quality of care. All data is strictly confidential and will only be used in an anonymous way. If you would prefer your child’s details not to be entered into the database you are free to 'opt out' and this will have no impact on your child's future care or treatment. Please let a member of the team know if you wish to opt out.

You can contact the Developmental Epilepsy Clinic on 020 7405 9200 ext 1144.

The Developmental Epilepsy Clinic also runs joint clinics with epilepsy and genetics, several times a year where children with genetic epilepsy can be seen and receive advise from these specialities together. This requires a separate referral.