https://www.gosh.nhs.uk/wards-and-departments/departments/clinical-specialties/neurodisability-information-parents-and-visitors/clinics-and-services-related-wolfson-neurodisability-service/sturge-weber-and-neurocutaneous-syndromes-service/
Sturge-Weber and Neurocutaneous Syndromes Service
The Sturge-Weber and Neurocutaneous Syndromes Service provides specialist expertise in the assessment and management of children with Sturge-Weber syndrome and associated medical and developmental problems and in the assessment of other rare neurocutaneous syndromes.
Role of the service
The role of the service is to provide specialist multidisciplinary assessment and advice to families and relevant professionals. We accept referrals for children and young people from all over the UK in accordance with our referral criteria. Your child’s Paediatrician locally remains the co-ordinating specialist for your child’s medical and developmental needs.
The service provides the following:
- Assessment of your child’s development including speech, language, social communication, cognitive, independence, motor skills and functional vision.
- Recommendations regarding medical management. Advice may include medication, epilepsy surgery or the need for further investigation.
- Monitoring of your child’s progress over time where appropriate. This may include advice at key stages of development.
- Liaising with parents, schools and local services.
- Advice about your child’s condition, therapies and learning support.
Team
The multidisciplinary Sturge-Weber and Neurocutaneous Syndromes Service team members include:
- Consultants in Paediatric Neurology and Neurodisability
- Trainee in Paediatric Neurology or Neurodisability
- Clinical Nurse Specialist
- Clinical Psychologists
- Physiotherapist
- Speech and Language Therapists
- Occupational Therapist
- Service Coordinator
The team that you will see at your appointment will vary according to your child's needs.
Referrals
Children are referred either by their local consultant paediatric neurologist, consultant community paediatrician, or by a consultant from Great Ormond Street Hospital (GOSH).
Please see our referral criteria here
Referrals should be sent to:
gos-tr.neurodisabilityreferrals@nhs.net
For any other queries about the clinic please contact the service coordinator on 020 7405 9200 ext.1144.
Assessment
There are usually three parts to the clinic visit:
1. Interview: the team will take a medical and developmental history of your child and discuss any particular concerns.
2. Assessment: The team will explain the assessment process at the beginning of the appointment. The assessment may be formal or informal involving some table top tasks and play activities.
3. Feedback: We then meet with you to discuss our findings and recommendations. You will be given a summary of the discussion to take away with you on the day.
A full report will be sent to you and to your local team afterwards. We may sometimes have visitors in the clinic. We will check that this is acceptable to you at the start of the appointment.
Your child’s clinic visit
- Before the clinic visit, we ask you to complete a questionnaire asking about your main concerns and questions. We will ask you to send this back to the clinic coordinator before your
appointment. We will also ask you to send in any reports on your child from your local team.
- Appointments last approximately three to four hours for a half day appointment or you may be offered a full day appointment.
- There may be some points at which your child is not being directly assessed so please bring a snack.
- Please bring your child’s favourite toy so they have something to play with when the team is talking to you.
- Local professionals involved with your child are welcome to attend the appointment but please inform the clinic in advance.
Research and audit
We are actively involved in research and audit and may ask you and your child if you are interested in being involved. We keep a registered database 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.
Contact details
For more information about the Sturge-Weber and Neurocutaneous Syndromes Service please contact the service administrator on 020 7405 9200 ext 1144.
We also work closely with the support group Sturge Weber UK.