Sturge-Weber Clinic

The Sturge-Weber and Neurocutaneous 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 disorders.

The service aims to:

• Provide information about Sturge-Weber syndrome.
• Assess your child’s development including speech, language, social communication, cognitive, motor skills and functional vision.
• Provide recommendations regarding medical management, therapy and/or learning. Advice regarding medical management may include advice about medication, epilepsy surgery or the need for further investigation.
• Monitor your child’s development over time. In some situations, a child’s development can fluctuate.
• Work closely with parents and local services.

The service aims to:

• Provide information  about other  rare neurocutaneous disorders
• Assess your child’s development including speech, language, and social communication, cognitive and motor skills.
• Provide recommendations regarding medical management, therapy and/or learning. Advice regarding medical management may include advice about medication or the need for further investigation.
• Monitor your child’s development over time. 
• Work closely with parents and local services.

The Sturge-Weber Clinic team members will vary depending on your child's need but will generally include a consultant paediatric neurologist, Clinical Nurse Specialist, specialist clinical psychologist, specialist registrar, physiotherapist, speech and language therapist and occupational therapist. ”

The team see children with Sturge-Weber syndrome and other rare neurocutaneaous disorders with associated developmental difficulties. Children may have difficulties with language, communication, learning, behaviour, movement or vision.

Children are referred either by their local consultant paediatric neurologist, consultant community paediatrician, or by a consultant from Great Ormond Street Hospital (GOSH).

Referrals should be made to:

The Clinical Co-Ordinator 
Sturge Weber and Neurocutaneous Service
Wolfson Neurodisability Service at GOSH
Level 10 Old Nurses Home
Great Ormond Street Hospital for Children
NHS Foundation Trust
Great Ormond Street
London, WC1n 3JH

Before the clinic visit, we will send you a questionnaire asking about your main concerns and questions. We will ask you to send this back to the clinic 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. The appointment may involve some waiting so please bring a snack.

Please bring your child’s favorite 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.

There are usually three parts to the clinic visit:

• Interview: the team will take a medical and developmental history of your child and discuss any particular concerns.
• Assessment: assessment may be formal (language or cognitive tests) or informal (using a range of play materials) depending on your child’s abilities and the questions raised. You are welcome to observe the assessment. After the assessment, the team takes 20 minutes to analyse the assessment as a team.
• 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.
• For many children, the assessment will be organised over two visits with feedback either at the second visit or as a separate appointment.

In some cases, further medical investigations will be suggested which may be carried out locally or at GOSH.

Children are regularly reviewed by the service according to their needs.

We may sometimes have visitors in the clinic. We will check that this is acceptable to you at the start of the appointment.

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.

For more information about the Sturge-Weber and Neurocutaneous Service please contact the service administrator on 020 7405 9200 ext 1144.

We also work closely with the support group Sturge Weber UK, their website address is:

http://www.sturgeweber.org.uk/