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/referral-criteria-for-sturge-weber-and-neurocutaneous-syndromes-service-swans/

Referral criteria for Sturge-Weber and Neurocutaneous Syndromes Service (SWaNS)

  • Children under 17
  • Diagnoses:
    • Sturge Weber Syndrome
    • Infants with a port wine stain thought to possibly have Sturge Weber syndrome
    • MCAP syndrome
    • Congenital melanocytic naevus syndrome
    • PHACES
    • Other rare neurocutaneous disorders with evidence of neurological and developmental involvement
  • For infants with possible Sturge Weber syndrome (ie Port wine stain), we will accept referrals from internal services to avoid delay. However, we ask that contrast enhanced imaging is requested by the referring team at time of referral, and that a local paediatric referral is arranged also.
  • All other children referred will need a local paediatric consultant, and/or community paediatric input if there are developmental concerns, and we will require a referral from them, to include details of previous assessment and current input.
  • Prior to accepting referrals we will need:
    • MRI images on GOSH system (IEP if external images) – with contrast if Sturge Weber syndrome is suspected.
    • Details of developmental and medical issues including epilepsy if present
    • Local assessment reports
    • Information about what discussions have been held with the family about the diagnosis
  • Our clinic is a multidisciplinary developmental clinic, which includes medical input. Our clinic is an assessment and advice service, including liaison with local services. We offer regular follow up for children with Sturge Weber syndrome until transition, and limited follow up in some other conditions. Other conditions may be followed up in the joint neurology/dermatology clinic.
  • We do not accept referrals for tuberous sclerosis and neurofibromatosis as there are other established services for these conditions around the country.
  • Contact details