Liverpool Supra-Regional Tuberous Sclerosis Complex service for children and adults
Alder Hey in the Park Children's NHS Foundation Trust (paediatrics, until 18 years of age)
The TSC clinic is held every other month and is jointly ran by a neurodevelopmental paediatrician with expertise in neurodisability, paediatric neurologist and a clinical psychologist. The professionals have close links with paediatric neurosurgeons, paediatric nephrologists, paediatric opthalmologists, clinical geneticists and paediatric dermatologists to refer children who may need their specific expertise. In addition, there are transitional clinics held twice a year with the adult professionals from the Royal Liverpool Hospital. Young people with epilepsy are also referred to the transitional epilepsy clinics with the Walton Centre for Neurology and Neurosurgery.
The clinic offers a comprehensive review of the diagnosis, medical history, surveillance, treatment and physical examination of patients, providing advice about on-going management and future surveillance. Clinicians liaise with local teams to ensure that the plan for on-going management and surveillance is organised locally; with timely reviews of scans and any actions needed. Children are reviewed every 18 months to 2 years.
This clinic is held four times a year and is predominantly ran by the adult nephrologists with urologists and a specialist nurse in TSC. In addition there will be nurse led clinics monthly. Clinicians are committed to providing a holistic service for people with TSC.
The team liaises closely with other members of the multidisciplinary team including: adult neurologists and neurosurgeons from the Walton Centre for Neurology and Neurosurgery, opthalmologist, respiratory physicists and clinical geneticists where specific expertise is required.