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Tuberous Sclerosis Complex (TSC) is a genetic condition that causes non-cancerous tumours to develop in different parts of the body like the brain, kidneys, lungs and liver. TSC can present from infancy to adulthood and it is important that people with TSC are looked after by a specialist team who can monitor and manage different medical problems occuring at different stages of life.
Alder Hey in the Park Children’s NHS Foundation Trust (paediatrics, till 18 years of age)
The TSC clinic is held every other month and is jointly run by a neurodevelopmental pediatrician with expertise in neurodisability, paediatric neurologist and clinical psychologist. The professionals have close links with paediatric neurosurgeons, paediatric nephrologists, paediatric opthalmologists, clinical geneticist 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.
We offer a comprehensive review of the diagnosis, medical history, investigations and surveillance, treatment, physical examination; and provide advice about on-going management and future surveillance. We will liaise with your local team to ensure that the plan for on-going management and surveillance is organized locally; with timely reviews of scans and any action needed thereby. We review children in this clinic every 18 months – 2 years.
The Royal Liverpool Hospitals NHS Foundation Trust (adult)
This clinic is held four times a year and is predominantly run by the adult nephrologists with urologists and a specialist nurse in TSC. In addition there will be nurse led clinics held monthly. We are committed to providing a holistic service for people with TSC.
The team liaises closely with other members of the multidisciplinary team including the adult neurologists and neurosurgeons from the Walton Centre for Neurology and Neurosurgery, ophthalmologist, respiratory physicians and clinical geneticists where specific expertise is required.
Dr Bassi is a consultant neurodevelopmental paediatrician and lead in neurodisability. She has a specific expertise and interest in neurodevelopmental problems seen in children and young people with TSC and leads this service at Alder Hey. She undertakes research into neurodevelopmental outcomes in infants with TSC.
Dr Iyer is a consultant paediatric neurologist with expertise in complex epilepsy. He is the lead for epilepsy at Alder Hey and also for the children’s epilepsy surgery services. He has been the investigator for the EXIST trials for the use of everolimus in drug-resistant focal epilepsy in children. He has trained in neurology at the Fraser of Allander Neurosciences Unit, Glasgow; Birmingham Children’s Hospital; Alder Hey Children’s Hospital, Liverpool and Hospital for SickKids, Toronto.
Dr Israni is a Consultant Paediatric Neurologist at Alder Hey Children’s Hospital. He has a keen interest in neurogenetic conditions. He has particular interest in Tuberous Sclerosis related epilepsy, Tuberous sclerosis related structural brain lesions and Tuberous Sclerosis associated neuropsychiatric disorders (TAND). He has good experience of working with children with Tuberous Sclerosis with complex neurological problems.
Anna has worked at Alder Hey Hospital since completing her clinical training Doctorate at the University of Liverpool in 2009. Anna works across the neurosciences department supporting people who are under the care of the neurology service. Anna has specific interests in TSC, neurodevelopmental conditions including Autism and offers neuropsychological assessments and therapeutic support to patients under the care of the epilepsy service.
Dr Anijeet is the clinical director of nephrology at Royal Liverpool University Hospital. He graduated from Kerala, India and was awarded FRCP in 2009. His special interests are investigation and management of Chronic Kidney Disease caused by TSC, diabetes, high blood pressure and other diseases, congenital diseases affecting kidneys, Haemodialysis, Peritoneal Dialysis and Interventional aspects of Nephrology.
Dr Morgan is a consultant Paediatric Nephrologist. He started working at Alder Hey Children’s Hospital in 2006 after completing his nephrology training in Leeds and Toronto. He has experience in all aspects of childhood kidney disease and a particular interest in hypertension and kidney cysts. He has been involved in the Tuberous Sclerosis multidisciplinary team for 10 years.
Professor Mallucci is the lead for the northwest paediatric neurosciences network and is the chairman of the British paediatric neurosurgery research network. He is committed to improving outcomes of children with brain tumours and has published extensively in this field and regarding neuroendocospy and technical advances in neurosurgery. Conor has expertise in surgical resection of midline brain tumours, and sub-ependymal giant cell astrocytoma in TSC.
Dr Sharma graduated from Oxford University in 1999, and the majority of his postgraduate training has been in Liverpool, including a 3 year period of laboratory research culminating in a PhD. He has an interest in clinical trials, and is Renal Speciality Research Group co-lead for NW Coast. He also has an interest in Quality Improvement, and in particular the challenge of identifying and closing gaps between best evidence and clinical practice. He is a founder member of the Merseyside and Cheshire Quality Improvement Network, sits on the projects work stream of KQuIP, and is currently leading a project to improve patient experience on starting dialysis that’s funded by the Health Foundation. In addition, he has enjoyed working with colleagues to develop a regional service for patients with Tuberous Sclerosis.
Mr Lynch graduated in Dublin in 1994 and trained in Scotland, Birmingham and Melbourne. In 2007, he completed an MD on renal cancer. He has an interest in kidney stone disease, complex kidney cancer and benign kidney diseases, especially TSC.
Angie trained in Wirral Hospital and has worked in various specialties since qualifying. She joined the Nephrology at the Royal Liverpool Hospital in 1999. She studied at John Moore’s Liverpool University and her interest lies in the field of renal nursing. During her time in Nephrology she has managed both Nephrology and Transplant wards. Angie has held a Matrons post in Nephrology at The Royal Liverpool Hospital and Wirral Hospital. Angie is excited at joining her colleagues to develop a regional service for patients with Tuberous Sclerosis.
Christine is the TSA Adviser for the north of England, working with children, adults and families who are living with TSC. She has practised as a social worker within hospital and community settings throughout the Yorkshire area. She has a special interest in working with children and families who have complex health and disability issues.
Appointments and referrals: referrals need to be made in writing formally by GP, hospital consultants and other health professionals.
Paediatric referrals (up to their 18th) can be made to Dr Bassi, Consultant in Paediatric Neurodisability, Alder Hey in the Park Children’s NHS Foundation Trust, Eaton Road, Liverpool. L12 2AP
Secretary - Laura McDonald: Telephone 0151 252 5972, Fax 5152
Adult referrals can be made to Dr Anijeet, Consultant Nephrologist. Dr Sharma, Consultant Nephrologist, Royal Liverpool Hospital University Hospital Trust. Prescott Street Liverpool. L78XP
Secretary - Gill Whitehead/ Diane Manning: Telephone 0151 706 3429, Fax 5439
For Further information and support.
If you have any queries or concerns (before or after your appointment) or would like further information please contact:
Angela Carroll: TSC Specialist Nurse
Telephone: 0151 706 3276
Tuberous Sclerosis Association (TSA)
The TSA provides information, advice and support to individuals and families affected by TS - www.tuberous-sclerosis.org
Alder Hey Children's Charity