Liverpool Supra-regional Tuberous Sclerosis Complex service for children
About the Liverpool Children’s TSC Service
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.
The TSC clinic is held every month and is jointly run by a Neurodevelopmental Paediatrician with expertise in Neurodisability, Paediatric Neurologist, Paediatric Nephrologist, Clinical Psychologist and Physician Associate; who is care coordinator for TSC service.
Young people around 18 years of age get transition from the paediatric TSC clinic to adult TSC clinic.
Referral information
Paediatric referrals (up to their 16th) can be made to Dr Bassi, Consultant in Paediatric Neurodisability, Alder Hey Children’s NHS Foundation Trust, Eaton Road, Liverpool. L12 2AP
Referral can be made by using referral form via the link provided in Contacts and Links below. Referral form can be sent to TSC team, Alder Hey Hospital.
Dr Zahabiyah Bassi, Consultant in Paediatric Neurodisability, Alder Hey Children’s Hospital
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 Henry Morgan, Consultant Nephrologist, Alder Hey Children’s Hospital
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 Conor Mallucci, Consultant Paediatric Neurosurgeon, Alder Hey Children’s Hospital
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.
Jonathan Ellenbogen, Consultant Neurosurgeon, Alder Hey Children’s Hospital
Jonathan Ellenbogen is a Consultant Neurosurgeon working between Alder Hey Children’s Hospital and the Royal Manchester Children’s Hospital, Liverpool. His specialist interests include epilepsy, movement disorders, tumours and craniofacial surgery. He is the lead Neurosurgeon in the Northern Children’s Epilepsy Surgery Service (NorCESS) which encompasses both Alder Hey and Royal Manchester Children’s Hospitals. He performs depth electrode insertion for stereoelectroencephalography (SEEG) utilising a Stereotactic Robot and performs resective and disconnection procedures for epilepsy. Mr Ellenbogen is one of the few neurosurgeons in the UK who has a Deep Brain Stimulation practice for movement disorders in children. Mr Ellenbogen is actively involved in research and teaching as part of the University of Liverpool. He is well published in peer reviewed journals and book chapters, and has presented extensively at national and international congresses/meetings.
Manisha Patel, Physician Associate, Alder Hey Children’s Hospital
Manisha is a Community Physician Associate works with TSC team. Her main role is Care co-ordination, and she signpost parents appropriately when they are concerned. She helps team with organising MDT Meeting, review clinics and transition clinics and conducting pre-clinic assessment. She is also involved in Quality improvement projects, audits and working on database. She provides consistency to team and patient and helps team in improving patient experience and providing high qualitative care.
Dr Asheesh Sharma, Consultant Nephrologist, Royal Liverpool University Hospital
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.
Paula Meah, TSC Specialist Nurse, Alder Hey Children’s Hospital
My role as TSC nurse involves looking after adult patients in a holistic manner. I am the 1 st point of contact for our patients, families and caregivers. Provide information, support and advice about treatment options, investigations and assessments. Refer to other services where appropriate to improve health outcomes. Facilitate the coordination of clinics and scans.
Secretary – Community Admin Team Telephone 0151 282 4930,
Email: [email protected]