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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 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.
Paediatric referrals (up to their 16th) 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
Referral can be made by using online referral form via the link provided in Contacts and Link below. Referral can be made online, or the form can be downloaded, printed out, and sent to TSC team, Alder Hey 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 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 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.
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 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 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.
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.
Paediatric referrals (up to their 16th birthday) 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 - Jemma Briggs: Telephone 0151 282 4930, Ext 4100
Referral can be made either online, or through print out form by using the link provided here - https://alderhey.nhs.uk/download_file/view/7096
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