Great Ormond Street Hospital is a designated centre supported by the National Specialist Commissioning Team (NSCT) that provides a multi-disciplinary approach to the care of children with Lysosomal Storage Disorders (LSD). All services (initial diagnostic testing, disease management, treatments, palliative care and follow-up) are provided here.
All paediatric subspecialties (with the exception of liver and small bowel transplantation) are represented at Great Ormond Street Hospital. These include cardiology, specialist anaesthetists, orthopaedic surgery, neurosurgery, bone marrow transplantation genetics counselling service, ENT and dental specialities (this is not a comprehensive list). Hence all care is available under one roof.
There is a 24 hour on-call service provided by Metabolic Consultant and Registrar.
Further information about the hospital can be found on its website:
The LSD multi-disciplinary team comprises:
Consultants- Dr Ashok Vellodi Dr Maureen Cleary and Dr Lara Abulhoul
Clinical Nurse Specialists – Niamh Finnegan & Victoria Crook
Enzyme Laboratory Staff – Katie Bainbridge and Derek Burke
Full time Pharmacist Technician – Daniel Risson
Senior Physiotherapist – Michelle Wood
Principal Clinical Psychologist – Dr Katy Phillips
Senior Dysphagia Speech & Language Therapist – Sonia Lozano
Paediatric Metabolic SpR’s
The team at GOSH see most of the known lysosomal diseases and work closely with NSCT and all the other paediatric NSCT centres to ensure shared knowledge and practice.
In addition, GOSH has an excellent working relationship with referring hospitals, and local partnerships are encouraged to provide easy access to local services. Homecare is available (if clinically appropriate) to ensure children lead ‘a normal life style’ without too many hospital appointments and days missed from school.
Another important aspect of our service involves the process of planning and co-ordinating the transition of adolescents to adult services. This incorporates a multi-disciplinary approach in order to facilitate a smooth transition.
The team work closely with all the advocacy support groups and take an active interest in supporting their activities and encourage close liaison.
Metabolic Office, Level 5
Great Ormond Street Hospital NHS Trust
Great Ormond Street
London WC1N 3JH
Tel: 020 7405 9200
Dr Ashok Vellodi – firstname.lastname@example.org
Dr Lara Abulhoul – email@example.com
Dr Maureen Cleary – Maureen.firstname.lastname@example.org
Secretaries: Jennifer Kohn – ext: 8331 – email@example.com
Annette Wells – ext: 8519 – Annette.firstname.lastname@example.org
Clinical Nurse Specialists - ext: 0366
Niamh Finnegan – email@example.com
Victoria Crook – Victoria.firstname.lastname@example.org