Department of Adults with Inherited Metabolic Disorders, Hope Hospital,Salford
Diagnosis and initiation of therapy where indicated for paediatric and adult patients Currently we have two clinics per year with Professor Cox from Cambridge
Mucopolysaccharide and Related Lysosomal Storage Disorders
Diagnosis and treatment of MPS I
Diagnosis and monitoring of MPS II, III, IV, VI, Mannosidosis, Fucosidosis, GM 1 Gangliosidosis
Clinical trial site for MPS II, MPS VI, Paediatric Fabry and Pompe disease
Fabry Disease (Hope Hospital)
Diagnosis, treatment and monitoring of Fabry disease
Monitoring of adult LSD patients
Fabry disease is managed at the Hope Hospital site where families are encouraged to attend together so that they can meet adult and children’s physicians and nurses at the same time. This has two major benefits: families have excellent continuity in care and doctors gain a unique understanding of the variation in symptoms across affected individuals, encompassing the natural history of diseases from childhood through into adult life within a seamless transition.
Diagnosis and Initiation initiation of symptomatic palliative treatment and follow-up
Clinical trial site for Niemann- Pick C
Krabbe disease, Tay-sachs
What does NCG Designation mean?
The shared care management of children and adults with lysosomal storage disease (LSD) services are based at the Willink Unit, Royal Manchester (RMCH) and the department of Adults with Inherited Metabolic Disorders, Hope Hospital, Salford. Both sites are designated LSD centres by the National Specialist Commissioning Advisory Group (NCG). At the NCG centre the initial visit will include a discussion of the disease and its future management.
Normally this visit is arranged after a diagnosis is made in the laboratory. Treatments, if available , such as enzyme replacement therapy and bone marrow transplant are organised at the site, and the Nurse Specialist involved will liaise with the family about the future care. We also are a resource for other health care professionals to contact us as these diseases are still rare. When a diagnosis is made it is often a shock for the families and they will require support and guidance throughout.
If treatment is not initiated here at the NCG site then the staff at the centre will arrange appropriate follow up and monitoring of the patients condition. Most patients attend clinic twice a year, but more frequently if needed.
Who are we and how do you contact us?
HOPE HOSPITAL – ADULT SERVICES
Salford Royal Hospitals NHS Trust
Department of Adults with Inherited Metabolic Disorders
CSB 1 st floor A block
Tel. 0161 206 4365 fax 0161 206 4036
Clinical enquiry line: 0161 206 1899
Clinical Lead – Dr Chris Hendriksz
Consultant - Dr Reena Sharma
Consultant - Dr Ana Jovanovic
CNS/Team Manager - Lorraine Thompson.
Nurse Practitioner - Carly Bleakley