Willink Unit, Genetic Medicine at St Mary's Hospital (Paediatrics)
Manchester Centre for Lysosomal Storage Diseases, Hope Hospital, Salford (Adults)
Services Provided
St Mary's Hospital, Manchester
Diagnosis and treatment of MPS I, MPS II, MPS VI, Fabry disease and Pompe disease
Diagnosis and monitoring of MPS III, IV, VI, Mannosidosis, Fucosidosis, GM 1 Gangliosidosis and Niemann-Pick disease
Clinical trial site for Paediatric Morquio IV
The Willink has now moved to the new hospital site at Central Manchester. It is now within the Department of Genetic Medicine at St Mary's Hospital. The unit has outpatient and laboratory facilities. The treatment available for children is now given in the Children's Hospital.
Hope Hospital, Manchester
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.
Hope Hospital is also involved in the diagnosis and initiation of symptomatic palliative treatment and follow-up of Niemann-Pick disease and a clinical trial site for Niemann-Pick C.
Hope Hospital is also involved in the diagnosis and initiation of therapy where indicated for paediatric and adult patients and currently we have two clinics per year with Professor Cox from Cambridge.
The Hopsital also supports the clinical management of Krabbe disease and 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, St Mary's Hospital and the department of LSD, 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 Lysosomal Storage Disorders
CSB 1st floor A block
Hope Hospital
Stott Lane
Salford
Manchester
M6 8HD
Tel: 0161 206 4365/1419/1080
Fax: 0161 206 4036
Clinical Director – Dr.S.Waldek steve.waldek@srht.nhs.uk
CNS/Team Manager - Lorraine Thompson. Lorraine.thompson@srht.nhs.uk
Clinical Nurse Specialist – Margaret Kenny. Bridget.kenny@srht.nhs.uk
Staff Nurse - Carly Bleakley. Carly.bleakley@srht.nhs.uk
St Mary's Hospital - Paediatric Services
St Mary's Hospital
Oxford Road
Manchester
M13 9WL
Tel: 0161 701 2137/2138
Fax: 0161 701 2303
Willink Unit: 0161 701 2137/2138
Consultant – Prof E. Wraith ed.wraith@cmft.nhs.uk
Consultant - Dr S. Jones simon.jones@cmft.nhs.uk
Clinical Nurse Specialist (General Metabolic, MPS III, MPS IV) – Gill Moss gill.moss@cmft.nhs.uk
Clinical Nurse Specialist (MPS I) – Jean Mercer jean.mercer@cmft.nhs.uk
Clinical Nurse Specialist (MPS II, MPS VI) - Jane Roberts jane.roberts2@cmft.nhs.uk
Clinical Nurse Specialist (Niemann-Pick) – Jackie Imrie jackie.imrie@cmft.nhs.uk
Pompe Support Officer - Joan Fletcher joan.fletcher.cmft.nhs.uk
