Manchester university NHS foundation trust

Manchester, UK

Area of expertise and the Healthcare Provider’s contribution to care for patients within the MetabERN Network

The Willink Unit is the main centre in the North West of England for the diagnosis and treatment of patients with paediatric inherited metabolic disorders. With six consultants the Unit is able to provide a 24 hour service for patients with inherited metabolic disease. The service is supported by a team of specialist metabolic dietitians, scientists, allied healthcare professionals and nurses. Close integration of laboratory investigation and clinical management within the Unit has led to the development of a specialist service aimed at the diagnosis and treatment of inherited metabolic disease by early diagnosis and appropriate management. The Willink Unit is now based in the regional genomics service (MCGM) however we remain closely integrated with (and in the same building as) the Royal Manchester children’s hospital, which offers specialist care to children throughout the region. Working with other specialist teams in the children’s hospital we can offer almost all potential medical or surgical interventions required by a child with an inherited metabolic disease. Specifically we have carried out more renal and haematopoietic stem cell transplants for metabolic disease than any other centre in Europe.
We are closely linked with Salford Royal Hospitals who are only 5 miles from our centre. They are the adult IMD centre for the North of England and regular meetings, a shared lab and twice monthly joint transition clinics ensure that our children can move smoothly to adult care between the ages of 16 and 18 years. We run a nationally designated LSD servcie for children, for an area covering the North and South West of Englnad, as well as Wales and Northern Ireland.

SPECIFIC TREATMENTS AND INTERVENTIONS PROVIDED BY THE HCPs

The Willink Unit offers the full range of therapies possible for children with metabolic disorders. these include standard medical therapies (medicinal), specialist metabolic diets, recombinant protein (enzyme replacement) therapies and acute management of metabolic decompensations. We work with our paediatric intensive care unit to offer a supra-regional centre of expertise in the management of hyperammonaemia, with regional guidelines. Renal and haematopoeitic stem cell transplants are offered on site, with joint clinics for follow up. Liver transplants are performed in Leeds however we have joint metabolic liver clinics with the Leeds haepatologists to facilitate joined up care for these patients. We have a full and integrated laboratory covering all main metabolic diagnostic and monitoring tests – small molecules, enzymology and a full molecular capability including next generation sequencing in a metabolic panel and whole exome sequencing.

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    Dr Simon Allan Jones

    Central Manchester University Hospitals NHS Trust