9  March 2022

A pioneering partnership between Children’s Health Queensland and Mater has been recognised nationally in a Metabolic Disease Workforce White Paper for its delivery of co-ordinated, high-quality care to patients with rare metabolic disorders.

Around 2600 people, including about 1000 children, live with rare metabolic conditions in Queensland. There are more than 1600 kinds, many of which are inherited, that affect different metabolic pathways in the body. The rare conditions, such as Phenylketonuria, can cause intellectual disability and seizures. They can also cause muscle weakness and problems with vision, hearing and cardiac function.

The Queensland Lifespan Metabolic Service provides a ‘one-stop-shop’ for metabolic care across the state, providing both a telehealth service and multiple weekly clinics for paediatric patients at Queensland Children’s Hospital and adults at Mater Hospital Brisbane.

By pooling expertise and resources, Children’s Health Queensland and Mater are able to provide multi-disciplinary and seamless support for patients across the lifespan for their care journey.

The Lifespan service’s achievement has been recognised in the Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce, which was released to mark Rare Disease Day 2022 and highlight the strengths and gaps across Australia’s rare metabolic workforce.

The formal Lifespan partnership began in 2015, after current service director, Children’s Health Queensland’s Anita Inwood, travelled to the UK to study collaborative relationships between hospitals in Manchester and London.

Ms Inwood said although metabolic disorders can present for the first time in adulthood, many are diagnosed in infancy and childhood. Children’s Health Queensland and Mater work as one to offer patients a seamless transition through the service and ensure patient safety and consistency of care, regardless of where patients are placed in the service.

“As children transition into the care of adult services, there is a greater risk that they will drop out of services between the ages of 18 and 25, which can significantly impact their long-term health outcomes,” Ms Inwood said.

“In the UK, I observed two particularly successful transition programs between paediatric and adult services that offered safe, evidenced-based service delivery with good clinical outcomes to patients of all ages. We set out to create a model of care based on these principles for Queenslanders living with rare metabolic conditions – the first of its kind in Australia.

“The success of the program is largely due to the two hospital’s shared values and approach to person-centred care. Our clinicians and support staff actively strive to work collaboratively with each other, patients, and families to deliver the best possible healthcare experience for every person in our care.

“The state-wide service now manages patients of all ages across Queensland and supports other health services to care for individuals in their local hospital.”

Dr Liza Phillips, Mater’s Acting Director of Endocrinology, said Lifespan’s model of care was unique in Australia and gathering increasing attention and praise.

“This unique collaboration between Children’s Health Queensland and Mater has produced the gold standard practice for this very complex field of care,” Dr Phillips said.

“At other hospitals, staff can be scattered across numerous departments and sites.

“Lifespan enables us to bring together a single, amazing multidisciplinary team of metabolic clinicians, neurologists, nurse practitioners, metabolic nurses, dietitians, social workers and psychologists.

“Together we can ensure continuity of care for mothers during pregnancy, newborns, children and adults into old age.”