Unique health partnership provides a lifetime of care

07/Mar/2022     HealthMater Group

A pioneering partnership between Mater and Children’s Health Queensland 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.

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, Mater and Children’s Health Queensland 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 and highlight the strengths and gaps across Australia’s rare metabolic workforce.

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."

There are more than 1,600 rare metabolic conditions, many of which are inherited. These conditions affect different metabolic pathways in the body, and can manifest in several ways, including intellectual disability, seizures and muscle weakness, as well as problems with vision, hearing and cardiac function.

Phenylketonuria, the most commonly encountered metabolic disorder, is one of a number of diseases included in the newborn screening programme. Although metabolic disorders can present for the first time in adulthood, many are diagnosed in infancy and childhood.

New treatments are improving life expectancy and quality of life in a number of metabolic disorders.

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 the two teams worked 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."

Lifespan supports improved professional development and information-sharing — and is also a more cost-effective model of care.

Michael Pendergast (18) is one of a handful of Queenslanders who has been diagnosed with mucopolysaccharidosis (MPS) type VI, an enzyme deficiency which causes joint abnormalities and a wide range of other health conditions.

Michael’s condition was diagnosed before he was born and he has been a Lifespan patient since the service was created.

He has undergone numerous operations on his hands, knees and jaw and requires a weekly six-hour enzyme replacement transfusion to prevent damaging waste build-up in his body.

Although Michael’s infusion sessions were recently moved from Queensland Children’s Hospital to Mater, Children’s Health Queensland trainee nurse practitioner Sally Smith visits him at Mater each week to monitor his treatment and that of other Lifespan patients.

“I’ve always had MPS VI so my treatment is completely normal to me,” Michael said.

“You get to know the Lifespan staff well and my transition from the children’s hospital to Mater has been good.

“It’s likely that I will have more surgery and the transfusions will continue for the rest of my life.”

Michael has just enrolled in his first year at Queensland University of Technology, studying urban planning.

With around 2,600 patients with rare metabolic conditions in Queensland, demand for the Lifespan service is continuing to grow.

Thanks to its work, the collaborative and compassionate Lifespan team is ensuring Queensland’s rare metabolic disease patients enjoy greater health and wellbeing than ever before.


Image: Michael Pendergast is visited by Children’s Health Queensland trainee nurse practitioner Sally Smith during his weekly infusion session at Mater.


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