The holistic care model of the RCH’s Neuromuscular Clinic

Did you know the Neuromuscular Clinic at The Royal Children’s Hospital (RCH) provides comprehensive care to over 600 children with neuromuscular disorders?

Supported by philanthropy, the RCH Neuromuscular Clinic is the largest multidisciplinary clinic in the hospital. It operates as a one-stop shop, allowing up to 18 clinicians from different specialisations, including neurologists, respiratory physicians, orthopaedic surgeons, allied health therapists, nursing specialists and genetic counsellors, to work collaboratively on patient care.

Patients may see up to six specialists in one afternoon, which saves families travelling back and forth to the hospital for multiple separate appointments. The clinic prides itself on being family focused and developed this model of care in response to listening to how families felt their needs could be best met.

The clinic also runs a research program and participates in numerous clinical trials, which offers patients access to new treatments that are otherwise not accessible.

Dr Eppie Yiu is a paediatric neurologist and the lead of the clinic. In her role, Eppie ensures that children with neuromuscular disorders receive not only the best clinical care but also a holistic and supportive experience that extends far beyond the hospital walls.

“It is really important to understand the impact of a chronic neuromuscular disorder on not only the child, but also the family. Our clinic has supported these families since 2008 and we have seen the treatment landscape and outcomes transform over this time,” Eppie shared.

Over the past 16 years, the RCH Neuromuscular Clinic has elevated clinical care for paediatric patients, providing access to advanced therapeutics and best practice care in line with international guidelines.

“Advances in treatments for many neuromuscular disorders and with multidisciplinary care means that children are not only surviving longer, but also thriving, attending school and transitioning to adult neurology care, which has not always been the case,” said Eppie.

“Spinal muscular atrophy (SMA) is an excellent example of how disease modifying therapies, including gene therapy, have completely transformed survival and outcomes for babies and children with this condition in the last decade.

“Before disease modifying therapies became available, children with the infantile form of SMA did not live beyond their second birthday. With these new therapies, we now see these children survive, gain motor skills, attend kindergarten and school, and enjoy life, which is remarkable,” she added.

Additionally, the team is providing access to international clinical trials for other neuromuscular diseases, such as gene therapy trials for children with Duchenne muscular dystrophy, a degenerative muscle condition mainly affecting boys.

Thanks to philanthropic support from the Collier Charitable Fund, Pizmony Family Foundation, The Gillin Boys Foundation, Muscular Dystrophy Australia and the Rats of Tobruk Association, the Neuromuscular Clinic is creating a lasting impact on the lives of children and families facing the challenges of neuromuscular disorders – and Eppie is excited about what the future holds.

“It is an exciting and rewarding time to be working in neuromuscular disorders and seeing therapies improve
outcomes for children with these conditions,” she shared.

“The goal posts of what we can achieve in terms of outcomes, function and quality of life continue to shift – a wonderful problem to have which keeps us on our toes and continues to inspire all of us to keep pushing boundaries and supporting and improving the lives of our patients and families!”

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