The Royal Children’s Hospital (RCH) Neuromuscular Clinic is one of the largest multidisciplinary clinics at the hospital, providing comprehensive care to approximately 600 children with neuromuscular disorders annually.
Operating weekly, this clinic acts as a one-stop shop, consolidating multiple appointments into a single hospital visit. This allows patients to see up to six specialists in a single afternoon and saves families from travelling back and forth for separate appointments.
The clinic prides itself on developing a model of support that is patient-centred, holistic, and personalised. It connects children with expert specialists from neurology to allied health – including Dani, the clinic’s only Neuromuscular Nurse Consultant.
The Neuromuscular Nurse Consultant role, supported by Muscular Dystrophy Australia and other generous donors, is a vital part of the leading, high-quality care provided by this world-class clinic.
Across her many years of caring for children with neurological conditions, every day has looked slightly different for Dani. But through it all, one thing has remained the same: her determination to help as many patients as she can – whether that’s through clinical care, education or advocacy, education.
Although she has a very busy schedule, we sat down with Dani for a short Q&A to find out more about her role, what continues to drive her, and what she’s grateful for.
Q: What does a typical week look like for you?
A: Wednesdays are our clinic day, and it’s always really busy. On average, we have around 20 patients attending each week. I can’t see them all, but I make sure I follow up with as many as I can and I’ll make sure to meet with any new patients.
Outside the clinic, I work closely with other health professionals at the RCH and beyond, providing support and education where needed. I’m also on several committees which allow me to educate, and to advocate for patients.
What stands out most from your time as a Neuromuscular Nurse Consultant?
One thing that I feel really proud of is the holistic care our patients get. Years ago, children with conditions such as Duchenne Muscular Dystrophy (DMD) often did not survive long enough to transition to adult care. Now, even though we still don’t have a miracle drug to cure them, they are growing and surviving and having meaningful lives.
I recently completed an audit of patients with DMD, and around five to 10 are transitioning to adult care this year – that shows just how important the holistic care we offer at the RCH is.
What does it mean to you to have the support of donors and Muscular Dystrophy Australia (MDA)?
The conditions we deal with are devastating and often, they don’t have great outcomes. So, I think that having someone by the family’s side through this difficult journey is vital. The support that donors and MDA give is so important, because if there was no nurse in this service, our families wouldn’t have the patient-centred, holistic care they need and deserve.