GPs and other local healthcare providers are playing a vital role in delivering care for people with Huntington’s disease in the State’s most northern region.
The Far North Mobile Huntington’s Clinic, delivered by the North Metropolitan Health Service, has been providing care and education on the neurological condition in the Kimberley since 2018, visiting the region around twice a year.
The mobile clinics hosted in Kununurra and Halls Creek provide culturally sensitive support to those affected by the disease and help to identify people at risk, while also upskilling local medical practitioners, service providers, front line workers and support staff.
But outside of these biannual visits, the clinic relies on the skills and expertise of GPs and local providers to continue working with the community to ensure continuity of care.
Neuroscience Senior Research Scientist at North Metropolitan Health Service, Melanie Clark, told Medical Forum the clinic’s work would not happen without the support of GPs.
“This work is impossible without the local service providers and without GPs because they’re the people who are trusted, and they’re the people who know the community, what the community needs, and how services need to be delivered,” she said.
“It doesn’t happen without their recognition of symptoms and referral, but it also doesn’t happen without their engagement with the clinical process.
“We don’t do this work in a vacuum, we do this work in collaboration with a person’s trusted care providers so we can make sure we’re all on the same page.”
Delivering care in some of the most remote regions of WA is not easy, there are several factors that can hinder its delivery including community awareness of disease, a mistrust of Western medicine and distance.
But there are thought to be around 400 people affected by Huntington’s disease in the Kimberley alone, making it all the more pressing that care can be delivered collaboratively and on country.
Huntington’s disease is an inherited condition that affects the nervous system.
Symptoms often appear in a person’s 40s or 50s, with the most identifiable being rapid, involuntary movements of the fingers, limbs and face. The disease is progressive and, currently, there is no cure.
Ms Clark said the clinic’s main aims focus on education, empowerment and recognition.
To achieve this the clinic has worked with local Elders as well as service providers to understand how best to reach Indigenous communities and earn their trust.
“It’s about educating the affected community and the local service providers about Huntington’s existence, learning how we can empower the community to access services, and recognition that a specialist Huntington’s team exists in WA and is available to support the community,” Ms Clark said.
She adds that previously many people with the condition were misidentified as having problems with alcohol or drugs, or misdiagnosed as having dementia or Parkinson’s, which resulted in them receiving the wrong treatment.
“Now we’re supporting local services to be able to identify symptoms and signs of Huntington’s and then provide that specialist service,” she said.
“The local services are doing the bulk of the actual care and we provide that specialist consultation and then go up twice a year to work with the locals.”
The Far North Mobile Huntington’s Clinic has two further clinics planned for next year.
The clinics are funded by the State Government’s Disability Innovation Fund in collaboration with Huntington’s Australia and not-for-profit organisation Connectivity.