Regional healthcare disparities leave lipoedema patients without adequate care
Three years ago, Karen Kinnersley made a heart-wrenching decision to leave her beloved Darwin home and relocate to Victoria, a place she had left two decades prior. While living in the Northern Territory capital, Ms. Kinnersley was diagnosed with lipoedema but struggled to find a Darwin-based medical specialist who could understand or treat the disease.
Ms. Kinnersley has stage 3 lipoedema, a chronic hereditary medical condition affecting 11% of people assigned female at birth. It causes an abnormal build-up of fatty tissues around the arms, hips, and legs, potentially leading to immobility. Advocates highlight the condition's relative unknown status across Australia due to a lack of research, forcing those diagnosed to spend thousands on treatments and therapeutics to maintain their mobility.
The lack of services is disheartening, according to Jen Bartlett, director of Lipoedema Australia. She believes that increased research funding would lead to a better understanding of the condition's prevalence in the community. Long-term Darwin resident Leah Potter, who has stage 4 lipoedema, agrees that the absence of specialist services forces people to battle the condition in isolation, often living with pain and shame that compounds other underlying health issues.
Ms. Potter shares her story with every medical professional she meets, but they often lack knowledge about lipoedema or believe her. Many rely on telehealth, which can be costly, and the humid Darwin climate poses additional challenges. The absence of formal and informal support groups is a significant issue.
Lipoedema Australia's Ms. Bartlett emphasizes the need for more research to support Medicare applications. They lack critical data for these applications. While some access compression garment schemes, advocates argue for more comprehensive support, including Medicare coverage for lymphatic drainage and compression therapy across all states. Access to private health insurance for hospital stays is also deemed crucial.
NT Health's spokesperson clarifies that their occupational therapy departments at Royal Darwin and Palmerston Regional hospitals provide specialized assessments and management options for lipoedema patients, including self-management plans with skin care, compression pumps, lymphatic drainage, exercises, education, and referrals to allied health providers.
Melbourne-based plastic surgeon Ramin Shayan, specializing in reconstructive treatments, advocates for better education among medical professionals. He warns that dismissing patients' concerns can worsen psychological distress, as lipoedema is not susceptible to normal weight loss measures. Dismissing patients' concerns can exacerbate psychological distress, as lipoedema is not a condition that can be addressed through standard weight loss measures.
In regional Victoria, Ms. Kinnersley spends $100 to $140 on weekly treatments. Both Dr. Shayan and Ms. Kinnersley urge suspected lipoedema patients to seek early diagnosis and treatment, which can prevent future pain and expenses. Ms. Kinnersley's decision to use her entire superannuation for surgeries raises concerns about her future reliance on family, health, and welfare systems.
