Self-advocating with your GP or other health provider can be challenging but incredibly rewarding, allowing you control over your healthcare. Here are some strategies to help you effectively communicate and advocate for yourself ensuring you receive optimal FH medical care:
Understand Your Condition
Before your appointment, take the time to thoroughly understand Familial Hypercholesterolaemia (FH) – build your FH literacy. Understand that you have a gene variant which inhibits your liver’s ability to effectively clear naturally occurring LDL (bad) cholesterol. FH is not the same as lifestyle-based high cholesterol; diet and exercise have limited impact, and FH has different treatment targets to mitigate the risk of premature heart disease. You were born with FH; it isn’t something that develops with age but untreated it will likely worsen with age.
Prepare for Your Appointment
Write down your concerns, questions, and any changes in your condition since your last visit. Prioritise these points, so you don’t forget to discuss anything important. Understand optimal FH treatment targets. Keep a comprehensive record of your medical history, especially your lipid (LDL, HDL, triglycerides) trends over time. This will not only help you feel more confident but also enable you to provide your GP or health provider with accurate information.
Ask Questions
Don’t hesitate to ask questions if you don’t understand something your GP or health provider says. Clarify medical terms, treatment options, and the reasons behind recommended tests or procedures. People respond differently to lipid lowering therapies (e.g. statins) and there are several that can be tried to achieve optimal outcomes.
Build a Partnership
Remember, your relationship with your GP or health provider is a partnership. You are an equal participant in your FH management, and YOU are the expert of your FH lived experience. Working together, equally, will lead to better health outcomes and a more satisfying healthcare experience.
If you have any concerns or would benefit from speaking to a peer with FH lived experience, make contact with FH Australia at info@fhaustralia.org.au.