Are You Getting the Care You Deserve? What I Learned This Week

Hello Caregivers,

This week, I encountered a situation that highlighted the importance of being an advocate for your health, or the health of a loved one. A family member of mine, who has a complex medical history, wasn’t receiving the treatment she deserved. After a concerning episode, her doctor revealed that a referral to a specialist had supposedly been sent over two months ago, but nothing had been scheduled or communicated. This breakdown in care was unacceptable, and it served as a reminder that we must be vigilant when navigating the healthcare system.

In this newsletter, I want to share some essential strategies to help you identify subpar service from a physician's office and steps you can take to ensure you or your loved one receives the care they need.

1. Understand the Role of the ER

An emergency room visit is designed to identify and stabilize the immediate issue. It’s not a substitute for thorough, ongoing care. After an ER visit, it’s critical to follow up with your primary care provider to understand why the episode happened and how to prevent it from recurring. Don’t assume the ER has resolved the root problem, they’re focused on short-term stabilization, not long-term solutions.

2. Never Go to the ER Alone

If possible, bring someone you trust with you to the ER. A second pair of eyes and ears can help you navigate the process, take notes, and advocate for you when you might be too overwhelmed to do so yourself.

3. Create a Filing System for Discharge Paperwork

Organizing discharge paperwork is crucial, even in today’s world of digital medical records. While hospitals and doctors may have access to electronic records, having a physical copy of your discharge paperwork can be invaluable. If there is a repeat visit to the ER for the same issue, you can hand the paperwork directly to EMTs or emergency room staff. It often includes critical information such as your medication list and details about your most recent treatment, helping healthcare providers act quickly and accurately. Whether you store it in a physical folder, a digital system, or a "file of life" on your refrigerator for emergencies, having this information readily accessible provides peace of mind.

4. Carry a Notebook

When dealing with doctors or other healthcare providers, always have a notebook (or a notes app on your phone) handy. Use it to jot down the names of anyone who promises to send a referral or perform a specific action on your behalf. Keeping a detailed record ensures you can follow up and hold people accountable.

5. Read and Understand Discharge Paperwork

Don’t leave the ER or any medical appointment without thoroughly reading your discharge paperwork. If there’s a mention of something you don’t understand or that wasn’t discussed during your visit, ask for clarification immediately. Understanding your paperwork is the first step to understanding your care plan.

6. Ask Questions

When discussing an episode or treatment plan, don’t be afraid to ask why something happened and what you can do to prevent it in the future. Healthcare providers are there to help, and you deserve answers to your questions.

7. Prepare for Follow-Ups

Use your notebook to jot down any questions that come up between the time of your visit and your next appointment. This ensures you’re fully prepared and won’t forget to address concerns during your follow-up.

8. Inquire About Medications

If you’re prescribed a medication, ask about the long-term plan. What steps can you take to eventually stop taking it? Are there lifestyle changes that could help? Never assume you have to take a medication indefinitely without exploring alternatives.

Why This Matters

These steps might seem simple, but they can make the difference between receiving adequate care and receiving excellent care. Advocating for my family member reminded me how important it is to stay organized, ask questions, and follow up on every promise or referral.

In my next newsletter, I’ll share more details of what happened with my family member, the lessons learned, and how we ultimately resolved the situation. Until then, I encourage you to think critically about your healthcare experiences. Are you getting the care you deserve?

If you’ve experienced a similar situation or have strategies to share, I’d love to hear from you. Let’s learn and grow together in our journey to becoming informed and empowered advocates for health.

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