The United States isn’t known for having efficient, well-run, and timely healthcare. In fact, anyone who has needed healthcare knows quite the opposite can be true. Vermont, in particular, has extremely limited options for specialized in-state care.
I spend at least two days each week navigating healthcare for myself and my children. Mine is the voice of experience.
My life started 10 weeks too soon, and my premature birth landed me my first hospital stay, first surgery, and a number of lifelong health problems. (Un)fortunately because of this, when my oldest child developed a few medical problems of his own, I knew how to advocate for him. A few years later, I became sick with an extremely rare autoimmune disease and my two younger children developed health issues of their own. I wasn’t new to navigating the healthcare system and because of that, my children and I got properly diagnosed and treated sooner. I have spent over three decades navigating healthcare. I’ve learned many lessons the hard way and have become skilled at working with different healthcare gatekeepers.
Here are my top tips to help you navigate healthcare in order to get a proper diagnosis and treatment for you and your family.
Request a referral
If your primary care doctor or your child’s pediatrician don’t seem knowledgeable about your concerns or dismiss them outright, request a referral to a specialist. Then, follow up on the referral! You do not need to wait for the specialist to “process” it and call you. So many times weeks would pass, only for me to call the specialist’s office and have them claim “we never got it.” Now I give it 2 business days, then I start calling. If they “didn’t get it,” get their direct fax line and have your primary care doctor or pediatrician fax the referral. At bigger hospitals, all referrals are sent to a mass referral center to be sorted. You can bypass this by having your referral sent directly to the department you’re going to by your doctor.
Get on cancellation lists
Often, specialists are scheduling many months out. This is frustrating but you can potentially shorten your wait by being on the cancellation list.
Follow up about everything
This is critical, especially before you travel somewhere for tests or an appointment. I once traveled 4 hours away for a second opinion for my son only to find my local hospital had never sent his records. I was devastated. Now I follow up on all records requests with a call. For lab work, it’s worth calling ahead to confirm the order has been received, especially if the ordering provider is not in the lab’s network. It is the worst feeling showing up for a fasting (no food or drink prior) blood draw only to find the orders were never sent. It’s even worse when I have a miserable, fasting kid.
Document symptoms and take pictures and/or videos
Unfortunately, proof of symptoms is paramount. Too many times I’ve been dismissed because I couldn’t show the doctor what I was seeing at home. If something is happening intermittently, the best thing to do is document it. To manage my own complex health, I created an entire spreadsheet to keep my provider list, medicine list, and symptom tracking organized. Being able to pull this up on my phone during appointments helps me have less anxiety about forgetting to report something. As an added bonus, some of my doctors have noticed patterns that even I had missed.
Use the apps
Make the most of the apps your hospital or doctors use. These apps may offer expedited prescription renewals, appointment changes, and fast answers to quick questions. Previously these would’ve caused a week-long game of phone tag that no one wanted to play.
Ask what resources are available to you
I recently discovered I could get a nurse care manager completely free of charge to help coordinate my care and help my doctors stay on the same page. (I have 25 providers and it has become very overwhelming to manage on my own.) There are also social workers, patient advocates, and financial services that can all help in different ways.
Insurance: know your plan and document everything
Dealing with insurance could be an entire blog. My main tip is to know your plan and document all communication with the insurance company. For example, if you call, document the date, time, name of the person you speak with, and the issue you addressed.
Insurance, part 2
If your child has high medical needs and you cannot access Medicaid traditionally, look into a Katie Beckett waiver. It is available in 24 states including Vermont.
Prescriptions
I am admittedly less knowledgeable about prescriptions but I do know that prescription costs vary by pharmacy. Additionally, it is sometimes less expensive to *not* use your insurance for your medicine. Either the uninsured price or coupons available through apps or the drug manufacturers can significantly reduce out-of-pocket costs.
Ultimately, the most important thing that will help you navigate the healthcare system is your intuition or gut instinct. You know your children and yourself best, so keep fighting for the healthcare you need. It may feel crazy, frustrating, and hopeless at times. But I’d rather fight than have myself or my kids suffer. No one deserves to suffer.
At a time when we are most vulnerable, navigating healthcare can put undue hardship on patients and caregivers. While I hope you’ll never need these tips, I’m sharing my hard-earned lessons to hopefully decrease the emotional burden and turmoil you’ll experience navigating healthcare.
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Great advice. I especially like the follow up about everything part – this has been a game changer for my family, too. Thanks for sharing!
This is so helpful and has some really good tips! I’d never been so engulfed in it all until the kids came along. I’m so thankful for Patient Portals! And yes on the following up…I do it in many different ways and sometimes I feel like it’s the only way I’m making any progress. Thank you for sharing!