During COVID-19

April 30, 2020

Health Advocacy is a Bright Spot

Depending on where you live you are probably nearing the end of your 6th week of Shelter in Place, our New Normal. In fact NPR has a great electronic e-newsletter named The New Normal that is published multiple times weekly and features multiple stories about our lives during COVID-19. I don’t know about you but while I am very busy with legitimate work, I find myself antsy, tired of being able to dress in whatever I want to (at least from the waist down) and finding that Zoom is better than nothing but doesn’t offer the true social connections I crave. And somehow all the home projects I should be getting to are not all just getting done by themselves. I find myself wondering what our lives will be like as we ease back into social connections. So many businesses have suffered, jobs have been lost. The anxiety and fear is palpable among so many people for more than just the disease itself. Shelter in Place and/or Stay at Home orders have been extended into the month of May for many states and are likely to be extended for others, then eased gradually, with specifics varying by state. There is a lot of contentious discussion about the huge economic need to reopen things versus the high risk of undoing any benefit of our social isolation efforts and sparking more spread of the virus. Spikes of COVID-19 cases will keep popping up, if patterns in other countries who have eased social restrictions hold true. So ongoing hand washing and other forms of vigilance will continue to make sense, especially among those at risk.

So where are we and what are we learning as we go along? A lot actually. I was honored on April 8th to be one of seven panelists participating in a webinar for other health advocates and patient advocates on COVID-19: Advocacy Responding to the Hotspots. The seven of us on the panel are all experienced health advocates from around the country: Seattle, New York/New Jersey, Los Angeles, Chicago (that’s me) and Houston. In each of our areas, the story of COVID-19 continues to evolve and unfold in different ways. Moreover, while the seven of us overlap in the nature of our practices, we each have different specialties. We shared some tips with our audience of health/patient advocates on things that we feel are especially important during this pandemic as we all strive to help our clients in any way we can.

Among the things we talked about are some very important points that I think everyone may find helpful, whether you are a health advocate yourself or not and are just trying to be prepared and to function during these strange times. Of course, if you have any questions or concerns regarding your own healthcare needs please reach out to us at HealthACR or to your own Health Advocate. If for some reason we are not able to help you we will do our best to connect you with a resource that can. Here are some of the points we shared in our webinar:

> Grab & Go Kit: In many parts of the country, if you need to go to the hospital, especially by ambulance, for any type of appointment or procedure, you will most likely be alone. No family member or health advocate will be able to accompany you. One of my colleagues, Dianne Savastanno of HealthAssist in Massachusetts and Rhode Island, talked during our webinar about the importance of a Grab & Go Kit (click HERE for list) with essential information about the patient, health history and emergency contacts, located right by the front door so that EMTs can grab it and take it with the patient. Emergency contacts, the health advocate and other key family members should also have copies. (Many of my clients have their HealthACR binder by the front door, a very similar concept.)

> Telemedicine: Many physician and other healthcare appointments are being conducted by telemedicine or telehealth. This has spurred some big changes on the part of healthcare providers and has been facilitated by the relaxation of some key provisions of HIPAA, a Federal legal requirement in place to protect patient privacy. Insurance companies are also stepping up and reimbursing providers for telehealth services. While everyone would prefer in-person appointments, current conditions only permit emergency or very urgent care in person. Telemedicine is a better option than leaving a health condition untreated until we emerge from the COVID-19 crisis. If you have chest pains or feel that you may be having a heart attack or stroke, do NOT let fears of COVID-19 keep you from going to the Emergency Room. Hospitals are reporting dramatic drops in heart cases in their ERs and are concerned that patients who legitimately should be showing up may be dying at home due to the fact that they aren’t seeking emergency care when they need it. If there is something wrong that would have caused you to make an appointment to see your physician, call your primary care doctor’s office or the specialist you would normally see for advice and talk about whether a telehealth appointment would be a good idea. We also strongly encourage you to set up your portal online if you haven’t already done so and if it is an option for you. Ask your doctor’s office about it. It is a great way to ask questions and to manage appointments.

> Plan ahead for your Telemedicine appointment, write down ahead of time:

  • What is going on with you.
  • When it started.
  • If there are times of day that it is worse or better.
  • What triggers the problem.
  • How things have changed if at all with regards to your condition over time.
  • Any concerns that you may have including any impact this is having on your quality of life.
  • Bring photos of the affected area if it is possible or even send them ahead of time.
  • Make sure that you also write down any questions that you have.

I recommend that you have someone else join you during your appointment if it is feasible and it is a medical appointment (as opposed to mental health which may be very private). There are two advantages to having a second person with you. The first is to have a second set of eyes so that if your provider has questions about any observable symptoms on your body, that individual can help measure any changes or note any differences. For example “Can you feel if the left wrist is bigger than the right?” No, but the other person with you can. The other individual can also help take notes during the appointment.

You may talk to a nurse before a doctor joins the call or even instead of a doctor. Frequently a nurse practitioner is qualified to assess and treat you and may be more available than the doctor. If the nurse practitioner (NP) feels that the doctor needs to be involved then it is part of the NP’s responsibility to bring the doctor in on the conversation.

> Telemedicine is also being used very effectively for therapy. Many people are struggling with anxiety, depression, fear and grief along with exacerbated symptoms of other severe mental health and substance abuse disorders. These symptoms are increasing across the age groups from children up through older adults and are affecting not only those who struggled with them before but also individuals who have not previously been impacted by mental health issues. Mental health practitioners have risen to the occasion in their efforts to address this despite previous reluctance to offer telehealth services. Do not hesitate to reach out if you need help through your primary care provider, local chapter of NAMI or ask your health advocate for a referral. We are here to help you.

> Plan ahead: Every home should have a COVID-19 Plan in case the virus strikes a member of your household. There are essential supplies being suggested by the CDC and other organizations including making sure that you have critical prescriptions on hand (some are experiencing shortages so this is a good idea anyway). This article outlines a very good list of some sensible items to have on hand and why they are important. Some, including thermometers, are hard to get right now so think ahead and hint: Amazon is not always your best resource. What should you do if you think someone in your home has been exposed or may have the coronavirus? Basically put them on a tight quarantine within your home. It is not easy or fun for anyone but it is important and, if done correctly, it works. This article from the New York Times describes considerations and what you need to do if someone in your household actually has the virus. Then everyone in the household should stay at home for the duration (everyone in the house should have no fever for 3 days, no fever reducing medicine for 72 hours, and everyone needs to be symptom free). Anyone who has the virus should be quarantined within the home according to this plan. If necessary, look into delivery services being offered by many pharmacies and grocery stores.

> Take care of yourself mentally and physically: Eat healthily, get enough good quality sleep, exercise, and do things to proactively reduce anxiety and stress. We have talked before about boosting your immune system but here are some suggestions again.

> Those who have been hospitalized and/or are immunosuppressed and get COVID-19 are likely to be contagious for longer than the average person. They will be discharged from the hospital while they are still contagious because hospitals need the space. Although some cities including Chicago, are exploring interim settings for these patients such as convention centers converted into hospital settings. The steps listed above for quarantining that person within the home should be followed if the patient comes home.

> A Health or Patient Advocate can help in difficult situations because we know the system and players. We can help reduce the anxiety factor. We will almost definitely have to work remotely, but our experience, connections and problem solving skills will likely make things go more smoothly.

> The majority of people who get COVID-19 will only suffer mild symptoms but for some they will be horrific and the disease can take a very sudden turn for the worse. If your family member all of a sudden cannot breathe or has lips that turn blue, call 911 immediately. Notify them that your family member cannot breathe, it may impact which emergency response team they send.

> There are not as of yet any FDA approved treatments for COVID-19. Treatment approaches continue to evolve and range from relatively inexpensive to very expensive. For that reason it is hard to say what insurance companies are likely to approve and pay for. Most are paying for telehealth and coronavirus tests, but not necessarily for the tests that an ER may run to rule out other things (flu, strep tests, etc.). Coronavirus can be diagnosed with an actual test or using a deductive process but it is important that the hospital or physician get it recorded as COVID-19 or coronavirus diagnosis in the medical record. If you or your family member have been diagnosed with coronavirus we recommend that you keep checking the patient portal as a way to see what has been recorded about your case. It is also often the best way to have timely communications with your medical team. It will take a long time to get the insurance for all of this sorted out and you will not be the only person who is trying to do so. Again health/patient advocates who work in this area will be able to help you.

> If you need a COVID-19 test start by asking your Primary Care Physician or your Department of Health where to go. The CDC has defined criteria using a Self Checker regarding who needs to get tested. It is unfortunately true that COVID-19 test kits are still not as readily available and accessible as they need to be.

In the meantime, please STAY HOME as much as you are able to. When you must go out, wear a mask (even a scarf), and wash your hands (gloves are not as useful as washing your hands as soon as you leave anywhere where there are other people). And thank you thank you thank you to all of the 1st responder healthcare, fire, police and safety workers who risk their lives each day AND to those who work at the grocery stores, pharmacies, mail, delivery and transport services, etc. who keep working so that the rest of us can stay home and try to stay healthy and safe during this eerie time.

Wishing you a safe and healthy April,


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