Be Your Own Advocate!

Tony St. Amant from Chico, CA, sent us a very important message. He says, “I have been a full-time oxygen user for eight years and over those years I have interacted with dozens of other oxygen users, both in person and online. I think I can offer some insight into Ms. Dorbin’s predicament of being frustrated with her physician that was reported in your May/June 2017 newsletter.

“First, practical knowledge of home medical equipment is not a strong suit for the vast majority of doctors. The situation is much like it is with prescription medicine. The doctors know what to prescribe, but if you want information on side effects or drug interactions, your friendly pharmacist is the person to ask. For oxygen, the person to work with is a respiratory therapist who can help you assess your resting and active oxygen needs, recommend the appropriate prescription to your doctor, and recom- mend the appropriate type of equipment.

“But second – and this may be most im- portant to many COPDers – if you don’t have access to a respiratory therapist, you have to fill in the void. You have to become your own analyst and advocate. And when you see your oxygen saturation continual- ly dropping below acceptable levels, you need to press your doctor for a solution. From what I have heard, most doctors are willing to prescribe oxygen at whatever level the person’s experience demands, and equipment providers will respond to doctors’ orders.

“The COPDers who are the most physi- cally active are those who educate themselves on their condition, become knowledgeable of the medicines that can alleviate their con- dition, and press the system to provide the type and level of care they need. You cannot rely on it happening on its own.”

Norwegian researchers asked people with COPD what exactly do they want from their home care provider? The consensus was:

  • To be seen, talked with, and under- stood;
  • Health care support at home as well as the hospital; and
  • Practical support and exchange of

People also want to feel safe and com- forted and be motivated to achieve better health.

Unfortunately, of the almost two thou- sand home oxygen users who took part in a survey by the ATS Nursing Assembly Oxygen Working Group, fewer than 10 percent of people received their oxygen instruction from a clinician. In 64 percent of cases, that instruction was provided by a delivery person, and in another 10 percent, no instruction was provided at all. Sadly, 35 percent reported being either very or somewhat unprepared to operate equip- ment even after instruction. If you don’t understand how and why your oxygen equipment operates, please speak to your provider until you get answers!

10% Clinician, 64% A Delivery Person, 10% No Instructions Provided, 35% Unprepared even after instruction