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Helping people trying to live safely in COVID world? Listen to people, hear their questions. Can we find trusted evidence-based guidance? A daunting challenge! Collecting materials for a foundation. If not us, who?
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Patient expert, co-investigator, patient partner, subject matter expert, patient advocate, patient/caregiver activist. Many labels. Whatever you call us, invite those of us with different and unique experience, skills, and circumstances to sit at decision-making tables. Then treat us as equals and respect us. Then do something with what we offer.
I’m celebrating that I’ve finally learned an effective stretch for my hamstrings. Thigh and calf Charley horses and foot cramps have disrupted my days. My low back’s been hurting for several months caused by this tightening and cramping of my quads, hamstrings, calves, and feet. It’s become hard to sit for more than 15 minutes. I bought a standing desk, next to my sitting desk. I’m paying attention to ergonomics, learning to type (I’ve always been a hunt and peck kind of guy). My chiropractor and massage therapist attribute these muscle cramps to changes in my walking caused by the MS and wearing an ankle/foot orthotic. The Charley horses are the worst. I’m learning that there’s nothing straightforward about stretching. I’ve been stretching for months with very short-term relief. All of a sudden on a road trip this week, stopping at every rest stop to stretch, it kicked in! It’s not about stretching, it’s about relaxing. Standing tall, pelvic tilt, bending at the waist, relaxing. A meditation. I can feel the hamstrings and calves responding. Exciting! Read More
I love hearing, That’s a great idea! I’ll try it. I’m delighted when I say it. This week my chiropractor said, You need more hydration, try drinking one more glass of water this week, and two more next week. I’m tickled when I counsel someone and they say Great idea, I’ll try it, as happened this week. I spoke with a friend with a rare disease in a new community, Maybe you could focus next on building a new care team, Those are making a difference of one.
There’s another thrill to being a good leader and making a difference for a team: Family first. What do you need to get the job done? What do you recommend? We’ve got to have fun doing this. Some make a difference for communities, nations, the world with products and policy. For example, Obamacare provided health insurance for 20 million people; the Internet allowed virtual supportive communities to form. And there’s in between, as when a client says That’s a great idea to my proposal, we could use this platform to promote caregivers’ coaching each other and the caregivers could earn some money at it? Read More
I crave connection and respect. Not crave as a thirsty man crawling toward a mirage of water in the desert or a person constantly begging others to fill an overwhelming desire that can never be filled. Rather a need that sustains me and renews me. Connection and respect fuel my inner fire so I can meet the challenges of life, continue to contribute, and have space to be curious. It helps that I’m an extrovert. Connection and respect don’t cost much day-to-day, yet they’re long term commitments and investments. Connection and respect can be tough to sustain. I get crabby and self-centered, especially when I or someone I care for is sick or stressed. Then being an extrovert doesn’t help. Yet banking the investment of connection and respect pays dividends.
I’m impressed with how difficult it is to ask for help. We have as much difficulty responding to offers to help as asking for help. When our boy, Mike, was dying, people came out of the woodwork, offering to help. How to respond? How awkward! We had to add it to our weekly family care management meetings. What do we need? What do we say? Well, we didn’t think we needed much that those offering help could do. So we said that we needed food, companionship, transportation. We always needed a laugh and prayers. Caring helped. Read More
I’m not a complainer or worrier-at least not often or for long. Comparatively, I have little to complain or worry about. Yet, this week I struggle with pneumonia, try to regain strength, not hurt myself coughing and not being a jerk or a burden. I’m also turning 65 and enrolling in Medicare. I keep dwelling on the amount of effort it takes to be or support someone who is sick. What is that effort? I’ve come up with six questions anyone who is worrying asks themselves. You’ll see in the pie chart below that I’ve arbitrarily assigned a percentage to how much I think most people worry about each question. (No science here, no evidence, just my thoughts)
Who benefits from the murkiness of finding the prices of prescription drugs? Clearly not patients and caregivers.
Today, I’m taking two potentially lifesaving drugs – azithromycin and rituximab.
According to GoodRx.com, azithromycin, prescribed for my pneumonia, has a cash price of $35 with a $10 copay cost to me. Took me 10 seconds to find this.
I’ve spent more than four hours and I still don’t know how much the rituximab, a chemotherapy infusion for my multiple sclerosis, costs or will cost me. I’m turning 65 next week and I need to select a Medicare Advantage Plan. I spoke with several insurance companies. None can (or will) tell me the cost of Rituximab to them or to me. They differ whether it’s a formulary drug (covered at all). They differ whether they consider it a drug covered under Medicare Part D (see below) or an infusion, covered under Medicare Part B. If Part B it may be included in my premium.
This week I connected a patient with expertise in billing with a patient at the tail end of chemo struggling with huge unexpected bills. I introduced a cancer survivor with web design skills to a patient advocate setting up a new blog.
I’m struck by the breadth and depth of professional skills I encounter as I explore e-patient communities. (e-patient: empowered, engaged, enabled, equipped). e-Patients have lived experience. I encountered the concept of lived experience first while working in the mental health world. According to the Mental Health Coalition of South Australia (MHCSA) a lived experience worker is “a person who is employed in a role that requires them to identify as being, or having been a mental health consumer or carer.” Read More
I read a post this week on the Society of Participatory Medicine’s blog about a nightmare attempt to obtain medical appointments as new patients. You’ve faced the poor listening skills, conflicting information about the availability of appointments, lack of sharing information about you within the clinic or insurance company, poor or no follow-up, waiting, waiting, waiting, that the author describes.
I’ve dealt with it, too, as a patient, caregiver, clinician, and quality management leader. So, how do health care clinics and insurance companies know about the challenges their patients/customers live through? The most common is through surveys. Surveys are blunt (not sharp) and fairly useless. Most health plans require clinics to administer the CGAHPS Clinician and Group Survey. Three questions on the survey include:
You can answer Never, Sometimes, Usually, Always.
Most health plans survey patients about health plan service:
See, not very informative. A score might be more than 80% of patients say Usually or Always? That could mean that 19 of 100 people responding are unhappy with their experience. Wow. How can anything be changed based on that result? Read More
I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. Read More
