Belonging to your health team. Seems oxymoronic. Of course you belong to your health team. There is no health team without you. Yet sometimes people feel out of control, not accepted by their team. Maybe it’s because it’s not their team. Professionals and caregivers sometimes act as if or really feel that they are the team, separate from the people they serve. Today I received an e-mail report from a friend describing the meetings of the team caring for her husband with ALS (Lou Gehrig’s disease). The hope, the optimism, the details of how to manage, the welcoming, warmed my heart. The key is the welcoming across a threshold. Before the professionals weren’t part of their team. After they were. Just like that. Same day, I received an email describing the separation, frustration, lack of communication, of a friend caring for her husband who had surgery. Although the outcome was good – successful surgery – she seemed glad to be away from those professionals. They were never part of the team. How do we as ePatients welcome professionals onto our team? How do professionals acknowledge that they have joined ePatients’ teams?
My super power is accepting what is. Doesn’t mean I settle for what is. After all I’m a catalyst for change. Accepting and appreciating what is makes for a solid foundation and a realistic start. I can’t get from here to there if I don’t know – and value – where here is. I give thanks for my super power. I didn’t do anything to get this super power. No degree for it, no lightening strike – I was born with it – lucky genes and family history, felt safe growing up. I give thanks for (value) clean drinkable tap water, regular garbage pick-up, laden grocery shelves, the sun shining as often as it does. I give thanks for my sons, their wives, my grandkids, my extended family, my home life, my inspiring co-workers, my health and especially, my honey. I give thanks for the health problems our system has – I don’t live in a refugee camp outside Syria.
I give thanks, for you, my loyal readers. I look forward to this virtual community every week that welcomes my musing on the magic levers of best health. Happy Thanksgiving!
Working in Quality Management in health care, I’m driven by 3 things: 1) that we do no harm, 2) that we meet our standards and commitments, and 3) that we continually improve the care we give the people we serve. Health care is risky business. People are in need, their defenses are down. Providers of health care use to tools of medicine, surgery, and life style change to try to affect health. Nothing always just does as hoped. There are side effects to everything, even life style changes – For example, increased activity can lead to injuries. Anyway, this month I’ve focused on Monitoring and Alert systems at work. We serve people with complex challenges in programs funded and regulated by many state agencies, insurance companies, and contracts. Families, neighbors care about and are affected by the people we serve. How can we monitor everything to make sure we meet our commitments and do no harm? How do we alert the people who run the programs and are served by the programs when we find something that can be improved? A challenge is monitoring effectively and efficiently. We could spend a fortune monitoring thoroughly, but then we’d have no money left to give the services. It’s a balance of science and art.
Monitoring and alerting for personal health is similar. We don’t want harm to come to ourselves or our loved ones. We want to keep our fingers on the pulse of our heart, our activity, our mood, our discomfort, etc. We’d like to know if we are approaching danger before it hits us. We could get tested for everything on the chance something gets uncovered-think full body scans, genome analysis. We could stay indoors to avoid an accident outside-boring. For monitoring I keep a spreadsheet of my weight, miles walked, miles on the stationary bike, hours playing saxophone, hours of sleep. When any of them (except weight) go down that’s an alert. When my wife tells me to go sit down because I’m exhausted and unstable on my feet, that’s an alert. Monitor and alert – a magic lever of best health.
Drop a pebble in and watch the ripple. Mesmerizing. Several ripple experiences this week on health journeys. A colleague caring for parents as they slip toward dementia. Challenges for the parents, challenges for their children. A friend whose parent had a stroke canceled a scheduled meeting. Children sick – parents can’t make it to work. Health is not just about me or the person identified as sick or disabled. Ill health affects my family and my community as much as me. Ripples upon ripples.
World-wide: person, family, community all affected by immobility. My wife and I attended a benefit for the Free Wheelchair Mission, a program we have supported for several years. Approximately 100 million people in the world can’t walk and need wheelchairs. Many conditions can result in the inability to walk such as cerebral palsy, muscular dystrophy, polio, diabetes, amputations from war, violence, and disease. Most of the people needing wheelchairs can’t afford them and live in locations without paved roads. Don Schoendorfer, an MIT trained mechanical engineer designed a wheelchair using easily found, easily maintained, and easily shipped materials. The wheelchairs cost $72. The Free Wheelchair Mission has shipped over 750,000 wheelchairs to 90+ countries. Getting a wheelchair changes the receiving person’s life dramatically as well as their family’s life, and their community. Again, an astonishing ripple.
Honor the caregivers, help the helpers.
I test drove a new neurologist this week. I’m still shopping. Two factors affected my continued shopping: no spark between us and no portal / doesn’t communicate by e-mail. The practice was cool and efficient, the physical exam was thorough. Nothing asked about me, my experience with MS, my goals, my challenges. No relationship building. I asked why I should choose this practice. “You want me to sell myself?” Nothing after that. I can’t imagine care without e-mail or a portal anymore. I rely on it so much. Their form asked me how I wanted to receive information: what to leave in a message, who I gave permission to share information with. Impressive, butn ot enough to buy though.
On the other hand my experience with my current MS Clinic this week was different. I needed a refill on my MS medication. I sent an email to the administrative person – he’s was out of the office on vacation. The nurse I worked with has left. I couldn’t select the covering physician because I haven’t seen him yet. I emailed the portal’s tech support who explained the rules, but fixed it for me. Helpful IT! Then I contacted the covering MD who responded in 4 hours that he had renewed my script. And he looked forward to meeting me (I don’t have an appointment with him yet.) I think I’ll test drive him next.