“What Are the Other Parkinsonisms?” Webinar, Aug 18, 9am CA time

The Michael J. Fox Foundation has a terrific monthly — Third Thursdays — webinar series. Finally they are getting around to the atypical parkinsonism disorders next month, Thursday, August 18th at 9am California time. (….though it seems that there will still be a Parkinson’s Disease angle on the webinar.)

If you are not able to participate in the one-hour webinar live, I encourage you to register for it so that you’ll receive notice when the recording is available online. Usually the recording is available within a week of the webinar.

Copied below are the details from the MJFF website.

Robin


Michael J. Fox Foundation
Third-Thursday Webinar
Thursday, August 18 @ 12 p.m. ET / 9 a.m. PT

In this webinar we’ll discuss atypical parkinsonisms of corticobasal degeneration, multiple system atrophy, Lewy body dementia and progressive supranuclear palsy. What are the similarities and differences? Could treatments for one condition help those with another, including Parkinson’s disease?

Click here and then on the orange REGISTER NOW button:

www.michaeljfox.org/page.html?hot-topics-webinar-series

“Smarter Ways to Teach Family Members Medical Skills” (online videos)

This article from last Monday’s Wall Street Journal notes that there’s now an effort to train family caregivers in providing medical skills to family members at home.  Over 43 million adults are providing care at home for a family member — almost half of them perform medical or nursing tasks.  Seventy-five percent manage medications, including administering IV fluids and injections.

Three video resources available for this type of training include:

Family Caregiver’s Video Guide to Managing Medications
created by UC Davis, AARP, and United Hospital Fund
April 2016
three videos (27 minutes total)
www.aarp.org/nolongeralone

Caregiver College
created by Family Caregiver Alliance
November 2015
seven 7-minute video clips
www.youtube.com/playlist?list=PLa1B8idpEiEplIAyH_swKvZvTQ9yAKH6t

SafeAtHome – Caregiver’s Guide to Caring for a Dementia Patient at Home
created by Family Caregiver Alliance
June 2015
20 minutes
www.youtube.com/playlist?list=PLa1B8idpEiEq0sSCLNxW8f4hsJ0s75etM

Here’s a link to the article:

www.wsj.com/articles/smarter-ways-to-teach-family-members-medical-skills-1468860460

The Informed Patient
Smarter Ways to Teach Family Members Medical Skills
As care at home becomes more common, families are learning complex tasks traditionally performed in hospitals or nursing homes
Wall Street Journal
By Laura Landro
July 18, 2016 12:47 p.m. ET

Robin

 

Medicare Hospital Ratings Coming Soon

A recent article from Kaiser Health News, khn.org, notes that the Centers for Medicare & Medicaid Services will be releasing soon ratings of 3662 hospitals in the US, based on 64 measures.

Info on these 64 measures are already public on Medicare’s Hospital Compare website, medicare.gov/hospitalcompare.

The star ratings will “provide people a broader picture,” according to Medicare’s statement.  According to the KHN article, the “government originally planned to release the star ratings in April [2016] but postponed it after a majority of members of Congress echoed the [hospital] industry’s concerns.”

How do the 3662 hospitals rank?  According to the KHN article:  “Medicare said that based on its current data, 102 hospitals would receive the best rating of five stars, 934 would get four stars, 1,770 would receive three stars, 723 would be awarded two-stars and 133 would get the lowest rating of one star.”

KHN analyzed the data and found two things I thought were interesting:

#1 – “CMS rates shows 22 percent of safety-net hospitals were rated above average — four or five stars — compared with 30 percent of hospitals overall. Twenty-nine percent of safety-net hospitals were rated as below average, with just one or two stars, while 22 percent of other hospitals received those lower ratings.”

#2 – “Teaching hospitals also received lower scores on average.  … The teaching hospitals include large academic medical centers that often top the lists of best hospitals put together by groups like Healthgrades and U.S. News & World Report.”

Here are links to the two lists of hospitals mentioned above:

* Healthgrades – Top Hospitals for 2016
www.healthgrades.com/quality/top-hospitals-2016

* US News & World Report – Best Hospitals/Ranking & Advice
health.usnews.com/best-hospitals

So….stay tuned.

I’ve copied the full Kaiser Health News article and a link to it below.

Robin

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khn.org/news/medicare-prepares-to-go-forward-with-new-hospital-quality-ratings/

Medicare Prepares To Go Forward With New Hospital Quality Ratings
Kaiser Health News
By Jordan Rau
July 22, 2016

Despite objections from Congress and the hospital industry, the Obama administration said it will soon publish star ratings summing up the quality of 3,662 hospitals. Nearly half will be rated as average, and hospitals that serve the poor will not score as well overall as will other hospitals, according to government figures released Thursday.

The government says the ratings, which will award between one and five stars to each hospital, will be more useful to consumers than its current mishmash of more than 100 individual metrics, many of which deal with technical matters. The hospital industry, however, fears the ratings will be misleading and oversimplify the many types of care at the institutions.

The Centers for Medicare & Medicaid Services said it would release the ratings “shortly.” In a preemptive effort to rebut criticisms, it noted its analysis showed “hospitals of all types are capable of performing well on star ratings and also have opportunities for improvement.”

The stars are based on 64 individual measures of hospitals that are already public on the government’s Hospital Compare website. Those include mortality rates, the number of readmissions, patient opinions, infection rates and frequency of medical scans like MRIs.

Medicare said that based on its current data, 102 hospitals would receive the best rating of five stars, 934 would get four stars, 1,770 would receive three stars, 723 would be awarded two-stars and 133 would get the lowest rating of one star. Another 937 hospitals would not be rated because the government did not have enough data to properly evaluate them.

“The star ratings provide people a broader picture,” Medicare officials said in a statement. “CMS used a similar approach to simplify complex quality information on other healthcare quality reporting websites, such as Nursing Home Compare, Home Health Compare, Dialysis Facility Compare and Medicare Plan Finder.”

The ratings factor in the mix of patients at a hospital, so those with a high proportion of sicker patients are not supposed to rate lower than those that handle more run-of-the-mill cases. The analysis showed hospitals of different sizes also did about the same, and critical access hospitals — small, mostly rural facilities — performed slightly better overall.

Medicare did not consider the relative wealth of patients. Its analysis showed hospitals serving large swaths of low-income people tended to receive lower star ratings. An analysis by Kaiser Health News of the hospitals that CMS rates shows 22 percent of safety-net hospitals were rated above average — four or five stars — compared with 30 percent of hospitals overall. Twenty-nine percent of safety-net hospitals were rated as below average, with just one or two stars, while 22 percent of other hospitals received those lower ratings.

Teaching hospitals also received lower scores on average. A third were rated with only one or two stars, while only a fifth of other hospitals received fewer than three stars, according to the KHN analysis. The teaching hospitals include large academic medical centers that often top the lists of best hospitals put together by groups like Healthgrades and U.S. News & World Report.

Dr. Janis Orlowski, an executive at the Association of American Medical Colleges, said the fact that so many prestigious hospitals fare poorly in the star ratings is a signal that Medicare’s methods are flawed.

“These are hospitals that everyone in the know tries to get into, so we need to be careful about the consequences, that this star rating can be misleading,” Orlowski said. “Putting the information out at this time is not in the patient’s interest.”

The American Hospital Association also expressed continued concerns.

The government originally planned to release the star ratings in April but postponed it after a majority of members of Congress echoed the industry’s concerns. Debra Ness, the president of the National Partnership for Women & Families, a nonprofit in Washington, urged Medicare to post the ratings before the end of the month.

“We believe great thought and care went into development of the Hospital Star Ratings Program,” she wrote on the group’s website.  “If needed, the program can be adjusted over time. But now is the time to move forward and give consumers a tool that will allow them to assess which hospitals do the best job of providing the care they need.”

A few resources for “healthwear” (clothing for disabled)

There was an article in the WSJ a couple of weeks ago on clothes for the disabled.  Now it’s the turn of the New York Times.  The NYT article notes that 1 in 5 of every American adults is disabled.

In the NYT article, these “healthwear” businesses and products are mentioned:

* MagnaReady, magnaready.com:  shirts with magnetic closures instead of buttons

* Care and Wear, careandwear.com:  shirts and arm bands designed for use for people with medical ports

* Runway of Dreams, usa.tommy.com:  children’s clothing from Tommy Hilfiger incorporating MagnaReady and velcro

Note that the NYT article also discusses clothing for refugees so not all of it is about clothing for the disabled.  Here’s a link to it:

www.nytimes.com/2016/07/21/fashion/solution-based-design-disabled-refugees.html

Fashion’s Newest Frontier: The Disabled and the Displaced
Unbuttoned
New York Times
By Vanessa Friedman
July 19, 2016

Robin

Self-compassion: a test, some guided meditations, and on-the-job self-care for caregivers

Someone in our support group recently told me about Kristin Neff, PhD, who has written extensively about self-compassion and has a nice website at self-compassion.org. Most of us seem to have an easier time showing compassion towards others but not ourselves.

To see where you fit on the self-compassion spectrum, you might take this short test:
self-compassion.org/test-how-self-compassionate-you-are/

Her website also offers several guided meditations:
self-compassion.org/category/exercises/

And, she talks about on-the-job self-care for caregivers. I’ve copied her “exercise” on that below.

Robin

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Exercise 8: Taking care of the caregiver
Kristin Neff, PhD
self-compassion.org/category/exercises/

If you work in a care-giving profession (and that certainly includes being a family member!), you’ll need to recharge your batteries so you have enough energy available to give to others. Give yourself permission to meet your own needs, recognizing that this will not only enhance your quality of life, it will also enhance your ability to be there for those that rely on you. For instance, you might listen to relaxing music, take a yoga class, hang out with a friend for an evening, or get a massage.

Of course, sometime our time is limited and we aren’t able to take care of ourselves as much as we’d like. Also, one limitation of self-care strategies is that they’re “off the job,” and can’t be done while you’re actually caregiving. Thus, it’s important to also engage in “on the job” self care. When you’re feeling stressed or overwhelmed when with the person you’re caring for, you might try giving yourself soothing words of support (for example “I know this is hard right now, and it’s only natural you’re feeling so stressed. I’m here for you.”). Or else you might try using soothing touch or the self-compassion break. This will allow you to keep your heart open, and help you care for and nurture yourself at the same time you’re caring for and nurturing others.