125 posts in the category “Fibromyalgia”

Defining “good” health care: 2 new studies reveal patient perspectives

Posted March 28th, 2018 by

Do you feel you’re getting the best possible care from your doctor? In two recent studies, PatientsLikeMe members answered this question and shared their perspectives on the health care they’re receiving. The results show that while patient opinions about care and provider performance vary according to condition, diverse patient groups agree on the top factors that define “good” care. Here’s the full scoop…

Poll results: Good care is harder to get for some conditions

Last month, 2,559 PatientsLikeMe members took part in a 6-question poll about doctor-patient relationship and what it means to get “good care.”

The results suggest that patients with certain conditions, especially those living with fibromyalgia, PTSD and MDD, are less satisfied with their care.

The poll also found that patients with these conditions are less likely to:

  • Believe their provider has fully explained treatment options. Just 47% of fibromyalgia and PTSD patients and 53% of MDD patients agree their provider has done so, compared to 63% of patients living with ALS, MS and Parkinson’s disease.

  • Report that they are receiving the best possible health care for their condition. Only 40% of fibromyalgia patients, 49% of PTSD patients and 45% of MDD patients believe they are receiving the best possible care, vs. 66% of ALS patients, 61% of MS patients, and 57% of Parkinson’s disease patients.

  • Change providers even though they think they are not receiving the best care or effective treatment. More than half of these patients (53% of PTSD and 56% of MDD and fibromyalgia patients) have stayed with a provider in this situation vs. just 31% of ALS patients and 36% of MS and Parkinson’s patients.
Why is this the case?

“A positive or negative experience with care could be provider-related, but also related to the fact that patients living with ALS, MS and Parkinson’s often have access to condition-specific specialists or centers of excellence while those living with other conditions do not,” said Sally Okun, PatientsLikeMe’s VP of Policy and Ethics. “This makes it even more important that patients advocate on their own behalf to ensure all avenues to get good care are being used.”

See the full poll results at news.patientslikeme.com.

The patient definition of “good care”

Prior to the poll, more than 200 people (including PatientsLikeMe members, clinicians, researchers and more) shared how they define good health care and what matters most to them, from taking an active role in their care to accessibility and cost. PatientsLikeMe researcher Emil says, “Now more than ever we need to pay attention to that patient role.” In this video, he breaks down the key study takeaways:

 

Are you getting the best possible care? 10 Ways to tell

Based on what the study uncovered, we turned the 10 major factors that define good health care into a check list. Speaking about the poll and the survey, Sally Okun says, “These complementary studies give a snapshot of what is most important to patients, and give patients the tools to find providers willing to meet the characteristics of good care.”

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“What do you mean I can’t bring my service animal in?” Member Craig talks life with fibromyalgia and service dogs.

Posted November 27th, 2017 by

Craig Braquet (woofhound) is living with fibromyalgia and severe degenerative disc disease, the result of a multi-car accident in 1979. We first introduced Craig when he joined the 2015-2016 PatientsLikeMe Team of Advisors, but today we introduce his dogs, Luna, Oliver and Dakota (check out their cameo in Craig’s recent #MoreThan video). See what Craig has to say about training his own service dogs, taking them into public places, and how they’ve helped him manage his condition.

Service dog for fibromyalgia

Craig with his service dogs Luna (left) and Oliver (right).

Finding motivation to “get out of bed and rejoin society”

“Luna is where we began my journey with personal service animals,” Craig says. Luna, a Great Dane, is now retired from being a service animal, though she’s still one of Craig’s closest companions. “Before Luna, I stayed at home, my pain levels were more than I could handle. I spent most of my days sleeping, trying to heal my body from the stresses of constant pain, my illness had overshadowed me.”

Craig says Luna gave him a new purpose in life, and he found that training her to be a balance and stability service animal gave him the motivation to “get out of bed and rejoin society.” Regular exercise is beneficial for people living with fibromyalgia, and Luna helped make that effort worthwhile.

Since Luna, Craig has adopted Oliver and Dakota, also Great Danes. “Oliver took to his Service Animal Training just like Luna did,” he says. “He learned quickly and looked out for me in public, he’s calm in noisy, stressful situations and doesn’t pay attention to any other animals when he has his service gear on.”

When service dogs are turned away: Know your rights (and responsibilities)

While the American Disibilities Act (ADA) has clear guidelines about the rights of those with service animals, Craig has found that not all establishments are aware of these laws. On a recent trip to Truth or Consequences, a small town in New Mexico, he was not allowed to bring Luna into a local hot springs spa, even when he explained that she was his service animal.

Unfortunately, Craig has had several similar experiences with his dogs. His advice on what to do in this situation? “When you have a legitimately trained service animals and you are turned down by an establishment, you’ll get the quickest assistance if you demand your rights and require them to call the police instead of you making the call. This way the police can help to educate the proprietor when they arrive.”

Craig says that while knowing and understanding your rights as a service animal owner is important, so is the behavior of your animal, “the most important thing here is to make sure you have an impeccably trained service animal before you attempt to somewhat ‘force’ your rights. Even a trained Service Animal can be denied access if the dog is unruly, loud, or poorly trained.”

How to get a service animal

Service, therapy and emotional support animals: What’s the difference?

  • The ADA says a service animal is “any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual or other mental disability.” Other species of animals, trained or not, aren’t considered service animals. The ADA doesn’t require professional training for service animals, and people with disabilities have the right to train the dog themselves (but state and federal laws differ, so make sure to read up on your state’s laws). Check out this FAQ to learn more.
  • A therapy animal is an animal that’s been trained to help lift the spirits of people other than its handler. Therapy animals often visit places like hospitals and nursing homes to cheer up the people living there, though their handlers are not given public access rights like those of service dogs and their owners.
  • Emotional support animals provide companionship, relieve loneliness, and can help with depression, anxiety and other mental health conditions, but don’t need to have any special training to perform tasks that assist people with disabilities. While emotional support animals are often used as part of a medical treatment plan to provide therapy to their owners, they’re not considered service animals under the ADA.

On PatientsLikeMe

See who’s tracking their experience with service animals on PatientsLikeMe, and check out what some members have said in more than 150 treatment evaluations on pets.

FIbromyalgia and service dogs

“Always for the better”

When we asked him how his animals have impacted his health, Craig simply said “always for the better.” Their companionship provides him with physical and emotional support, and they act as “the antidote to any stressful day.”

Do you have a service animal? Share in the comments how they’ve impacted your life and your health. And join the conversation with others discussing this in the PatientsLikeMe forum

 

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