Are patients the health care system’s free labor?

Have you ever felt overburdened by the amount of paperwork, phone calls, e-mails, appointments, etc., associated with navigating the health care system?  If so, you are not alone.

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In the article, “Unpaid, stressed, and confused: patients are the health care system’s free labor,” Sarah Kliff describes how the health care system can place considerable burden on the patient him/herself. This realization came about from her own experience managing a chronic foot injury. As Kliff explains:

What I didn’t understand was the burden patients face in managing the health care system: a massive web of doctors, insurers, pharmacies, and other siloed actors that seem intent on not talking with one another. That unenviable task gets left to the patient, the secret glue that holds the system together.

For me, this feels like a part-time job where the pay is lousy, the hours inconvenient, and the stakes incredibly high. It’s up to me to ferry medical records between different providers, to track down a pharmacy that can fill my prescription, and to talk to my insurance when a treatment gets denied to find out why.

Click here to read the full article.

Will Any Patient Advisor Do?

cog

In her blog post, Alies Maybee explores whether patient advisors are interchangeable entities – not unlike a cog in a wheel. Can patient advisors move from role to role and be seamlessly substituted for one another? Are patient advisors swappable? A portion of what she quickly discovers is found below.

As I’ve come to know some of my fellow advisors, I have concluded that in terms of skills, attributes and experience related to the business of advising, we are not all the same.

As advisors, we sometimes assess our involvement and our experience of a group differently. I venture to suggest this is in part because we are different types of advisors. Sometimes it’s like we weren’t all at the same party.

Our healthcare partners don’t often see our experience of involvement in the same way we do. Not only that, I sense they may make an assumption that all advisors experience the involvement in the same way.

My hope is that understanding the different types of advisors will bring a new level of clarity to how we choose to interact and assess those interactions.

Click here to continue reading.

Patient/Family Partners Wanted

Are you a Patient Family Partner in Canada? If so, you are invited to join a focus group or interview in person (Vancouver) or via telephone or webinar. To find out more about this exciting opportunity, click on the image below.

Call for Patient Family Partners

Please Note: The deadline to express your interest in participating in this project is May 31, 2016.

A Picture is Worth a Thousand Words?

Have you ever found yourself at a medical appointment trying desperately to explain to your physician what and how you are feeling? Unfortunately, no matter how hard you try, nothing you are saying is coming out right and any utterances you make are not conveying the message you want. Rather than struggling to verbalize your thoughts, why not draw them instead? This idea is explored in Damien Pollard’s article Magic Eyes.

Trapped inside her own body

Imagine being conscious of what is happening around you but not being able to respond in any way. Imagine listening to doctors talk about you and the grave prognosis they held for you, without them realizing that you could hear every word.  You want nothing more than to tell people that you are okay but there is no way to do so because you are not asleep but not awake.  This is the reality Brisa Alfaro found herself in. Click here to read Alfaro’s story.

At 32, Brisa Alfaro experienced a brain-stem stroke, one that leaves patients paralyzed but painfully aware of the world.( National Post)

Survey: Pain Patients and Treatment at Hospitals

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Over 1250 acute or chronic pain patients participated in an online survey by Pain News Network and the International Pain Foundation that focused on hospital pain care. Based on the results obtained, many pain patients felt that the treatment they received from a hospital was far less than ideal. As one pain patient stated, “It’s so bad that I will not seek treatment in an ER or hospital unless I really feel like my life is in jeopardy. They do not get it, they do not listen, and they do not care.” Another individual wrote, “I refuse to go to ER. It will end up killing me because I know how sick I am, but I would rather die than deal with ignorant, condescending doctors and nurses.” To read more about this study’s findings, click here.

A Historic Day in Canada?


The long-awaited and much-debated doctor-assisted-dying Bill C-14 was tabled in Parliament today. According to the bill, individuals who are “suffering intolerably” and whose death is “reasonably foreseeable” will be able to access doctor-assisted death, but “mature minors” and the mentally ill will not. In addition, advance consent for individuals with degenerative disorders, including dementia and Alzheimers, will be disallowed.

Not surprisingly, there are many people who feel that this legislation is far too restrictive and limiting. However, according to Jane Philpott, Canada’s Health Minister, “We believe this legislation is the best approach to ensure that dying patients who are suffering unbearable pain have the choice for a peaceful death and the vulnerable are protected.” What are your thoughts?

Click here to read more about what some see to be a “historic day.”

“The Difference Between Care & Caring”

The above video – “The Difference Between Care and Caring” recently won a number of local and national awards, including Best in Show at Edmonton’s ACE Awards.

What an incredible night for the Royal Alexandra Hospital,” Andrew Otway, president and CEO of the Royal Alexandra Hospital Foundation, said. “This was a video that really came together so beautifully and effectively because of the staff and leadership at the Royal Alex. We are so immensely proud of this hospital, the people who work here, and the difference they make each day.”

Click here to read more about the video and the family involved.

“Patient Included”…or Not

It is becoming more common for patients to be invited to medical-related conferences. However, in an open letter to “Patients Included” conferences, Carolyn Thomas points out why many of these invitations are problematic.

Dear medical conference organizers,

Thank you so much for inviting me to participate in your conference later this year. It is a real honour to be asked to help represent the patient voice at your prestigious event. I know that inviting patients alongside your impressive international roster of well-respected physicians is new to you. So congratulations on embracing the increasingly important “Patients Included” movement sweeping through medical conferences.

But as I once wrote to patient blogger (and conference speaker) Carly Medosch:

“I can no longer afford to be ‘honoured’ by any more medical conference invitations.”

Allow me to explain:

Click here to continue reading Thomas’ letter.