An open letter to Michael J. Fox

Dear Michael J. Fox,

Your Curb Your Enthusiasm appearances powerfully highlight the challenges and misconceptions those with chronic conditions face on a daily basis.

You’ve shown how one person’s story can make an impact and you have said that we’re given so few chances in this lifetime to make a real difference and change the world.

As you read this letter, millions of people around the world join with you in reading it as well…adding their memorable stories online and sharing with you their experience, living with chronic illness. All of these people are trying to make a difference.

I am asking you to share a simple story with Patient Commando. Maybe one that you might think is insignificant to others, but demonstrates nevertheless, how gritty it gets behind the hospital curtains along with the compliment of hilarity that sometimes is coupled with that experience. The more it is about thoughts and feelings, anxiety or relief, the better.

Together we can amplify the voices of those labelled with chronic condition and overcome what author Chimamanda Adichie coined as “the danger of a single story”: the idea that there’s only one way to tell a story and understand it.

You’ll find people similar to yourself, going online [...] continue the story

Patient feedback provides focal point for future of care at KGH

It cannot be denied that Kingston General Hospital has received some less-than-favourable feedback over the years. Now, hospital officials are looking to connect with the public in order to better understand the needs of patients and ultimately implement programs and practices that will be as effective as possible.

On the evening of Nov. 10, KGH held a public event called Patients Know Best, which saw members from the hospital’s Patient Advisory Council, formed in February of 2010, speak about their own experiences at the hospital and how they are helping to shape the future of care delivered there.

“Input from patients is critical to how we make improvements in hospital settings and for the whole experience of patients,” said KGH Vice President for Clinical Administration and Professional Practice and Chief Nursing Officer Eleanor Rivoire.

Advisor Lidia Dorosz gave a heart-felt account of what it was like to witness her mother be neglected, often to the point of abuse, by nursing staff at the hospital as she lived her final days.

“I am a council member because I want to make a difference,” she said. “I want to hold people accountable…it’s time that we (are able) to feel safe about going to KGH.”

Overall, Dorosz said [...] continue the story

We Listen. We Care. | Compassion & Choices

Leaders in the care of patients who face serious and life-limiting illness have designated November as National Hospice and Palliative Care Month, prompting more stories about both options. The Milwaukee Journal Sentinel gives a very good overview of palliative care and hospice in this Q&A with Dr. Diane Meier. The theme of this year’s observance is “We Listen. We Care.”

Listening is the No. 1 objective of our End-of-Life Consultation team (EOLC). Do you or someone you know face a serious illness? Do you have questions about palliative care or hospice? A Compassion & Choicesrepresentative will gladly answer any questions you or your loved ones have about what these options mean and how each can improve quality of life. Anyone can access an EOLC counselor at no cost by calling 800-247-7421.

Caring about the patient, especially at the end of life, is a key objective of our educational and advocacy efforts. Our goal is to change the focus of medical providers to the patient rather than the patient’s illness. This is the core of our principles for patient-centered care. As individuals face the end of life and try to navigate the health care system, their own values and choices should be paramount. Our seven principles — focus, self-determination, [...] continue the story

On a New Frontier of Patient Engagement | Preface

Cross-Country Check In with Cycle4: National Relay

In an earlier blog post we introduced the C4WM: National Relay and Team Cyclebetes rider Aryssah Stankevitsch.

Aryssah had just embarked on a cross-country journey to raise $15,000 for the Juvenile Diabetes Research Foundation.  Having been diagnosed with Type 1 diabetes only 2 years earlier, a long-distance athletic event was a formidable undertaking. It took the Relay just 13 days to reach Toronto from Vancouver for a mid-point media event. Here we were finally able to meet Aryssah face-to-face to find out what drove her to spend a month in the saddle, to raise money, and speak out about her experience as a diabetic.

“I want to be worth imitating.  I believe that with any sort of ailment that you’ve had, you can fight a battle a lot harder when you’re going uphill than when you’re on flat terrain.”

Pat Com: How long have you been a Diabetic? Aryssah: I was diagnosed when I was 19. I’m 21 now so I’ve been living with it for 2 years. I had been hypoglycemic before (which means low blood sugars), so I would load up on sugars before I did athletic activities. I guess my doctor didn’t take it as a warning sign of diabetes as no one else [...] continue the story