55 minute video: Breakfast with the Chiefs Andre Picard/The Globe and Mail :“What Do Patients Want? A Critical Look at Health Care Delivery in Canada.”

includes discussion on Patient Safety (group)/patient centered groups

Reminder: A patient's perspective on ovarian cancer as a chronic disease—Devaluing a survivor's challenge Caridad Vera-Garcia

Note: Cary is now with us 'in spirit'

Reclaiming the Patients Voice and Spirit in Dying: an Insight from Israel - Bioethics

(original article) full access: patient involvement Active patient involvement in the education of health professionals

response to prior letter: HINI and Cancer

Note/background: Please reference prior blog postings Nov 1-5th, 2009  regarding the apparent lack of access to care of an ovarian cancer woman and the systemic issues surrounding the H1N1.

email response (better late than never) December 2, 2009 4:57 pm:

"Thank you for writing and bringing to my attention your concerns regarding the government’s handling of the H1N1 vaccine roll out. As you are aware, the vaccine is now available to all members of the public.
Your views and comments are appreciated and helpful to my work as Leader of Canada’s New Democrats.
Between the conflicting messages, queue jumping, and sole sourced contracts; we feel the federal government could have done a better job handling the distribution of the vaccine. NDP Health Critic Judy Wasylycia-Leis continues to be our lead on this issue and you can review her work by visiting: http://www.judywl.ndp.ca/news/health.

Looking forward, we will continue to press the federal government to take a proper role in helping Canadians stay healthy and providing access to treatment when needed through:

- promoting healthy living
- hiring and training more doctors and nurses
- creating a pan-Canadian home care program
- ensuring prescription medicines are affordable

If you are interested in our plans to improve health care in Canada, I encourage you to check for details here: http://www.ndp.ca/platform/healthcare.

Again, thank you for sharing your views and comments as they helpful to my work as Leader of Canada’s New Democrats. All the best.

Sincerely,
Jack Layton, MP (Toronto-Danforth)
Leader, Canada's New Democrats"

Hope with More: In Their Own (Ovarian Cancer) Words

reposted from September 11th: 

Hope with More: ‘In Their Own (Ovarian Cancer) Words’©

September 11th, 2009
Author: Sandi Pniauskas


Still today, less than 20% of ovarian cancers are diagnosed in early stages, primarily one of luck or happenstance. Ever-present are the realities that ovarian cancer is a disease most often en-shrined in significant suffering. This is our past and this is our current reality.

Reflecting on our women’s most intimate and unpublished thoughts, feelings and opinions tells, ‘In Their Own (Ovarian Cancer) Words’, what still has not and is not being heard. This is not the ‘cute’ side of ovarian cancer, although there are moments. Each day brings a kaleidoscope of emotions. With each passing day, the struggles of the fine line between Hope, Reality, Wishes, Expectations and Dreams remain.

We speak as one without boundaries and indeed in many respects ovarian cancer IS the silent killer. Against our will and with significant sacrifices, this ovarian cancer invariably defeats the body and the spirit. I challenge you to listen, as we have, so silently, for so long. A decade of intimate involvement with ovarian cancer women, their caregivers and communities, has most often elicited truisms that stand out. There is Trust between Survivors & Caregivers and secondly, there does not exist, in our world, an ‘ordinary’ ovarian cancer woman.

Trust between ovarian cancer Women and Caregivers is: Hope with More.

Should we choose we might learn much based on these personal conversations. These few words represent a microscopic-sampling of millions of words and thoughts - all valued - all cherished – sometimes dismissed. Sometimes too difficult to b/hear. Sometimes with a huge sigh of relief and humour.

In our communities, many moments are spent living-with-ovarian cancer, often through the eyes of others. As a tribute to our ovarian cancer women, living-with or in-spirit, these are their words to you with that special privilege of Trust and my own personal admiration… in their own words. Some are stunning. All are real.

Age:
A: Ovarian cancer for xx-something ‘dummies’.
L: Older than whom?
I: How dare they write me off.
S: I have wished it was me, not her going thru this . Though I am younger and could be stronger, the truth is I am such a coward compared to her.

Angels & Hope & Friends:
B: I am alive today because of my guardian angel {an ovarian cancer survivor).
B: Spent all day in emergency because I was having a lot of trouble breathing. Good news no heart
attack, no stroke.
R: Please visit me today as I think this is it…. Please visit me today as I think this is it….(X many) … Look after yourself and when you have time, contact me at: 1 – 800 – HEAVEN ext R … Message to R: The line has been kind of busy ....
Y: Friendship therapy is something that has not been explored by the medical community, but it is important for cancer survivors. When I was on chemotherapy, I might just sleep over some days because during those days I was too sick to eat or get up. I was surprised I was enjoying not only the good companies, but also the food when other survivors came to visit me.
L: …will be shutting down the computer now...we’ll see each other completely on the other side.
C: I agree, let’s go, we can. (do this)
C: I think I will lean heavily on philosophy as I get closer to dying. It's that or religion. There's always food! Maybe I'll just eat my way through the fear of death!
S: I have to say that I am not being very gracious here and at the same time not feeling that I should
apologize either. It makes me feel that I am supposed to be wishing you the best when all I really am
wishing for is that you could stay.

CA125:
S: I was 3x years old when I was diagnosed…. I have never had a CA 125 done to my knowledge.
S: It doesn’t matter what the research on the CA125 says - it’s all we have.

Humor:
J: (Dr.) said if his wife was going for (treatment) this is who he would send her to. I hope he likes his wife!!!!
S: I should have read the bio first - psychiatry and 'suck it up' don't really go together.
S: Thanks for living so long! (woman with 150~ + chemo/multiple surgeries TO woman with no recurrence)
L: This disease may have taken my ovaries but has replaced them with a ‘set of balls’.


Husbands/Partners:
D: I watched, as the verdict was read, a tsunami-like wave pass right over my wife’s head, leaving her completely stunned.

Knowledge:
A: Ovarian cancer for xx-something ‘dummies’. (worth repeating)
S: In order to be taken seriously, we (patients) need to understand everything about ovarian cancer.
C: I decided that starvation is the easier death by far….
B: I once read that ovarian is the most complicated cancer, so I figure that I (and the rest of us) must be really special.

Impact:
B: “You need a surgeon and you need one now”. I left his office naively thinking that something would be done and that we could go back to trying to have children.
L: (upon my death) please thank everyone in our group...they are so special.
R: (favourite quote) "Since my house burned down I now have a better view of the rising moon."
F: I always wonder which (ovarian cancer friend’s) death will put me over the edge. I think I am close.

Value and Sense of Worthiness:
K: I feel I am nothing for what this disease is doing to my family (control)….I am not a nothing...I am really a somebody...somebody with ovarian cancer.
L: Let me tell you what is on my mind without cutting me off with "You are so negative!” It is not that I am being negative, these are the facts and I am being realistic.
D: (word games) I Am No Thing. I Am. Not a Thing, or a title, nor am I a summary of accomplishments. I am No Thing because I am not static, not uniform, not in a box, not a disease, not a political party. I am not a snapshot.
C: (published) “Devaluing a Survivor’s Challenge”

We are: PhD’s, healthcare support professionals, lawyers, bankers, physicians, teachers, social workers, computer specialists, nurses, realtors, bankers, e-patients...…Daughters, Sisters, Mothers, Grandmothers

*As matters of integrity, names have not been disclosed, albeit many have given their express permission to do so (past and present)

Primary Care Physicians' Views of Routine Follow-Up Care of Cancer Survivors

CO Early Release, published online ahead of print Apr 20 2009
Journal of Clinical Oncology, 10.1200/JCO.2008.20.4883


Primary Care Physicians' Views of Routine Follow-Up Care of Cancer Survivors

M. Elisabeth Del Giudice,* Eva Grunfeld, Bart J. Harvey, Eugenia Piliotis, and Sunil Verma
Department of Family and Community Medicine and Dalla Lana School of Public Health, University of Toronto; Sunnybrook Health Sciences Centre; Ontario Institute of Cancer Research and Cancer Care Ontario, Health Services Research Program; and Divisions of Hematology and Medical Oncology, Department of Medicine, Odette Cancer Centre, Toronto, Ontario, Canada.

* To whom correspondence should be addressed. E-mail: lisa.delgiudice@sunnybrook.ca

Purpose: Routine follow-up of adult cancer survivors is an important clinical and health service issue. Because of a lack of evidence supporting advantages of long-term follow-up care in oncology clinics, there is increasing interest for the locus of this care to be provided by primary care physicians (PCPs). However, current Canadian PCP views on this issue have been largely unknown.

Methods: A mail survey of a random sample of PCPs across Canada, stratified by region and proximity to urban centers, was conducted. Views on routine follow-up of adult cancer survivors and modalities to facilitate PCPs in providing this care were determined.

Results: A total of 330 PCPs responded (adjusted response rate, 51.7%). After completion of active treatment, PCPs were willing to assume exclusive responsibility for routine follow-up care after 2.4 ± 2.3 years had elapsed for prostate cancer, 2.6 ± 2.6 years for colorectal cancer, 2.8 ± 2.5 years for breast cancer, and 3.2 ± 2.7 years for lymphoma. PCPs already providing this care were willing to provide exclusive care sooner. The most useful modalities PCPs felt would assist them in assuming exclusive responsibility for follow-up cancer care were (1) a patient-specific letter from the specialist, (2) printed guidelines, (3) expedited routes of rereferral, and (4) expedited access to investigations for suspected recurrence.

Conclusion: With appropriate information and support in place, PCPs reported being willing to assume exclusive responsibility for the follow-up care of adult cancer survivors. Insights gained from this survey may ultimately help guide strategies in providing optimal care to these patients.