I have been busy lately and my blog has fallen to the wayside a bit. I haven't had a lot to say either, life with diabetes has been pretty average lately, the highs, the lows, the juice boxes, the honey, the corrections etc.
I have been approached by the CDA to be a part in a Delphi Panel of stakeholders in Diabetes Care in Canada, thank you to the CDA for finally showing that people with diabetes are MAJOR stakeholders in diabetes care!!! The point of this group is to develop questions and thoughts to provoke conversation in different regional discussion groups across the country with the ultimate goal is to create a Canada-Wide Charter for people living with diabetes.
I have my differences with the CDA. I have bitten my tongue several times with how I have been treated by the Association and how the programs I care dearly about have been treated. I had my worries about how much money is actually going to executives and management and how much had been going to programs. I had my concerns for years and years. Recently I have struck another bump with them. I have been biting my tongue because I think this project is really important and I don't want to miss out on the CDA actually accepting input from people living with the disease and who are actually active in the community! I think this is a BIG step forward for the CDA, so my differences with the organization are on the sidelines for this project. Definitely not gone and forgotten, and maybe one day I will write about my recent experience with the organization. But for now...it can lay.
So, do you live in Canada? What do you think should be included in a Charter? If you lived in Canada what would you want to be protected and improved in diabetes care and perception?
Here are the questions I have submitted so far:
1)Why does the level of care and access to medical devices and services differ depending on what part of Canada I live in?
2)Why are medical professionals not required to update and advance their knowledge in diabetes?
3)How can we move forward in advancing emotional support for those living with diabetes?
As a person with Type One in Nova Scotia who has been pumping since
1999, I have noticed there is a great divide in our provincial health
systems. I now live in one of two provinces where pumps are not
available under a provincial health plan. Ultra long acting insulin has
JUST been added to our archaic diabetes care program! I have paid out of
pocket for two insulin pumps now and that is no easy feat. It is also
something that just isn't possible for a lot of people. There is a 10-12
month wait to see an endocrinologist in Nova Scotia, I have friends in
Alberta, Ontario and BC that get in to their clinic in under three
months and have had pumps paid for by their provinces.
I think education on clearly defining the responsibilities of the media,
large companies and organizations in marketing diabetes has to start.
Lifting the blame begins by making it a faux pas for individuals, companies,
organizations and products to be marketed and prompted as "curing" or
"getting rid of" or even controlling diabetes. It is nobodies business
to do any of those things except researchers and the patient's health care team.
last question is a big one for me. There is no support or recognition
in Canada of the psycho-social toll diabetes takes on an individual. It
has been proven that there is a link between living with diabetes and
depression, eating disorders other mental illnesses. There should be
specialized care programs for people dealing with these extra
complications of life with diabetes. There are programs set out for
those with other long-term, chronic illnesses and diabetes should be no
So, we need to end the stigma by effectively removing the notion
from the public that it is EVER ok to comment on another person's
health. People with all types of diabetes deserve the same respect
people living with asthma, crones, kidney disease, lung disease,
lymphoma etc all receive.
I think my opinion may differ a bit on the previous as far as the
desperate need to always separate type one and two. I think doing this
creates a further divide and ease of finger pointing. You know, the type
one didn't do it to themselves but the type two did? That's a common
thought process in the diabetes community and it isn't right or fair. I
think with this type of disease we have to approach the big picture and
make sure the point is driven home that it is flat out unacceptable to
finger point or comment unless you are part of a health care team for
the patient. Together we are stronger.
Do you have anything you would like me to add to get the discussion groups focusing on OUR diabetes? Let me know in the comments!
You can hear more of me talking about diabetes in Canada on DSMA Blog Talk Radio right here