Saturday, March 16, 2013

The Canadian Diabetes Charter

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 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.

The 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 exception.

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

1 comment:

  1. I like your questions that you have posted so far. I kind of have answers to some of them, not great ones, but answers.
    For number one, the level of care and access to medical devices differs depending on where you live because Health Care is the responsibility of the provincial government. I believe that money is transferred from the federal government to the provincial governments to administer health care programs. That being said, there should be standards of practice and equal level of care across the country. Your question is quite valid and should be asked! Number 2, medical professionals are required to gain a specified number of continuing education credits per year by their licensing body. However, they do not specify what type of education this needs to be. Ie, a person could do all their credits in cardiology. Again, very valid point to would make more sense for health care professionals to be required to take a certain number of credits from a number of areas/year. For me, your third point is the most important to me. We were given my daughters diagnosis, and weren't even offered the opportunity to talk with a Social worker, counsellor, support group. Although I live in a very small town, I believe the emotional support that is needed in a new (and exisiting) condition is quite high.
    My own points would include Nurses in schools that have children with chronic diseases; the need for a personalized health care plan within the school (to my knowledge this isn't a requirement in newfoundland); improving the criteria to qualify for the disability tax credit. I mean really, how can you manage this disease without counting carbs, I can't believe this isn't included in the 14 hours/week to manage...which is a totally different point. I wish we only spent 14 hours per week managing our daughter's diabetes!
    I applaud you in your participation in this group, I hope they are truely willing to listen to those who are affected by diabetes!