IMPORTANT DISCLAIMER: Note: Simcoe County Insulin Pump Group and it's organizers makes no warranty nor implied warranty for any of the contents and information understood from it's meetings, speakers nor for anything contained within it's correspondence nor opinions expressed herein nor otherwise and does not intend for any information provided by it's presenters or participants at it's meetings and within it's correspondence to supercede in any way any advice from health care professionals. Simcoe County Insulin Pump Group does not endorse any brand, model nor manufacturer of Diabetes Management equipment nor supplies. +++++++++++++++++++++++++++++++++++++++++++ In these minutes: - Bill 55 Updates! See how you can help! - Lack of funding for Type I Diabetes - why do Type IIs get all the attention? - Pumper baby sitters! A great way for pumper teens to make money! - Discussions on difficulties: transition for children from the children's health care system to the adult one - Using honey as a topical prep for site insertions! +++++++++++++++++++++++++++++++++++++++++++ See our (your) website for Simcoe County Insulin Pumpers for meeting information etc.: http://www.insulin-pumpers.ca/SCIP/ Also see the National Insulin Pumpers Canada site: http://www.insulin-pumpers.ca +++++++++++++++++++++++++++++++++++++++++++ SIMCOE COUNTY INSULIN PUMPERS MEETING # 20 June 14, 2004 7:00 pm - 9:30 pm We had a total of 11 people attend. As always there were refreshments and snacks. Thanks once again to Zehr's for their kind use of their Community Room! +++ Bill 55 updates: Paul gave us the latest news on Bill 55. It's currently before the Social & Justice **sub-committee**. This sub-committee decides which Bill will be considered next by the Social & Justice committee. We are awaiting word on the date (if any) that Bill 55 will be considered. Until then it is still importrant to keep reminding your MPP's through letters, emails, visits, calls etc., that we are not forgetting about this Bill and that we expect it to be passed without being watered down! All the threats to the complete passage of this Bill are still there. In the coming weeks; Insulin Pumpers Canada will distribute envelopes and stationary to people thru the Ontario affiliates so that we can all submit written submissions (whether one page or 100) to the Social and Justice Committee. Why use standardized stationary? The organizers of Simcoe County IP and Hamilton IP have been advised by "experts on Government affairs" of the following: - the Social and Justice Committee has autonomy to decide what it wishes to consider and what it wishes to ignore in studying the need for a Bill - the Social and Justice Committee may not open it's mail containing our submissions until months after the Bill has been considered and decided upon - using envelopes and letterhead which look the same, the Committee's staff will notice that there is an inordinate quantity of mail coming in with the same logo etc on it. Hopefully the will see these letters / submissions as being too many to brush off and thus give priority to our submissions If events warrant, we will notify you and hold a special summer meeting on Bill 55! We'll keep you posted! For the latest information frequently check: http://homepage.mac.com/dp66/SCIP/Bill55.html +++ Beckwith Petition up to over 3,500 signatures! Keep up the great work, gang and remember these may play a significant part in getting Bill 55 dealt with! +++ Lack of funding for Type I Diabetes - why do Type IIs get all the attention? (Herein are opinions expressed by members): The above discussions on Bill 55 lead to an extensive discussion on the apparent lack of funding for Type I Diabetes - not just for research but especially for health care of Type I's. This was initated by the understanding we have that the CDA is not putting any effort into supporting Bill 55. Apparently most health care providers see it more appropriate to invest funds into "prevention" and support for Type II's and choose to see Type I's as "kids and people whom are too small of a market" to justify a larger budget. This is why myself and the co-founder of Insulin Pumpers Canada started the organization: we obtained zero support from the CDA in our attempts to try insulin pump therapy. Really, other than the existing pump groups in Ontario, Montreal and Nova Scotia; there is no organization ready to step up to bat for and provide information for Type I's using the pump. What it all seems to boil down for us is that Type I's only comprise 10% of the Diabetes market and thus the money game lends itself to supporting the larger Type II market at both the not for profit level and public health care level. +++ Pumper baby sitters! A great way for pumper teens to make money! We were pleased to welcome Melany Hellstern of Disetronic Canada to our group! She is a mother of a 12 year old boy whom uses the pump and came to sit in on our meeting as such. Melany provided us with many tips and tricks she's learned as a mom of a pumper kid - thanks! Melany passed on to us her idea, to have teens who use the pump market themselves via our pump groups as "pumper baby sitters"! Since many parents are often too worried about leaving their Type I or pumper child with a baby sitter who has no idea how to manage Diabetes; any pumping teen who takes a baby sitting course could fill this need! It was suggested by some that they could charge a "premium" too! Melany stated that she'd feel better leaving her child with a pumper teen than with an adult whom knows nothing about pumping or Diabetes! +++ Discussions on difficulties: transition for children from the children's health care system to the adult one The diabetes health care system for the kids is much more kind, understanding and comprehensive than the system in place for adults. Apparently many pediatric endos keep seeing some patients after they reach the age where they'd usually move into the adult system because these endos know what the poor kid will face and the lack of support that is out there for them. Many younger people experience situations where they end up seeing a professional whom has never dealt with anything but Type II or whom have little life experience and empathy (textbook knowledge only). Many kids experience "culture shock" and humiliation upon entering the adult care world. Many give up and never go back to a diabetes doc or clinic due to the "emotional abuse" they encountered on their first visit. There is nothing in place to help kids make the difficult transition from the care and support they had as teens into the adult world of diabetes care. Here are some tips that were discussed by the group: - the patient must be assertive and not compliant when dealing with health care professionals - Doctors are NOT Gods! - keep in mind that **you** are he doctor's or clinic's customer and that you ***deserve*** to be treated like one. Your questions and concerns must be fully answered and you must feel you are being served well. - change clinics or doctors if you cannot obtain satisfaction - you are in charge of your diabetes; the health care professionals aren't - never, never endure any type of value judgements! This can be especially damaging emotionally and psychologically for younger people! Examples of "red flags": Using words like "good" or "bad" to describe blood sugar or other test results. Using or implying that a person is a "good" or "bad" patient. Using labels such as: "you are a diabetic". Getting lectures instead of options presented to you. Any kind of guilt trip. +++ Using honey as a topical prep for site insertions! One new tip and trick was brought to the floor by Melany: Use honey! To treat hypos? Maybe. But better yet as an antibiotic! Her son had trouble with redness around his insertions sites and there was apparently no procedural issue with insertion etc. As a last resort she used "Mannuka" honey from New Zealand as a topical ointment put around the insertion area and under the adhesive. You can eat it too! Most health food shops know of this honey and some stock it. BTW: It significantly reduced her son's issues with infection and irritation. +++ The draw for the night for two at Whitestone Lake resort is postponed until our September meeting! One night for two people pending availability at Whitestone Lake Resort! Package worth: $180. Check out their web site: http://www.whitestonelakeresort.com +++ General Discussions followed: - Several prizes were won in our free draw. - Various adhesives for making sets stick to the skin during physical activity: "Stomahesive, SkinTac and NuSkin are some that work well. It was reported that Stomahesive is only available locally at the Shoppers Drug Mart on Bayfield St., North in Barrie. -Simcoe County IP needs volunteers! What for? -to submit meeting reminders to local publications, TV and radio -to contact Rogers TV Community Channel to see if they could do a small segment on us -to help out in minor other ways -to be a libraian for our small library! Please contact me if you want to lend your talents! Darrin Parker: insulinpumper@sympatico.ca See ya in September! +++++++++++++++++++++++++++++++++++++++++++ NEXT MEETING: Zehr's SOUTH END Community Room, 620 Young St., Barrie. (Young St. @ Big Bay Pt Road) MONDAY, September 27, 2004 7:00 pm - 9:30 pm +++++++++++++++++++++++++++++++++++++++++++ Please feel free to volunteer your own special talent to this growing group! Drop me or Paul an email if you want to help, out for a few minutes a month! +++++++++++++++++++++++++++++++++++++++++++ Please spread the word about your group! Ideas, topics, issues for future meetings? CONTACT: Darrin Parker: insulinpumper@sympatico.ca Paul Beckwith: p.c.beckwith@sympatico.ca Website: http://www.insulin-pumpers.ca/SCIP/ +++++++++++++++++++++++++++++++++++++++++++ IMPORTANT DISCLAIMER: Note: Simcoe County Insulin Pump Group and it's organizers makes no warranty nor implied warranty for any of the contents and information understood from it's meetings, speakers nor for anything contained within it's correspondence nor opinions expressed herein nor otherwise and does not intend for any information provided by it's presenters or participants at it's meetings and within it's correspondence to supercede in any way any advice from health care professionals. Simcoe County Insulin Pump Group does not endorse any brand, model nor manufacturer of Diabetes Management equipment nor supplies.