Friday, November 28, 2008

How to Ask for what You Want...And Get it!

Another challenge faced, and overcome!

To Whom it May Concern,

My name is Pamela L. I have a son, Joseph, who is 2 years old and has cerebral palsy. For the past year we have been receiving Nutrisure pudding through our provincial drug program, the Ontario Drug Benefit card. Each month we would receive 16 4-packs of pudding. Our son is on a diet of strictly Pediasure Plus and Nutrisure pudding, the pudding is the only solid he will tolerate. To date we have been successful at avoiding the insertion of a g-tube as he will take the Pediasure by bottle and pudding (chocolate only!) by spoon.

Last month I called our regular pharmacy to refill our prescription for the Nutrisure. When I picked it up I was given only 3 4-packs and told that the product has now been discontinued, and that Ensure pudding would take it's place. When the pharmacy attempted to order chocolate Ensure pudding through their wholesaler, McKesson, they were told that they can only get the butterscotch flavour and they weren't sure if or when they could get chocolate. In addition, it did not appear that ODB would be covering the Ensure pudding.

I have called your office in Montréal many times over the past 2 weeks and spoken to several very nice customer service representatives, but unfortunately they have not been able to help me. One person did offer to send me some $5 coupons, however I am not able to find chocolate Ensure pudding at any of our major pharmacies, including Shopper's Drug Mart, Zellers, Costco, Walmart and several grocery store chains. They all use the same wholesaler, and therefore cannot order the pudding as they are being told it is not available at this time.

I have a 2 year old disabled child who relies on this pudding. I find it irresponsible for your company to suddenly discontinue the Nutrisure pudding without sufficient notice to customers, and not having an alternative available. Furthermore, I have contacted the Ontario Ministry of Health today and they have informed me that your company has not even applied to have Ensure pudding covered! Should this not have been done prior to discontinuing the Nutrisure?

The situation for us has now become critical. We hd a bit of a reserve of the pudding built up but it is now gone. I encourage you to act responsibly and please send me some chocolate Nutrisure or Ensure pudding as soon as possible, work with your distributors to get the supply flowing and complete the necessary paperwork to have the new Ensure pudding covered under ODB. I am sure my son is not the only child who relies on this product.

I anxiously await your prompt response.

Pamela L.

And late yesterday I received a voicemail message from someone at the head office, saying they would like my address because they will be sending me some chocolate Ensure pudding, free of charge :) Thank goodness for that...Joey gets 8 cases of Pediasure Plus a month (which would cost $40 each) and 16 packages of pudding a month (at $8/package). At $438/month this kid would eat us out of house and home! We're not eligible for much in regards to provincial support, because it is all income-based, so this help has really been crucial for us. When you decide to have a child you're usually prepared for the cost of a crib, stroller, clothing and all the other accessories, but I don't think anyone banks on almost $450 per month in food at the age of 2!

In other news, yesterday Joey and I met with his physiotherapist and orthotist, to examine how he's doing with his SMOs (the little inserts in his shoes we have made last February). The darn kid keeps growing! He's completely outgrown his orthotics and the shoes, so we had new casts made right away and should have new SMOs next week.

Also, Joey's physio has been really torn about whether he needs SMOs (the small inserts he has now) or AFOs (ankle/foot orthotics, the bigger inserts that come up to the knee). In an ideal world she would like him to have both, for different purposes, but given that SMOs cost about $500/pair, and AFOs about $2000, and the provincial government would definitely not pay for both, it was a tough decision. However, luckily Jason and I both have decent benefit plans through our employers, and have enough coverage to pay for the SMOs. So we're going to get those now, and in February we'll get the AFOs which the government will pay 75% of, and our benefits will pay the balance.
And on another positive note, Joey is doing extremely well at nursery school, with the fantastic support of Gramma Phyllis! What a difference less than 2 months has made...Joey's reaction to other children is COMPLETELY different, he doesn't mind the noises anymore, which makes life a whole lot easier for everyone, and more enjoyable for Joey I'm sure. Yesterday I received a copy of Joey's class picture that was taken last month. As soon as I looked at it I of course zereod in on Joey right away. You've all seen lots of pictures of him, and he is pretty photogenic if I do say so myself, but in this particular picture his mouth is hanging wide open and my immediate thought was "Oh my, he really sticks out as the 'special needs' kid". But then I looked at the other children in the looks like a class full of special needs kids!!! What a laugh it gave us! I guess when you try and take a picture of a group of 2.5-5 year-olds it doesn't tend to turn out well. Almost all of the kids had their mouths gaping open, or their eyes rolled up looking at the sky. That made us feel a lot better! I wish I could post the picture here but since this is a public blog I'm not really comfortable posting pictures of other peoples' kids without their permission, so you'll just have to trust me on this ;)

- P, J & J

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