[Good News on April 11! For a great update on this story, click here. ]
On Monday, April 4, I sent the following complaint to the Alberta Ombudsman. I am awaiting a reply, although I did get a “Thanks for your complaint” letter.
Our son, Isaiah, is 10 years old, and a resident of Alberta. Since birth, he has been fed solely by G-Tube. Due to excessive surgery and his own physical make-up, he cannot handle large volumes of food in his stomach and is fed continuously by a portable pump which he carries on his back in a backpack. These pumps and all supplies related to them are provided to children through the Pediatric Home Nutrition program, located at the Stollery Hospital in Edmonton.
At this time, the volume of food Isaiah needs to intake is 1,645 ml of PediaSure Plus per day. The most he can comfortably handle is approximately 180 ml/hour while up and active. We also feed him during the night. The most he can comfortably handle while lying down is 80 ml/hour. We feed him 705 ml per night at this rate for about nine hours, then set his portable pump to a rate of 180 ml/ hour and feed him for a little over 5 hours a day. This allows for times when he does not have to carry the pump, which is a strain on his back and gets in the way of physical activities. He also tends to concentrate on his school work better when he is not carrying the pump, so we allow for him to take it off during the school hours where he is required to apply himself to an assignment or test.
The type of pump that Isaiah uses is an EnteraLite Infinity. The Infinity pump is able to handle the activity exerted on it while being carried on the back of a ten year old boy. On Thursday, March 31, his pump began to give us problems. A slight crack had formed on the closing mechanism of the pump. This reduced the tension of the tubing within the rotating gear, incorrectly signaling that something was wrong. The pump then refused to run, and it set off an alarm. This happened intermittently, and required that we acquire a replacement pump.
The process to receive a replacement pump from the Home Nutrition Program is to request it from their clinic at the Stollery. Typically, they have spare refurbished pumps available to families, and circulate these within the families in the Capital Region. We called the clinic on Friday morning, and were told that they had no pumps. We told them that we could not function without a pump, and they replied that were no portable pumps available. The best they could do was provide us with a non portable pump. My husband drove in to pick up whatever it was that they could provide, and when he arrived, he was surprised to be given an older version portable EnteraLite pump. Apparently while he was on route, another parent had dropped off the pump, and the clinic passed it on to us.
He took it home and, to our great dismay, we discovered the next morning that the pump’s power cord did not work, and within hours, it was dead and completely useless. It was now Saturday morning, and we had no pump at all. This meant that we now needed to feed Isaiah manually with syringe, somehow giving him his day’s worth of food a little at a time. He could only comfortably handle 60 mls at a time, so we proceeded to feed him every 20 minutes, for 27 times.
I then began trying to see if we could acquire a pump, any pump, that could allow us to feed him overnight.
• Starting with Alberta Health Link, I was directed to a nurse, who then gave me the number to Community Access Program.
• They then called the Pediatric HomeCare nurse, but gave her the wrong number.
• I called them a few hours later, and they tried again.
• She called them back to tell them I needed to contact the Dietician on call at the Stollery.
• I called the Stollery Information line, and requested the Pediatric Dietician on Call.
• They forwarded me to the kitchen, where I was told they couldn’t help me.
• They would, however, contact the Pediatric Dietician on my behalf, and I waited once again before finally receiving a call from her.
• After speaking with her at length (this was now my fifth time in explaining what our concern was) she said she would try to acquire a pump for me.
• She called back a short while later stating that she was unable to access the pumps in the Home Nutrition Program. She had tried finding one from one of the Wards, but couldn’t even get one that way. The only recourse, she said, was to take him in to Emergency and see if they could help me.
My husband and I actually were preparing for speaking at a public event of which we could not avoid the following morning, and we were unable to take Isaiah in to the hospital that night to sit for potentially hours when there was no guarantee that it would resolve anything. We managed to give him everything he needed manually, and did the same on Sunday, but intended to try to solve the problem on Monday once the clinic opened again.
On Monday morning, we sent some food with him to school, explaining as best as we could how to administer the food to him. We were reluctant to give them too much, because it is impossible for the school administration to be interrupted every 20 minutes to draw a syringe and give him food.
When I got to work, I left a message with Home Nutrition indicating that the pump they gave us was broken. Two hours later, they called back, surprised and apologetic for the situation. I asked for my old pump back, but they had already sent it away for repair. Now there was no option.
After a significant amount of discussion, they provided me with a Kangaroo pet pump. Although this pump is indicated as a “portable” pump, it is not something that Isaiah can use during the day. The “portable” means that it can run on battery power, so it can be disconnected from the wall power outlet. When set up to administer food, it is huge, cumbersome, and too heavy for him to carry. Considering that he needs to be hooked up to it for 5 and a half hours a day, it is simply unusable.
As I tried to explain this to the staff at the Clinic, I discovered the issue that was creating this difficulty for me.
The Procurement Services of Alberta Health Care have been working on a contract to replace their pediatric enteral feeding pumps for the entire province. This has been in the works since well before Christmas, and because it was in process, the Clinic was forbidden to purchase any new pumps for children until the contract had been signed. What this meant, however, is that as pumps wore out for the families who were using them this last year, there were less and less spares to replace them. When the last spare was used, the Clinic borrowed from Calgary. When that was no longer an option, families were told, “Wait.”
Staff at the Clinic had thought that it would be resolved in the new year, and were anticipating that they would be able to provide the desperately needed pumps to the growing list of families at that time. Unfortunately, however, the people in the contract process were dissatisfied with certain aspects of the contract, and negotiations stopped.
It is now April, and there is no resolution in sight. Currently, our family is now ninth on a waiting list for a pump replacement. Once the elusive contract is signed, we will need to wait for at least a month until these needed pieces of equipment are made available to us.
Although I tried to explain that this was unacceptable, there was absolutely no way that they could provide me with what we needed.
I then found a Canadian supplier, and have purchased a pump for $1,100 out of our personal emergency fund, which will be delivered to my office on Wednesday morning. When I spoke with the salesman in Vancouver about the fact that we would have to wait for a month once the contract was signed, he was amazed, indicating he had ten pumps in his inventory alone, sitting there waiting for any order. This was particularly aggravating to me, because children need these. They aren’t hairdryers. They are necessary equipment for these kids to function with some level of normalcy in their everyday lives. There are pumps out there, only a signature away from the kids who need them.
When they found out I had ordered a pump, the Home Nutrition Clinic suggested that I might be able to be reimbursed for it through my own personal insurance. Whether or not this is even an option to me is irrelevant, however, because AHC simply has not given my son the medical equipment they have promised him.
I tried to find out how I might speak with someone involved in the contract negotiations, but was told not to bother. I pressed it repeatedly, and was told that my only recourse was to speak with Patient Concerns, but it wouldn’t go anywhere.
This is completely unacceptable. Children in our province need these pumps to feed them. Although not all children are in my son’s situation, the fact that AHC could not provide my son with what he needs is preposterous.
I not only want our pump to be reimbursed, but I want to raise light to this significant issue, and I want the people involved with this contract to give it the attention it deserves. There is no excuse why families, who are typically exhausted and overtaxed as it is are placed in this situation. They are often not capable of advocating for themselves against a bureaucratic system that is slow and disconnected with day-to-day life.
This contract needs to expedited, and these children need their pumps. Please help them.