Saturday 26 April 2014

Advocating - Where to start?

My type 1 diabetic daughter recently had a clinic appointment. This appointment consists of a half hour visit with a nurse, dietitian and a paediatrician, respectively. 

I've struggled with this clinic for over a year now, for several reasons. 

First, I have to call them to be seen and there are often very long stretches between appointments. This allows for frustration and higher A1C's because there isn't consistent professional support. The clinic we came from booked us every three months, without my having to chase them.  You also knew when your next appointment was two and a half months in advance. It was great to be able to plan so far in advance. 

The next problem I have with our current clinic is lack of professionalism and knowledge. The nurse we have seen the last few times has asked the most ridiculous questions, leaving me to question -- and trust -- her knowledge of this tricky disease. I'll give you an example of her most recent faux pas:  six months ago, we were struggling with low blood sugars. Changes were recommended (that didn't work and I was left with no support to figure it out). Anyway, she asked me how many changes we made to my daughter's basal (background) insulin rates. Wow. I was flabbergasted. Anyone who deals with this disease knows multiple changes to this rate were made in the last six months. This blatant lack of knowledge certainly does not garner a trusting relationship. 

While we see a paediatrician for these appointments, they don't specialize in endocrinology. The clinic we came from had three. Not only did they specialize, they were also part of a research team for type 1 diabetes. The knowledge base and experience was incredible. If they recommended a change, it worked. 

Our current dietitian is quite helpful, but she's filling a maternity leave. The permanent dietitian is not helpful nor does she seem particularly knowledgeable when questioned. 

Needless to say, we both leave the clinic frustrated, angry and thoroughly disgusted. 

So where does advocacy come into play?  I'd like to see this clinic re-vamped with a paediatric endocrinologist, knowledgeable nurse(s), with one specializing in insulin pumps, and keep the helpful dietitian. I'd like my daughter to be seen every three months and not have to chase anyone for an appointment.  It would be great to be able to call someone -- if only for a second set of eyes -- and have them understand the readings and recommend changes that work. 

We are a growing city that services a large portion of northern Alberta. Our children deserve to have better care -- without having to travel four hours, or more. Many people from our area choose to travel this distance because it is a better clinic. 

But, where to start?  Who are the powers that be who can help see these changes are made?  Is it AHS (Alberta Health Services)?  Who in AHS would I need to speak with?  Or is it someone higher? A provincial health minister? Or maybe the federal health minister?  Maybe it's as simple as contacting someone with the Canadian Diabetes Assiciation?  Anyone out there know?  

I don't know where to start. But I'd sure love to see these changes happen. 

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