Monday, June 27, 2011

Canadian Blood Services-The Sequel

The last 20 or so entries in here were drafts I had written From January until late May and published in June about the journey I went through in order to become a living donor. When I started this back in the fall of 2010, I had hoped to chronicle as many relevant steps of my journey as possible to raise awareness about living donation, and also give my friends and family some peace of mind about my decision. As the blog progressed, I also found it to be a great outlet to share my thoughts, fears and feelings about donating a kidney. Because I knew the living donor program is new in Canada and even newer in Alberta, I also thought it would be an easy way to  discuss some of the challenges and opportunities within the program, to maybe help build a better system and process. The blog also became a huge support mechanism for me as it allowed me to make connections with other donors as well as people in the global "Kidney Community".

In January of 2011, a former coworker sent my blog to the local Global TV station. A longtime reporter there, David Boushy, contacted me and they wanted to do a story in conjunction with the Kidney Foundation, Foothills Hospital /Alberta Health and myself about living donation. I brought this to the attention of the program (and shared a link to my blog) and they told me that Global would have to navigate through Alberta Health communications and that it was unlikely they would participate-which I understand. The Kidney Foundation of course was all for doing something to promote awareness. I let Global know where were stood and left it at that.  A couple of days later I got a call from the social worker assigned to my file at the living donor program.  She let me know that if I talked to the media further or continued to blog my file would be put on hold and I would be unable to donate. She attributed the ban to a social media policy handed down from Canadian Blood Services and mailed me a copy of it. I was told I could resume blogging once I had compelted the surgery or was deemed medically ineligible to donate.

What I read in the policy did not seem to match what they were telling me.  When I questioned a few points, it was reiterated that this was their policy and I needed to abide by it.  Not wanting to risk my place in the program, I let it go and kept blogging without publishing and for the most part steered clear of other social media outlets.

Fast forward to June. Surgery is done. I am released from hospital and start to publish the drafts I had saved over the last five months. The first one to be published was the Open Letter to Canadian Blood Services. Because I wanted to make sure that I was upfront with them about the policy, I emailed them a link. However they were already on it as their social media scans had picked it up. Within a day I had a message from Ron Vezina, Director, Media Relations and External Communications for CBS. We arrange a call to discuss the policy and what had happened.

During the call, Mr. Vezina made it clear that from their perspective, I should have been able to continue blogging throughout the journey. Their policy was a guideline (just as I had thought). I did need to make sure I did not identify anyone else involved in the donation or the chain for privacy reasons (understood). He mentioned that I should be mindful of the risks associated with being more public with my story, but that with my communications background, he felt I understood those risks and how to mitigate them.

So where did things go wrong?  I did ask Mr Vezina if there was a chance that CBS people involved with the donor programs on the national task force may have miscommunicated the guidelines and their objectives.  He said it was possible a and that he'd follow up to ensure that it was being communicated effectively. I think it's also quite possible the guidelines were under communicated, leaving them up to too much interpretation at the hospital level. The other explanation would be that Foothills Administration/Alberta Health were uncomfortable with the blogging and used the CBS policy as something to hide behind. It wouldnt surprise me given some other things that occurred while I was in hospital but we'll get to that in a future post. In the last couple of weeks I have let those involved with the living donor program at Foothills know that the ban was in error and that I hope they aren't continuing to tell patients to avoid it. They did not specifically comment on that back to me. They did thank me for the information but I welcome further discussion if I can help them strike a balance between privacy and having an online outlet for donors and recipients going through kidney transplantation.

For the record I am very pleased how CBS handled this-they were professional, quick to respond and are willing to take steps on their end to ensure they are not hindering anyone from promoting awareness of living donation or being a part of an online community. My respect for them has been renewed. I sincerely hope that Foothills Hospital and any other donor program in Canada takes  the time to review what their policies really are and the impact their actions can have on people like me.

I've been asked by people if I am angry about this. Not really.  Disappointed? Yes.  Frustrated? Yes. But its done and there is nothing I can do about it now. I've been able to talk about it. At least one group involved (CBS) has listened and I truly believe are doing their part to make things better. All I can hope for is that this doesn't happen again to someone else.

Over the coming days I will get into details about what the donation surgery was like, my recovery and what I learned along the way. Thanks for reading :)

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