Shortly into the new year, I received, while at work, a phone call out of the blue from the Clinical Nurse Leader at the PEI Cancer Treatment Centre. I had never spoken to this person previously, but she had some news for me: Because PEI has not been able to find a replacement oncologist/hematologist, and they had no recourse but to send me to a specialist in Moncton, I and my specialist “do not have privileges" at the PEI Cancer Treatment Centre”. I will also no longer have access to the Nurse Practitioner at the Cancer Centre whom I was set up with for continued maintenance.
To be clear, I will now have bloodwork and any transfusions that I require at the Queen Elizabeth Hospital in Charlottetown, but no complete transition plan has been put in place, so it has been up to me, my GP, and my specialist in Moncton to sort out how this will work.
I posted about this on Facebook, where it gained significant traction. Unfortunately, what I posted did not make clear to everyone who shared my post that I would continue to receive bloodwork and transfusions at the QEH instead of service of any sort at the Cancer Treatment Centre, where I have been a patient off and on for 14 years. I later deleted my original post and replaced it with an update clarifying the situation.
Since making that initial post and its subsequent update, I've had a couple of experiences that have added credence to my concerns.
During my final blood transfusion at the PEI Cancer Treatment Centre, I was approached by a couple of nurses who spoke to me in hushed tones, not wanting to be overheard. Apparently, my post had made the rounds among some health care professionals, and these nurses thanked me for what I'd posted, told me that the issue needed a voice, and noted that, due to their employment, they were not in a position to speak out about something they saw as a problem.
The second experience occurred during my first blood transfusion at the Ambulatory Care Section of the Queen Elizabeth Hospital. The person in charge of either the entirety of Ambulatory Care or a section of the department - I wasn't clear - approached me and asked if we could speak privately after my transfusion. When we spoke, she told me that they had just been informed about the transition of cancer patients with out of province specialists from the PEI Cancer Treatment Centre to the QEH within the last week, and she and her team were trying to make sense of how it was going to occur in practice.
As she was heading into a meeting about this transition shortly, I left her with three main points:
1) Having an in-person meeting with someone after one of my weekly appointments at the Cancer Treatment Centre during which the information about the transfer of service from one facility to the other was discussed would have made a huge positive difference. Subsequently, I've come to understand that some of the terms and phrases used in the cold call I received (i.e. "no longer have privileges") set the wrong tone and sent the wrong message. Re-framing it as a transfer from one facility to another would have made it seem like a non-issue, the bottom line being that patients would see it as a lateral move rather than a revoking of essential services.
2) Having a complete patient transition plan in place, one without gaps that I, my GP, and my specialist have to fill, would have made everything so much smoother. As it stood during that initial phone call, there were no answers about making bloodwork appointments, booking transfusions, receiving calls with bloodwork information, etc. Rather than putting a system in place before putting this transition into action, it has been left to individuals to create continuity of service/treatment in as many different ways as there are patients. Wouldn't it be best for everyone involved if there were a uniform process in place here, albeit one that could accommodate the quirks of each patient's treatment? Also, is it wise to add extra duties and more paperwork to the workload of GPs who are already in short supply and who are burning out rapidly here in PEI?
3) It seems to me that a "one size fits all" approach is being taken with this transition, and that absolutely won't work in this situation. For example, I require bloodwork weekly, some cancer patients require blood work once every three or six months. I work full time, some cancer patients are retired or are on leave of one sort or another. As the admin person I was talking with noted, there are also cancer patients in PEI who do not have a family doctor, and who is there to fill in certain gaps in this plan for them?
If this seems like whining, I reiterate that it was the shock of the phone call, the way in which the details were delivered, the lack of a functioning transition plan, and the fact that cancer is a disease of unknowns, and to add more unknowns to the equation is to increase the burden of disease to a point where it feels like it can no longer bend.
I remain grateful that I will continue to receive service, and it's important to note that I have only ever been treated with the utmost professional care and concern by the staff of the PEI Cancer Treatment Centre and by the staff of Ambulatory Care at the QEH. I'm left wondering, though, if the best decisions are being made by the folks of a higher pay grade than those front line health care workers who are, in my experience, doing their best to deliver the best health care possible while facing continuous new challenges.
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