I’m writing this on a chilly Sunday morning. I’ve just returned from our neighbourhood mailbox (a major construction project prevents us from gathering our mail daily). After sorting out the flyers, I chose to open an envelope from the Nova Scotia Health Authority. As I read the enclosed letter, I am filled with a deep sense of sadness and concern for how we are choosing to communicate with each other.
What did the letter say? And why would it bring tears to my eyes?
Three years ago my husband, David, was diagnosed with cancer. While his journey with the disease has been relatively easy, cancer is always disruptive and emotional. There has been surgery, radiation and months of heavy-duty medication. And for some of this time he was without a family doctor and we struggled to navigate an extremely complex system.
Which brings me back to this letter. It is from the Nova Scotia Cancer Centre – the QEII Cancer Care Program. There is absolutely nothing about it that indicates “care”:
He is being scheduled for an appointment with his oncologist in February. Since he recently had blood work done, we are assuming this appointment relates to those results, and since the appointment is not until February, we are assuming the results are positive, that the cancer has not returned. But we don’t know this … the letter provides no information other than what David needs to do to keep this appointment.
There are two phone numbers provided. One if we want to change the appointment and one if we want to leave a message for the doctor or nurse. I’ve called both these numbers on occasion and, if you ever want to feel unimportant and of little value … . When David was without a family doctor I used every phone skill I possess to communicate, and was mostly met with anger and annoyance for my persistence.
Of course, we will bow to the system but I need to ask … Is this how we want to communicate? Is this acceptable to us? Are we truly okay with abandoning the phone conversations that once guided us through our health needs?
All health concerns are emotional, yet our system of black words on white paper, or nameless voicemail messages, do not acknowledge this truth. Those that are ill must endure an arms-length system in the name of “efficiency” that has nothing in common with community or caring. What are we doing?
Certainly the staff we have spent time with – receptionists, nurses, doctors, technicians – have been compassionate and caring. David has been treated with warmth and respect … once we are “inside” the system. But when you are “outside” … .
I sat with this letter and wondered, “How do they know we’ve even received this notice? What about the people who struggle with organization or dementia, who might not get this information in their calendar? What about the people who don’t read English?”
The letter is signed “Sincerely, CCTRS1”. No name, no connection. A letter from a number for a patient that’s a number. And this … this made me cry.
That is in the nature of a bureaucracy that has as its primary focus the avoidance of providing any information that people might rely on. So as to avoid legal liability. The dehumanizing of our social institutions and within it our health care system is shocking.
I’d love to see our Phone Lady break through and get the answers they owe you!
Thanks, Delphine. You’ve given me something to think about for sure. I’ll keep you informed. There are likely more blogs on this subject in the future.
There are a few health centres who have brought in emotional intelligence and have seen significant improvements in the health of their patients as a result. How sad that Nova Scotia isn’t among them. I’m sorry that your husband has gone through this difficult journey and I’m happy that his outcome has been positive. My prayers that his health continues to improve and the Cancer Care Centre improves their care.
Thanks, Lea. This is great information to share. All of the health centres and hospitals should be connecting with you to better understand and appreciate their patients and to improve their care and communication. Hope you contact Nova Scotia’s decision makers.
Sad and wishing you and David the very best.
Thank you, Steve. I know you’ve had some health issues of your own and we send you our wishes as well. You keep us grounded in gratitude.
This article couldn’t have been more true. It’s sad to think that an institution such as the hospital wouldn’t thought of a better way of communication—they’re neglecting a whole ton of people.
P.S. Wishing you and David the very best! 🙂
Thank you, Lisa. It is a bureaucracy that is being created and supported that is completely disconnected from the goal. The individual people are amazing. The system they are working in is very broken. We all have to contribute to getting it fixed. I appreciate your wishes. David and I are doing well. Our motto is “Grace, Love, Joy” regardless of the systems around us.
I’m sure Phone Lady has enough on her plate to break through and make a difference for those of us who can write, call, do what we can to try to help her in this instance in a time where she could maybe use some help.
Here: send them some emails- call – see what you can do to get through
http://www.nshealth.ca/contact-us/patient-feedbackcommentaires-des-patients
– use it as some contact / phone exercises to see what you can do to up your own phone game and when/if none of that works use these numbers:
902 473 6000 Nova Scotia Cancer Centre
902 475 4645 Cancer Care Nova Scotia
Here’s a list of many of their doctors who are also involved in research studies:
Many have their phone numbers and emails included/emails there appear to be first name.last name @nshealth.ca or first name.last name @cdha.nshealth.ca
If you’re not sure send them to both. One will get through maybe!
Write to them and let them know your issues.
Let them know the fear and heartache and stress the system is causing you.
Let them know it’s not making you (and your cancer) any better.
Good luck Phone Lady and my best to you and your husband and thanks to both of you for all you do!
Maureen Sharib
PhoneSourcer
USA
Wow, Maureen, what an amazing message. What wonderful resources to share. This is exactly what I’m talking about. We, the people, don’t have to accept a system that isn’t working for us. We can, in a variety of ways, express our need for change. I deeply appreciated your comments and what you have shared here. Thank you very much.
I forgot the link to the doctors.
Here it is:
https://www.cdha.nshealth.ca/discovery-innovation/researcher-directory
How sad indeed Mary Jane. We have gone through the whole spiel and know how difficult it is if you don’t get a direct number. I am wishing you and your husband good health and caring support if needed.
Thank you, Jacqueline. I think what’s important is that we keep trying, that we don’t “succumb” to the system so that it becomes are future. But it is hard in the health care situation because we are emotional in these moments. I hope to keep calling, keep trying to to say that the disconnected system is not where we want to go. Sorry to hear that you have struggled as well.
Hello Mary Jane:
On this rainy Sunday morning, I am cleaning out my email in-box and I have come to your blog Letting Go on the Human Connection.
I am absolutely enraged and wonder if there is anything I can do to bring this letter to the attention of people who might really care in the NS Health System. Some of our Bosom Buddies have a long term relationship with the Nova Scotia Health Authority and the Nova Scotia Cancer Centre. There are also our MLA’s and the whole province of cancer survivors and their families, not to mention the families of those who have died of cancer.
Is there anything I can do to get your letter in front of people who will actually be motivated to change things for the better?
Hugs,
Eileen