Navigating the system
They say that if you want something done right, ask a busy person. Dr. Teresa Purzner may be the ultimate example of that. She paused her neurosurgical residency at the University of Toronto in 2021 to get a PhD at Stanford creating new drugs for pediatric brain tumors. She had the first of her 3 children during her PhD and created Cerebelly babyfood to support early brain development. Her brand can now be found in over 14,000 stores across North America.
These days Dr. Purzner works at Queen’s University as a neurosurgeon. She is studying patients with the most deadly brain tumour, glioblastoma multiforme (GBM). GBM patients have a median survival of only 8 months and less than 5% survive to 5 years. It’s the brain cancer that killed beloved Canadian singer Gord Downie. When she looked at surgical outcomes in Kingston she noticed that many patients were lost to follow-up or weren’t able to complete their treatments.
They redesigned their system with nurse navigators acting as a primary point of contact for any questions the patient may have, then coordinating with the rest of the care team to ensure treatment schedules are followed.
When patients can access a navigator we see huge benefits: in Kingston 40% more patients received surgery within provincial targets, delays to radiation therapy have been reduced by 40%, and post-op MRIs are now being performed on time for 89% of patients.
Here’s what everyone needs to know to act as their own patient advocate:
Your specialist is required to respond within 2 weeks of receiving the referral from your family doc. They might call with an appointment time, or reach out to tell you that their wait times are 1 year and you should hear from them in 9 months with more information. Either way, if 2 weeks have passed and you haven’t heard anything it’s time to be a squeaky wheel. Check with your family doc to make sure the fax was sent, then call the specialist. If they don’t pick up the phone, go in person to the office. If the waitlist is long, ask when you should check in next with them.
ALWAYS, EVERYWHERE, ASK TO BE ON THE CANCELLATION LIST. This can shorten your wait from months to days. If you’ve got an MRI booked, ask the receptionist at your family practice for the phone number of the booking office at your hospital. Call them and ASK TO BE ON THE CANCELLATION LIST. If you’re trying to get a hip replaced, tell the receptionist you’ll be ON THE CANCELLATION LIST for a surgery date.
If you’ve had a devastating diagnosis and are connected with a cancer centre, you probably have access to some kind of navigator. When you talk to the receptionist to book your first appointment ask them about patient resources like social workers or nurse practitioners. If you don’t get resources from the booking team, ask your surgeon or oncologist. If no one knows, try talking to the Patient Experience office at the hospital. Put these people on your speed dial.
Keep your own records. Get yourself a 3-ring binder with pockets to hold papers until you get home to your 3-hole punch. For each medical problem make a tab and in each section write down the name of your specialist, what tests they’ve ordered, what the results were and what the follow-up plan is. Imaging tests generally have results within a few days and biopsies generally take about a month. Make an appointment with your doc to discuss the results, that way if the lab forgets to send the results you’re there to prompt them to call the lab and get it faxed over. After the appointment, ask the receptionist to print a copy for your files.
Activate your voicemail and check it regularly. Call the doctor back to confirm your appointment. Check your cellphone settings to make sure you don’t block calls from unknown numbers, and pick up the phone when you see a blocked number - that’s how your doc calls when we sit down at 10pm to do our charting and see urgent results.
If you have a chronic illness, ask to see the Palliative Care team as soon as possible. People think palliation is only for dying people, but really they are specialists in quality of life. They have time and expertise to help you get the best resources for the best care.
If your condition changes, keep us updated. So often patients make do at home as things get worse and worse, but options change when things go downhill so call your family doc or specialist to be reassessed if things are new or worse. Agony is optional! If you’re on the waitlist for a specialist and you have to go to ER, go the the ER at the hospital your specialist works at. The ER doc can either admit you to hospital for the doc to see in the morning, or send you home with an urgent office consult within a few days.
If it’s an option, go to ER at 7:30am. It’s nice and quiet and the fresh day shift team is at optimal efficiency.
If you’re nervous about following your doctor’s advice, don’t just ignore it. Write down your questions and make another appointment to discuss. One of the big questions to ask is “can I try it for a few months and stop if I don’t like it?” If it doesn’t work, come on back in so we can try something else. Everything that we try gives us more information. Be patient with us while we figure out what works best for you.
Last year I wrote about pain and how to advocate for yourself with a healthcare team. Here’s the link to that article.
Canadians are nice and we don’t like to make a fuss, but it’s too easy to fall between the cracks. Complex systems fail in complex ways, and I don’t want you to suffer as a result.