The transition from pediatric to adult care – Transfer of medical records
One major challenge in Canada with a rare disease is the transition from pediatric to adult care. My transition was, unfortunately, not a resounding success, and I would love for my failures to be learning opportunities for others, rather than just the stumbling blocks I faced. I am hoping to use my next three blogs to talk about three challenges in the transition from peds to adult care: moving records, the changes in the hospital experience, and the loss of the team.
A major complicating factor was that I moved between health districts and the records had to be sent from district one to the second, at the patient’s request. Medical history is not easily accessible from province to province, and when you have to travel to get care, I spent many years travelling between one pediatric hospital and a cluster of care units in another province, trying to consolidate those records was not easy. When I was under the pediatric team’s care, all my records were sent either to them directly or through my family doctor, so they always had a complete view of my medical record, imaging history, and tests whenever we had appointments.
One lesson from all of this was the importance of having your own notes and copies of critical records. After I left the pediatric team’s care, I asked my family doctor to forward my medical record to the student health centre at my university in my new province. The issue we had here was the records came digitized, but not searchable. So, my entire file was now on the student health centre’s computer, but a doctor had to flip through every page to find anything specific they needed – a mammoth task when my digitized file filled 4 DVDs. The solution ended up being to redo many tests to save time and energy.
The major issue was discovered five years later, after I left the student health clinic, and had a new GP. I asked the student health service to send along my file again, which they did, but my new GP started to notice holes. While at student health I did not have one doctor, but the team shared patients, so there was no doctor to send some test results or files to, this meant some of my specialists never sent along their tests or findings. My new GP and I then went through the records I had kept to find all the doctors’ names that I had seen in the last five years so my GP could contact them directly. That’s when the big bombshell finally hit, the records my family doctor in the first province had sent five years ago were only the records she had, the pediatric team had been receiving documents from her and other doctors, but had not been sending their records, nor the specialist that dealt with them directly, to my family doctor. Most of my file from the pediatric vascular team was missing, along with dozens of tests, findings, and research notes. We thought this would be a simple fix of contacting the pediatric hospital and getting the information sent – goodness were we wrong. The reality was, because I had left pediatrics more than five years ago at this point (and I had stayed in the peds hospital 3 years past when many were released), they no longer considered me a patient. We spent weeks going back and forth trying to explain that this hospital was the only location for some of these records. Finally, after gaining some records, it was determined that some doctors’ notes and tests were simply gone. I had kept a record of most of the doctors I had seen in my life, but not all, so I was able to supply copies of some test results, but we are sure some records are simply lost.
This experience had an impact on how I keep my records. For the last couple of years, I have been sure to keep a notebook about each doctor I have seen, when I saw them, and what tests they have ordered. It has been a real lifesaver, even recently, my respirologist referred me to an ENT, I thought my GP had been getting all the records for those appointments, but found out just last year that my GP did not get the record of the surgery being completed in 2020. The ENT had been sending his reports to my respirologist, who had retired in 2020, and the respirologist had previously been forwarding the reports to my GP. When he retired, my GP ceased getting any information from the ENT. Though this experience has been stressful it has taught me the importance of recordkeeping and of standing up for yourself. I have had to have serious conversations with doctors who claim, “Well, you never saw an internist before?” Only to have to stand up for myself because I had, those records were just lost. To steal a great quote from one of my surgeons, “Sometimes you as the patient have to be the quarterback of your own care. You need to know all the pieces and how they fit together,” not an easy task for anyone let alone a 20-something rare disease patient, but even the simplest records in your phone can be a huge advantage to you down the road.
