Blog Katie Allen September 2024

The last topic I wanted to cover in this little series about the transition from pediatrics to adult care was the hardest part for me, the loss of the team approach to my condition. In the BC Children’s Hospital, where I had my pediatric care, I had an incredible vascular malformation team, which consisted of surgeons, dermatologists, hematologists, and other specialists who met with me individually and all together. In these team meetings, a number of my major concerns were discussed and addressed, and plans were made for moving forward. Quite naively I assumed once I left pediatrics, I would be handed to an equivalent adult care team – I couldn’t have been more wrong.

My pediatric team continued my care for as long as the hospital would allow, however, eventually, the hospital did insist that I get passed off to the adult care programs. This is where everything went slightly pear-shaped as the doctor that my team had flagged to lead my care felt my case was beyond their capacity nor did they feel qualified to refer me to another specialist, so they suggested I get back in contact with the pediatric team to find a new care lead. When I tried the administration of the hospital informed me that I had been discharged from the vascular anomalies team and as such there was no chance for them to recommend anyone else. I was passed to the GP at my University to try and find someone. In the end, no one found anyone to manage the flow of information, thankfully my current GP has stepped up to manage a lot of my care.

Now, having someone who is managing the inflow of information is greatly appreciated, but the reality of all the specialists working in a silo is now a major problem. My GP has tried hard to ensure each specialist who needs another specialist’s information has access to it, but it leads to a cumbersome game of telephone. A great example is when I see my hematologist, they generate a report to send to my GP, but they must wait for the blood test results to come in, which can take a while. Once those results are in, they send the full report to my GP, who forwards it to my dermatologist. However, sometimes before this conga line of faxes, I have already seen the dermatologist. Here, the attitude of the doctor plays a major role, some doctors will accept information directly from the patient, while others prefer to wait for the official report, which delays care for yet another appointment. This also leads to weeks, if not months, of back-and-forth faxes between specialists rather than the conversations held in the same room during my pediatric years. Overall, it is simply an inefficient method of getting care.

The conclusion to all of this is, unfortunately, an unsatisfactory one, the loss of a team is a major detriment and obstacle to care. If an adult care team is available for you in a nearby area, even if it means travel, I highly recommend grabbing the chance because the current system I am involved in in Western Canada is highly inefficient. Having a GP or another doctor take the lead in the care is crucial for this system to work and, again, any notetaking you have may mean the difference between weeks and months of care.