We interviewed nine participants with varied socio-demographic representation (Table 1).
Participants became unattached through both patient- and provider- initiated mechanisms. Most commonly, participant moved either within the province or from outside of the province. In some cases, a previous PHC provider retired or moved out of province. In one instance, a participant had a previous PHC provider that may have been available to them after moving back to Nova Scotia, but they were uncomfortable receiving care from them and so chose to look for a new regular PHC provider. No participants in our sample were “fired”(23) from their most recent PHC provider before participating in the study.
Consequences of Unattachment
Participants experienced a range of consequences from being unattached related to the burden of care, lost care, and health impacts (Fig. 1).
Care Burden
All participants experienced an increased burden of managing their own healthcare in the absence of a regular PHC provider. Participants experienced increased burden compared to when they were attached for finding and managing information, managing their own medical history, navigating health and other service systems, and in some cases, patient costs including time and increased travel distances for care.
Participants look to their PHC providers as experts in medicine and in the healthcare system. Without a regular PHC provider, several participants looked to other sources for information that may have some healthcare expertise, such as the internet or family and friends. Three participants expressed that they specifically felt the loss of an expert who could give concrete answers and to help process information into something actionable.
“Kind of that hub where, you know, all the information goes in and somebody needs to kind of figure out what to do with it” – Participant 8
All participants discussed the burden of having to manage their own medical record while unattached. This manifested as needing to communicate their medical history to interim providers, managing new healthcare information and instructions that would typically be held in a medical record under the custodianship of a regular PHC provider, and extra work to track and access their existing medical records from previous PHC providers. Participants expressed that they felt stressed by these added responsibilities and worried that they may not be able to carry them out as well as a regular PHC provider. One participant took detailed notes in order to maintain their medical history while accessing walk-in clinics; another paid to have a print copy of her whole medical history up until they became unattached.
“…I did a lot of talking to bring the [walk-in clinic] doctor up to speed … what happens now if I got to somebody that I don’t know and doesn’t know me or my history, and I have 15 minutes or whatever, and they’re absolutely overloaded with patients anyway?” – Participant 1
“Because when I got to the walk-in, and I tell them I had a surgery once but they don’t really know much about it, and I can’t tell them a whole lot about it … Like, I am not very good at, you know, explaining things when I am on the spot.”- Participant 4
At the intersection of the loss of a “home” for their medical records and an increased burden of managing healthcare information, our study participants expressed the consequence of having to navigate the healthcare system alone or with dis-jointed advice. Some participants expressed confusion about how long is normal to wait for a follow-up from a referral or who is even responsible for initiating that follow-up. Others felt challenged by having to navigate different care providers and services without the central “hub” of a PHC provider to help coordinate their healthcare around a particular health issue.
“You’re just sort of roaming around a maze, you know, with drones at each station.” –Participant 3
Although healthcare in Canada, including PHC, walk-in clinics, and hospital care, is funded through taxes and has no user access fees, some services, such as purchase of most prescription drugs and services of some allied health professionals, incur fees unless covered by an insurance plan. Participants in this study faced increased financial and time costs related to not having a regular PHC provider. Most commonly, participants sought over the counter medications, where if they had a regular PHC provider, they would have sought a prescription (or other treatment avenue) that would then be covered through their medical insurance. Four participants had costs related to accessing their medical records or sending medical information to their insurance companies. Several participants also expressed costs related to travel, including going to walk-in clinics or other healthcare services that are further than they would typically travel; paying for taxis or in one case, an ambulance; and time away from work having to wait in emergency rooms and walk-in clinics that do not offer pre-booked appointment times.
Lost Care
All patients had trouble accessing certain kinds of care and felt they “lost” some care due to not having a regular PHC provider. There was a strong theme of the benefit of “being known” to a regular PHC provider, which supported participant’s comfort in accessing care and providers’ ability to provide continuous care. Without a regular PHC provider, participants did not feel “known” by the interim providers they saw. This, grouped with the unavailability of their whole medical history and bouncing between various interim care providers, resulted in feeling that pieces of their care got lost.
“Having to tell your story over and over and over again to …and also I think for a physician, they may be missing certain links. I think the impact has been enormous, actually” – Participant 5
“The first time [with an emerging medical issue] I bounced from doctor to doctor each visit … History matters. It matters very much. Yeah, you know your doctor and your doctor knows you” – Participant 2
All participants faced challenges, sometimes insurmountable, in accessing either medical follow up from a visit to an interim provider, prescriptions, or referrals to specialists. In particular, getting prescriptions for controlled medications – such as those for ADHD, sleeping, and other mental illnesses – posed serious problems at walk-in clinics, even if the participant had been prescribed the medication they were seeking previously. Similarly, some participants had trouble accessing referrals to specialists or for testing, and then if a referral was made, were challenged by a lack of a “home” to manage follow-up, such as receiving test results and next steps. For example, one patient struggled to have an issue diagnosed via walk-in clinics but received one upon an emergency room visit for acute pain related to the issue. From the emergency room, they were referred to a surgeon for treatment. The participant was unsure of how long they should wait to hear from the surgeon; eventually, it became clear that the referral either was not made or got lost. They then struggled to gain another referral from interim PHC sources.
“I mean, I didn’t know if I could have called the emergency room to ask who I had been referred to. It didn’t seem like that was a place I could sort of go back to to follow up. So, you just sort of feel a little bit sort of forgotten and kind of lost in the system. Like I think I got lost in the system a couple of times, and I didn’t really know how to follow up on it or just what to do next.” – Participant 9
Health Impacts
When asked directly if being unattached had direct impacts on their health, most participants responded that it did not. However, when probed further about specific experiences, health impacts emerged, including making lifestyle changes to improve their health, condition-specific changes in health, incorrect, missed, or delayed diagnoses, self-diagnosis and medication, and not seeking care.
Three participants made proactive lifestyle changes in an attempt to reduce their healthcare needs and to manage existing symptoms. Lifestyle changes included diet, exercise, being more cautious, and occupational health changes (e.g., shoe insoles for walking, physiotherapy-inspired exercises for office work).
“Even walking down stairs, like even when I’m moving around, I’m thinking just take a second and think about what you’re doing…I’m trying to keep myself from need to see [a doctor].” –Participant 3
Six participants experienced some deterioration in their health or sustained symptoms, related to a specific health issue that they each experienced, that they attributed to not having a PHC provider.
“…kind of waiting for these pain flare-ups to happen again because it would sort of be unexpected flare-ups with terrible pain.” – Participant 9
“It’s just been kind of the same things having to deal with several years or longer. For a long time at this point. So, it just kind of ends up becoming the background noise of my life” – Participant 7
Seven participants felt that they had diagnoses that were either incorrect, delayed, or missed altogether due to the discontinuity of PHC and the absence of having a complete medical record available for interim care without a regular PHC provider. For example, one participant had a persistent issue for which they sought care at a walk-in clinic several times and then the emergency room. They eventually had to call an ambulance and seek emergency care for the issue. Another participant spent five months with debilitating symptoms before receiving a diagnosis that was ultimately picked up with routine bloodwork, which had never been ordered by the walk-in doctors she visited previously.
In the absence of a regular PHC provider, several participants reported self-diagnosing and treating their health conditions, despite their perception that this was not “the right” thing to do. Relatedly, some participants reported not seeking any care even when they felt it was warranted and would have if they had a regular PHC provider. In both cases, participants felt either the barriers of finding appropriate “professional” healthcare were insurmountable (e.g., waiting at a walk-in or in emergency), or, that their healthcare needs were not severe enough to warrant discontinuous walk-in care or emergency care.
“So, you don’t feel you should go in unless you’ve really got something serious wrong with you. So yeah, you do self-medicate” – Participant 2
“And I guess the biggest difference is we sort of feel held back from dealing with certain issues because it is not convenient to be able to access the care. So maybe we would have gone to the doctor for less of a reason” – Participant 6
Strategies for Care: Attachment Strategies
Unattached Patients’ Registry
Most participants were registered on the provincial unattached patient registry. Only one of the participants attached through the registry at the time of their interview, and none of the participants on the registry held much hope that they would find a provider through this strategy.
“And I always kind of figured that I wouldn’t be on the list for very long … And so, I figured it was just a matter of time before they called me or contacted me at all. But no, they never did. They still haven’t.” – Participant 7
“But we put ourselves on the list with the government for all the [expletive] good that’s going to do” – Participant 3
Interim PHC Provider
A common strategy was to gain or approximate attachment through an interim care provider. Participants would either try to attach to the regular practice of the doctors that they saw in walk-in clinics or rural emergency rooms, or they would attempt to return to the same walk-in clinic doctor each time they visited. In one case, a walk-in doctor agreed to see a patient continuously until a particular health issue was resolved.
Cold-Calling PHC Practices
Another common practice was to cold-call PHC offices to see if any of the providers were taking new patients. Six of the participants tried this approach, but half have since stopped due to feelings of discouragement. One participant had a dedicated approach of calling all the practices in a geographical area that feels acceptable to them every two months. This method elicited a lot of frustration among participants, but also empathy for the receptionists who receive their calls, whom participants described as generally pleasant and sympathetic. No participants found a new provider with this approach.
“I’ve stopped [calling clinics] because it’s pointless. You know, I’m well aware of how bad it is now. So, I’ve stopped trying” – Participant 6
Personal Networks
Seven participants used their personal networks to try to find a new regular PHC provider. Participants’ approaches ranged from asking friends and family if they knew of any providers taking new patients, to requesting that they ask their providers directly (e.g., a mother asked if her physician would take her unattached son), to asking directly among PHC providers that they knew personally. There were mixed approaches to using social media – some participants used all networks available to them, while some did not feel comfortable “broadcasting” their healthcare issues in such a public way. Two participants indicated that they used public and personal political avenues to try to inspire broader change or simply understand the larger issue of unattachment to be better able to navigate the system to find a provider for themselves.
“You know, the only way you’re going to find a doctor in NS is if you know somebody or if somebody happens to move into a new practice.” –Participant 3
Expanding Geographic Area
Regardless of the active approach to finding a new PHC provider, four participants expressed a willingness to attach to a provider in a geographic area outside of what they consider convenient. Some participants expressed frustration that you could not indicate willingness to travel on the unattached patients’ registry.
Giving Up
Finally, most participants simply gave up actively looking for a regular PHC provider.
“…there is no doctor to be found. You know, we start paying attention to the news and … you know. And it was the start realization that, you know what, it’s a systemic problem in this province” – Participant 6
Accessing Care While Unattached
Similar to not immediately identifying health impacts related to being unattached, participants frequently answered that they did not have any ongoing healthcare needs while unattached. However, as participants’ narratives unfolded, it became clear that most had either an emergent healthcare need or a controlled chronic condition during their unattachment. While participants did not always identify a specific need in the time that they were unattached, most expressed concern for the future, when things “get worse” or “come up.”
Walk-in Clinics
Walk-in clinics were the primary source of PHC for participants while unattached. Some participants could access walk-in hours in the family practice clinic they used to attend, others used dedicated walk-in clinics that provide no continuous care. While some were able to use the same walk-in clinic repeatedly to approximate attachment, most found them to be frustrating due to wait times, feeling rushed in the appointment, reluctance of walk-in doctors to order tests, write referrals, or write certain prescriptions, having to be the reporter of their own medical history, and the perceived incompetence of some walk-in physicians. While some participants were thankful to have access to some form of care, most felt walk-ins were an inadequate replacement for a regular PHC provider.
“But having been to a couple of walk-in clinics for various things, like, you know, a sinus infection for my daughter or strep throat for my son or whatever, and having to deal with these people at these walk-in clinics was enough to turn me off and say, you know what, it’s not worth dealing with.” – Participant 6
Emergency Care
Overall, participants were reluctant to use emergency care unless they felt their issue was truly an emergency. In some cases, participants did use emergency care when they felt it was warranted, but that it could have been avoided if they had a regular PHC provider to address their issue before it escalated.
Specialists and Other Healthcare Professionals
Participants used a variety of healthcare providers that were available to them. Two participants had access to specialists for other ongoing health issues and had those specialists address issues outside of their area of expertise that would typically be addressed by a PHC provider. Pharmacists were accessed by seven participants in lieu of a PHC provider, primarily for preventative health services like flu shots. Participants also access self-referral walk-in clinics, methadone clinic physicians, chiropractors, and women’s health clinics for issues that would be appropriate for PHC.
Stress of Managing Unattachment and Concerns for Future Health
Overwhelmingly, due to the consequences and the increased work for accessing care, all participants experienced stress related to being unattached. Most participants expressed concern for the future, related to accessing care for either an exacerbation or recurrence of an existing health condition or for a new issue, often related to aging. This stress was especially pronounced among participants who had chronic health conditions that would benefit from a PHC provider’s involvement. Several participants also expressed frustration and worry about the perceived lack of choice of providers – both at walk-in clinics and with a potential new regular PHC provider.
“It probably wouldn't bother me a lot but I’ve been through cancer treatment. So I’m in remission. But I have ongoing care from that experience. But what I don't have is somebody [to care for me] if something else comes up even related to my cancer.” - Participant 1
“I am fortunate right now that things are kind of stabilized and I am healthy. But you know, if that changes, I’m not sure what I would do.” – Participant 9
“Health and stress go together in my life” – Participant 3
Negative Feelings and Sense of Abandonment due to Unattachment
Finally, several participants expressed an unexpected feeling of abandonment or betrayal by the healthcare system due to not having a regular PHC provider. Participants expressed feeling demoralized and “like a beggar” in the process of seeking a new PHC provider. They also expressed a desire to have access to a regular PHC provider and described the sense of comfort and reassurance they would feel if they could become attached.
“Yeah, you’re not expecting it. It’s kind of shocking. And then to realize there are no doctors. What do you mean I can't have a doctor? This is Canada! We all have medical care, right? No, we don’t. It was startling.” – Participant 2
“The biggest thing is not having that level of comfort. You know, that it’s not… It’s a bit of a security blanket to know that you have a family doctor.” - Participant 6