Logistics of Accessing Care

1. LOGISTICS OF ACCESSING CARE

➤ Staff awareness of APN program

For the most part, EH staff are aware of the APN program. However, at the time of the interviews, the APNs were still facing challenges with some staff who do not understand or appreciate the APNs’ roles and responsibilities within the circle of care. For example,

Some Eastern Health staff still fail to appreciate that the APNs are within the circle of care and need to be able to access patient information to fulfill their duties.

A misunderstanding of the role APNs play in the circle of care complicates their ability to make appropriate health care arrangements. As the next section discusses, even when EH staff understand the role of APNs, there are additional travel and scheduling difficulties.

➤ Scheduling appointments

Scheduling appointments in Eastern Health for patients based in Labrador has posed challenges. The Cancer Care Program’s Big Land Project was designed to help health care providers understand the geographical and social context of Labrador, to avoid making mistakes. Yet, at the time of these interviews, patients and supporters continued to lament the lack of knowledge by St. John’s based staff about the geography of Labrador and the realities of air travel. One of the APNs explained this:

When patients from Labrador having non-emergency surgery leave home for St. John’s, only to find that the procedure has been postponed and they need to wait in St. John’s for an unknown period of time, the geographic barriers create additional social and economic burdens. The long distances Labradorian patients and their families/supporters must travel, combined with a lack of acknowledgment or appreciation of those distances by EH staff, can create delays and disruptions of care that are costly, confusing, and uncomfortable. A clear understanding of what supports are available upon arrival to St. John’s can ease the burden of this travel, but as the next section explores, these supports are not always made obvious to travelling patients.

➤ Communication about supports available in St. John’s

Typically, patients and their escorts and interpreters travelling from Labrador to receive care in Eastern Health are pre-approved (either by Health Canada and/or the Band council or by Nunatsiavut Government) and have arrangements made for housing, transportation, and food vouchers. At the Labrador side of things, they are also informed that the APN program is there to assist them in St. John’s.
Across the board, for all patients coming from Labrador, there were challenges related to not having received sufficient information at the Labrador side of things prior to arriving in St. John’s.

According to the APNs, the problem with lack of information was particularly the case for Health Canada clients.

Patients travelling from Labrador would be well-served by a clearer understanding of what is available to them in St. John’s and what they need to prepare.

➤ Transportation within St. John's

Participants noted that transportation within St. John's was of particular concern. Namely:

Not being able to access the pick-up van
Lack of clarity for patients about how many patient supporters may also use the van
Lack of consistent transportation means patients are unable to go offsite.

For context, in 2018 First Light (SJNFC) made a change to their van transportation process. A phone line became dedicated to van transportation, as opposed to the previous system where the general First Light (SJNFC) phone line was used and then the call transferred. The system was seen to be significantly less convenient for patients, as there was not always someone available to answer the designated line. The APNs explain:

Patients were calling the APN day line, and getting no one, and getting stuck at the airport late in the evening with no ride to their accommodation. We heard many stories of patients whose flight had arrived later than scheduled and therefore had no First Light (SJNFC) van to meet it. In those cases, patients would have to take a taxi. While they would be eventually reimbursed for that taxi fare, provided they had the receipt, this arrangement was very problematic for those on low income.

Many were confused about whether patient supporters had access to the First Light (SJNFC) van, with some feeling that access to the van was not allocated fairly. However, unless such an arrangement was made in advance, additional supporters beyond the approved patient escort would not automatically receive services such as transportation via the First Light (SJNFC) van.

This lack of effective communication at the Labrador side of things was a source of frustration for the APNs as well. They reported that at times, travel arrangements are made for a patient to be accompanied by more than one supporter, but without the accompanying arrangements being made for transportation within St. John’s. Moreover, patients' restricted access to transportation services patients, or their supporters have difficulty going off site in search of lower-cost food, while also often struggling to find a ride to return to their accommodations to rest.

➤ Inadequacy of food vouchers

There was widespread concern that the food vouchers allocated are insufficient to meet basic needs. The food vouchers do not stretch very far in the relatively expensive hospital cafeterias, and patients and their escorts very often have to contribute extra toward food costs, either on their own or by looking for additional resources.

One patient supporter reported that patients and escorts are forced to take some of their daytime meal to save for an evening snack because they cannot afford both.

It is important that this concern does not get glossed as a “Labrador side of things” issue to resolve. The reason why the food vouchers are insufficient is in large part related to the lack of low-cost nutritional food on Eastern Health premises. This relates to the next section, which discusses the financial burden of receiving care more generally.

➤ General financial burden

In general, the costs of resettling in St. John’s to receive care at Eastern Health, whether short-term or longer-term, were very draining. For some, we can imagine that the costs may be prohibitive and would lead someone who is non-urgent to delay or postpone receiving tertiary care. We were struck by how often escorts and informal volunteers provide financial assistance to help offset the burden of the stay in St. John’s.

Travelling long distances to receive care, especially for people already living on a low-income, incurs a great financial burden. Beyond the many economic and logistical barriers to arriving in St. John’s, there are also many linguistic barriers that impede care upon arrival. The next section explores the various facets of accessing translation and interpretation services.

"[There is an expectation that] the APN calls the community health contact to arrange follow up care, but it’s the discharge planning nurse who should be doing this; or to arrange the prescriptions in Labrador." [APN]

"We will request appointment confirmations for patients – because they need that to book travel – to send that into their insurance. So we have a lot of issues getting that information. Like just a month ago I was contacted by a patient – they wanted me to get an appointment confirmation because they had misplaced their appointment. Their appointment was in two days. They had to come from Goose Bay. I called the doctor’s office and it turned out that he was on holidays and this receptionist was not going to be checking messages until the day. Of course, the patient had the appointment, so that wasn’t going to work, because if it was like 9:00 in the morning it’s going to be impossible. So I called the admitting department to see if I could get a copy of the appointment. I said who I was and they said “No, sorry we can’t give that information to you”. So I said “What am I going to do, who am I going to call, how am I going to get this information?” I’m limited to what we can see on Meditech. So I called one of the social workers for the urology patient. I called the urology social worker and I said “Okay, this is the situation; is there anything you can do?” She, the social worker, knew one of the clerks down in the outpatient department very well, so she called and asked for this favour and she got it from them. " [APN]

"[The hospital] called him one day on a Friday morning, 11:00 in the morning, and said “Okay your bed is available, can you be here this afternoon?” – I don’t think so! He has to come from Nain, right. So, there’s only flights on Monday, Wednesday, Friday in Nain so it’s usually 9:00 in the morning the mission plane is gone, so he had to wait until Monday … What should have happened there they [St. John’s booking] should have called the clinic [in Labrador] and said “Okay, can you get a hold of this patient and let them know?”; [Labrador-based clinic] should be able to say “No, our Mission plane is gone for today, we’ll have to reschedule” … Some of that is common sense too, right. If someone is booking an appointment, they see that the person is in Labrador, you should hopefully take a second to think about how long it takes to get down from Labrador too." [APN]

"I didn’t know that [the APN program] existed – the only reason I knew was because I had Facebook and a few people, a few friends of mine, had told me to get a hold of Katie, to go see her and she would be able to help me. So I ended up finding her and looking her up and she did everything for me and it worked out really good." [Indigenous patient 5: Qalipu man – patient and patient supporter]

"Say when I fly from Nain to Goose Bay, we’re picked up in Goose Bay and then we’re brought down to the hospital [in Happy-Valley Goose Bay] to check in … there’s somebody there in a little office [in the hospital in Happy-Valley Goose Bay] that checks you in … “This is your appointment time and here’s your blue slip” and they ask you where you’re staying and stuff like that, or like, “You can get a ride here and there” or whenever. Then they give you your information that you need to take to go to St. John’s. But one of the things they don’t tell you about is the food vouchers that you could get at the hospital if you’re there." [Indigenous patient 6: Inuit woman – patient, patient supporter, and interpreter]

"Some of them [patients] come with nothing, like no papers, no nothing. They’re just like “I don’t know who my appointment is with, or, I don’t know why I’m here.” … They don’t know who they have to see or which doctor and where to go … [Health Canada is] based in Halifax, so it’s like there is no accountability – they’re not working directly for the bands … [It’s mainly the] Health Canada clients – that’s where I think a lot of the problems are; there’s no communication. They don’t hand them any information at all about their doctor’s appointments … A lot of the times a lot of the Innu patients will come to our office, “Okay can I get a meal voucher?”, and they’ll think we already have the paperwork but, no. We just had a situation earlier where a man asked “Can I get a meal voucher? Do you have my paperwork?” and I said no. I said “The way things work ... when you’re coming, you have to tell [Happy-Valley Goose Bay liaison workers] what you want”. I said “If you want to have your lunch here at the cafeteria, you have to tell them, and then they will send that information to Health Canada, and we’ll get the paperwork and say yes we’ll be glad to give you a meal voucher you can go through the cafeteria” – that’s the way things work." [APN]

"It’s hard to get through down there. I can see why some people are getting frustrated … Like, you know they have different departments – like there’s a line for the APN’s, there’s a line for education, there’s a line for training, there’s a line for like all different departments. They had one there for transportation, but they took it out. It doesn’t make any sense so now – all the phones are redirected to us after hours. We’re getting all these calls like “Okay, I’m here at the airport can you come pick me up?” … There’s an 8:00 to 4:00 [pm] number that you have to call Monday to Friday. After hours, on holidays, or on weekends, there’s a different number that you have to call. Once [First Light (SJNFC) staff member] is gone for the day, she forwards the phone calls to the cell phone number that the drivers take because they’re working until 11:00 at night. After 11:00, that phone is dropped off to the shelter, because there’s somebody there 24/7 … and there’s a lot of missed calls and there’s lots of problems with that phone system." [APN]

"[Government will] pay for $12.00 worth of your breakfast and … even if you just order like a cup of tea and toast and maybe one little other thing, usually that goes over $12.00 … You can’t have a good breakfast …. Then lunch time you might want to get a clubhouse sandwich and fries and soup or something but then that’s going to be like twenty something dollars, so that breakfast and lunch money don’t really cover what you want to have." [Indigenous patient 6: Inuit woman – patient, patient supporter, and interpreter]

"The hardest part I see is when I know that there’s patients here and they have such a low limit on the amount of funding for food … Like a sensible breakfast, a sensible meal, a decent meal without worrying …. Sometimes, like say, if they ordered a sandwich during meal time, [they’ll] take half the sandwich and save it in the night time for a snack" [Indigenous patient 4: Inuit woman – patient, patient supporter, and interpreter]

"Because I’m after going to a few places where people have stayed and I just go visit them and they’d be going to have their meals, and they’d be worried about eating, saying "I can’t have that because I don’t have no money”, and I said 'Just get it, I’ll pay the difference … Put your voucher towards that and I’ll pay the difference.'"[Indigenous patient 4: Inuit woman – patient, patient supporter, and interpreter]

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