Access
Having access to medical facilities, health professionals and specialists who treat cardiac conditions is critical for any heart failure (HF) patient. From the comments of women living with HF, access to these services seems inconsistent across institutions and places, and depends upon the type of heart issue, geographical location and availability of medical staff and resources. Women who presented with sudden heart problems told us that they got specialist care immediately, and so access was not an issue for them. However, other women had much more trouble accessing specialty care, particularly if they had cardiac symptoms that evolved more gradually and/or if they had underlying conditions. Barbara shares how her COPD symptoms masked her HF, “When I went to my GP and I said, “You know something is going on. My heart is pounding out of my chest. I can’t walk more than half a block without stopping” and blah, blah, blah, and he looked at me like I had three holes in my head. Now I had had two bouts of pneumonia, two bouts of pleurisy in the last two years and I was a pack a day smoker, so those are the indications that we know now that person should have a spirometry, and when I asked for it my family doctor thought I was playing the system. Finally, he relented and let me go for the spirometry test which is an easy, easy, inexpensive test and it came back that I had severe COPD and that I had already started to cause heart failure. Geography also had a big impact on whether a woman could access cardiac care. Women living in rural, remote or smaller towns said that the lack of cardiologists in their local communities forced them to travel long distances or even leave their home province to receive treatment. Women expressed frustration about having to repeatedly call physicians’ offices asking to be seen or make multiple trips to hospital to try and get care. They shared stories of getting little or no follow up from caregivers or clinics, some experiencing lost referrals and never getting care at all.
Sudden Onset
Having a sudden cardiac crisis, like a cardiac arrest usually meant that women got immediate help, were admitted to hospital, and received specialist care without having to request it. Women who experienced this crisis out of country however, still had more difficulties finding a cardiologist or getting cardiac care, once they returned home to Canada.
Ronda is grateful for the immediate diagnosis and treatment she received after a sudden cardiac arrest.
Written testimony
I was immediately taken to the hospital. I was put in a medically induced coma and I woke up the next evening. And ironically enough I felt, or I knew it had to do with my heart and I don’t know how. I had been through a lot of emotional heartache over the years and I was just so thankful to be alive. I was diagnosed with at that time with non-ischemic dilated cardiomyopathy which was later determined that I have cardiac sarcoidosis. I was implanted with an ICD at the time and put on a lot of medications which took some getting used to.
Debbie expresses gratitude for the quick care she received from her GP as well as the staff at the hospital.
Transcript
I’m grateful to her, so much. You know because if she just kind of sent me home just ’rest and take 2 aspirin or whatever’, you know… And so I really attribute to her – is me making it and the emerg – like anything to do with the heart, […]
Ginette struggles to find a local cardiologist following her heart attack and triple bypass surgery in Florida.
Transcript
I couldn’t find a doc, a cardiologist for – I think I got back here in May and by December they referred me to somebody which I thought, I think I saw in January the year after. And it was probably about an hour interview. It was all question and […]
Slow Progression
Some women described more difficulty getting access to specialist care when they presented with various symptoms asking for help from family doctors, cardiologists or emergency department physicians. They wondered if access might be blocked by the attitudes and assumptions of doctors or by system issues [see our page on Care Delivery].
Deb went to the hospital multiple times when having a heart attack and was repeatedly turned away.
Transcript
I went back to the hospital 6 times, twice a day for 6 days in a row. At one point there was one doctor that said to me ‘Oh Deb you’re feeling this way because you’re fat.’ Anyway, he sent me home. So by then, I had said to them […]
Naomi feels that poor communication caused delays in her care because she was transferred back and forth between two hospitals.
Transcript
I think it really was just falling through the cracks of the system but when I returned to the hospital at the end of August with heart failure I should have gone to [cardiac center], but I went to the [trauma center]. They are completely different health authorities and so […]
Kept Calling the Doctor
Some women talked about referrals that are never sent or received, or not being able to get an appointment. Some described a lack of follow-up by clinics or services, requiring them to advocate for themselves by repeatedly calling offices.
Anne2 never heard anything about her potential heart surgery so she contacted the surgeon herself.
Transcript
It was actually my cardiologist here who was supposed to refer me – that was supposed to be in June. Come August I hadn’t heard anything. And I wasn’t getting any answers here [home city] so I actually called [larger city] myself and asked if they had received my referral. […]
Amanda continued to be dismissed by her cardiologist, in spite of worsening symptoms.
Transcript
So I kept calling this cardiologist, I was like, ‘Something’s wrong, I can’t eat, I can’t – there’s no way I can retain anything.’ And again, I was dismissed and, ‘Just wait for the pills to work, you’ll be fine.’ Fast forward, I was not fine. So maybe about a […]
Anne1 never received any follow up from her clinic and was left to manage on her own.
Transcript
I was told to call the clinic if I had problems. Now the clinic – they do the very best they can. They’re incredibly busy, so I wasn’t surprised when I didn’t hear from them again, because I didn’t call them, so they just assumed everything was fine. But I […]
Where You Live Matters
Where you live influences what kinds of health services you can get access to. Women living further away from large urban areas described not having access to specialized health care professionals such as cardiologists and cardiac surgeons. They had to travel long distances for emergencies and acute care, then continued to do so for follow-up tests and care.
Jennifer had to travel long distances for tests and follow-up until services became available closer to home.
Written testimony
And I felt fortunate that that doctor was actually in my hometown. Because in the testing I had done earlier, I had to travel four hours to Vancouver and see a couple of doctors there and I had to return to get a biopsy and return to get a nuclear test that are not available in my hometown.
Women told stories about how hard it was to find a cardiologist and how long they had to wait to see them. The lack of specialists providing cardiac and heart failure care is particularly difficult for those living in small towns, who may have to travel or be transported to other provinces for care. Tara hears about this problem for many women – “I know from my work supporting other women that this has been their experience – they’ve had a really hard time finding cardiologists. They feel there’s a big gap. They’ve been diagnosed with this and they go home and they’re like ‘OK, find a cardiologist’ and it’s like ‘where are they hiding?’ – you can’t find one”. Barbara feels the same, saying “if you are not in the city centre or right in the core, you are getting sublevel care. There’s just not the specialists, you know.”
Louise describes the impact of having no cardiologists where she lives.
Written testimony
I lived in a small Alberta city, and there wasn’t any cardiology or specialists there. After learning that I had a silent heart attack in 2011, my family doctor sent me to a local family doctor who had an interest in geriatrics. I was 57. The new doctor sent me for a stress test and then I never heard anything again. I continued with the same heart medications. Five years later when I was hospitalized for a different health issue, my heart meds were dropped from 4 to 1. I noted it, but trusted my doctor and continued on. Three months later, in Feb 2016, I had a STEMI heart attack. Also called a Widowmaker. There was no cardiac intervention available to save me. And so the ER used clot-busters and flew me to Calgary, which was 300 kilometres away. I was there for 12 days. Having no emergency heart help available within the ideal of 90 minutes did irreversible damage. But I was lucky and survived.
Dido still had problems getting a cardiologist even after relocating due to doctor shortages and waitlists.
Transcript
There was no cardiologist to speak to. So when I ended up in the hospital one of the cardiologists that I saw seemed to be completely disbelieving my story and did not believe that I had a cardiologist in [previous city]. I had left [previous province] with this report and […]
Joanne speaks about the lack of cardiologists in her area and how getting a second opinion in a larger centre was critical to her receiving care.
Transcript
Another issue with being [up north] is that we don’t have cardiologists so you have to go outside. You have to get a referral out of town and you basically have to go wherever they send you. But because I felt that I wasn’t getting the care, I wanted a […]
When hearing that she would need to go out of province for heart treatment, Amanda felt devastated and realized that her life would never be the same.
Transcript
The same cardiologist I was referred to came in and said to me ‘Ya – none of the medications are working for you. [home province] can’t help you anymore’. And he said ‘so I called my colleagues in [new province] and they have accepted your case and you’ll be medevacked […]