We asked the women we interviewed about their experiences within the health care system and many described feeling satisfied with the system or at least parts of it. They highlighted things they appreciated such as good organization of care, good collaboration amongst institutions, seamless transition from private to regular health care, and their gratefulness to receive care for free. Yet most women also encountered difficulties and problems within the health care system. In the following we present women's experiences with managing their care, navigating the health system, problems they encountered, and their advice on improvement.
Managing their care
Managing their care and navigating the system was something most women had to learn. Women said things like: it's making your own way and being your own advocate, do not back off, don't be afraid, it is a lot of work or difficult and I just followed my instincts or guts. Shelley found that it is hard to manage your own care when you do not have all the information.
You know the care. As an example, in the operating room, it tells you the kind of atmosphere, doesn’t it? I was operated on four times, I am starting to know. Sometimes the way people are interacting could be pleasant, the way they are talking to each other. But some other times! Tabarnouche! I ask them: “Hey, could you put me to sleep before?” I couldn’t take it anymore!
Women describe the things they do to improve the management of their care, such as writing information down and organizing it in folders; some women selected their own doctors and Ginette thinks you should always have someone with you. Several women changed doctors or asked for a second opinion (see also the page Relating to health professionals).
Did I lose faith? I don’t know what to tell you because I am a little mixed up. Because they almost gave me an insulin shot although I am not diabetic, trusting is difficult. I am more on the defensive now. In general, I am very sincere when I say: “Do not leave a person alone, whether at the emergency, whether in outpatient consultation, wherever.” That’s it, I found it not easy. Not easy!
Some women also mentioned their use or desire to use marijuana, either for pain control or to improve the taste sensation. They felt that this treatment should be available more readily for patients, and although some clinicians are supportive, the systems for prescribing and delivery have not been established everywhere.
Navigating the system
In all, navigating the health care system was not easy for most, particularly when the women had to do so many things in such a short time. They described how things could be made easier, such as being able to speak to a navigation nurse or educating patients about their illness to manage their care. Women had different opinions about taking responsibility for managing their illness. Kathryn stated "this disease is my disease it's not just the doctors' disease and I'm going to do it my way", where Christine on the other hand said "I'm so far removed from anatomy classes and chemistry classes and biology class I've no idea so you're the professionals you need to figure out what is going on".
I’m on the Patient & Family Advisory Council at Cancer Care Ontario as well as for the Regional Cancer Centre here. In Canada we’re behind with patient-centred care. Somehow over the years we’ve given over our care entirely to healthcare providers and that’s not right, it shouldn’t happen entirely.
So the normal course of events would be that then I’d go for 6 months of chemotherapy and because I had one node positive they wanted to also do radiation, both on the breast area and on the supraclavicular area here.
Even though everyone had different approaches and comfort levels in dealing with their disease, coping with the 'system' was sometimes problematic. As Laurie said "my medical records are spewed all over those 9 locations and no one has all of it. I'm the only one who knows the whole story which is not good, super not good". Other women also noted that either they or their GP were the only ones that had the full picture.
Continuity of care
When Laurie heard she had breast cancer her first worry was about having to deal with the medical establishment. Like Laurie, several other women spoke about having to undergo different kind of treatments in different places. Jeanette, for example, was moved from one location to another just after the wire for the biopsy was put into place and had to hold a cup on her breast to protect the wire. Ginette spoke about the financial and the physical impact when having to go to many different locations. Travel distance to receive care was a problem for several women. Radiation services for Jocelyn were a 2-hour drive away; some women had to stay in another town for treatment, see Radiation therapy.
Communication with healthcare teams as well as between institutions were highlighted as problems for some.