The experiences and perceptions of participants regarding engagement of people with HCV with GPs will be outlined. Similar experiences and perceptions were provided by participants independent of the basis of their recruitment as people directly affected by HCV (A), had clients affected by HCV (CA) or could provide both perspectives (C + CA).
Engagement about HCV – Disclosure choices and strategies
Participants viewed GPs as a source of general healthcare that potentially includes care for issues related to HCV. Several participants stated that when they were ‘lucky’ to find a good doctor, they would attempt to continue to engage with them.
My doctor’s interested in what’s happening, asks me the right questions. Asks me what testing I’d liked to be done. Won’t write “hep C” on a referral to anyone else, without my express consent. (A)
Some participants held that the benefit of engaging with GPs could only be fully realised if they disclosed their HCV positive status and/or drug use history, placed their trust in the GPs professionalism, and were accepting of the care they received.
You know if I’m sick I’m going to have to say “Might be because …”. I want to go to find out; go to every aspect of why I might be sick. (A)
Where they perceived a lack of benefit associated with disclosure and a risk of consequences in disclosure (either within the patient–doctor relationship, or in their wider lives), people with HCV were cautious about disclosing HCV. A process of judging or ‘sussing’ out the GP before disclosing was repeatedly described.
So I think it would an issue of the client sussing that doctor out and thinking “No I don’t think that they could deal with that,” and I think they’re pretty good at that. (CA)
I can tell what kind of character he is you know. He would be one of those that just, you could just see that. He would go out of his way, but as for other doctors I’m not real sure about that you know. (A)
… clients will just go to drop in, bulk-billing places at times when they need something, and then they [the client] may link with a GP if they [the client] find they got on well with the person ….(CA)
Often participants outlined that they or their clients adopting a strategy of having one GP that they engage with for HCV-related issues, but maintaining non-disclosure with other GPs. Engagement with a nurse trained to support people with HCV to gain appropriate care in a shared care arrangement was also regarded as an effective strategy to maximise care for HCV.
I go between a couple of GPs. I also go out and see [name of doctor] out at [surgery that has blood borne virus treatment specialty] and so yeah. He’s a lot more reasonable. (A)
There’s a hep C place over at the [name of practice] over there and that’s where my nurse is. You know they’re pretty supportive there. (A)
Perception of engagement involving risk to confidentiality of sensitive information
Engagement with GPs that involved disclosure of HCV positive status was seen by some participants as a risk to the confidentiality of this sensitive information, with potential serious consequences. Some participants had not disclosed their HCV status to their work, families, or their intimate partners. They reflected that their illicit drug use was part of their past and that they should be in control of the decision to disclose any of this information. These participants said that they were not suspected of a past drug history and that this history would remain secure if they managed disclosure about HCV.
Well I still haven’t told my parents. (A+CA)
… my partner doesn’t know and I’ll never tell him. I don’t think it’s relevant. (A+CA)
Possible breaches of confidentiality by medical practitioners providing HCV-related care were seen to diminish the non-disclosure choice of people affected by HCV. Participants described people affected by HCV as being ‘on constant guard’ to protect this information. The need for a person’s HCV status to be shared between healthcare workers was questioned, as the participants expected that all health practitioners should use universal precautions to avoid transmission, and considered that this would negate the need to share this information in most circumstances. Where breaches of confidentiality had occurred, this led affected participants to question whether the health practitioners involved in their care understood the significance of their choice to limit the disclosure of their HCV positive status.
… my kids got asked “Could you get your mum to ring the hospital urgently?” and I’d made it really clear I have not told anybody in my family about this, do not leave messages. (A+CA)
I used to tell them [healthcare workers] because “it’s my responsibility of blood you know, infectious blood” and all that sort of thing. And then in at the [name of hepatitis C support organisation] they said “Well actually it is their responsibility. You don’t have to tell anybody.” (A)
HCV-affected participants reported feeling discomfort when their HCV status was recorded on patient records. They felt that the standard practices associated with data collection and patient records presented a risk to confidentiality and control of information. Participants proposed that engagement with GPs was affected by these concerns and that they, or their clients, had not disclosed information, and indeed, avoided returning to practices where they had reluctantly disclosed.
Every worker can look up my records. Do I like that? No I hate that with a passion. (A+CA)
… this form, this is really bad; this form goes to the receptionist and the receptionist keeps it there, puts whatever she wants, [it] sits on the receptionist’s desk and then it gets given back to and given back to the doctor. So this form is floating all around the place … (A)
The understanding of the sharing of information was informed by participants’ involvement in highly regulated opioid substitution programs. One participant perceived that this healthcare was only available on the condition that they subjected themselves to the rules of the program, including being tested for HCV, stating “I’ve got to do a blood test soon” (A), and that information would be electronically shared between the program and GPs, as “It’s all linked” (A).
Perception of engagement involving risk of exposure to discrimination, negative judgement and change to care provided.
Based on their expectations and experiences, participants did not assume that all GPs would be willing to provide care for HCV-related issues in a non-discriminatory, non-judgemental way. Participants stated they understood that GPs could develop negative attitudes to people with a drug history due to being exposed to ‘drug seeking’ or ‘doctor shopping’ behaviour, and categorised this reaction by GPs as somewhat reasonable. The majority of participants detailed how they or their clients had participated in these behaviours to obtain drugs to be used for non-medical purposes.
But you can’t blame the GPs being like they are because you’ve got no idea what some people do to get drugs out of them. (A)
Depending on the doctor you could pretty much talk your way into getting anything you want, but if you do want something in the future and you do actually need it, they’re not going to give it to you if they’ve found out you’ve lied ….(A)
Two participants described GP practices as ‘banning’ a patient in response to patient bad behaviour and an expectation that if a patient was suspected of ‘doctor shopping’ or ‘drug seeking,’ they may be banned. For one patient, such a ban meant that there was no primary health care available in the local area.
…of course when they [patients] act up then they’ve got bans [from attending GP practices] and things like that, so yes there are issues…. I’ve got one client in [neighbouring rural town] that has been banned from every clinic in [major rural centre] plus [neighbouring rural town within travelling distance for client]. (CA)
One participant reported their perception there was a hurdle of stigmatisation to overcome when telling a GP about drug use, which, as a necessary step to getting help, meant that help was therefore not assured. This participant was affected by HCV and described approaching GPs for help for drug issues as part of the process of engaging with them regarding HCV.
You don’t tell a doctor “I’m using drugs. Don’t help me please.” It’s a cry out for help isn’t it? You know. Like it means if you get ignored you’re like “What did I bother telling them for?” Especially when it’s such a frowned upon thing. (A)
Whilst overt discrimination by GPs based on HCV status was not reported, a perception of subtle changes to GP behaviour upon disclosure of HCV status was.
Yeah just her [the GP’s] whole attitude like really changed towards, you know there wasn’t that kind conversation anymore, yeah you know. (A)
Participants reported exposure to discrimination in other healthcare settings and this exposure appeared to be incorporated into their perception of expected risk, and increased their expectation, of discrimination from GPs.
… and he [surgeon] said “I see you’ve had treatment.” And I said “Yeah but it didn’t work.” And it was like he was on a rubber band, he flew back to the back of his chair. … and then he came up with all these excuses why I couldn’t have this operation. (A)
Participants also described experiencing a shift of attributed identity upon disclosure—from ‘patient’ to ‘drug-addicted patient,’ with an associated change to the care received. For instance, participants related that they were prescribed drugs of dependence when their HCV status was unknown, but that GPs would become extremely reluctant to prescribe these drugs once aware of their HCV status. Some participants framed their past illicit drug use as something that they had left behind and as not requiring treatment. Offers by GPs for drug treatment were considered by these participants as well-intentioned, but misplaced and irrelevant.
If I said you know, had injected drugs in the past they would always enquire whether I needed ‘rehabilitation’ and it was if ever I needed any pain relief, I broke a rib once and the doctor said “I can’t give you anything stronger than Panadol unless I send you off for an X-ray.” (A+CA)
Some HCV-positive participants expressed fear of having important aspects of their lives judged by GPs and other healthcare workers. In particular, participants expressed concern that their decision to have children would be negatively judged due to the children being ‘exposed’ to the risk of transmission through household or in-utero transmission.
… I’ve heard some horror stories of what people have you know experienced with GPs and hospitals, … there’s even this feeling that you know you don’t deserve to have children because you know the risk that you’re putting them through ….(A)
Uncertainty about the benefit of engaging with GPs about HCV – Based on perceived misinformation provided and information gaps from GPs
Participants described that they and other people with HCV had developed knowledge about HCV, sometimes over the long duration since diagnosis. They proposed that their HCV knowledge could sometimes exceed that expected of their GPs: “I … found out what I could and what I needed to know” (A). The difficulty of GPs keeping abreast of all of the detail of the conditions that they encounter was often acknowledged by participants.
… hep C [is] not fully understood by GPs and I’m not blaming them for that, just ‘cause they’re trying to grapple with so many attends [sic], that’s impossible. (A)
Some participants also acknowledged that they had misunderstood what they had been told: “I didn’t understand I had hep C” (A + CA).
Most participants reported that HCV-affected people had accumulated experiences of being provided what they perceived to be inadequate or inaccurate information by GPs in regard to HCV. This perception contributed to a lack of certainty by participants that GPs would provide accurate, up-to-date information regarding HCV. Some participants spoke of errors by some GPs, which they attributed to GPs limited knowledge about HCV testing, sometimes leading to serious repercussions for patients. A participant stated one of their clients was given a diagnosis of HCV, which was subsequently found to be incorrect. Another stated that they had been told that they had cleared the virus when they had not.
… she believed she had hep C for over 12 years and was in [rural town] and the GP had never done a PCR test [polymerase chain reaction test that is need to confirm active HCV infection]. (A+CA)
… I was told that my bloods functions were back to normal and that I had cleared the virus. Not knowing any different I believed it ….(A)
Some participants affected by HCV articulated previous gaps in their knowledge about transmission, and suggested that GPs had missed opportunities during consultations to provide such important information. For example, it was reported that GPs did not provide safe-injecting information to those patients they knew injected illicit drugs, or provide information about household transmission to people with a diagnosis of HCV.
Just didn’t tell me how it was passed on or anything like that. I’d been seeing this guy [GP] on and off for 20 years so he know [sic] all my background and everything anyway so I suppose he didn’t even think to mention anything to me ….(A)
Some HCV–affected participants stated that they had an incorrectly reduced perception of harms associated with HCV based on what a GP had told them, or from the GP’s lack of follow-up or encouragement to enter treatment. Some participants expressed unease that clients were not appropriately monitored by GPs, with blood tests or liver scans, for example.
I took the doctor’s on their word and pretty much didn’t worry about it. (A+CA)
… doctors are telling people that you know that they [alanine aminotransferase levels which indicates liver damage or disease] might be slightly elevated but “that’s OK so don’t worry about it,” so they’re not actually giving them information. So as long as you’re not experiencing symptoms then it’s OK. (A+CA)
I am aware that some GPs never do bloods and they don’t seem to monitor people that even if they know that clients got hep C ….(CA)
Several participants who had delayed antiviral treatment as a consequence of a perceived lack of GP concern stated their specialists had indicated that the delay had caused negative effects on their health by the time they commenced treatment.
I did ask doctors that question “Is that OK?” and they would say “Yes” now the specialists say “No mate you should have had this years ago.” (A+CA)
Perception of benefit: Engagement to access antiviral treatment
This study was conducted whilst the new DAA treatments were in the trial phase and several participants who were affected by HCV spoke of the potential of new treatments to have fewer side-effects, contributing to their decision to delay consideration of treatment. Participants indicated that they would revisit their decisions regarding antiviral treatment when the new treatment was available.
They [specialist at tertiary hospital] said that in the future there’d be medication coming out but at the moment I can’t get this [interferon-based] medication because it’s [HCV] not really bad yeah. (A)
Obtaining a referral for treatment by a specialist (required for previous interferon-based treatment) was the only rationale provided by many participants for engagement with a GP about HCV-related issues. Accordingly, patients deciding against this treatment at the time did not consider any benefit from engagement with GPs about HCV.
I mean the only basic help like that that they [GPs] could do for you is, you know, is write you out a referral to somewhere else but I’ve never seeked [sic] help before for my liver problem because of that reason. (A)
Negative perceptions and experiences about the physical side-effects of treatment were relayed by participants and some had decided that treatment was not currently an option for them.
One of my friends went on that thing [antiviral treatment for HCV] to get rid of it but she got really sick from it ….Yeah it dehydrated her brain; she nearly died ….(A)
One participant reported that their GP held negative views of the available, older interferon-based, antiviral treatment and this had led to him refusing to make a referral for a HCV-related investigation or for antiviral treatment: “he was quite clear that I shouldn’t have that …” (A).
Finally, some participants who had sought HCV antiviral treatment at tertiary centres cited situations in which the treatment had not been provided, despite their GP providing them with the required referral and even where the GP had actively followed up the progress of the referral. They recognised that the lack of treatment provision was the responsibility of the tertiary centre and not of the GP, but for these participants, engagement with GPs was perceived as an ineffectual pathway to their goal of antiviral treatment for HCV.
But he’s [the participant’s GP] put referrals in through the [tertiary hospital #1] but I don’t hear anything about the referrals, ay. (A)
… you get an appointment and then they [tertiary liver clinic] pretty much give you a blood test and then they say “come back in six months.” (A)