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The doctor will see you now
Every year around Australia a significant number of people find out they are HIV-positive in clinics that are unequipped to deal with the diagnosis. David Menadue reports.
When Narelle visited her doctor in Melbourne's outer suburbs her constant tiredness and lethargy was put down to possible chronic fatigue syndrome. Fortunately, the doctor had the insight to order a range of tests, just to be sure — including one for HIV. The result proved positive.
"It was the last thing I expected and even today I'm not totally sure of where I put myself at risk," says Narelle. Still reeling from the news, Narelle’s surprise diagnosis was compounded by what happened next. “The GP didn't have a clue where to refer me or what to tell me about my diagnosis — whether I would live or die, available treatments, nothing,” she says. The GP eventually referred Narelle to her local hospital which then referred her on to the Alfred Hospital. Where — after several months of despair and anxiety —Narelle finally received the specialist care she needed.
Narelle’s experience is being played out across the country, especially in rural and regional Australia. Patients are wandering in to their local medical centres with no particular thought that they might be at risk of HIV and are learning the often distressing news of their positive status from a relatively inexperienced GP.
Karen Blyth, from the Victorian HIV Consultancy Team at the Alfred, says that they hear "horror stories" all the time. "We know there are people being diagnosed in less than favourable situations,” she says. “I was told of a pregnant HIV-positive woman who was informed of her status as part of a pregnancy screening and the GP suggested she might have to terminate because of the risk of transmission to the baby.” Fortunately, the woman in question received more informed advice and — with treatment — was able to give birth to a healthy HIV-negative baby.
With the launch of a new Victorian initiative called GP Connect, Blyth is hopeful that such stories will soon become a thing of the past. GP Connect gives GPs outside of the HIV treatment sector the opportunity to link up with specialist nurses who can offer care and support to newly diagnosed patients.
This includes explaining to the newly diagnosed the reality of living with HIV in 2017. “Which,” says Blyth, “is a lot less scary, than say, the 1990s.” After all, these days – given the excellent treatments available — an HIV diagnosis doesn’t deter people from living a normal healthy life. Through GP Connect, newly diagnosed patients are also provided with contacts to HIV support organisations and other useful information. The program also provides education to GPs themselves, including HIV prescriber training. “GP Connect offers a visit to the GP practice by a nurse experienced in HIV medicine,” says Blyth.
Similar programs to GP Connect operate across Australia. In New South Wales, for example, NSW Health runs the HIV Support Program (HSP). A key component of the HSP is the stipulation that all people diagnosed HIV-positive receive “appropriate clinical management”. With that in mind, the program offers a range of services for the newly diagnosed patient, including treatment management, psychosocial support, partner notification, and specialist community care.
When it comes to early intervention, Queensland has adopted a novel approach which involves HIV-positive people providing immediate support to others when they are newly diagnosed. Employed by Queensland Positive People and located across the state, these so-called ‘Peer Navigators’ are on hand to guide people through the complex environment of HIV treatment and care. “For people newly diagnosed, trust is a major issue and trusting a doctor may be complicated and even a bit scary,” says QPP President Mark Counter. “However, trusting another positive person who has already been through the experience helps them through the journey.”
Of course, a GP will need to be involved in a positive person’s HIV care at some point. It’s essential, then, to find one you’re comfortable with — and one who is comfortable with you. After all, the last thing you want is to feel judged or stigmatised. “It’s important to look for a doctor that fits you and who you get on well with,” says HIV advocate Ruan Uys. “It’ll take a couple of goes to find that doctor that really suits you. It can be hard to sift through that process, but once you find the one that works for you things get easier.”
There are several steps you can take to find the right doctor. First off, ask another person with HIV or contact your local HIV organisation. They’ll be fully clued up to recommend a doctor to suit your needs. Don’t hesitate to consult with your prospective doctor beforehand. Ask plenty of questions to find out if you’re compatible. And, once you’ve made your choice, always try to be completely honest with them. After all, as HIV advocate Abby Landy says: “We spend so much time having to see the doctor; the reality is it’s an ongoing relationship, so I think having someone you can trust and build up a rapport with is important.”