Treatment and care
Choosing your healthcare provider
You may work with a range of health care providers to manage your HIV infection including general practitioners, infectious diseases specialists, sexual health specialists, complementary therapists, nurses, gynaecologists, physiotherapists, psychiatrists, counsellors, and social workers. Some you may use briefly. Others will become the backbone of your health care. Ideally, your health care providers will use a team approach to optimise your overall health and wellbeing.
Choosing your health care providers is an important process because you need to feel comfortable and confident with those providing your care. Consider the following questions:
Am I comfortable with them?
It is important that you trust your doctor’s expertise and advice and that you feel comfortable in their care. Health care providers are expert in particular areas of medicine but … this is your journey. It is important they give you the opportunity to have input on any suggestions they make and listen to any concerns you have. You will know best how HIV and any side-effects from antiretroviral treatment are affecting your quality of life and how you want to progress in the future. It’s important that your health care providers have a personal and professional manner you are comfortable with.
Do they treat other women with HIV?
HIV can impact women differently from men in terms of certain physical symptoms, specific treatments and managing family and other responsibilities. Many women prefer to see a health care provider who sees other women with HIV. You can contact a positive women community organisation to ask if they are able to suggest health care providers living in your area who are experienced working with women with HIV.
Many women prefer to see a woman doctor or other health care provider, particularly for gynaecological or sexual health matters, as they think a woman practitioner is more likely to be sensitive to specific issues affecting women, such as menstrual irregularities, cervical screening or pregnancy. Whether you choose a male or a female health care provider, it is important to find a practitioner who is sensitive to gender and family and lifestyle issues.
If they don’t treat many people with HIV, are they willing to learn about HIV and its treatment so I get the best care?
HIV antiretroviral treatments are very complex and innovations in treatment are frequent, so in Australia they can only be prescribed by doctors who have qualified as an ‘S100 prescriber’. You will need to be monitored by an S100 prescriber but may also rely on a local GP who will need to have a basic understanding of HIV medicine. Clear lines of communication between your S100 prescriber and your GP will be important for you to get the best care.
Will they explain the benefits and possible side-effects of any treatment?
Starting antiretroviral treatments early can deliver great benefits in the long term. HIV treatments now generally produce far less debilitating side-effects than they used to. However side-effects vary and it is important for your doctor to explain all possible risks and benefits of any treatment, including what you can expect when you start, to help you decide which treatments you want to take (see treatments). You need as much information as possible to make your own treatment decisions.
Will they help me manage side-effects?
Your doctor should clearly explain the potential side-effects of any treatments and how best to deal with them. If you are worried about possible side-effects, you could ask your doctor about whether it would be useful to make specific plans (like having a few days at home for short term side-effects) or have some simple remedies on hand (like Imodium for diarrhoea) when you start taking new drugs.
If you are experiencing side-effects from your HIV treatment, don’t be embarrassed or afraid to talk to your doctor about them. Don’t suffer in silence. Some side-effects can be managed very simply and many last for only a short time as your body gets use to the drugs. Others may require additional support or it may be necessary to try a different antiretroviral therapy. Peer support can be invaluable when dealing with any apprehension surrounding changing treatments.
Will they respect my decisions?
Some women with HIV have experienced pressure from their doctors regarding particular HIV antiretroviral treatments. Remember, the doctor is a medical expert but the decision whether or not to take particular treatments is yours alone. A good doctor will appreciate that most people don’t make HIV treatment decisions lightly, and that most woman will have carefully considered their reasons for starting or changing treatment.
Will they consider complementary therapies and alternative ways of managing symptoms and side-effects?
Some women avoid telling their doctor they are using any complementary therapies because they are worried their doctor will be judgemental and won’t support them. Some doctors may be less supportive than others but most are prepared to work with complementary therapists to ensure their patient is getting the best quality care available. If you are interested in complementary therapies, it may be a good idea to be upfront about it and establish whether your doctor is prepared to work co-operatively with other therapists (see complementary therapies).
A note on complementary therapists
Many women with HIV use complementary therapies, however, this area is largely unregulated so it can be confusing or difficult to work out whether an alternative therapist is appropriately qualified and whether the treatments they are prescribing are safe (particularly if you are using any antiretroviral treatments). Some complementary therapies have professional bodies which can be a guide to the qualifications of the therapist although it’s not a guarantee of their work. Your local PLHIV support organisation should be able to refer you to qualified practitioners who are experienced in working with people with HIV. Avoid any therapist who claims to be able to ‘cure’ HIV (see complementary therapies).
Are they happy to refer to other practitioners?
Good health practitioners will support you in seeking a second opinion if you are making a difficult decision. They will understand that it can be useful to have another view or to seek confirmation of their assessment. Your doctor should also have a list of healthcare providers to whom they can refer for assistance in other areas, such as emotional or psychological support.
What are their fees?
It’s important to consider whether you can afford the treatment options you choose. Most HIV services are offered free or are heavily subsidised. Private specialists (such as gynaecologists) will charge so it’s important to ask about the cost prior to a consultation. Complementary therapies can be expensive. HIV support groups may offer cheaper access to alternative therapies such as massage. You may also be able to negotiate a discount with a regular therapist if you are on a pension or a low income earner.
Will they keep my information private?
All doctors and other health care practitioners are bound by strict laws regarding privacy. Your doctor is not allowed to disclose information about your health, including your HIV status, to other people unless they are directly involved in your HIV care or they have your consent.
What if I want to change doctor?
If you are unhappy about the service you are getting or your doctor leaves the practice, you might want to change doctor or try more than one doctor. You can arrange to have your medical records transferred to your new doctor. If you wish to make a complaint, talk to your local HIV service organisation about how to go about it.