Managing your health: a guide for people living with HIV

You will work with many different healthcare professionals as you live with HIV. This chapter discusses doctors, nurses, pharmacists and other key professionals, and how to maintain a productive relationship with them.

Healthcare professionals

Doctors

Medical doctors, also called physicians, play key roles in the lives of people with HIV. You will need a doctor to prescribe effective anti-HIV drugs for you, to monitor your health and your HIV infection. It is important that you are treated by a doctor who has experience treating people with HIV. Some people with HIV see a family doctor (general practitioner or GP) who specializes in HIV, and these doctors are sometimes called HIV primary care physicians. Others see a specialist in infectious diseases or immunology who treats their HIV, while their family doctor deals with non-HIV-related problems.

Over time, you may have interactions with other specialists like cardiologists (heart doctors), dermatologists (skin doctors), gynecologists (doctors who look after women’s reproductive health) or obstetricians (doctors who care for pregnant women) for problems that may or may not be associated with HIV. You might see these doctors in a private office, clinic or hospital, by consultation or on an on-going basis.

You may also see other doctors on a one-time or short-term basis, such as in an emergency room, walk-in clinic or a sexual and reproductive health clinic. This will especially be the case if you live in a community where it is hard to find a family doctor. Whichever combination of doctors you have, ensure you give them permission to communicate with each other to allow them to work together in your best interest.

If you are seeing different doctors at different times, it is good to be able to provide some of your own medical details. This could include:

• details of your past medical history, such as surgeries, hospital stays, significant illnesses and any history of illnesses in your family;
• any allergies you have;
• results of any medical tests you have had, such as blood tests;
• all the medications you take, including prescription and non-prescription drugs, herbs and supplements.

Sometimes it is good to keep this written down in your own personal health record and carry it with you to appointments.

Your personal health record

It’s a good idea to keep all of your health information together in one place. A personal health record makes it easier to keep track of your prescriptions and appointments, to collect and review your various test results and look for trends over time. You can record information in case of an emergency, a list of your healthcare providers, your allergies and the questions you want to raise with the various members of your healthcare team. Here is a sample personal health record. Feel free to use it as a starting point and adapt it to your needs.

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Nurses and nurse practitioners

Nurses play a vital role in your healthcare. The nurse at a clinic or hospital can often provide the information, counselling or practical assistance like filling out forms that the doctor may be too busy to do well. Some clinics also have nurse practitioners. These are specially trained nurses who can diagnose and treat many diseases on their own.

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Pharmacists

Pharmacists dispense prescription drugs from a drugstore (pharmacy). They keep careful records and can help you keep track of your drugs, avoid allergic reactions or interactions between drugs, package your drugs in blister packs for ease of use, and provide useful information on taking your drugs regularly without any missed doses. To avoid unexpected interactions among your drugs, it’s best to get them all from a single drugstore, especially if you are filling prescriptions from more than one doctor. Because pharmacists are generally more available than doctors, many people with HIV rely on their pharmacists for information about HIV and their treatment. Pharmacists are also experts on getting your drugs paid for by government programs and insurance companies.

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Dentists

It is important that you have a good dentist who is knowledgeable about HIV and knows that you have HIV. If you don’t have dental coverage though a health plan, some public health departments and university dentistry programs have clinics that provide free dental services. Good dental health is important for people living with HIV. Try to take good care of your teeth by brushing and flossing and seeing a dentist regularly.

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Rehabilitation therapists

Physiotherapists, occupational therapists and other rehabilitation therapists play important roles in the management of many chronic diseases, including HIV (see Chapter 14, HIV and rehabilitation).

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Nutritionists and dietitians

Nutritionists, dietitians and therapists who give advice about healthy eating, and vitamins and supplements can be an important part of your healthcare team (see Chapters 4, Healthy living, 5, Complementary and alternative therapies and 13, Hospital stays).

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Social workers and case managers

Social workers and case managers are professionals who work in clinics, hospitals and many community organizations. They can help in arranging benefits, housing and other forms of practical assistance. They know the health and social service systems and can help you navigate them to get what you need. They often do counselling and psychotherapy as well.

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Community health representatives

Community health representatives are healthcare workers who are mainly located in First Nations and Inuit communities. They are employed by the Band Council or regional health board. The role of the community health representatives will vary depending on the availability of other healthcare workers and how close the community is to a hospital. Generally, community health representatives provide health information, counselling and first aid. They also make referrals and appointments, dispense some prescription drugs, provide advocacy and advise on government policy and programs. Not all community health representatives will have the same level of knowledge of HIV or be comfortable with HIV-related issues.

In some areas, Aboriginal health workers, wellness facilitators or community health workers may carry out similar work to community health representatives.

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Mental health professionals

Doctors, nurses and social workers often help to support your mental and emotional health. Sometimes, you may need the services of more specialized mental health professionals such as psychologists, psychiatrists, counsellors and others. They can provide individual or group therapy for emotional problems (see Chapter 6, Your emotional health).

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Complementary therapists

There are many different types of complementary therapists who can offer non-drug therapies to help support your health. These therapists include Elders and traditional healers working in Aboriginal communities and they can play important roles in your healthcare. They are often outside of the formal healthcare system, so make sure these therapists know about your other healthcare providers and treatment plans, and vice versa (see Chapter 5, Complementary and alternative therapies).

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Administrative staff

The administrative staff (receptionists, secretaries and office managers) at your clinic, hospital or doctor’s office are also an important part of your healthcare team. They control the access to your healthcare providers and are often the “power behind the throne.” In addition to getting you appointments, they may be able to arrange many of the other things you need, such as prescription renewals, forms and referrals, without you having to see the doctor.

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Community support workers

Community agencies such as HIV organizations can also be a valuable part of your support and care team. Most HIV organizations provide a range of support services for people with HIV, ranging from information and counselling to practical supports like food banks. Check with your local HIV organization(s) to see what services may be available. Many other support services may be available in your area as well; HIV organization staff can often help you find services you might not know about.

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Putting together your healthcare team

Your local HIV organization is a good place to start when putting together your healthcare team. The staff and volunteers there can help you locate a doctor with experience treating people with HIV. They can tell you about other services for people with HIV that you may need and they can help you to meet other people with HIV through support groups and social events. They can also provide you with advice, support and tips on how to live well with HIV.

To get in touch with an HIV organization close to you, you can contact CATIE’s free HIV information phone line at 1-800-263-1638 or go to HIV411.

As a person living with HIV, you may see healthcare providers for different reasons at various points in time. You can play an important role to ensure that there is good communication among all the members of your healthcare team by sharing information. Keep your personal health record up to date and take it to all your appointments to help you in this co-ordinating role.

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Building a healthy relationship with your doctor

This section discusses what you can do to build healthy and productive relationships, not just with your doctor, but with all your healthcare providers.

You need to find a doctor who can help you manage your HIV disease—someone you can work with over a long period of time. Some of the things that experienced people living with HIV say they value in their doctors include:

• someone who is knowledgeable about HIV through training and experience, and who has other HIV-positive patients in his or her practice and who keeps up with new developments;
• a doctor who is respectful and caring and who is as interested in you as a person as he or she is in your lab results;
• someone who will be accepting of your lifestyle, with whom you can be open and honest.

Your doctor should run an efficient office. You should be able to schedule an appointment within a reasonable amount of time, not have to wait too long in the waiting room, have long enough appointment times to adequately deal with all your concerns, and feel that your privacy is respected.

These are things that you can reasonably expect from a doctor. But what should your doctor be able to expect from you, the patient? Some of the things that experienced HIV doctors say they value in their patients include:

• keeping your appointments and being on time for them. If you need to cancel, do so with sufficient notice;
• preparing a list of your questions and things you need done in advance of your appointment;
• being open and honest around issues relating to your lifestyle, substance use, drug adherence, alternative treatments and anything else relevant to your health. It is better for the management of your HIV if your doctor has all the information.

To work well with your doctor, try to keep up to date about HIV and related issues. Resources from CATIE and other HIV organizations can provide the information you need to become an informed patient and an active partner in your health care. You can take advantage of the Internet, fact sheets, articles, and newsletters, and there are often lectures and workshops on HIV issues you can attend. While your doctor can be a good resource for some of this information, often he or she is working under time constraints. So, if you have questions that require time to answer, try calling the telephone educators at CATIE or talking with a counsellor at your local HIV organization.

If your doctor is not meeting your needs, there is certainly nothing wrong with finding a new one. Most doctors have a thick enough skin that they won’t be offended if you transfer your care to someone else. However, this is something that only people living with HIV in larger cities can do. In many places, it is hard to find a doctor taking new patients, let alone someone who is knowledgeable about HIV and has the right personal qualities.

If you and your doctor do not see eye to eye on some issues, it is not the end of the world. What’s important is that you continue a dialogue over a number of visits and sometimes agree to disagree. Even in the face of conflict, try to communicate in a spirit of mutual respect.

All doctors are regulated by professional colleges or territorial medical regulatory authorities in the province or territory in which they practice. In the rare event that your doctor’s conduct is unprofessional, you can make a complaint through the appropriate college or territorial medical regulatory authority. The same situation holds for other healthcare professionals, all of whom have national or provincial regulating bodies.

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HIV Patient’s Bill of Rights

• You have the right to be treated with dignity and respect.
• You have the right to hope.
• You have the right to ask questions.
• You have the right to honesty.
• You have the right to a second opinion.
• You have the right to confidentiality.
• You have the right to up-to-date and balanced information.
• You have the right to refuse any therapy.
• You have the right to have all tests and treatment be done with your full informed consent.
• You have the right to your doctor’s full attention.
• You have the right to get important information in person.

How to get on famously with your doctor

Your doctor’s appointment lasts about 15 minutes. That’s not a long time! Here are eight great tips for making the most of those 900 precious seconds. Use the personal health record to help you get yourself organized.

• Jot down symptoms and side effects. These are clues for better diagnosis and treatment.
• Make a note of anything going on in your life that’s affecting your health.
• Have all official information and cards ready: your insurance or health card and your pharmacy’s name and number.
• Keep a list of all the drugs you’re taking (including over-the-counter ones) and all the HIV drugs you’ve ever taken. Also, let your doctor know if you are having trouble taking your drugs regularly and on time..
• Tell your doctor about any complementary treatments (herbs, vitamins, supplements) you’re on. It’s helpful to check for any possible interactions between your medications and supplements.
• Keep a to-do list to check with your doctor: What prescriptions are you running low on? What lab tests do you need? What appointments do you have coming up? Do you need referrals to other healthcare professionals?
• Bring clippings about possible new drugs or treatment strategies you would like to discuss.
• Bring something to read. Doctors are often running late.

Adapted from POZ magazine: Special Edition, Fall 2000.

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Resources

Your Healthcare Team – in Your Guide to HIV Treatment

The Positive Side – Health and wellness magazine containing articles about working with different healthcare providers, such as:

• Top nine reasons to call your doctor immediately – When and why to tell doc what’s up
• The pharmacist list – 7 reasons to get to know the person behind the counter