TALKING TO YOUR DOCTOR

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PLANNING FOR YOUR HIV APPOINTMENTS

Once you've settled into your treatment regimen and are undetectable, you’ll likely only need to visit your clinic once or twice a year. Some of these appointments may even be online or over the phone.

Since many clinics only allow for 10–15 minutes per consultation, it is worth being prepared. Thinking about what you’d like to talk about and prioritising these discussion points before your consultation will help you get more from the time you have with your HIV healthcare team.

Remember, talk about what’s most important to you and don’t hold back. After all, these HIV appointments are about you.

MAKING THE MOST OF YOUR APPOINTMENTS

Making sure you’re prepared is the best way to make the most of the time with your doctor. By taking a moment to think about how you have been feeling since your last consultation and making notes of the things you want to discuss, you can ensure you keep moving towards your treatment goals.

Getting ready

Tom and Dr Laura Waters chat about what makes a good consultation and how good planning and preparation can ensure you get what you want from your time with your doctor.

Questions your doctor might ask

Remember, your consultation is about you and the things that are important to you. So if there’s something on your mind or you have doubts, concerns or questions you want to ask, opening up can help. It doesn’t matter whether it’s related to living with HIV, your health or life in general, discussing it with your healthcare team can help them better support you.1–4

During your consultation, your doctor will ask you questions about different aspects of your life to help build a full picture of your health and wellbeing. To do this, it’s helpful for them if you can be as open as is comfortable for you. Having an idea of the kind of questions your doctor might ask can help you feel more prepared and empowered to talk about your experiences.1,5

How are you?

At the start of your appointment, doctors may begin by asking an open question such as “How are you?”. This open question is an opportunity for you to share how you’ve been feeling and to raise any concerns or issues you might have.6,7

Here are some examples of other questions your doctor could ask:

Depending on what’s relevant to you, your doctor might ask questions about your general health such as:8

  • Have you had any illnesses or felt unwell since we last saw you?
  • Have you had to see any other doctors or medical teams in that time?
  • What medication are you taking at the moment?
  • Have you taken anything new since we last saw you?
  • How have your periods been? Do you need any contraception? Have you had any menopause symptoms?

Your doctor will also ask about your HIV medication to assess if everything is ok and whether you are experiencing any challenges:6,9

  • How have you found taking your HIV medication?
  • Any difficulty with taking your tablet/s?
  • Have you experienced any side effects?
  • Do you think you have missed any tablets in the last week, month, since we last saw you? If so, why do you think that happened?
  • Do you use any resources/tools to help you remember to take your medication or attend appointments?

Your lifestyle can affect your health and wellbeing in lots of different ways. Whatever choices you have made, your doctor is not here to judge them.6 Asking about your lifestyle, gives your doctor a deeper understanding of your needs so they can tailor the support and care you receive.6 Here are some examples of the kinds of lifestyle questions your doctor might:

  • Do you have a balanced diet?
  • How much exercise do you do?
  • How much are you drinking or smoking at the moment?
  • Do you take any drugs? What about chemsex?
  • Are you sleeping well? How many hours sleep per night do you get?

Your doctor will want to get an idea of anything important that’s going on in your life from plans to go on holiday to stress at work.1,6

Your doctor may start with a very open question such as “how is life generally at the moment?”. This gives you the chance to steer the conversation in the direction you want. It’s an opportunity to tell your doctor about anything that may be affecting you, such as worries about your family, relationships, friends, finances, housing or immigration. Should you need support, they will put you in contact with someone who can help.1,6

From there, your doctor may look at specific questions that are relevant to your experience such as:

  • How are things at home? At work? How is your relationship going?
  • Have you seen any of your friends recently?
  • Do you have any plans to have a baby?
  • Are you planning to go on holiday or travel in the future?
  • What plans do you have? What are you looking forward to?

Looking after your emotional and mental health is really important. If there is anything you’re struggling with at the moment, by letting your doctor know, they will be able to connect you with the services that can support you.1,6

Your doctor will want to assess your wellbeing and check whether you’re safe at home and in your relationships. They may ask questions such as:8

  • How is your mental health at the moment? Over the last two weeks, have you felt nervous, anxious or on edge? Have you felt down, depressed or hopeless?
  • Are you sleeping well?
  • Do you ever feel afraid of partner?
  • Have you heard about U=U?

U=U is an empowering message that helps a lot of people feel more confident about their condition. When you have an undetectable viral load, the virus becomes "untransmittable”. This means, with effective treatment, you can’t pass HIV on to your sexual partners.1,10

Find out more about U=U

  • Plan and prioritise

    Before your HIV appointment, it’s a good idea to think about what you want to get out of it:

    • Write down any questions you want to ask
    • Make a note of any HIV symptoms or side effects you have been experiencing
    • Think about any other aspects of your physical and emotional health you want to mention, e.g. recreational drug use, stress, anxiety
    • It is also useful to know the names of your medications, both antiretroviral (ARV) and any others


    If you are experiencing any symptoms, it could be helpful to do some research to see whether they could be related to your HIV medication. Here are some tips for researching your symptoms:

    • Speak to other people living with HIV to see if they’ve experienced anything similar11
    • If you have access to the internet, do a simple search to get some basic information using reputable sites such as HIV i-base, NAM Aidsmap or The Body


    Remember, these sites are not diagnostic tools, but they can provide you with useful information and further sources of support.

    Even though your doctor will do their best not to rush you, most appointments only last a short period of time, so you’ll need to prioritise.

    Focusing on one or two main issues per appointment is a good idea as this will give your doctor enough time to deal with them more effectively.

    Try not to wait until the end of the appointment to ask important questions. If you have something that is really concerning you, talk about it first.

  • Speak openly

    Talk to your doctor about what’s happening and how you feel in as much detail as possible. If it’s affecting you, it’s worth mentioning. This include things that are going on that aren’t related to your HIV care.

    If you’re experiencing side effects from your medication, speak to your healthcare team as soon as possible and be sure to tell them:

    • What symptoms did you experience? How often and how long did you experience them for?
    • How severe were they? For example, did they stop you from doing any everyday activities or make you miss an event?
    • Did you try anything to alleviate the symptoms? If so, did it work?

    Find out more about managing side effects or download a side effects checklist to take along to your appointment.

  • Don’t be afraid to ask questions

    If you have any queries, no matter how big or small, you should ask your doctor. If you don’t understand what your doctor has said, it’s okay to ask them to repeat it or explain it in a different way. They often don’t realise when they start speaking in medical jargon!

    One tip for this is “playing back”. This is when you repeat what’s been said in your own words to make sure both you and your doctor are on the same page and fully understand each other.

  • Keep coming back

    If you’ve raised an issue with your HIV treatment and things don’t improve after your appointment, make another one and go back to the clinic.

    Remember:

    • If your symptoms persist, don’t ignore them
    • Your medication shouldn’t limit your quality of life so contact your clinic
    • Some side effects of ARVs may only be short-term12 but it’s important to still seek medical advice
    • If they persist, let your doctor know – you are not being a bother by telling them about your health
    • Some side effects and symptoms are manageable, but you should never feel like you’re settling for less.

    By having ongoing and open conversations with your healthcare team, you can find new solutions together.

  • Feel supported

    While your HIV healthcare team will do everything they can, if you need extra support, there are lots of other ways to find it.

    Connect with other people living with HIV

    • Peer support can play a very important role in your journey with HIV.2 Connecting with a wide community made up of people living with HIV can be very empowering. You can get some great tips by connecting with support groups and speaking to other people living with HIV about how they manage their treatment.

    Bring a buddy

    • If you feel intimidated by your HCP or find it difficult asking questions, then take someone you trust along with you to your next appointment. Not only can it give your confidence a boost to have someone there with you, but they can also ask the questions you don’t feel comfortable asking yourself.

    Advice on call

PREPARING FOR VIRTUAL CONSULTATIONS

COVID-19 changed HIV care overnight. Today, some elements of your HIV care may take place virtually via the phone or online consultations. Although at first glance, talking to your doctor over the phone may not seem as personal as visiting them in the clinic, it could better suit you and your lifestyle.

Even though you may not be going into a clinic to visit your doctor, it’s still important to be prepared so you can get the most out of your consultations.

Tom and Dr Laura Waters chat about their experiences and share some tips to help you navigate your virtual care and continue to thrive.

COVID-19 changed HIV care overnight. In a world of telephone and video consultations, new challenges and opportunities arise.

To learn more about virtual HIV care, watch our special Positively Thriving episode “Discussions on virtual care”. In this video, Tom and Dr Laura Waters chat in detail about what COVID-19 meant for people living with HIV and how they worked together to stay in control.

Planning for your HIV appointments
Planning for your HIV appointments

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Managing HIV treatment side effects

Different medicines can cause different side effects: short-term, longer term, drug-to-drug interactions. These may be the result of the drugs being used to treat HIV – not because you’re doing anything wrong.

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What does ‘healthy’ mean to you?

What does ‘healthy’ mean to you?

There was a time when HIV care focused solely on suppressing the virus. As HIV care has evolved, ensuring a good quality of life for people living with HIV is now just as important as effective HIV treatment and care.

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References:

  1. ViiV Healthcare. Positive Perspectives Study, Wave 2 results report. Available at: https://viivhealthcare.com/content/dam/cf-viiv/viivhealthcare/en_GB/files/211203-updated-pp2-report-v9.0.pdf. [Accessed July 2023].
  2. Flickinger TE, Saha S, Moore RD, et al. Higher quality communication and relationships are associated with improved patient engagement in HIV care. J Acquir Immune Defic Syndr. 2013;63(3):362-6.
  3. Wachira J, Mwangi A, Chemutai D, et al. Higher clinician-patient communication Is associated with greater satisfaction with HIV Care. J Int Assoc Provid AIDS Care. 2021;20:23259582211054935.
  4. National Health Service. Living with HIV and AIDS. Available at: https://www.nhs.uk/conditions/hiv-and-aids/living-with/. [Accessed July 2023].
  5. Chen WT, Wantland D, Reid P, et al. Engagement with health care providers affects self-efficacy, self-esteem, medication adherence and quality of life in people living with HIV. J AIDS Clin Res. 2013;4(11):256.
  6. Centers for Disease Control and Prevention. How do I keep patients with HIV in care? Available at: https://www.cdc.gov/hivnexus/hcp/clinical-care/. [Accessed July 2023].
  7. Takemura Y, Sakurai Y, Yokoya S, et al. Open-ended questions: are they really beneficial for gathering medical information from patients? Tohoku J Exp Med. 2005;206(2):151-4.
  8. HIV.gov. What to expect at your first HIV care visit. Available at: https://www.hiv.gov/hiv-basics/starting-hiv-care/getting-ready-for-your-first-visit/what-to-expect-at-your-first-hiv-care-visit/. [Accessed July 2023].
  9. Centers for Disease Control and Prevention. How can I help my patients with HIV start treatment? Available at: https://www.cdc.gov/hiv/clinicians/treatment-care/start.html#art. [Accessed July 2023].
  10. National Health Service. Overview HIV and AIDS. Available at: https://www.nhs.uk/conditions/hiv-and-aids/. [Accessed July 2023].
  11. Bateganya MH, Amanyeiwe U, Roxo U, et al. Impact of support groups for people living with HIV on clinical outcomes: a systematic review of the literature. J Acquir Immune Defic Syndr. 2015;68 Suppl 3(0 3):S368-74.
  12. Montessori V, Press N, Harris M, et al. Adverse effects of antiretroviral therapy for HIV infection. CMAJ. 2004;170(2):229-38.