Feeling anxious about medical appointments is a really common experience, and HIV clinic visits can feel especially difficult for those experiencing stress or stigma related to their HIV status.
We’re here to tell you what to expect from your HIV clinic visits and answer common questions about HIV care, so you can feel more confident about clinic appointments.
What to expect from an HIV clinic
Your HIV clinical team should involve you in your care as much as possible. Being involved in your care means you have all your options explained to you and have all the information you need and feel empowered to make informed decisions about your care. This means that your clinician should:
- Be respectful, sensitive and make sure they understand your thoughts and perspectives on your diagnosis and treatment.
- Take time to fully explain what they say to you, answer your questions and make sure you understand them.
- Explain all your treatment options and respect your right to make decisions about your care.
Your health is in your hands
You can always stop and ask questions if you don’t understand something. If you know in advance you have questions you want to ask, it’s worth making a note of these and bringing them to your appointment as a reminder. If you have any questions after your appointment, you can call or email to ask to speak with someone.
You can request to see a clinician of your same gender. If you want to, you can bring a friend, family member or partner with you to your appointment, or request another member of staff to be in the room with you during tests or examinations. There are also interpreter services and communication support available for those who need it, including non-English speakers, and those who are d/Deaf or hard of hearing.
You are always allowed to say no; no to going to an appointment, no to a blood test, no to treatment. Clinic staff will never force you to do anything you don’t want to, but they will encourage you to engage with treatment in order to prevent the development of late-stage HIV.
Clinical language
Something that can be confusing or make people nervous is the clinical language used to talk about HIV treatment. So, let’s go through some key terms:
- CD4 count: CD4 cells are a type of cell in your body that help to fight infections, and the “count” is how many of them are in your blood. Untreated HIV attacks CD4 cells and causes the count to drop, weakening your immune system. Keeping an eye on your CD4 count through regular blood tests is necessary to make sure that your medications are working to keep your immune system healthy.
- Antiretroviral therapy, or ART for short, refers to the medications that treat HIV and prevent the virus from attacking the immune system. What can be confusing is that ART doesn’t refer to a specific medication or treatment but is actually a term that covers all the different types of HIV medication.
- Viral load is the amount of HIV in your blood that shows up on a blood test. ART will bring viral load down to undetectable levels, meaning there is not enough virus in the blood to show up on a test, and it’s not negatively impacting your health. When someone’s viral load is undetectable, they cannot transmit HIV to anyone else, which is what we mean when we say Undetectable = Untransmittable (U=U).
- Viral suppression is what ART does to HIV – it suppresses the virus so it cannot create more copies of itself, lowering your viral load to undetectable levels. This is called being virally suppressed, and it’s what you’re aiming for with your treatment.
- Treatment adherence is how closely someone follows their treatment plan. Following a treatment plan means taking medications as prescribed, attending appointments and following recommendations made by your medical team. Not following a treatment plan, or only following it sometimes, can cause viral load to increase or for HIV to become resistant to medication.
What happens at an HIV clinic appointment?
Your first appointment will usually be in-person at your HIV clinic. After your clinician introduces themselves, they will usually do a physical exam to check things like your height, weight, and blood pressure, and perform some blood tests to look your viral load and CD4 count, as well as to check your kidney and liver functions. They will ask about your HIV diagnosis and how you’re feeling, check on your mental health, ask about your medical history and lifestyle, and answer any questions you might have. You might also discuss your blood test results, and be recommended a treatment plan, or this might be part of a follow-up appointment.
When you are feeling well and on effective treatment, you’ll be offered routine check-ups once or twice a year. At a check-up, they’ll ask how you are and make sure your medications are still working by looking at the load on a blood test. They might also check your CD4 count, but less frequently: for people established on ART and virally suppressed, this may be once a year.
Why should I go to HIV clinic appointments if I feel healthy?
When left untreated, HIV damages the immune system over time until the body can no longer fight infections, even when someone doesn’t have any symptoms. Over time, this damage escalates into late-stage HIV and becomes less treatable, which is why starting treatment before symptoms appear is so important to living a long healthy life with HIV.
Why do I have to go to HIV clinic appointments regularly?
If you’re starting ART for the first time or restarting it after not taking it for a while, then your clinician will want to see you every few weeks or months to check if you experience any side effects from the medication and monitor your viral load to make sure that the medications are working to suppress your HIV. Most people reach an undetectable viral load within one month of starting treatment, and almost everyone does so within three months of starting treatment.
Once you are on effective treatment, you’ll have an undetectable viral load. This means that you don’t need frequent appointments, but it’s still important to routinely check that your HIV medication is still working, which is called monitoring. Sometimes, if medication is taken inconsistently or incorrectly, HIV can become resistant to a medication. HIV monitoring appointments will check your viral load and CD4 count and make sure you’re still doing well.
What can I do if I’m unhappy with my HIV clinic?
You can always change clinics if you’re not happy with your treatment. You don’t have to give a reason if you don’t want to.
You can also make a complaint, either by speaking to someone at the clinic or by contacting your Patient Advice and Liaison Service (PALS). Raising an issue with clinic staff or PALS first gives them a chance to try and resolve your issue before escalating to a formal complaint, which can sometimes take longer to investigate and resolve. The process for making a formal complaint is different from clinic to clinic, so check out the NHS Feedback and Complaints page for more information.
If you have questions about accessing HIV clinics that aren’t answered here, or you still feel anxious, please reach out to your clinic or GP directly to discuss your concerns, or access a peer support service for advice.
You’re entitled to specialist HIV care that is accessible and meets your needs, and you always have a right to be treated with dignity and respect, and to be fully involved in all aspects of your care. Clinic visits are an important part of taking care of your wellbeing, and key to living a long, healthy life with HIV.
