Your next steps
There are now many ways to take an HIV test which include sexual health clinics, community testing clinics and increasingly by using a home testing kit. Positive test results, sometimes referred to as reactive always need to be confirmed by a further blood test at a specialist HIV clinic. Sexual health clinics will usually arrange this appointment for you, whereas community testing clinics may sign post you or where possible make an appointment on your behalf. It’s important that you make an appointment with a specialist HIV clinic yourself if you’ve used a home testing kit so the test result can be confirmed.
If you’re not sure what to do next you can speak to the team at THT Direct who will help you find your local specialist HIV clinic. You don’t have to attend a clinic in your local area as HIV care is open access, which means you can select a clinic of your choice, regardless of your home or work location.
Our top tip is to avoid using the services of Dr Google and only visit trusted websites, details of which you’ll find in our useful links page It’s important you have the most up to date information relating to living well with HIV, the treatment and care you can expect to receive.
Your first clinic visit
The first appointment at your specialist HIV clinic should take place within 2 weeks of your initial test result. This appointment can be quite daunting, so it can be helpful to take a member of your family or close friend along to support you at this time. The clinic team will make you feel welcome and at ease as they understand how difficult it can be, particularly if you attend on your own.
This appointment is likely to be with an HIV specialist nurse or health practitioner, who will take several confirmatory blood samples, and talk through further help and support that is available either within the clinic, or via other support agencies. The outline of this first appointment will vary depending on the location and size of the clinic, but should include some or all of the following:
- Outline of the services available and what to expect in the coming weeks and beyond. You’ll be asked some questions about your sexual health and emotional wellbeing. Sometimes it's necessary to see a Dr, where HIV related symptoms are present or where it is known you have very recently acquired HIV. This appointment should ideally take place within the next day or two. This is nothing to be concerned about, but it’s important to talk to the nurse or health practitioner about any worries you have.
- You can expect several vials of blood to be taken, sometimes as many as 12, which is normal at this stage. These baseline bloods will give your Dr most of the information needed to plan your treatment and care.
- You’ll be given the opportunity to discuss any immediate worries or concerns you have, with further information or referrals to appropriate support services being made within 2 weeks of this first appointment.
- Some clinics provide in-house peer support services, where you can talk to a volunteer who is also living with HIV. It is well recognised that peer support is a vital part of your ongoing care, so it’s important to ask about this service. You can also visit our online Peer Support page where you can self-refer, and make an appointment online.
- There is usually a discussion about contacting your recent sexual partners, which can be a bit worrying. Your clinic team can do this anonymously if you have contact details available, and would prefer not to do this yourself.
At the end of this appointment you should make a further appointment with a HIV specialist Dr within the next 2 weeks; a total of 4 weeks after your initial test result if this is possible.
Your first Doctor’s appointment
This appointment should be within 2 weeks after your ‘bloods’ were taken, approximately 4 weeks after your initial positive result. Sometimes it’s necessary to see a Dr sooner if you are experiencing symptoms or illness related to HIV. This isn’t something to be concerned about and is standard practice to ensure all aspects of your care are considered. In some clinics you may see an HIV Clinical Specialist Nurse Practitioner, rather than a Dr. These specialist nurses have additional training and support the team of Dr’s. They can prescribe treatments and arrange for referrals to other services and specialties for you.
The majority of your blood test results will be available for this appointment, although some take a little longer to process. Specialist tests that look at the genetic make-up of the virus, drug resistance tests, and occasionally viral load can take a little longer to be available. Many clinics will use regional labs for processing their blood results, whereas some larger clinics / centres have their own lab facilities. This may impact on the time taken for blood results to become available. It’s worth asking your Dr about test turn-around times if you think this would be helpful for you.
Your Dr or Specialist Nurse Practitioner will cover many of the following areas, although there will be variation based on clinic policy and your own individual situation:
- An explanation of what the appointment will cover, and an opportunity for you to ask any questions you have.
- A review and explanation of your blood results, what these mean and a discussion around any further tests may be necessary. Sometimes your Dr will make referrals to other specialist departments, again this is nothing to be concerned about, but do discuss any concerns you may have, particularly around information your Dr will provide in his or her referral.
- Your Dr will ask about your general health history which may include some of the following:
- Symptoms you may have now or had in the past.
- Other medications you take, prescription and over the counter items.
- Your knowledge or HIV and how transmission occurs.
- HIV status of your sexual partners and testing of young children (where appropriate).
- Your reproductive health, conception and pregnancy plans.
- Lifestyle including use of alcohol, tobacco and recreational drugs.
- Work environment and employment status.
- Vaccination and travel history.
- Previous or current intimate partner violence.
- These questions help Dr to build up a good picture of your circumstances, general well-being, gain a better understanding of how best to organise your care and identify further support needs you may have. It’s helpful for you to discuss any concerns you have, particularly in relation to drug, alcohol, other substance use together and any other more personal information you may feel is relevant.
- Dr may undertake a physical examination, which will be guided by any symptoms you describe, or have experienced. If not already recorded your Dr may take your blood pressure, resting heart rate and record your weight, calculate your BMI and possibly your 10-year cardiovascular risk assessment. These are all standard measurements and nothing to be worried about.
- There may be a discussion about starting treatment and what options may be most suitable for you. Treatment options will be informed on the specialist information such as the genetic make-up of the virus, resistance tests and a genetic test that confirms it is safe for the drug abacavir to be used as part of your treatment.
- Your Dr may arrange follow-up appointments if you need any vaccinations, boosters or have any specific support needs which may include an appointment with a clinic-based peer support volunteer. As previously mentioned it is well established that peer support should from part of your HIV care, although many clinics do not yet have this service available. We recommend you visit our online peer support page to arrange an appointment if peer support isn’t available at your particular clinic, or you feel online peer support may suit you better.
- Your Dr should ask your permission to contact your GP and make a note of this in your records. If you don’t want your GP to be involved, discuss this with your Dr and ask that no clinic letters will be sent to your GP without your express permission. You may also wish to ask about information that will be included in referrals your Dr may make to other services, within your clinic setting or to external service providers.
At the end of this appointment you should be clear about your next steps with regards to follow-up appointments, referrals to other specialists and importantly when you can expect to start treatment. If there is anything you’re not sure about ask your Dr to clarify things.
Your Treatment Plan
Starting Antiretroviral Therapy (ART) as soon as possible after your diagnosis is now recommended regardless of your CD4 count. Everyone should be offered the option to start treatment during the first visit with their Dr. Some people want to start treatment as soon as is practical, others may wish to wait little, so they can have further discussions with close family, friends, other support networks to make sure they feel able to commit to taking daily medication. It’s important to talk to your Dr about the clinical need to start treatment verses your readiness to take daily medication.The START study provided very good data and confirms starting treatment is beneficial for our long-term health and well-being.
Most people start treatment in the first 3 to 6 months of receiving their initial diagnosis, but this decision should be guided by your Dr and clinic team, as there may be circumstances where immediate treatment is vital. After your first Dr’s appointment a further appointment will be made to talk in more detail about your treatment options and what to expect for the first few months after starting treatment.
Here are some important things to talk through with your Dr when thinking about starting treatment:
- Your readiness to start and how you feel about taking daily medication at a regular time each day.
- Your understanding how treatment lowers viral load, keeping you well, and treatment as a method of prevention.
- Discussion about your day to day routine and how best to make taking treatment part of this.
- Any concerns you have about the impact treatment may have on your work (shift patterns, early starts, regular travel with work, different time zones).
- Some drugs have specific food requirements, it’s important to discuss these if you your meal times are irregular or feel food requirements would be difficult to manage.
- The number of individual tablets any proposed combination will contain, sometimes referred to as pill burden. This can be important for many people.
- Any privacy concerns you may have where you’re worried about being able to take your treatment as prescribed.
There are several treatment options and combinations your Dr may consider, based on your individual clinical requirements, with the final choice also taking into account the day to day practicalities you’ve discussed with your Dr. Having a good 2-way discussion and arriving at an agreed choice of treatment is essential. You can find out more information about treatment options by visiting our Plus Treatment page.
Your ongoing clinic appointments
Once you’ve agreed the combination with your Dr there will be a series of follow-up appointments to monitor your progress. Below is an outline of what you can expect once you’ve agreed to start treatment. This will vary by clinic, but should include the following:
- Meet with the clinic pharmacist to discuss your treatment and any other prescription drugs you take, supplements, regular over the counter items.
- Who to contact at the clinic if you have any questions about your treatment, experience any difficulties with adherence or have side effects. This is usually one of the clinic nurses, but could also be a pharmacist or Dr, depending on your circumstances.
- After being on treatment for 2 to 4 weeks you’ll be asked to have bloods taken to check your liver and kidney function, full blood count (FBC) if you’ve been feeling unwell, and a urine sample may also be requested.
- The results of these blood tests are usually available within 3 to 7 days, and your clinic team will contact you if there is anything they need to discuss with you. Some clinics will arrange a follow-up appointment (usually nurse led) to discuss these initial results, and also take the opportunity to talk through how things are going, particularly in relation to treatment adherence, any side effects and new symptoms you’ve experienced.
- Blood samples should be taken again at 4 to 6 weeks after you start treatment to make sure your treatment is lowering viral load as expected. It is expected that viral load will reduce by a factor of 10 in the first 4 weeks of treatment (50,000 down to 5000 or lower).
- Blood tests for CD4 cell count are usually taken 3 months after starting treatment as viral load is the most important marker. Some clinics are happy to check CD4 count at 4 weeks of treatment, so it’s worth asking if this is something you would like your Dr to include.
- You should see your Dr 4 to 6 weeks after starting treatment, so he or she can review all your results and talk through any difficulties you’ve experienced either with adherence or possible side effects. Of particular importance here is a review of things like changes in sleep pattern, mood, anxiety or any other things you’ve noticed.
- If all your results are in line with expectations and things are going well for you, further blood tests and appointments should take place at 3 and 6 months.
The first few months following your initial diagnosis can seem very daunting. There are usually lots of blood tests and clinic appointments to attend, but once everything starts to settle down clinic appointments will reduce in frequency. The majority of people living with HIV attend clinic at 6 monthly intervals, with medication being provided for a six month period, often via home delivery service, which helps reduce treatment costs (no VAT is payable) and provide you with additional privacy and convenience.
For more information on regular clinic appointments and living well with HIV visit our Plus Living page.