HIV clinics

You will need to have regular check-ups at a specialist HIV clinic every three to six months. Most men continue to use the clinic where they had their first appointment after they tested HIV-positive, however, you don’t have to. As you will be having regular appointments with your specialist HIV doctor, it makes sense to go to a clinic that is convenient for you. This may be close to where you live or it could be close to where you work. On the other hand, you may want to choose somewhere precisely because it isn’t close to work or home. The important thing to remember is that you have a choice.

"I was diagnosed at a hospital that didn’t have its own HIV clinic so a nurse there gave me some suggestions of where I could go to see a doctor who specialised in HIV. The nurse was really upfront and honest and told me that she didn’t know very much about the clinics and that it might be good to ask around or visit some of them to find the best clinic for me. I had a friend who was positive and he’d been to two different clinics. He told me that one clinic was busy but focused on research and had really good doctors, the other was quieter and offered an email service so you could get blood test results without having to keep going back for appointments. I went for the quieter one because that was right for me at the time." (Ray, 28)

At all HIV clinics, patients are treated as outpatients and so your treatment and care will be free, including prescriptions you may need for your HIV treatment, as long as you are entitled to free NHS care.

Specialist HIV clinics can’t treat you for all medical conditions. In addition to your HIV clinic, it is important that you also register with a GP if you haven’t already. Your GP has to be in the same area as your home.

Having a dentist is important as there are certain oral health conditions which are more common in people with HIV. Your HIV clinic may have a specialist dentist, however they are usually very busy and it can take months to get an appointment. For this reason you may still need to visit your usual NHS or private dentist, and it will help you in the future if you register with a dentist now rather than waiting until you need treatment.

You can read about telling your GP or dentist that you have HIV in the section on Disclosing your HIV Status.

Your first HIV clinic appointment
When you return to your clinic following your initial diagnosis, a specialist HIV doctor will want to conduct a number of different tests. This is quite normal and is done so that your doctor can confirm your HIV status, check your immune system and monitor your general health.

At your first clinic appointment, the doctor will take some blood in order to look for HIV and the amount of HIV in your blood. This test is known as the viral load test. When you were diagnosed with HIV, the test looked for and found HIV antibodies in your blood. Your doctor will also check your immune system by monitoring the level of CD4 cells in your blood. CD4 cells, also known as T-helper cells, are white blood cells which organise your immune system’s response to infections.

You will also receive a full examination to check your general health. This is routine. If you are experiencing any HIV related illnesses or any other heath problems, your doctor will want to discover these as soon as possible, so tell them if you are feeling unwell or have any concerns.

Your doctor will ask you about your medical history and will want to build a picture about how you are coping in general now you’ve been diagnosed HIV-positive. This is a good opportunity to spend as much time as possible talking through your concerns, ask any questions you have, and to start to build a relationship with your doctor. You may find it useful to think about what you want to ask your doctor beforehand and write down any questions you may have. You could buy yourself a notebook so you can write down these questions or any important information your doctor may tell you. Most clinics offer up to half-hour appointments, and are very flexible, so remember they are there for you. Get your doctor to explain all the tests, the reasons for the tests and the meaning of the test results.

It’s also probable that your doctor will want to screen you for other sexually transmitted infections (STIs), such as syphilis, gonorrhoea and Hepatitis B or C. It’s a good idea to get checked out for any of these infections as some show no symptoms at first, so ask your doctor about this when you go to see him.

Don’t be daunted by the number of tests your clinic will perform – careful monitoring of your health ensures that if anything needs attention it will be spotted early on.

"My first visit to my clinic after being diagnosed was a bit scary; even though I had read up on what to expect I was still nervous. I had to give a name and address at the clinic but they told me it was confidential. They even said I could make one up if I wanted! I didn’t have to give them my GP’s details but I decided I wanted to to make sure I was getting the best treatment there too.

I waited upstairs for the doctor and the appointment was bang on time. He wasn’t the friendliest of guys but seemed to know his stuff and talked me through the fact that I needed blood tests to see what my CD4 count and viral load was. I was told I’d have other blood tests too, like liver function and blood fat levels. The doctor explained that I’d need to come back every three months or so they could keep monitoring me. He asked if I wanted to see a health adviser to talk about safer sex and also told me that I should tell any sexual partners who could be at risk. He then talked me briefly through other services they offered, like the nutritionist, and gave me a leaflet.

I also had to have another blood test to reconfirm that I was positive, because I wasn’t originally diagnosed at the same clinic. In my case this was a bit trickier than usual. My blood was antibody negative, which means I hadn’t started producing antibodies to HIV. This was because I was diagnosed about a month after I was infected and it can take about three months for your body to produce antibodies. Because the usual HIV tests detect these antibodies, it was coming back negative for me. I was diagnosed because I was really ill and had symptoms of early stages of HIV infection. They used a special test called a p24 antigen test which can detect early infection. This came back positive.

Because I was diagnosed so early, my doctor asked if I would mind giving an extra blood sample during every visit from now on as researchers could use this to better understand how HIV infection progresses. Most people will have more time to think about it but because it’s so rare to diagnose someone as early as they diagnosed me, they needed a decision quite quickly. A friend of mine had warned me that they may ask about participating in research and clinical trials so I had already had a chance to think it through and in this case I was pleased to help.

It probably sounds like I gave gallons of blood and had a lot to think about but actually it wasn’t that bad. The nurses were amazing and actually had me laughing through most of it – that’s pretty impressive as I hate needles. It was all explained really clearly and I was offered tonnes of booklets to take home and read. I still get nervous going to clinic appointments today, wondering how my immune system is coping with the virus but I’m lucky because the staff I see are great." (Ray, 28)

You can read more about HIV clinics and how your HIV will be monitored in the section on Doctors and Clinics.

There’s also more information about other STIs on our Sex and Sexual Health pages.

Starting treatment
Some men with HIV don’t start treatment until eight to ten years after they became infected with HIV. Some men have to start much earlier. If you do have to start earlier, it doesn’t mean that the treatment will be any less effective for you.

The decision to start treatment is based on the likelihood of HIV related illnesses occurring if treatment is not started (risk of disease progression), versus the potential risk of starting treatment earlier, such as long-term side effects and the possibility of developing resistance to treatment.

Doctors can determine the risk of disease progression by taking blood samples and measuring the amount of virus present and how the virus is affecting your immune system (CD4 count). The current guidelines indicate that patients should start treatment before their CD4 count falls below 350.

If you need to start treatment, your doctor and a treatment adviser at your clinic will explain everything to you. Unless there’s an urgent need for you to start treatment your doctor should give you some time to learn what anti-HIV drugs are available. This will help you and your doctor to make the right choice of drugs to start your HIV treatment with. The treatments available these days are very effective and so there’s no reason why you shouldn’t have a full and long life even if you do need to start treatment straight away. Try to look after yourself, have a positive attitude and remember to take your treatment regularly and on time as your doctor or treatment adviser will tell you.