Getting the most out of your HIV clinic appointment

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Key points

  • Regular HIV clinic appointments are very important.
  • Your doctor or nurse should explain any tests or prescriptions you need and answer your questions.
  • You still need to have a GP because they can help you manage other health conditions and access other services

This page gives you information about going to an HIV clinic appointment, how to deal with any problems, and when it’s best to see your GP instead of your HIV doctor. You might find this information helpful if you’ve recently been diagnosed with HIV, you’ve recently arrived in the UK, or you haven’t been to an appointment in a long time.

Finding the right HIV clinic

The relationship you’re able to build with your healthcare team is one of the most important you will have after you’ve been diagnosed with HIV.

It may take a while to find the right kind of doctor and clinic for you. You may not have a connection with the staff at the first clinic you go to. Friends may be able to make recommendations, but building up relationships will take time. Having a trusting relationship with your doctor is very important. It helps you to take an active role in your care. It can also help you make informed decisions about your options.

Staff at your HIV clinic should:

  • take the time to explain things to you
  • be sensitive to any personal issues you raise
  • listen to you
  • provide you with a range of options wherever possible
  • be open and honest with you
  • be clear when they don’t know the answer to your questions.

It’s important to know that everyone living with HIV in the UK can have free HIV care and treatment. For more information about accessing care if you’re not from the UK, see our page about accessing the NHS as a migrant.

What happens at an HIV clinic appointment?

Regular HIV clinic appointments are important for monitoring your health, especially the results of your blood tests. If you’ve recently been diagnosed with HIV, or if you’re unwell at the moment, you might have appointments quite often. After that, a check-up every six months is normal.

Below is some general information about what might happen during an appointment at your HIV clinic. This can be different at each clinic. It’s possible that your experiences won’t be exactly the same as the ones described here.

Booking your HIV clinic appointment

It's a good idea to book an appointment a few weeks in advance if you’re going to your clinic for a routine appointment. Think about any questions you would like to ask. Write these questions down to help you remember them. If you can’t make your appointment, call the clinic to rebook for another time.

After your first appointment at your HIV clinic you might be offered video or telephone appointments in the future, instead of coming into the clinic. If you’d rather see somebody face-to-face then you can usually ask for an appointment in person instead.

Arriving at the clinic

Try to get to your clinic on time. If you’re late and miss your appointment you may have to wait a long time before the doctor can see you.

When you arrive, go straight to reception. Tell them your name, the time of your appointment and who you have come to see. Tell them your clinic number if you know it. They should make sure that the person you’ve come to see knows you’re here and make a note of your arrival time. Clinics should try to make sure that you are seen at your appointment time, but delays often happen.

If you have a video or telephone appointment, try to find a quiet place to take the call where you can speak openly. If you’re given a timeslot, make sure that you’re ready a few minutes before.

Seeing your HIV doctor

At your appointment, you might see a doctor or a specialist nurse. Specialist nurses are nurses who have extra training, qualifications and experience related to HIV.

If you’re seeing a doctor or nurse for the first time, they should introduce themselves. They should ask for your permission if a student or another healthcare professional wants to be in the room during your appointment. You are allowed to say no.

"Large HIV clinics have a specialist pharmacy where you should go with your prescription."

You should be asked how you are and if you have any concerns. The results of any tests that you have had should be given to you and the meaning of your results should be explained to you. If you have a physical examination it should be explained to you why this is needed. You should be told if you will need any more tests and the reason for them.

It’s important to be honest about the way you live your life. Knowing the facts helps your doctor or nurse to think about the right care and treatment for you. If you feel you can’t tell them about certain things, there may be other staff at the clinic who you feel able to talk to more easily.

If you are given any medicines you should be told why you need them, what they are, how to take them, and any side effects you might experience. You might be referred to see another doctor or healthcare professional. The reason for this should be explained to you, as well as what will happen next.

You can interrupt and ask questions if you don’t understand what you’re being told. It’s important to make sure you know what your doctor or nurse is saying. If it helps, you can take notes to help you remember what you have spoken about during your appointment.

At the end of your appointment, you should be asked if you have any questions and told when you should have your next appointment. You may have to see other people before you leave the clinic.

For more information, see our page about the relationship between you and your HIV healthcare team.

Having blood tests

Regular blood tests are an important part of your HIV care. You might be asked to come in a few days before your appointment to have your blood taken. This will be done by a nurse or a phlebotomist (somebody who takes blood). Sometimes you will have blood tests on the same day as your clinic appointment. This means you may have to wait again.

Picking up your medication

Large HIV clinics have their own pharmacy where you should go with your prescription. They will have anti-HIV treatment and other medicines to treat illnesses that affect people with HIV. At smaller clinics, you’ll need to go to the hospital’s pharmacy for all your medication. This is called the outpatient pharmacy. Usually, you must take the prescription your HIV doctor or nurse gives you to the clinic or outpatient pharmacy. A high street chemist will not be able to help.

Glossary

diabetes

A group of diseases characterized by high levels of blood sugar (glucose). Type 1 diabetes occurs when the body fails to produce insulin, which is a hormone that regulates blood sugar. Type 2 diabetes occurs when the body either does not produce enough insulin or does not use insulin normally (insulin resistance). Common symptoms of diabetes include frequent urination, unusual thirst and extreme hunger. Some antiretroviral drugs may increase the risk of type 2 diabetes.

referral

A healthcare professional’s recommendation that a person sees another medical specialist or service.

high blood pressure

When blood pressure (the force of blood pushing against the arteries) is consistently too high. Raises the risk of heart disease, stroke, kidney failure, cognitive impairment, sight problems and erectile dysfunction.

If you’re taking HIV treatment you should be given enough medication to last until your next clinic appointment. This is unless you’ve agreed with your clinic to have your prescription sent to your home. The pharmacist will ask you if you’re allergic to any medicines and explain how to take the medication that’s been prescribed for you.

Your HIV doctor may only be able to prescribe a maximum of two weeks’ supply of any other medications (such as anti-sickness medicine). This means you should go to your GP if you need more of these between your HIV clinic appointments. There is more information about seeing your GP further down this page.

Booking your next appointment

Go back to reception and make an appointment for your next visit, even if this is a few months away. Planning ahead will help you find a time that works for you.

Accessing other clinic services

HIV treatment centres often provide other services which you can use. These services allow you to speak to other healthcare professionals who can provide extra help. But these services don’t replace the care you get from your HIV doctor. If you’re unwell or have problems with your medication, your HIV doctor should be the person you contact.

At larger HIV clinics, services may be available in the same clinic or hospital building. If services are not available at your clinic, discuss with your doctor how you can access them.

The types of services that might be available include peer support workers, dietitians, health advisers, pharmacists, mental health services, and doctors for other health conditions you may have.

Can I contact my doctor between my appointments?

Keeping contact with the same doctor can be difficult, as they are usually very busy, and staff do change from time to time. However, if you have questions it’s important that you’re able to get answers. Ask your doctor how you should get in touch with them if you have any concerns between appointments. They might suggest you can contact them by phone or video call, or that you can ask questions via email.

If you find getting in touch with your doctor is difficult, talk to them about this at your next appointment.

What if I disagree with my HIV doctor?

Over time, it’s likely there will be some things which you and someone on your healthcare team don’t agree on. If you’re unhappy about a disagreement with your doctor, you may want to ask someone else to come with you to your next appointment. They can support you while you explain how you feel about the situation. This could be a friend or family member.

You could also invite a patient advocate to your appointment. A patient advocate is someone who can speak up for you if you’re finding it difficult. Some hospitals may have a staff member who can be your advocate, or your local HIV organisation may be able to help. In the UK, PALS (the patient advice and liaison service) may also be able to help with this. You can find your nearest PALS office on the NHS website. You can also ask your GP surgery, or hospital or contact NHS 111 for details of your nearest PALS.

Making a complaint

If you’re very unhappy with the treatment you have received, or the behaviour of any staff member at your clinic, you can make a complaint. Your HIV clinic will have a complaints procedure. You can ask for a copy of this at any time. If you start by making the complaint directly to the clinic, you might be able to resolve the situation without making a formal complaint. If not, or if you don’t feel comfortable complaining to clinic staff, you can make the complaint using the NHS complaints process.

Changing doctor

If you decide you don’t want to continue your relationship with your doctor for any reason, you don’t need to move to another clinic. Most clinics allow switching between doctors.

However, if you do want to change clinic you can. In the UK you can choose the clinic where you are treated. You can switch your care to another hospital in your area providing HIV services (if there is one) or even another city.

Do I still need a GP?

Yes. Even though people with HIV get their HIV care from specialist HIV clinics, it’s still important to have a GP. Many GPs offer services which are not available at your HIV clinic. These include health visiting if you’ve recently had a baby, nursing support at home, mental health nursing, physiotherapy and chiropody (foot care).

GPs are skilled at managing many long-term conditions. This includes some conditions that are common in people with HIV as they get older, such as high blood pressure, heart disease and diabetes. GPs are also able to write prescriptions for non-HIV medication which your HIV clinic might not be able to give you.

GPs are also the only doctors who can make home visits if you are too ill to attend your HIV clinic or go into the GP surgery. If you’re unwell outside normal working hours, at the weekend or on bank holidays, all GPs have an emergency service.

If you contact the emergency service, a nurse or doctor will offer you advice. If your problem means you need to go into hospital, they can arrange this. They can also usually speak to the on-call HIV doctor at your clinic to arrange specialist HIV care if you need it.

Registering with a GP

To access a GP you must be registered as their patient. You can only be registered with one GP and you must live within the area the GP practises in. When you register, you’ll be asked to give your name and address, your NHS number and details of your last GP. Don’t worry if you can’t find your NHS number, you can still register without it.

Some HIV clinics keep a list of GPs, and may be able to recommend a GP with experience of caring for people with HIV. You can search for GPs in your area on the NHS website. Sometimes GPs can’t accept any more patients as they already have the maximum number of people registered with them.

If you’re entitled to free NHS treatment then all NHS services provided by your GP will be free.

Most GPs have an appointment system, and sometimes these can be booked up days in advance. Emergency appointments will usually be available for people who need to be seen quickly. These are normally available the same day, but on a ‘first come, first served’ basis.

If you need a GP when you are away from home, then you can register as a ‘temporary resident’. To do this you just need to be staying within the GP practice area for up to three months. If a GP won’t register you as a temporary resident you can still get emergency care from them for up to 14 days. 

GPs cannot refuse to register you because you have HIV or any other medical condition. They also cannot refuse to register you because of your race or sexuality, or because you don’t have proof of address or proof of identity.

If you have problems registering with a GP practice, contact Doctors of the World for advice on 0808 1647 686.

Telling other healthcare professionals you have HIV

It is usually a good idea to tell other healthcare workers, such as pharmacists, dentists, and your GP that you are living with HIV. This can help them give you the right care and treatment. There are strict rules about the confidentiality of medical information. Telling a health professional that you have HIV should not negatively affect your care. For information click here.

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