Telling healthcare workers you are living with HIV

Mareike Günsche | www.aspect-us.com

Key points

  • To ensure they can give you the right care and treatment, it can be important to tell health professionals that you are living with HIV.
  • There are strict rules about the confidentiality of medical information.
  • Telling a health professional that you have HIV should not affect your care.

This information is aimed at people who are using the UK National Health Service (NHS), but it may be helpful even if you live elsewhere.

In the UK, it is almost certain that you will receive your HIV care from a specialist HIV clinic. It is also likely that from time to time you will use non-HIV services for your health care. This factsheet provides some information on why it can be a good idea to tell other healthcare professionals, such as GPs, dentists and pharmacists, that you are living with HIV.

General practice (GP)

Everyone living with HIV in the UK is advised to register with a GP surgery. The doctor and any other staff in the practice (such as a nurse, health visitor or midwife) will be able to provide the most appropriate care if they know about any health conditions you have and any medication you are taking. It therefore makes good sense to tell your GP that you are living with HIV. It is particularly important if your GP is prescribing medication for you, because there are interactions between some anti-HIV drugs and drugs used to treat other conditions (and contraceptives).

Some information about your health, such as current medication, allergies and bad reactions to medicines, may be included in an electronic health record that is created from GP records. This may be accessed by other NHS staff who are caring for you. There’s more information on another page.

Some people worry that the GP might discriminate against them because of HIV. The Equality Act makes it illegal to discriminate against people living with HIV in health care – this means that you should not be refused a service or receive a less favourable service because you are living with HIV. GPs should not treat you less favourably or refuse to register you because of HIV or because of your race or sexuality.

Some people are concerned that telling their GP that they are living with HIV could have other implications, such as if they apply for life insurance. Your GP records are confidential, but it is true that if you apply for life cover the company will almost certainly ask about your medical history and ask for a report from your GP. You would have to give your permission for medical information to be shared, but you should be aware that if you do not tell a life insurance company that you are living with HIV it could have serious consequences later.

You can tell your GP surgery you are living with HIV when you first register with the practice, or you could tell them later. You may decide to make an appointment to talk about HIV, or you could let them know when you go to see them about something else.

Other hospital-based specialists

If you are referred by your HIV clinic or GP to another service, it is normal for them to mention your HIV status and your current medication. This will mean that they will be able to avoid drug interactions and provide you with the most appropriate care. In this situation, there is usually ‘implied consent’. This is when your information is shared with healthcare workers involved in your care without you being asked, in situations where it is reasonable to think you would agree to your information being shared. You can read more about ‘implied consent’ on another page.

If you are admitted to hospital, you should think about letting the healthcare team responsible for your care know that you have HIV. It's also a good idea to make sure that your HIV doctor knows about any other specialist care that you are receiving. 

Dentists

When you register with a dentist you will be asked to fill out a form describing your medical history. This will ask you if you are living with HIV and if you have certain other medical conditions such as hepatitis B or hepatitis C.

"The Equality Act makes it illegal to discriminate against people living with HIV in health care."

The British Dental Association, the professional body for UK dentists, is clear that a dentist should not discriminate against you because you disclose your HIV status. Sadly, this has not always been the case. Dentists have sometimes claimed that this is to protect themselves and the other people in their care from HIV. This is not acceptable. Standard sterilisation and infection control procedures are sufficient to ensure there is no risk to dental staff or other patients.

Telling your dentist that you have HIV can have benefits. For example, they can know to check for certain mouth and gum problems that occur more often in people living with HIV. Also, it is wise to tell your dentist if you are taking HIV treatment or any other medicines as dentists may need to use drugs that could interact with them.

Your dental records are confidential.

Pharmacists

A pharmacist may ask you what medicines you are taking when they dispense a prescription or when you buy over-the-counter medication. Some over-the-counter medicines (medicines available without a doctor’s prescription), for example some hayfever tablets, can interact with certain anti-HIV drugs.

Glossary

consent

A patient’s agreement to take a test or a treatment. In medical ethics, an adult who has mental capacity always has the right to refuse. 

drug interaction

A risky combination of drugs, when drug A interferes with the functioning of drug B. Blood levels of the drug may be lowered or raised, potentially interfering with effectiveness or making side-effects worse. Also known as a drug-drug interaction.

therapy

Any form of treatment. Drugs, radiation, and psychiatric counselling are forms of therapy. 

association

An association means that there is a statistical relationship between two variables. For example, when A increases, B increases. An association means that the two variables change together, but it doesn't necessarily mean that A causes B. The relationship isn't necessarily causal.

hepatitis C virus (HCV)

The hepatitis C virus can be spread through sharing contaminated needles, syringes and other equipment to inject drugs, sharing straws to snort drugs, needlestick injuries, and during childbirth. Sexual transmission does occur, primarily between gay men. Hepatitis C can range from a mild illness lasting a few weeks to a serious, lifelong illness. Untreated chronic hepatitis C can cause serious liver damage, cirrhosis, liver cancer, and even death. While there is no vaccine, treatments are available to clear the virus from the body, leading to its cure.

If you are worried about mentioning the name of your medicines in a public place, you could ask to talk to the pharmacist in a private area (often a pharmacy will have a private consulting room) or you could write down the name of the medicines you are taking and hand them to the pharmacist.

Complementary health practitioners

Many people with HIV use complementary therapies such as acupuncture. You may wish to disclose your health status to the therapist. It should not make a difference to the kind of therapy they offer you.

However, complementary practitioners are not as well-regulated as medical professionals. You could ask to check confidentiality policies before disclosing any health details.

If you are advised to take any complementary or alternative therapy check with your doctor or HIV pharmacist that it is safe for you to do so. Some alternative medicines such as the herbal antidepressant St John’s wort and Gingko biloba can stop some anti-HIV drugs working properly. Even if you tell a complementary practitioner that you are taking anti-HIV drugs they are not guaranteed to know of any dangerous interactions.

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