According to the Terrence Higgins Trust, there were just over 100,000 people living with HIV in the UK in 2018. This included around 7500 people who were HIV positive but not yet diagnosed.

Like any medical condition, it is important that a patient’s right to confidentiality is respected. A study of just over 50 cases involving HIV positive patients reported to the MDU over the past five years found that confidentiality concerns are the most common query raised by members involving HIV positive patients.

Patient expectations and confidentiality

Patients come to see their doctor in the expectation that what they say will be kept confidential and trust is essential to the doctor-patient relationship. Doctors have an ethical and legal duty to protect patient’s personal information (GMC: Confidentiality: good practice in handling patient information, paragraph 2) and generally, a patient’s consent should be sought before information is disclosed about them.

There are occasions when doctors may find themselves in a position where breaching a patient’s confidentiality is necessary, for example, by law (paragraph 17) or in the public interest (paragraph 22/23), such as when there is a serious risk of harm to another person. Where this is thought to be necessary, it is important to seek advice from senior colleagues. The MDU can also give advice on matters relating to patient confidentiality. Where a patient has a serious communicable disease, such as HIV, there may be instances where not disclosing information about the patient could expose others to a risk of death or serious harm (paragraph 66).

If you did believe you have good justification for disclosing information about a patient without their consent, you should let them know what information you intend to disclose, why and to whom, assuming it is safe for you to do so.

Disclosure of HIV status

HIV is a communicable disease which means it can be passed on from one person to another under certain circumstances. Unlike other communicable diseases, HIV is not a notifiable disease and, therefore, when it has been diagnosed in a patient, it does not need to be reported under the notifiable disease reporting system.

When a person has been diagnosed with HIV it is important that they understand the risks this may pose to others so that they can take measures to avoid this.

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Occasionally, a patient who is HIV positive may ask that their status is not disclosed to others. These may include relatives, their GP or healthcare team, the police, (where an assault or allegation of deliberate transmission of the virus had occurred) or to other third parties such as insurance companies or employers. Here are some examples of when disclosure may be necessary, even if the patient refuses.

Disclosure to other healthcare professionals

If a patient asks that information about their HIV status is not disclosed to other health professionals involved in their care, including their GP, it is important to explain to them the importance of other clinicians being aware, so that they can take this into account when treating them for other conditions that may or may not be related to their HIV infection. Other healthcare professionals will need to be alert to any complications that could arise so they are picked up early and what medication the patient is taking.

Knowing the patient has HIV could avoid other unnecessary investigations. If the patient understands the risks to themselves of other treating clinicians not being informed but is still adamant they do not want their HIV status disclosed, their wishes should be respected. They should be made aware that they can change their mind at any time.

It is important to explore with the patient their reasons for not wanting other healthcare professionals to know about their HIV status and to discuss their concerns. If you are able to reassure them, they may agree to disclosure in some circumstances.

Members are sometimes concerned about the safety of staff performing invasive procedures on these patients. However the adoption of universal precautions against blood borne infections should protect your colleagues, whether or not they know of the patient’s HIV status.