Despite the great strides made in recent years in HIV treatment and prevention, there were still just over 100,000 people living with HIV in the UK in 2018, according to the Terrence Higgins Trust. This included around 7,500 people who were HIV positive but not yet diagnosed.
Medical professionals, particularly GPs, can play a key role in supporting people with HIV, and past studies have shown that most people are happy to disclose their HIV status to their GP.
Like any medical condition, it's important that a patient's right to confidentiality is respected. A study of just over 50 cases involving patients with HIV and reported to the MDU over the past five years found that confidentiality concerns are the most common cause of medico-legal queries raised by members.
In total, 56 files were opened at the MDU in relation to patients who were HIV positive over a five year period between 2015 and 2020. General practice made up the largest numbers of files, with 65% being from GPs and 16% being from practice managers. Genitourinary medicine specialists made up 9% of cases and the remainder were from members working in emergency medicine, general medicine, infectious diseases and occupational health.
Half of cases involved patient complaints, with one of the complaints becoming a clinical negligence claim and another escalating to a GMC investigation. The other half of cases centred on members' requests for general advice.
Issues of patient confidentiality were the most common reason for a file to be opened, accounting for a third of cases (34%). The majority were either due to a complaint following a breach of confidentiality, or a request for advice about whether to disclose information about a patient's HIV status to others who may be at risk.
Breaches of confidentiality are rare, but often happen due to a systems error - for example, when an email is sent to the wrong recipient or to a list of recipients. If that happens, it is important to notify those affected as quickly as possible, apologising and explaining the steps that have been taken to remedy the issue and prevent it happening again. Depending on the severity of the incident, it may also be necessary to carry out a significant event audit and to notify the Information Commissioners' Office (ICO). The MDU can advise you on the specific circumstances of any case.
Occasionally, a patient with HIV may ask that their status is not disclosed to others at risk, such as relatives, their GP, the police, where an assault or allegation of deliberate transmission of the virus had occurred, or to other third parties like insurance companies or employers.
If a patient asks that information about their HIV status is not disclosed to their GP, it is important to explain to them the need for their GP to be aware, so they can take this into account when treating the patient for other conditions that may be related to their HIV infection. The GP 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 their GP not being informed but is still adamant they don't want their HIV status disclosed, their wishes should be respected. They should be made aware that they can change their mind at any time.
If a person who is HIV positive won't tell a partner who is at risk of transmitted infection, you may disclose information to that person if it's likely they are at risk of serious harm and the patient cannot be persuaded to inform them (see GMC guidance in Confidentiality - disclosing information about serious communicable diseases).
If another person is at risk and may need prophylactic treatment but the patient has not given permission for this information to be disclosed, it may be appropriate to make a limited disclosure to an appropriate person, in the public interest. The patient should be advised of the actions you intend to take and your justifications for doing so.
In some instances, relatives of deceased patients asked that the patient's HIV status was not recorded on a death certificate. In these cases the member involved was advised to sensitively explain to the relative that this wouldn't be possible, as if a serious communicable disease has contributed to a patient's death, the doctor must record this on the patient's death certificate.
It's important that relevant clinical information is recorded in the notes as this will have an impact on clinical care going forward.
Just over a quarter of cases (28%) related to record keeping. Members sought advice where patients asked that their diagnosis of HIV was not recorded in their records or was removed from their records where it had already been recorded.
It's important that relevant clinical information is recorded in the notes as this will have an impact on clinical care going forward. Information written in a clinical record in good faith should not be omitted or removed from a medical record, and while this should be sensitively explained to patients, it's also possible to offer to make a note in the records of the patient's objections or concerns.
Other questions on records were about the coding of notes and the appropriateness of flagging a patient's records where they had tested positive for HIV. It is important to consider why notes are being flagged and whether this can be justified in the patient's interests.
Provided standard precautions are taken when taking blood or carrying out invasive procedures, it shouldn't be necessary or appropriate to flag records to alert staff members to communicable disease infection (for example). If a record is flagged for another reason, we advise informing the patient and explaining your justifications for doing so.
If an insurance company asks you to fill out a medical report about a patient with a HIV infection, ensure you have the patient's consent before disclosing information. If the patient asks you not to disclose their HIV status, you should not do so - but you would need to make it clear to the insurer that you had omitted relevant information due to the lack of consent.
In 2017, overall mortality figures for those between 15 and 59 who were diagnosed early were equal to that of the general population for the same age group, emphasising the importance of diagnosing HIV infections at the earliest opportunity.
A small proportion of complaints notified to us (12%) were about a delayed diagnosis of HIV. As well as allowing effective treatment to begin with the aim of reducing the incidence of complications of HIV infection and reducing mortality, early diagnosis also aims to achieve an undetectable viral load. Once a person has an undetectable viral load they can no longer pass the infection on to someone else.
According to the Terrence Higgins Trust, 43% of those diagnosed with HIV in 2018 were diagnosed late. The majority of these were heterosexual men and those over 65.
It's important to keep an open mind about a possibility of HIV infection in symptomatic patients. Gay men and black African people are disproportionately affected. In 2018, 51% of people diagnosed with HIV in the UK were gay or bisexual men, and of heterosexuals living with HIV, 41% were black African men and women.
Women also make up a quarter of all new HIV diagnoses, according to a 2017 report by Public Health England which also found that 1 in 3 of those living with HIV are women.
In the cases reported to us, patients who alleged a delayed diagnosis tended to present with non-specific symptoms over a period of time and had had a number of different specialist referrals and investigations before a diagnosis was made. Delays tended to arise where there was a lack of continuity of patient care, with patients being seen by a number of different doctors. Certain groups of patients, such as heterosexual women, were also less likely to have their HIV status checked at an early stage.
A handful of cases (7%) involved medication and prophylactic treatment for patients who were concerned about exposure to HIV. These cases included allegations that potential contraindications with HIV drugs were not taken into account before prescribing medications for other medical conditions.
Other complaints related to necessary medications not being given to treat unrelated medical conditions because it was assumed the patient's symptoms were due to their HIV infection rather than another illness.
Communication issues featured in many cases, and were the main cause of a handful of complaints (7%). Cases included patients raising concerns that they felt judged or that homophobic comments had been made. Other complainants were not satisfied with how it was suggested they undergo a HIV test or how the result was given to them. This emphasises the importance of good communication skills when broaching sensitive issues and when breaking bad news.
Want to know more? Try our e-learning module, 'Confidentiality: disclosing information about serious communicable diseases'.
Dr Kathryn Leask
BSc (Hons) MBChB (Hons) LLB MA MRCPCH FFFLM DMedEth
Kathryn has been a medico-legal adviser with the MDU since 2007 and is a team leader, trainer and mentor in the medical advisory department. Before joining the MDU, she worked in paediatrics gaining her MRCPCH in 2002 and did her specialty training in clinical genetics. She has an MA in Health Care Ethics and Law, a Bachelor of Law and a Professional Doctorate in Medical Ethics. She is also a fellow of the Faculty of Forensic and Legal Medicine and has previously been an examiner and Deputy Chief Examiner for the faculty exam. Kathryn is currently a member of the faculty's Training and Education Subcommittee.
See more by Dr Kathryn Leask