How one nurse’s experience of stigma at work led to change for all healthcare workers living with HIV
Today the UK Advisory Panel on Healthcare Workers Living with Blood Borne Viruses (UKAP)[i] have published new guidance on when healthcare workers are obliged to share their HIV status with employers, and when they are not. This much-needed guidance offers clarity and vindicates those healthcare workers living with HIV who faced unnecessary intrusions into their private lives, despite posing no risk to patients.
Two years ago we were asked for help by Grace*, a student nurse who was threatened with expulsion from her course when her university discovered she was living with HIV. This was in spite of the fact she was not training to do any procedures that could risk passing HIV on – known as ‘exposure-prone procedures’ (EPPs) [ii].
So why did Grace have this experience? And how will UKAP’s revised guidance help?
Changes to the UKAP guidance on healthcare workers living with HIV
The updated guidance has not, in fact, changed substantively in relation to HIV. It has been five years now since UKAP published guidance that allowed healthcare workers living with HIV to conduct EPPs for the first time, provided they meet certain criteria. The current requirements for those carrying out EPPs are the same as before – anyone starting one of these roles in the NHS must test for HIV. If the test comes back positive, that’s ok, provided they register with a national database and submit quarterly viral load tests which shows that they are taking their medication and their HIV is suppressed.
But for healthcare workers who are not doing exposure prone procedures there is now welcome clarity of the fact that there is no formal obligation to share your HIV status with employers. When the guidance was introduced in 2014, it included some rather unhelpful statements which obscured the obligations of healthcare workers living with HIV to disclose. Despite the guidance being clear that having HIV “will not affect the employment or training of healthcare workers not carrying out EPPs”, it also stated in multiple places that healthcare workers not carrying out EPPs should still notify occupational health of their BBV status.
This has caused serious problems for some healthcare workers living with HIV. Grace had decided not to share her status with her nursing training provider when asked, because she’d had some terrible experiences of stigma and discrimination in the past, and as a result was very guarded about who she told about her HIV. Besides, she reasoned, she wasn’t carrying out exposure-prone procedures, so her HIV status wasn’t relevant to her employment.
Unfortunately Grace’s training provider took a different position when they discovered she was living with HIV. She faced stigmatising comments, breaches of confidentiality and was forced to undergo a gruelling investigation into her fitness to practice as a result. NAT supported Grace through this process and eventually it was conceded that she had not put anyone at risk and she was allowed to return to her studies. However, we were determined to ensure that a similar situation didn’t happen to any other healthcare worker living with HIV. We decided to challenge UKAP over the unhelpful statements in their guidance and asked them to remove them.
Why shouldn’t non-EPP healthcare workers have to tell their employer if they have HIV?
In all clinical settings, strict infection control procedures should be followed. These are often called ‘universal precautions’ and include always wearing gloves, using sterilised equipment and clean needles, etc. Universal precautions means treating all bodily fluids as potentially infectious. This is sensible because people who are unknowingly living with bloodborne viruses are more likely to pass it on because they don’t know they have a virus and therefore won’t be taking any medication to suppress it. Conversely, those who are diagnosed will be on treatment, which suppresses their HIV so they can’t pass it on. So treating someone differently when they are able to tell you they have HIV is not only unnecessary and discriminatory, it’s also not an appropriate way to manage risk.
It is worth highlighting that the overall risk of HIV transmission from a healthcare worker to patients is extremely low. Worldwide, there have been only four reports of HIV transmission from healthcare workers living with HIV to patients during EPPs. These four cases of transmission involved healthcare workers who were not undergoing antiretroviral therapy at the time of transmission. And between 1988 and 2008, 39 Patient Notification Exercises[iii] involving healthcare workers living with HIV had been undertaken in the UK. No cases of healthcare worker to patient HIV transmissions were identified despite almost 10,000 patients having been tested.
Given the above, there is no reason why healthcare workers not carrying out EPPs should be required to disclose their HIV status to occupational health. There is no requirement to engage in viral load monitoring nor is there any need to implement additional precautions. Universal precautions are sufficient to avoid any transmission risk even where a healthcare worker has an undiagnosed and untreated condition. In practice, the requirement to disclose HIV status has no beneficial effect on risk to patients, instead it just risks deterring people from testing, with adverse consequences for the health of healthcare workers.
It is vital that healthcare workers living with HIV are able to access occupational health support should they wish to. However, making it a requirement for someone to disclose their HIV shifts the purpose of occupational health from providing support for employees to acting as a regulator of transmission risk.
So what now?
I’m pleased to say UKAP have listened to our concerns and the updated guidance published today clarifies healthcare workers’ and employers’ responsibilities around disclosure. Importantly, the onus is now placed on employers to foster a work environment in which employees living with HIV feel comfortable to share their health concerns with occupational health, without unduly pressuring them to.
We want to make sure everyone is aware of this updated guidance so healthcare workers living with HIV do not continue to face unnecessary intrusions into their private life. Please help us out by sharing this blog using the social media icons below!
*Not her real name
[i] UKAP gives advice to the government on guidance on healthcare workers infected with HIV, hepatitis B and hepatitis C. The CEO of Public Health England appoints members with specialist medical and scientific expertise, as well as lay members. For further information, see https://www.gov.uk/government/groups/uk-advisory-panel-for-healthcare-workers-infected-with-bloodborne-viruses
[ii] Exposure prone procedures include procedures where the worker’s gloved hands may be in contact with sharp instruments, needle tips or sharp tissues inside a patient’s open body cavity, wound or confined anatomical space where the hands or fingertips may not be completely visible at all times. Examples include surgery, dentistry and midwifery. For detailed guidance on what constitutes an exposure-prone procedure, please visit https://www.gov.uk/government/publications/bbvs-in-healthcare-workers-health-clearance-and-management
[iii] A Patient Notification Exercise takes place when there has been an incident where a patient population has been at a distinct risk of exposure to the blood of a healthcare worker living with a blood-borne virus.