UK’s largest survey of people living with HIV published

Today, UKHSA has published the Positive Voices survey 2022, a survey of over 4,600 people living with HIV.

The survey found that people continue to have a positive view of their HIV care service, with an average satisfaction rating of 9.4 out of 10 in 2022 compared to 9.3 out of 10 in 2017. Most people (91.7%) were also satisfied with their current treatment plan, with many people (54.0%) now receiving a single tablet regimen compared to 35.7% in 2017.

• 97.0% said their HIV clinic provided enough information about HIV and that staff listened carefully to what they had to say.
• 96.4% said they felt supported to self-manage their HIV and had enough time to discuss queries at appointments.
• 94.8% felt involved in decisions about their HIV treatment and care.

Despite this, the survey also showed that levels of stigma remain high. One in 25 (4.3%) people reported having been verbally harassed because of their HIV status in the last year, and a similar proportion (4.3%) felt that family members had made discriminatory remarks.

• One in three people (32.1%) reported low self-esteem due to their HIV status.
• One in seven people (13.7%) worried about being treated differently to other patients by healthcare staff.
• One in ten people (10.4%) have not shared their HIV status with anyone aside from healthcare staff.
• Almost half (45.1%) of the survey respondents reported feeling ashamed about their diagnosis.

Regardless of stigma type, higher levels were reported among younger people, women and people who identified as trans, non-binary or in another way.

Mental health conditions also remain high, with one in five (22%) people reporting current symptoms of either anxiety or depression. Of those reporting symptoms, half (49%) had been diagnosed with a mental health condition.

Amanda Healy, our Policy Lead for Health Protection, said:

“Today’s survey demonstrates how effective HIV services are in supporting people living with HIV which is a testament to the hard work of the thousands of people working across a range of public health, NHS and voluntary and community sector teams at a local level.

“We must now work together, on an individual, community, regional and national level, to stamp out the stigma so many people are reporting.

“It is of course also vital that funding for these services continues so that more people can be tested, treated and supported in order to continue making good progress towards the target of ending new HIV transmissions by 2030.”