Research and analysis

Positive Voices 2022: survey report

Updated 12 January 2024

Foreword

I was diagnosed 14 years ago. There was only one single-tablet HIV treatment option; people only started medication when their immune system had become affected; and any evidence that HIV treatment could be used as prevention came with a long list of caveats, and it certainly wasn’t shared with those of us living with HIV.

Today, everyone living with HIV can start treatment immediately, ensuring we can live well, and can’t pass on HIV to our sexual partners. New technologies, such as long-acting, injectable therapy is providing a choice of how we can take treatment for the first time. The same pills that those living with HIV take to control the virus can be used by our HIV negative peers to protect themselves from HIV. The undetectable equals untransmittable (U=U) message is supported by robust evidence and is transformative for people living with HIV, because it dismantles stigma. It is therefore very concerning that this report shows only 6 in 10 people living with HIV strongly believe in the U=U message.

However, we must also look beyond our levels of viral suppression, to see those of us living with HIV as people, in all our complexities. Positive Voices survey 2022 created an opportunity for people living with HIV to provide a holistic snapshot of their lives. It explores the other conditions we live with and our mental health. It looks at our satisfaction with the health and social services that we access, and whether our welfare needs have been met. Our sex lives and relationships, physical health and lifestyle factors are described, alongside information about our social and demographic circumstances.

The ambitious 2030 HIV targets will only be achieved if people living with HIV are at its centre. This includes addressing stigma, discrimination, and ensuring that support is there to enable people living with HIV to live well and thrive, no matter where we live in the country.

Thank you to the people living with HIV, for helping us design the survey and a huge thanks to all those who completed the survey. The next step is to take what we have learnt from Positive Voices survey 2022 to inform the HIV Action Plan to improve the lives of people living with HIV and work to end transmission.

Alex Sparrowhawk
Terrence Higgins Trust and Needs Informed Model of Care for people living with HIV (NICHE) Patient and Public Involvement Lead

Summary of findings

The Positive Voices survey 2022 was completed by 4,618 people living with diagnosed HIV who were invited to take part through their local HIV clinic between April 2022 and March 2023. Overall, 4,540 participants provided sufficient demographic information to be included in this report. This represents approximately 1 in 20 people living with diagnosed HIV in England, Wales, and Scotland. Where possible, results from the 2022 survey were compared to the 2017 survey.

HIV knowledge, diagnosis and treatment

Nearly all (99.4%) participants were taking antiretroviral therapy (ART) at the time of the survey. Adherence to ART was high, with 88.3% reporting not having missed a pill in the last 14 days and 92.2% reporting their last viral load to have been undetectable. Since 2017, pill burden (the number of pills a person has to take each day) decreased with 54.0% now receiving a single tablet regimen compared to 35.7% in 2017. Reported side effects to ART also decreased, with 9.0% reporting side effects in the previous 4 weeks compared to 16.7% in 2017.

Most people (91.7%) were satisfied with their current treatment regimen. Nine in 10 people (92.3%) were aware of U=U, however only 6 in 10 (62.7%) believed strongly in the concept. Overall, 6 in 10 (58.1%) reported that the concept of U=U made them feel much better about their HIV status.

Find out more details on HIV knowledge, diagnosis and treatment below.

Quality of life, health and wellbeing

People living with HIV reported on their quality of life, health, wellbeing, social support, and resilience status using validated measures. Since 2017, there has been little change in life satisfaction and quality of life (EQ-5D-5L) among people living with HIV. Overall, compared to the general population, people living with HIV continued to fare worse across these 2 measures. The largest difference was among people reporting anxiety or depression (48.1% of people living with HIV compared to 33% of the general English population (EQ-5D-5L data)). Life satisfaction, health-related quality of life, and resilience outcomes for people who identified as trans, non-binary, or in another way were worse than for other people living with HIV.

Find out more details on quality of life, health and well-being below.

Health conditions and medications

The population of people with HIV is ageing (half are now aged 50 years and over) and as expected, the prevalence of long-term chronic conditions such as cardiovascular disease, diabetes, and arthritis has risen since 2017. In 2022, 64% of people with HIV reported having ever been diagnosed with one or more long-term conditions in addition to HIV compared to 59% in 2017.

The prevalence of diagnosed mental health conditions continued to be high, increasing slightly to 39% from 37% in 2017. The most common mental health diagnoses were depression (31.7%), anxiety (28.5%), and post-traumatic stress disorder (6.9%). 1 in 5 (21.7%) people with HIV reported symptoms of either depression or anxiety on the day of the survey (assessed using the Patient Health Questionnaire-9 (PHQ-9) and the Generalised Anxiety Disorder Assessment (GAD-7) questionnaire).

Find out more details on health conditions and medications below.

Health service use and satisfaction

People continued to report a high level of satisfaction with their HIV care service, and this was consistent across all demographic groups, with an average satisfaction rating of 9.4 out of 10 in 2022 compared to 9.3 out of 10 in 2017. Agreement with patient-reported experience measures (PREMs) about their HIV care was high:

• 97.0% said their 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

Satisfaction with general practice was substantially lower (6.5 out of 10). The majority (89.3%) had shared their HIV status with their general practitioner (GP).

Since the start of the COVID-19 pandemic, most people living with HIV (92%) had had at least one remote healthcare consultation. Whilst the majority (73.6%) had private access to the internet most of the time, this was lower for women, people of black African ethnicity, and people aged 65 years and over (approximately 60% for each of these groups, respectively).

The proportion of people who had used health services (dentist, sexual health service or accident and emergency) in the previous 12 months remained unchanged since 2017 (approximately 50% using dentist and sexual health services and 20% using accident and emergency services). The use of HIV peer support services had decreased, from 16% accessing these services in 2017 to 10.3% in 2022.

Find out more details on health service use and satisfaction below.

General health and health-related behaviours

3 in 5 people living with HIV were categorised as being ‘less than active’ according to the General Practice Physical Activity Questionnaire (GPPAQ), at which point a physical activity intervention is recommended. Long-term health conditions and health service use were markedly higher among people who were ‘less than active’ (for example, 46% of people ‘less than active’ had cardiovascular conditions or diabetes compared to 35% who were ‘active’).

In 2022, the proportion of people who were overweight and obese was similar to the general population. Among people living with HIV, 62% were overweight, among whom half (29% overall) were obese, and in the general population 64% were overweight, 26% overall were obese.

There was a marginal decrease in alcohol consumption, both in terms of frequency and amount, tobacco smoking, and recreational drug use since 2017, although the proportion of gay and bisexual men who reported having chemsex in the previous 3 months remained similar over this period (13.1% in 2022 compared to 14.1% in 2017).

Find out more details on general health and health-related behaviours below.

Stigma and discrimination

Reported stigma has improved slightly since 2017 but remains very high across many domains. Only 1 in 8 (12.9%) people had shared their HIV status with most people in their lives and 1 in 10 (10.4%) had not told anybody other than healthcare staff. Those who had not told anybody their HIV status had had an average of 2.5 contacts with HIV peer support organisations in the last year compared to an average of 7.2 contacts in the last year among people who had shared their HIV status with most people that they knew.

In 2022, almost half (45.1%) felt ashamed of their HIV status and 1 in 3 people (32.1%) reported low self-esteem due to their HIV status; 1 in 13 (7.2%) had avoided accessing healthcare services and 1 in 7 (13.7%) had worried about being treated differently to other patients by healthcare staff during the previous year. However, overall, in healthcare settings, there was a slight decrease in the proportion of people reporting not having been treated well (5.8% in 2022 compared to 7.6% in 2017).

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

Very high levels of a history of experiencing physical and sexual violence were reported. Over 1 in 4 (25.9%) had experienced physical violence (defined as being pushed, shoved, slapped, hit, kicked, choked, or otherwise physically hurt) and 1 in 7 (14.4%) reported ever being sexually assaulted (defined as physically forced to have sex or coerced to have sex or penetrated with an object). Overall, 9.4% thought that the physical violence was because of their HIV status and 12.3% thought that the sexual assault was because of their HIV status. Higher levels of physical and sexual violence were reported among younger people, gay and bisexual men, and people who identified as trans, non-binary or in another way.

Find out more details on stigma and discrimination below.

Housing, work and finances

1 in 10 (10.0%) people living with HIV were unemployed. Within the HIV population, unemployment was highest among people who identified as trans, non-binary or in another way (18.8%), women (14.3%), people of black African ethnicity (13.5%), and those of other minority ethnicities (12.7%). 1 in 5 (21.7%) people were claiming means-tested benefits (this compares to approximately 1 in 8 (13%) in the general population). Just under half (48.6%) always had enough money to meet their basic needs; this was lowest among people of black African ethnicity with 74.4% stating that they did not always have money to meet their basic needs. Over 1 in 4 (27.0%) people were behind with some or all of their bills.

Find out more details on housing, work and finances below.

Met and unmet needs

The needs of people living with HIV are diverse. The extent to which needs are met has a direct impact on the overall health and wellbeing of people living with HIV. Almost 1 in 4 (24%) had at least one unmet HIV-related need. Just under 2 in 5 (39%) had at least one unmet other health or lifestyle need and a third (35%) had at least one unmet social welfare need.

While the percentage reporting an overall need has gone down in these 3 areas over the 5 year period (HIV-related service need: 68% in 2022 compared to 74% in 2017, other health service need 58% in 2022 compared to 62% in 2017, social and welfare service need 43% in 2022 compared to 46% in 2017) the already high level of unmet need for health services (non-HIV) and social and welfare services has gone up (HIV-related service unmet need: 24% in 2022 compared to 25% in 2017, other health service unmet need 39% in 2022 compared to 35% in 2017, social and welfare service unmet need 35% in 2022 compared to 34% in 2017).

Long-term condition support, peer support, help for stress management, and accessing a psychologist or counsellor had a large proportion of unmet need (14.0%, 14.3%, 17.8%, and 11.8% of people had this unmet need, respectively). 1 in 7 (13.8%) had an unmet need for housing support and for help with loneliness and isolation (14.8%). Overall, people who identified as trans, non-binary, or in another way had the highest levels of unmet need across all areas.

In contrast, the areas where the needs of people with HIV were mostly met included: HIV treatment advice, professional help to take HIV medication on time or correctly, and information about living with HIV.

Find out more details on met and unmet needs below.

Impact of COVID-19

The COVID-19 pandemic had a huge impact on the lives of people living with HIV, affecting not only their health and wellbeing but also their income and livelihood and access to health services. Almost 1 in 5 (18.6%) people living with HIV reported loss of employment or income and 1 in 4 (24.9%) reported that it was more difficult to access healthcare or medication. A similar proportion (26.9%) reported experiencing worse mental health and 2 in 5 (40.6%) reported a lack of social contact during the COVID-19 pandemic.

Most people (95.6%) had received at least one COVID-19 vaccination and 1 in 3 (35.3%) had received 4 or more. People who were older (aged 65 years and over, 51.5%) and white British (46.2%) were more likely to have received 4 or more doses of COVID-19 vaccination.

Nearly twice as many men had received 4 or more doses of COVID-19 vaccination than women, at 41.4% and 22.5%, respectively. People of black African ethnicity were least likely (20.7%) to have received 4 or more doses. Of those who had not received all the recommended number of doses, the most common reason given was due to side effects (7.5%), not wanting to have the recommended doses (8.0%), and not wanting the vaccine at all (6.0%).

Find out more details on the impact of COVID-19 below.

Introduction

This report presents data for the 2022 round of the Positive Voices survey: the national survey of people living with HIV. It is accompanied by a set of data tables. It provides a summary of the main topics from the survey. More detailed reports on specific areas will be published in due course.

The UK Health Security Agency (UKHSA) conducts national surveillance of HIV and reports on all new HIV diagnoses and clinical outcomes of people accessing HIV treatment and care. This data is provided to UKHSA by HIV treatment and care services throughout the UK. In 2022, a total of 102,145 people were receiving HIV care in England, Wales, and Scotland.

In England, treatment coverage and viral suppression among people diagnosed was high at 98% respectively. This was consistent across all demographic groups.

Monitoring patient-reported outcomes is essential to understand the types and levels of health needs of people living with HIV and to assess long-term outcomes and quality of life. This is particularly important since people living with HIV are ageing (half are now aged 50 years and over) and health service delivery models are undergoing continuous change.

Positive Voices survey 2022 is the second round of UKHSA’s national survey of people living with HIV, which is the largest survey of people living with HIV in the UK. The UKHSA intends to run the survey every few years. Detailed information on the survey methodology can be found in the Positive Voices survey 2017 report, as well as the 2022 report Appendix 1. This survey has contributed to the Changing Perceptions project.

Positive Voices survey participants

Between April 2022 and March 2023, people living with diagnosed HIV accessing care at the 101 participating HIV clinics in England, Wales and Scotland were invited to take part in this round of the Positive Voices survey. These clinics represent over half (56.7%) of the 178 HIV clinics in the UK in 2022. Ninety-nine of these participating clinics were in England, one was in Scotland and one in Wales.

In total, 4618 participants took part and 4,540 provided sufficient demographic data to be include in the analysis of the survey. This represents approximately 1 in 20 (4.4%) people who are living with diagnosed HIV and accessing care in England, Wales, and Scotland (see HIV and AIDS Reporting System (HARS) data).

In 2022, 74.5% (3,382 of 4,540) of participants identified as men (including trans men) and 24.3% (1,101 of 4,540) as women (including trans women). There were 65 (1.4%, 65 of 4,540) participants who identified as either trans, non-binary or in another way, and of these:

• 26 (40.0%, 26 of 65) identified as a woman
• 25 (38%, 25 of 65) identified as non-binary
• 8 (12.3%, 8 of 65) identified their gender in another way
• 6 (9.2%, 6 of 65) identified as a man or preferred not to say what their gender was (but indicated a different gender at birth)

Fifty-five (1.2%, 55 of 4,540) reported having been assigned a different gender at birth.

Three-quarters of men (74.5%, 2,292 of 3,077) described themselves as being gay or homosexual, 19.0% (584 of 3,077) as heterosexual, and 5.2% (161 of 3,077) as bisexual. Ninety-five percent (95.1%, 904 of 951) of women described themselves as heterosexual, 1.8% (17 of 951) as bisexual and 0.8% (8 of 951) as gay or lesbian or homosexual. In addition, 40 (1.3%, 40 of 3077) men and 22 (2.3%, 22 of 951) women described their sexuality in another way or had preferred not to say.

The median age of participants was 52 years (age range: 20 to 90 years), with half aged between 43 and 60 years. Participants had been diagnosed with HIV between 1982 and 2021, with a median of 15 years since diagnosis, and half were diagnosed between 10 and 21 years ago. 1 in 10 participants (10.46%, 473 of 4,540) were diagnosed in 1995 or earlier, before the introduction of highly active antiretroviral therapy (HAART).

Half of the participants (50.2%, 2,280 of 4,540) reported their ethnicity as being white British, 21.5% (978 of 4,540) black African, 12.9% (585 of 4,540) another type of white background, 2.4% (108 of 4,540) black Caribbean, 2.3% (105 of 4,540) white Irish, 4.1% (186 of 4,540) Asian, and 1.8% (83 of 4,540) Hispanic America or Latino. Most (86.3%, 3,869 of 4,483) participants were first diagnosed with HIV in the UK and 5.0% (225 of 4,483) were first diagnosed in Europe, 3.3% (150 of 4,483) in Africa and 5.3% (237 of 4,483) elsewhere.

The majority (96.0%, 3,997 of 4,163) of participants resided in urban areas. Forty-five percent (45.2%, 2,053 of 4,540) lived in London, 20.4% (924 of 4,540) in the South of England, 17.1% (777 of 4,540) in the Midlands and East of England, 16.4% (745 of 4,450) in the North of England, 0.7% (30 of 4,450) in Wales and 0.2% (11 of 4,450) in Scotland.

Comparison of the Positive Voices survey 2022 and Positive Voices survey 2017 participants

The socio-demographic characteristics of the Positive Voices survey 2022 and Positive Voices survey 2017 populations were broadly similar (see Positive Voices data tables for more detail). In 2022, a slightly higher proportion (1.4%, 65 of 4,540) identified as trans, non-binary or in another way participated in the survey compared to 2017 (0.9%, 39 of 4,361). Efforts were made to oversample the transgender and gender-diverse population in 2022 to ensure a sufficient number of participants from this population group were represented.

The median age of participants in 2022 was slightly higher than in 2017; 52 years (age range: 20 to 90 years) in 2022 compared to 48 years (age range: 24 to 76 years) in 2017, which reflects the ageing cohort of people living with HIV. The median number of years since diagnosis also increased; 15 years in 2022, compared to 11 years in 2017.

In 2022, a smaller proportion of participants identified as black African (21.5% in 2022 compared to 26.8% in 2017) and a slightly greater proportion were educated up to secondary school level or higher (96.2% in 2022 compared to 93.5% in 2017) and lived in urban areas (96.0% in 2022 compared to 87.8% in 2017).

Representativeness and weighting of the Positive Voices survey 2022 participant sample

The demographic profile of the survey participants was compared to the profile of all people living with HIV accessing care in England during 2022, using national surveillance records. Comparisons of these populations were made by gender, age, ethnicity, area of residence, and treatment status (Figure 1).

There was an over-representation among men (7.6% difference), people of white ethnicity (13.5% difference), and people aged between 55 and 64 years (6.0% difference) and an underrepresentation among women (7.6% difference) and people of black African ethnicity (9.6% difference). This may be partly attributed to the fact that some of the larger sites adopted a different recruitment method, due to local resource challenges at that time, where instead of patients having been randomly pre-selected to take part, anyone attending the clinic was offered the survey. All other demographics that were compared differed by 5.0% or less.

To adjust for these differences, and to ensure estimates in this report were representative of the whole population seen for HIV care in 2022, the survey data was weighted. Subsequent findings in this report are presented using weighted percentages to represent the population living with diagnosed HIV, rather than frequencies from the survey. A full description of the Positive Voices survey 2022 sampling and weighting methodology is provided in Appendix 1.

Figure 1. Representativeness of Positive Voices survey 2022 participants compared to all people accessing HIV care in 2022 in England

Demographic categories

Estimates by gender are presented with men including trans men and women including trans women. In addition, people who identified as either trans, non-binary or in another way are presented separately due to the stark differences observed in this group across many areas in 2017 suggesting inequalities. This means that 29 trans people feature in both the men or women category and the trans, non-binary and other category.

Data is also presented by the reported sexuality of men, although not by the sexuality of women, as most women reported to be heterosexual (2.6% of women identified as gay, lesbian, or bisexual).

Four ethnicity groupings are considered throughout this report: white British, white other, black African, and other ethnicities. Other ethnicities include people who identified as any ethnicity other than black African, white British, or white other. Where data is shown by region, this is for England only, due to the small numbers of people participating from Wales and Scotland.

General populations comparisons

In some sections of this report comparisons are made with the general population. However, it should be noted that the demographic profile of people living with HIV is different from the demographic profile of the general population in terms of age, gender, ethnicity, and sexuality. For example, the median age (unweighted) of those participating in Positive Voices survey 2022 was 50 years (in all HARS attendees in 2022 this was 49.0 years) compared to 40.7 years in the general population in the UK (according to the Office for National Statistics (ONS) population estimates for the UK).

In Positive Voices survey 2022 31.2% (weighted) were women compared to 51.0% in the general population of England and Wales and 40.6% (weighted) of the participants in the Positive Voices survey 2022 were white British compared to 74.4% in the general population. These differences should be taken into consideration when interpreting comparisons.

Other comparisons

This report is based on weighted percentages for different demographic groups. In some cases, the numbers in the strata are small. Caution should be taken when interpreting percentages based on small numbers as some of the differences may be due to chance (refer to Positive Voices 2022: data tables for more detail on numbers).

This report has not been adjusted for factors that may affect the outcome such as age and gender. This will be considered in future publications.

HIV knowledge, diagnosis and treatment

HIV treatment adherence and side effects

Nearly all (99.4%) people reported to be taking antiretroviral therapy (ART) at the time of the survey. The proportion of those taking ART in 2022 increased slightly since 2017 with 99.4% and 97.7%, respectively. The prevalence of self-reported ART was also slightly higher than that observed by HARS (97.2%). There was a notable decrease in pill burden since 2017 with more people on a single tablet HIV regimen in 2022 (54.0%) than in 2017 (35.7%) (Table 1). The pill burden distribution in 2022 was similar across age, gender and ethnicity, apart from a slightly higher percentage of people aged 18 to 34 years old (63.8%) and a lower percentage of those aged 65 years and over (46.0%) on one tablet per day.

Table 1. Number of daily ART tablets (pills) taken by people living with HIV in 2022 and 2017

Year	1 pill taken daily	2 pills taken daily	3 pills taken daily	4 pills taken daily	5 or more pills taken daily
2017	35.7%	30.6%	24.0%	4.1%	5.6%
2022	54.0%	26.8%	16.6%	1.2%	1.3%

Adherence to ART continued to be high, with 88.7% reporting not having missed a tablet in the previous 14 days and overall, 44.9% of participants reported never having missed any of their HIV medication. Ninety-two percent (92.2%) reported their last viral load to have been undetectable; this compares with 97% having an undetectable viral load in HARS. This discrepancy may partly reflect people’s lack of knowledge of suppressed viral load status, with 3.8% reporting that they did not know at the time.

Since 2017, there has been a decrease in the proportion of those who had experienced side effects from their HIV medication in the previous 4 weeks from 16.7% in 2017 to 9.0% in 2022. The decrease in pill burden and side effects may be a consequence of an update to the British HIV Association (BHIVA) treatment guidelines in 2016. Most people were satisfied with their current HIV treatment regimen (67.8% very satisfied and 23.9% satisfied).

Awareness of U=U (undetectable=untransmittable)

A black African woman, aged 18 to 34 years, said:

It makes me feel comfortable and confident being undetectable. Most days I forget about my illness and live as normal a life as I can.

Awareness of the concept of U=U, undetectable=untransmittable, was assessed by asking whether people living with HIV had heard of the following: ‘A person on HIV treatment with undetectable viral load cannot pass on HIV through sex’. Overall, awareness of the concept of U=U was very high with 9 in 10 (92.3%) people aware (Figure 2). Across demographic groups, awareness was highest among young people (98.0% in 18 to 34 year olds) and lowest among women (88.2%).

People were subsequently asked if they believed the U=U statement to be true and could answer one of the following: ‘Yes, strongly believe’, ‘Yes, believe somewhat’, ‘No, I don’t believe’, ‘Not sure’, ‘I don’t know what undetectable means.’ Overall, 3 in 5 people (62.7%) strongly believed this statement. This varied by age, ethnicity and gender and was highest in gay and bisexual men (72.9%) and younger age groups (72.6% in aged 18 to 34) and lowest in women (50.8%), people of black African ethnicity (53.3%), and heterosexual men (56.3%). Among women, strongly believing in the statement varied by ethnic background: highest among women of white British ethnicity (59.6%), followed by people of black African ethnicity (51.2%), other white backgrounds (50.0%), and other minority ethnic backgrounds (42.8%).

Figure 2. Percentage of people living with HIV who have heard of the U=U statement and strongly believe the statement to be true by age, ethnicity, gender and sexuality, 2022

People living with HIV were asked how U=U made them feel about their HIV status. This was to evaluate whether understanding of the concept could reduce self-stigma. 3 in 5 people (58.1%) reported that the U=U statement made them feel much better about their HIV status; this was similar across age and ethnicity, however a lower proportion of women (52.9%) reported feeling much better compared to men (60.5%) and a lower proportion of heterosexual men (57.3%) reported feeling much better compared to gay and bisexual men (63.0%).

Quality of life, health and well-being

Life satisfaction

The level of life satisfaction was measured using a scale of 0 to 10 where 0 was ‘not satisfied at all’ and 10 was ‘completely satisfied’. The average score was 7.3 in 2022 (for both the full cohort and among those residing in England) compared to 7.5 in the general population in England in 2022 (according to ONS annual personal wellbeing estimates) (Figure 3).

The level of life satisfaction was similar across gender, age and ethnic groups however people who identified as trans, non-binary or in another way continued to report the lowest scores (5.7). The highest level of satisfaction was among people of black African ethnicity (7.8). Satisfaction increased with age (7.0 among people aged 18 to 34 years compared to 7.5 among people aged 65 years and over). Women reported a higher life satisfaction rating than men (7.5 and 7.2, respectively) however heterosexual men scored lower than gay and bisexual men (7.1 and 7.5, respectively). There was little change in overall life satisfaction among people living with HIV since 2017.

Figure 3. Average life satisfaction rating of people living with HIV by age, ethnicity, gender and sexuality and compared to the general English population, 2022

Health-related quality of life (EQ-5D-5L)

Health-related quality of life (HRQoL) is a widely used multi-dimensional tool which assesses a person’s relationship between health and quality of life (QoL). People were asked to identify problems and symptoms experienced on the day of answering questions about their daily life and activities, relating to the 5 domains of physical and mental health in the standardised 5 dimensions, 5 level, health outcome tool by EuroQoL (EQ-5D-5L) instrument for measuring HRQoL:

1. Mobility (walking).

2. Self-care (washing and dressing).

3. Usual activities (for example work, study, housework, family or leisure activities).

4. Pain and discomfort.

5. Anxiety and depression.

Data was compared to estimates from Health Survey for England (HSE) which was provided on request from NHS Digital for adults aged 16 years and over living in private households in England in 2018.

Figure 4 shows the proportion of people living with HIV who indicated any problems in the 5 EQ-5D-5L domains compared to the general population in England in 2018 (more recent data for the general population was not available at the time of publication).

Since 2017, there has been little change in the proportion reporting problems other than an increase in pain and discomfort from 46.1% to 48.8% in 2022. Compared to the general population, people with HIV scored worse across all 5 domains. Largest differences were observed in anxiety and depression (48.1% among people with HIV compared to 33% in the general English population) and feeling severely or extremely anxious (8.5% among people with HIV compared to 3% in the general English population).

Figure 4. Percentage of people living with HIV reporting any problems for each of the 5 EQ-5D-5L domains in 2017 and 2022, compared to the general English population (HSE 2018)

These 5 domains were combined to give an overall utility score (detail on this utility score is available in Positive Voices survey 2017). Scores ranged from 1 (full health) to 0 (a state as bad as being dead). The overall score was 0.77 among people with HIV in 2022 and 2017, lower than the score of 0.82 among the general population.

Figure 5 shows the variation of utility scores by demographic groups. The highest scores were observed in people of black African ethnicity (0.81), as in 2017, and the lowest among people who identified as trans, non-binary, or in another way (0.62). This corresponds with trends observed in the average life satisfaction (Figure 3). However, unlike the life satisfaction scores, there was no difference in the utility score among heterosexual men or gay or bisexual men, with both groups having a score of 0.78.

Figure 5. Health-related quality of life scores for people living with HIV, by age, gender, ethnicity and sexuality in 2022 and 2017, compared to the general English population in 2018 (HSE)

Social support

Health-related QoL and wellbeing, indicators of health, are influenced by a range of personal, psychosocial and behavioural factors, including social support. Social support is widely defined as a protective factor for HRQoL, wellbeing, and mental and physical health.

The Duke-UNC Functional Social Support Questionnaire (FSSQ) is an instrument for assessing an individual’s perceived strength of their social support network (see Appendix 3. Approximately half of people said they had as much support as they would like for each of the statements about social support, ranging from 47% to 55% across gender, age and ethnic groups (Figure 6).

Figure 6. Levels of functional support reported by people living with HIV across 6 out of 8 Duke-UNC Functional Social Support Questionnaire items in 2022

Resilience (14-item resilience scale (RS-14))

Resilience refers to a person’s ability to respond to stressors, adapt and use coping resources in new situations, which may include acute stress, trauma, or more chronic forms of adversity. High levels of resilience may be a protective factor for physical and mental health and has been linked to better QoL and lower levels of depression, and in people with HIV, it has been linked to higher rates of retention in care and low viral load (1 to 2). Resilience is therefore a useful indicator of wellbeing.

Resilience was measured for the first time in 2022. People rated how they would handle 14 different situations to give a measure of resilience (see Appendix 4 for more information). The average total score was high, at 76 (highest possible score was 98) (Figure 7).

People who identified as trans, non-binary, or in another way had the lowest levels of resilience (average score 68). Resilience increased with age (average score of 72 in aged 18 to 34 compared to an average score of 78 in people aged 65 years and over) and highest levels were among people of black African ethnicity (average score of 79).

Figure 7. Distribution of the average RS-14 scores among people living with HIV by age, ethnicity, gender and sexuality, 2022

a) Distribution of the average RS-14 among total cohort of people living with HIV, and by age, 2022

b) Distribution of the average R-14 by ethnic group, 2022

c) Distribution of the average RS-14 by gender and sexuality, 2022

Health conditions and medications

The proportion of adults living with HIV who are older is increasing and consequently the prevalence of non-HIV age-related health conditions is on the rise. Health conditions alongside HIV can require complex clinical management. Monitoring the prevalence of co-morbidities is essential for ensuring appropriate provision of integrated care services for people living with HIV.

Long-term health conditions

People living with HIV were asked whether they had ever been diagnosed with an additional long-term or chronic health condition. Conditions listed included diabetes, high cholesterol, hypertension (high blood pressure), osteopenia or osteoporosis, arthritis, asthma, chronic obstructive pulmonary disease (COPD), erectile dysfunction, kidney disease, neuropathy and peripheral neuropathy, dementia, epilepsy, and sleep disorder. Stroke was excluded as it was considered an acute condition (although long term sequalae may persist).

As may be expected from an ageing population, there was an increase in the prevalence of additional long-term conditions in 2022, with 66.8% reporting one or more conditions compared to 60.9% in 2017 (Figure 8). Whilst the prevalence of long-term conditions increased with age, an increase was observed in all age groups. By the age of 65, most people (88.7%) had an additional long-term condition.

Figure 8. Prevalence of self-reported, diagnosed long-term health conditions (excluding mental health) [note 1] among people living with HIV, by age, ethnicity, gender and sexuality, 2017 and 2022

[note 1] Long-term conditions presented here include: insomnia, diabetes, cholesterol, hypertension, other cardiovascular conditions, rheumatoid arthritis, osteopenia and osteoporosis, arthritis and other joint conditions, avascular necrosis, osteonecrosis, neuropathy, asthma, COPD, erectile dysfunction, renal, dementia, epilepsy and liver disease.

Cardiovascular conditions and diabetes

Cardiovascular conditions included high cholesterol, high blood pressure (hypertension), coronary heart disease, stroke or mini stroke and other circulatory conditions. Nearly half of all people living with HIV (46.7%) reported to have been diagnosed with a cardiovascular condition or diabetes, with the most common being high cholesterol (30.0%), followed by high blood pressure (25.0%) and diabetes (9.5%) (Figure 9). As expected, the prevalence of cardiovascular conditions and diabetes increased with age with 4 in 5 (80.0%) people having had a diagnosis in those aged 65 years and over.

The prevalence of cardiovascular disease and diabetes varied by ethnicity, following known ethnic variations for these conditions. Diabetes was highest in people of black African ethnicity (13.4%), high cholesterol highest in people of white British ethnicity (35.1%) and high blood pressure highest among people of black African ethnicity (35.2%).

Figure 9. Percentage of people living with HIV reporting a diagnosed cardiovascular condition or diabetes by age, ethnicity, gender and sexuality, 2022

Joint and bone conditions

Joint and bone conditions assessed included arthritis, osteopenia or osteoporosis and rheumatoid arthritis. Of these conditions, arthritis was the most common (11.5%) followed by osteopenia or osteoporosis (7.5%) and rheumatoid arthritis (6.5%) (Figure 10). The prevalence of each of these conditions had increased slightly since 2017 (arthritis, 10.7%, osteopenia or osteoporosis, 7.2%, rheumatoid arthritis, 4.6%). 1 in 5 people (20.5%) had any bone or joint condition, and the prevalence increased with age to 40.5% in people aged 65 years and over.

Figure 10. Percentage of people living with HIV reporting a diagnosed joint and bone condition by age, ethnicity, gender and sexuality, 2022

Cancer diagnoses

Participants were asked if they had ever been diagnosed with cancer, and to specify the type of cancer they had been diagnosed with. In 2022, just under 1 in 10 (9.3%) had ever been diagnosed with cancer, a small increase to the 8.2% that had ever been diagnosed with cancer in 2017 (Figure 11).

The distribution of cancer diagnoses across demographic groups remained unchanged since 2017. Having ever been diagnosed with cancer increased with age (25.3% in those aged 65 years and over compared to 2.7% in people aged 18 to 34 years). Cancer diagnoses were highest in people of white British ethnicity (12.3%), lowest in people of black African ethnicity (5.7%) and were higher in men (10.6%) compared to women (6.7%).

Some cancers are associated with advanced HIV and are referred to as AIDS-defining cancers, and these are usually mediated by another infection. In 2022, 1.7% of people living with HIV had ever had an AIDS-defining cancer. Over half (50.3%) of these AIDS-defining cancers were Kaposi’s sarcoma (KS), a third (27.7%) were non-Hodgkin’s lymphoma, and 22.1% were cervical cancer.

The most common non-AIDS defining cancers in people living with HIV were prostate (1.3%), lymphoma (including Hodgkin lymphoma) (1.2%), skin cancer (0.9%), breast cancer (0.5%), anal cancer (0.3%), and bowel cancer (0.3%).

Figure 11. Percentage of people living with HIV that report ever being diagnosed with any cancer, by age, ethnicity, gender, and sexuality, 2022

Mental health conditions, treatment and current symptoms

Participants were asked if they had ever been diagnosed with any of the following mental health conditions: anxiety, depression, personality disorder, bipolar disorder, eating disorder, post-traumatic stress disorder, psychosis or schizophrenia or other.

The prevalence of mental health conditions remained high and unchanged since 2017, with approximately 2 in 5 people (39.4%) having been diagnosed with at least one of these conditions (37.4% in 2017) (Figure 12). This is substantially higher than in the English general population with just over a quarter (26.4%) having had such a diagnosis in 2014 (last year of available data) (HSE 2016).

Figure 12. Percentage of people living with HIV reporting a diagnosed mental health condition [note 2], by age, ethnicity, gender and sexuality, 2017 and 2022

[note 2] Diagnosed mental health conditions include: anxiety, bipolar, depression, eating disorder, personality disorder, psychosis, post-traumatic stress disorder (PTSD), Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), autism, and other mental health conditions.

Mental health condition diagnoses across the demographic groups followed the same pattern as in 2017 (Figure 13), with conditions disproportionality affecting younger people (44.4% in those aged 18 to 34 years), people of white British ethnicity (49.4%) and gay and bisexual men (47.7%). Over half (56.0%) of people who identified as trans, non-binary or in another way reported ever having had a diagnosis.

Personality disorders (2.7%), eating disorders (2.7%), psychosis or schizophrenia (2.2%) and bipolar disorder (1.4%) remained rare. Overall, 6.7% reported having taken prescribed medication for a mental health condition during the previous 3 months and twice as many (13.2%) had received professional therapy (either online or face to face, for example counselling, psychotherapy or cognitive behavioural therapy).

Figure 13. Prevalence of the most common self-reported, diagnosed mental health conditions in people living with HIV by age, ethnicity, gender and sexuality, 2022

Many people may experience mental health conditions without seeking help or treatment and may therefore not have a formal diagnosis.

The presence of mental health symptoms was assessed using the Patient Health Questionnaire (PHQ-9) and the General Anxiety Disorder Questionnaire (GAD-7). Overall, 1 in 5 (20.5%) reported having current symptoms of depression (PHQ-9 score of 10 or above out of a possible total of 27).

The presence of symptoms of depression varied across demographic groups, similar to the pattern of diagnosed mental health conditions, with symptoms more common among younger people (29.5% among those aged 18 to 34 years), and people who identified as trans, non-binary or in another way (38.8%). The prevalence of depressive symptoms was lowest among people of black African ethnicity (14.9%).

1 in 7 (15.0%) were suffering from symptoms of anxiety (GAD-7 score of 10 or above out of a possible total of 21). The same trends were observed as for symptoms of depression with the highest prevalence among people who identified as trans, non-binary or in another way (28.1%).

Overall, 1 in 5 (22%) had current symptoms of either anxiety or depression. Of those reporting symptoms, half (49%) had ever been diagnosed with a mental health condition and 30% had had treatment for their symptoms in the previous 3 months. 1 in 5 (21%) people with current symptoms had never been diagnosed with a mental health condition or had treatment for their symptoms.

Other blood-borne viruses

Just under 1 in 10 (9.3%) people reported ever having been diagnosed with hepatitis B, and 1 in 14 (7.3%) with hepatitis C. Hepatitis B and C diagnoses were more common among men (11.0% and 9.1% respectively) compared to women (5.8% and 3.3% respectively), and more common among gay and bisexual men (10.7% and 9.9% respectively), compared to heterosexual men (10.1% and 6.5% respectively).

Health and social service use and evaluation

A woman of mixed ethnicity, aged 55 to 64 years, said:

I always receive excellent care at my clinic[…]. The nurses at the sexual health clinic are very supporting and have such great attitudes and mannerisms.

HIV clinical service rating

People were asked to rate the care they receive from their HIV clinic using a scale of 0 to 10. The average HIV clinic rating was very high at 9.4, like in 2017 (9.3). The highest average score (9.5) was among people aged 65 years and over, heterosexual men, and those based in the south of England. The lowest average score (8.8) was among people who identified as trans, non-binary, or in another way.

HIV patient-reported experience measures (PREMs)

Experiences of care received from HIV clinics were captured with 5 patient-reported experience measure (PREM) statements. Participants were asked whether they ‘Strongly agree’, ‘Agree’, ‘Disagree’, ‘Strongly disagree’, or ‘Don’t know or not applicable’ to the following 5 PREM statements:

1. The clinic provides enough information about my HIV.

2. I feel supported to self-manage my HIV.

3. I am involved in decisions about my HIV treatment and care.

4. At appointments, I feel I have enough time to cover everything I want to discuss.

5. The staff listen carefully to what I have to say.

Agreement was defined as ‘Strongly agree’ or ‘Agree’.

Agreement to all 5 PREMs was 95% or higher, suggesting a similarly positive experience of HIV services as in 2017.

Overall, 97.0% said their clinic provided enough information about HIV and that staff listened carefully to what they have to say, 96.4% said they felt supported to self-manage their HIV and had enough time to discuss queries at appointments, and 94.9% felt involved in decisions about their HIV treatment and care.

Across gender, ethnicity and age, agreement to all PREMs was above 91% (Figure 14). Lower scores were among people aged 18 to 34 years (91.7% feeling supported to self-manage their HIV) and people who identified as trans, non-binary or in another way (90.9%, feeling listened to by staff). However, these differences were small, indicating that HIV services are broadly equitable.

Figure 14. Percentage of people living with HIV who agree with the statement on patient experience with HIV clinical services by age, ethnicity, gender and sexuality, 2022

General practitioner registration and knowledge of HIV status

Nearly all people living with HIV (98.4%) were registered with a general practitioner (GP), as was the case in 2017 (97.5%). Of those registered, 9 out of 10 (89.3%) had shared their HIV status with their GP, slightly less that the 93.8% who had in 2017. Not informing the GP of their HIV status was more common among younger people (74.8% had shared their status with their GP among those aged 18 to 34 years) and people who identified as trans, non-binary, or in another way (80.4% had shared their status). Conversely, nearly all people (95.9%) aged 65 years and over had told their GP. Sharing of HIV status varied by ethnic group, with people of other white backgrounds and other ethnic backgrounds reporting the lowest levels (84.6% and 84.9%, respectively), compared to people of black African (90.0%) and white British (91.9%) ethnicity.

General practice rating

A man of white other ethnic background, aged 55 to 64 years, said:

GP and doctor surgery staff still very negative about HIV and put down any illness to my HIV.

People living with HIV rated the care they received from their GP on a scale of 0 to 10. Overall, the average GP rating was moderate, at 6.5 out of 10, signifying a decrease in the level of care compared to 2017, when the average rating was 6.9. The average GP rating was much lower compared to the average HIV clinic rating (9.4 out of 10).

The lowest GP ratings were reported by younger people (5.5 among people aged 18 to 34 years), people who identified as trans, non-binary, or in another way (5.4), and people of other white ethnic background (6.0). People aged 65 years and over and people of black African ethnicity reported the highest GP ratings (7.1 and 6.9, respectively).

Despite average rating being relatively low, GP satisfaction was not as low as reported by the general population, and the decrease since 2017 was also comparatively small. The 2022 British Attitudes survey reported the lowest level of satisfaction with GP services since the survey began with only 35% of the general population satisfied with their GP; much lower than in 2017 when it was 65%.

General practice service patient-reported experience measures (PREMs)

Experience of GP services were captured through 4 PREM statements:

1. In my opinion, my GP knows enough about my HIV condition and treatment.

2. I am comfortable asking my GP questions about my HIV.

3. My GP is as involved as I want them to be with my HIV care.

4. As far as I am aware, my HIV specialist and my GP communicate well regarding my health.

Overall, 65.0% said their GP knows enough about their HIV condition and treatment, 64.5% felt their HIV specialist and GP communicate well, 62.0% said their GP is as involved as they want them to be with their HIV care, and 57.7% felt comfortable asking their GP questions about their HIV.

A greater proportion of older people (aged 65 years and over) agreed with all 4 PREM statements than any other demographic group, with agreement ranging from 72% to 77% in this age group (Figure 15). Agreement was much lower among younger people, (ranging from 42% to 54% among people aged 18 to 34 years) people of other white ethnicity (50.9% to 54.7%) and people who identified as trans, non-binary, or in another way (49.6% to 63.9%). The lowest rating was given for feeling comfortable asking GP questions about HIV with only 2 in 5 in people aged 18 to 34 years agreeing (42.2%).

Figure 15. Percentage of people living with HIV who agree with the statement on patient experience with general practice, by age, ethnicity, gender and sexuality, 2022

Experiences and satisfaction with remote general practice, HIV and other healthcare appointments

During the COVID-19 pandemic, there was a shift towards providing more healthcare services online, including HIV and GP consultations. Remote consultations included consultations over the phone, via text or text messaging or via video. Overall, 9 in 10 (92%) people had had a remote consultation, 76.1% with their HIV clinic, 83.8% with their GP and 62.5% with other services.

Most (74.2%) of those who had received a remote HIV clinic consultation were either satisfied or very satisfied with their HIV clinic remote appointments, however only 2 in 5 (42.6%) were either satisfied or very satisfied with their remote GP appointments and a similar proportion (41.7%) were satisfied or very satisfied with their other healthcare remote consultations.

Satisfaction with remote HIV services was generally lower in younger people (70.2% in 18 to 34 year olds), people of other ethnicities (65.5%) and of other white ethnicity (62.7%). Satisfaction with remote HIV services was higher among women (77.3%) compared to men (73.0%) and among heterosexual men (79.1%) compared to gay and bisexual men (70.4%).

People who identified as trans, non-binary or in another way were least satisfied with their GP appointments (30.4%), followed by people of other white ethnicity (34.6%) and other ethnicities (34.9%). Londoners were most satisfied (41.4% satisfied or very satisfied) with remote GP consultations compared to other regions in England.

Satisfaction levels with other remote health services were lowest in the youngest age group (33.4% in people aged 18 to 34 years) and people of other white (34.6%) and of other ethnic background (34.2%).

Nearly three-quarters (73.6%) of people living with HIV had private access to the internet always (62.6%) or most of the time (11.0%), where they could access health records confidentially. This was lower in older people (58.7% in people aged 65 years and over), people of black African ethnicity (58.9%), and women (59.7%).

NHS social care and support services usage

Participants were asked to report on their use of NHS, social care and support services and HIV peer support services in the previous 12 months. General practice was the most used service (81.2%), followed by dentists (54.1%), sexual health services (48.2%), emergency departments (including minor injuries department, NHS walk-in and urgent care, 22.2%) and NHS Direct 111 service (21.5%) (Figure 16). There was little change in the proportion of people using these services in 2017 with 52% having used a dentist, 55% a sexual health clinic, and 20% accident and emergency services (2017 data for other services was not available). In 2022, over the course of a year, GP services were contacted an average of 4.1 times, dentists 2.1, sexual health services 2.3, accident and emergency services 1.7, and NHS Direct 1.8 times.

1 in 10 (10.3%) people living with HIV had used a HIV support service and this was more common among people from minority ethnic groups (12.5% of people of black African ethnicity, 11.1% of other ethnicities other than white) and women (11.8%). The most contact was among people who identified as trans, non-binary, or in another way (12.3%). Of those who had contact, the average number of contacts with support services in the past year was 4.7. Levels of use of HIV support services varied by whether people lived in an urban or rural setting, with 10.5% having had contact with a service in the last year in urban areas compared to 7.0% in rural areas.

1 in 10 (10.0%) people also had contact with a mental health service in the last year. Demographic variations in use were similar to that seen in reported mental health diagnoses. Mental health service contact was highest among younger people (15.2% among people aged 18 to 34 years) and among people who identified as trans, non-binary, or in another way (19.7%). On average, people who had contact with mental health services, had had 7 contacts with a mental health service in the last year. Mental health service use was higher in those who lived in urban areas (10.3%) compared to rural areas (7.8%) and in London (12.3%) and the North of England (9.3%) compared to the South of England (8.6%) and the Midlands and East of England (7.3%).

There were also regional differences in the use of accident and emergency serivces, Londoners having the highest proportion of use (24.3%), followed by those from the North of England (23.0%), Midlands and the East of England (21.7%), and the South of England (18.2%).

Figure 16. Percentage of people living with HIV who used NHS, social care and support services in the last year and average number of contacts among those with any contact with services, 2022

General health and health-related behaviours

Physical activity

Levels of physical activity were assessed using the General Practice Physical Activity Questionnaire (see Appendix 5. Physical activity can have a wide range of health benefits. The current recommendations are to undertake at least 150 minutes of moderate activity or 75 minutes of vigorous intensity activity over the course of a week.

Overall, 3 in 5 (59%) people living with HIV were ‘less than active’, ranging from 47.9% (among people of other white ethnicity) to 69.8% (among people aged 65 years and over) across demographic groups. There was a notable difference in the levels of diagnosed other chronic health conditions and additional health service use in the last year between people who were classed as ‘active’ compared to ‘less than active’ by the Physical Activity Index (PAI) (Table 2), with lower levels of diagnoses and healthcare usage among the active.

Table 2. Prevalence of chronic health conditions and health service usage in the previous 12 months by levels of physical activity for people living with HIV in 2022

Levels of physical activity	Any diagnosed cardio and diabetes conditions	Any diagnosed joint bone conditions	Any diagnosed mental conditions	Used GP	Used accident and emergency (A&E)
Active	35.2%	12.3%	30.5%	77%	20.5%
Less than active	45.8%	14.9%	34.3%	80.9%	19.3%

Body mass index

Body mass index (BMI) is a measure of estimated body fat and is used to identify whether a person has excess weight or obesity and to predict risk for long-term health conditions like cardiovascular metabolic disease and diabetes (see Appendix 6 for more detail on how this is calculated). Overall, the average BMI of people living with HIV was 27.1 kilograms per metre squared (kg/m²), which was similar to the general population average of 27.5kg/m² (HSE).

Nearly two-thirds of people (62.4%) were overweight (BMI 25kg/m² to 30kg/m²); half of whom (29.0% overall) were considered obese (BMI greater or equal to 30kg/m²) (Figure 17). This was similar to estimates for the general population in 2021, where 64% were overweight and 26% were obese (HSE). Highest rates of obesity were in people of black African ethnicity (78.9%) compared to people of other ethnicities, as well as women (78.9%) compared to men (56.2%). Heterosexual men were substantially more likely to be overweight or obese (70.5%) compared to gay and bisexual men (51.0%).

The proportion of people overweight or obese has increased since 2017 across all demographic groups, apart from in those who identified as trans, non-binary or in another way (57.3% in 2017 versus 55.9% in 2022). The biggest increases were seen in those aged 65 years and over (an increase of 9.0%), those from minority ethnic backgrounds other than black African and white ethnic groups (9.2%), and among heterosexual men (6.8%).

Figure 17. Percentage of people living with HIV classified as overweight or obese (BMI: 25kg/m² or more), compared to the general English population in 2022 (HSE)

Alcohol and tobacco use

Levels of alcohol consumption were assessed using the alcohol use disorders identification test consumption (AUDIT-C) scale. Close to 1 in 3 (28.6%) people living with HIV never drink any alcohol (compared to 1 in 5 in the general population (data from HSE)) and nearly 1 in 10 (9.7%) drink 4 or more times a week.

Alcohol consumption was generally lower in 2022 compared to 2017. A higher frequency of alcohol consumption (more than 4 times per week) was more common in people of white ethnicity (16.3% white British, 11.8% other white ethnic group) compared to the other ethnic groups and was more common in men (12.8%) than women (3.3%), which was also reflected in the general population. Twelve per cent (11.8%) of people living with HIV reported binge drinking on a weekly basis or more regularly within the last 3 months, which was lower than in 2017 (19.3%). This compares to 19% of men and 12% of women binge drinking on a weekly basis within the last week in the English general population in 2018.

In 2022, 16.2% of people living with HIV were current smokers; a decrease from 19.5% in 2017, but still higher than the 12% reported in the general adult population (according to HSE). Rates of smoking in men with HIV (20.1%) were higher than in the general population of men (13%) and were more than double than in women with HIV (7.5%). However, among women this figure was lower than that observed in the general population of women (10%).

Recreational drug use

People reported on their recent experiences of recreational drug use by selecting any drugs they had used in the previous 3 months from a given list (see Appendix 8 for further details).

In 2022, 1 in 5 (20.8%) had used a recreational drug in the previous 3 months, slightly lower than in 2017 (23.0%). Demographic variations in drug use remain the same as in 2017, although certain groups were more likely to have consumed drugs in the previous 3 months:

• younger people (aged 18 to 34 years: 36.7%)
• gay and bisexual men (34.7%)
• people who identified as trans, non-binary or in another way (36.7%)
• white ethnicities (white British 29.1%, white other 33.3%)
• other ethnicities (24.6%)

Recent drug use was considerably higher among men (28.0%) in comparison to women (4.7%), and in gay and bisexual men (34.7%) compared to heterosexual men (10.1%). The most commonly used drugs were cannabis (9.4%), amyl nitrates (also known as poppers) (7.8%), and cocaine (6.7%).

Nationally, in the general population (according to census data on drug misuse), cannabis was also the most widely used drug to be taken within the last year for people aged 16 to 59 years, with 7.4% using it. Among people living with HIV, the use of crack, heroin and lysergic acid diethylamide (LSD) was rarer (0.5%, 0.2%, and 0.4%, respectively), as was the use of anabolic steroids (0.5%).

Chemsex and slamming

Chemsex is the use of drugs before or during sex to increase pleasure, stamina and reduce inhibitions, in particular the use of mephedrone, methamphetamine (crystal meth) and gamma hydroxybutyrate (GHB) or gamma butyrolactone (GBL). Slamming is defined as injecting drugs or being injected with drugs (slammed) before or during sex, in particular injecting crystal meth or mephedrone. This practice is most common among sexually active gay and bisexual men and the following information refers to this population group only.

The prevalence of chemsex was slightly higher in 2022 with 14.1% reporting chemsex in the previous 3 months compared to 13.1% in 2017. The most commonly used chemsex drugs were methamphetamine (8.3%) and GHB or GBL (7.2%). Chemsex use was more prevalent among younger people, with approximately 1 in 5 reporting use among adults aged 44 years and under. As is the trend with recreational drug use overall, chemsex use in gay and bisexual men varied by ethnicity (16.3% other white, 16.8% other ethnicity, 11.5% white British and 9.0% in black African). A quarter (24.8%) of chemsex users had slammed chemsex drugs in the previous 3 months.

Injecting drug use

Since 2017 there has been a marginal decrease in the prevalence of injecting drug use with 1 in 14 (7.3%) reporting they had ever injected any non-prescribed drugs or other substances in 2022 compared to 1 in 10 (9.7%) in 2017. 1 in 7 people (13.8%) who had ever injected drugs had injected in the last month and over two-thirds (71.5%) had last injected more than a year ago. Ever having injected any non-prescribed drugs was highest among people who identified as trans, non-binary or in another way (21.2%). Nearly a quarter (23.2%) of people who ever injected drugs were chemsex users.

Among people who had ever injected drugs, 1 in 6 (16.9%) reported to have ever been diagnosed with hepatitis B and 1 in 3 (30.0%) with hepatitis C. 1 in 5 (21%) people who injected drugs in the last year accessed substance misuse services in the last year.

Stigma and discrimination

A woman of mixed ethnicity, aged 45 to 54 years, said:

Just listening to people in 2022 talk about ‘AIDS’ like it is an absolutely filthy thing lets you know stigma is 100% still out there.

Sharing HIV status outside healthcare settings

A man of mixed ethnicity, aged 55 to 64 years, said:

If you do not ‘declare’ your (HIV) status, you feel you are hiding something. If you do declare, they may reject you. If you don’t declare and they find out or intuit it, they may feel you should have told them.

Many people with HIV find it difficult to share their status with people outside of healthcare settings. Only 1 in 8 (12.9%) people had shared their HIV status with most people in their lives and 1 in 10 (10.4%) had not told anybody apart from healthcare staff (Figure 18).

Half (51.6%) of all people had shared their status with one or more current sexual partners; and a similar proportion (53.2%) had informed one or more friends. People less commonly shared their HIV status with their co-workers (16.8%) or other people including neighbours (7.0%).

It was more common for older people not to share their status with anyone (15.9% in those aged 65 years and over), as well as women (14.1% compared to 8.8% in men) and people from ethnic groups other than white (14.8% in people of black African ethnicity, 13.0% in people of other ethnicities compared to 6.6% in people of white British and 8.4% in people of other white ethnicities).

Those who had not told anybody had an average of 2.5 contacts with HIV peer support organisations in the last year compared to an average of 7.2 contacts in the last year among people who had told most people.

Figure 18. Percentage of people living with HIV who had shared their HIV status with different people in 2017 and 2022 [note 3]

[note 3] No data available for ‘Most of the people in my life’ in 2017.

Self-stigma

Self-stigma (or internalised stigma) is when one applies negative ideas about living with HIV to oneself. In 2022, almost half of people (45.1%) felt ashamed of their HIV status. Self-stigma was more common in younger people (54.4% in 18 to 34 year olds versus in 36.7% among people aged 65 years and over), heterosexual adults (47.7% in women and 48.1% in heterosexual men versus 42.5% in gay and bisexual men) and people who identified as trans, non-binary or in another way (47.6%) (Figure 19).

1 in 3 people (32.1%) reported low self-esteem due to their HIV status. Among those with low self-esteem, just over half (54.7%) believed strongly in U=U compared to two-thirds (67.1%) among those without low self-esteem.

Figure 19. Percentage of people living with HIV reporting types of self-stigma by age, ethnicity, gender and sexuality, 2022

Experience of stigma in different settings

Experienced or enacted stigma is the lived experience of negative reactions; anticipated stigma describes the discrimination expected by an individual and perceived stigma is an individual’s perception about how they will be treated because they are living with HIV.

Experiences of stigma among the general public

1 in 25 people (4.3%) reported being verbally harassed because of their HIV status in the past year and 6.0% more than a year ago (Figure 20). Over 1 in 5 (22.6%) people who identified as trans, non-binary or in another way reported being verbally harassed because of their HIV status in the last year and a further 1 in 8 (12.4%) experienced this over a year ago.

Experiences of stigma among family and friends

Overall, 1 in 30 (3.1%) people living with HIV had felt excluded from family activities and 1 in 25 (4.3%) felt that family members had made discriminatory remarks or gossiped about them in the last year. 1 in 7 (13.4 and 14.7% respectively) people who identified as trans, non-binary or in another way report having encountered these stigmatising behaviours in the previous year (Figure 20).

Figure 20. Percentage of people living with HIV reporting stigma in different settings, 2022

Experiences of stigma in health care settings

A white British man, aged 45 to 54 years, said:

Despite the U=U program hospitals are still treating HIV patients with a massive yellow sticker on medical documents as a warning of contagion - so much for the medical world understanding HIV!

Since 2017, there has been a decrease in the proportion of people who reported having not been treated well in the previous year in healthcare settings due to their HIV status (5.8% in 2022 compared to 7.6% in 2017) (Figure 21). However, 1 in 14 (7.2%) had avoided accessing healthcare services and 1 in 7 (13.7%) had worried about being treated differently to other patients by healthcare staff during the previous year.

1 in 11 (9.1%) people had ever heard healthcare staff gossiping about their HIV status; 3.4% had heard this in the past year and a further 5.7% had heard this more than a year ago. People who identified as trans, non-binary or in another way most commonly (8.0%) reported this in the last year. Equivalent data was not available from the 2017 survey.

1 in 9 (11.8%) people were afraid to attend healthcare services in the last year due to concern that someone may learn their HIV status and over a quarter (26.4%) had ever felt afraid to attend. Fear in the past year was most frequently reported among younger people (18.4% in people aged 18 to 34 years versus 4.4% in people aged 65 years and over), people of black African ethnicity (13.5% versus 9.2% in people of other white ethnicity), women (14.1% versus 10.7% in men) and people who identified as trans, non-binary or in another way (10.4%).

Around 1 in 7 (7.2%) reported avoiding accessing healthcare services because of their HIV status in the previous year. Avoidance was higher in younger people (11.6% in 18 to 34 year olds) and people who identified as trans, non-binary or in another way (14.0%).

Over 1 in 10 (10.4%) people felt that they were ever refused healthcare because of their HIV status (4.1% in the last year). This again was higher in younger age groups (12.6% in aged 18 to 34), women (11.4% compared to 9.8% in men), and in people who identified as trans, non-binary or another way (25.4%).

Figure 21. Percentage of people living with HIV reporting stigma in healthcare settings in the last year, 2017 and 2022

Physical and sexual abuse

Over 1 in 4 people (25.9%) reported ever experiencing physical violence (defined as being pushed, shoved, slapped, hit, kicked, choked or otherwise physically hurt). Experience of physical violence was higher in young adults but was most prevalent in people who identified as trans, non-binary or in another way (49.7%). Of those that experienced physical violence, 9.4% believed this was because of their HIV status, with a higher proportion of people attributing it to this among people of black African ethnicity (11.7%) and women (12.5%).

1 in 7 (14.4%) people reported ever being sexually assaulted (which is here defined as physically forced to have sex or coerced to have sex or penetration with an object). This compares to 3.8% experiencing sexual assault by rape or penetration (or attempts) since the age of 16 in the general population aged 16 to 74 years in March 2020, according to the Crime Survey for England and Wales. Of those that had been sexually assaulted, 12.3% thought this was because of their HIV status.

Housing, work and finances

Housing

In 2022, a slightly higher proportion of people were homeowners or purchasing a house or flat in comparison to 2017 (40.4% versus 36.4%), while just over a quarter (26.1%) were renting a privately-owned home. The proportion of people renting homes from a council or housing association had decreased since 2017, with 25.2% in 2022 in comparison to 30.2% in 2017. However, in the general population of England and Wales (according to census data), 62.5% of households in 2021 owned their accommodation outright or with a mortgage, loan or shared ownership, 20.3% rented their accommodation privately, and 17.1% were in social housing.

In 2022, the proportion of people with HIV who lived in residential care homes had increased from with 0.1% in 2017 to 0.4% in 2022, and those in temporary accommodation or homeless from 1.4% in 2017 to 2.8% in 2022. The percentage of people living in sheltered accommodation had gone down from 0.5% in 2017 to 0.1% in 2022.

Employment status

7 in 10 (69.7%) people with HIV were employed, including 51.4% full-time (working at least 30 hours per week) and 10.4% part-time (less than 30 hours per week) (see Appendix 9 for definitions of employment and unemployment). This is higher than in the general adult population, of whom 6 in 10 (57%) were employed or self-employed in any capacity (according to employment and labour census data; note this data is for people living in England and Wales aged 16 years and over).

1 in 10 (10.2%) people were retired, 1 in 15 (6.8%) were sick or disabled, and 1 in 30 (3.3%) were not in employment for other reasons, such as being a full-time student or carer.

1 in 10 (10.0%) people with HIV were unemployed. Across the general population in 2022, a much higher percentage were retired (22%), and not seeking employment for other reasons (14%) and a lower percentage (4%) were sick or disabled.

Within the HIV population, unemployment was highest among people who identified as trans, non-binary, or in another way (18.8%), women (14.3%), people of black African ethnicity (13.5%), and other minority ethnicities (12.7%).

Claiming benefits

Overall, 21.7% were in receipt of a means-tested benefit (33.1% of people who identified as trans, non-binary, or in another way, 30.2% of women, and 17.6% of men). This is nearly double that of the general adult population who were claiming these benefits in 2021 (approximately 13%). Means tested benefits include those awarded based on a person’s income, such as Universal Credit, Tax or Pension Credits, Housing Benefit, Income Support, and Jobseekers Allowance (JSA), but did not include Child Benefit.

The proportion of people in receipt of Disability Living Allowance (DLA), Personal Independence Payment (PIP), Incapacity Benefit, or Employment and Support Allowance (ESA) was 13.9% and highest in those aged 65 years and over (21.1%), in people who identified as trans, non-binary, or in another way (20.3%), and in people of white British ethnicity (16.7%) (Figure 22). Again, this is approximately double that (approximately 7%) in the general adult population of England, Wales and Scotland who were claiming these benefits in 2021.

Ability to meet basic needs

People were asked whether they had enough money to afford their basic needs, for example, food, rent, gas, electricity, and water. Just under half (48.6%) of people always had enough money to meet their basic needs. A further 1 in 4 (26.9%) stated that they had enough money most of the time, 1 in 6 (16.2%) some of the time, and 1 in 12 (8.4%) never had enough money for basic needs.

A much higher proportion of people of black African ethnicity (74.4%) and those of other minority ethnicities (52.2%) reported that they did not always have enough money to meet their basic needs when compared to people of white British ethnicity (36.5%). This was also the case for people who identified as trans, non-binary, or in another way (72.1%) and women (70.3%).

Ability to keep up with bills

People were asked whether their household had been keeping up with bills and credit commitments over the past 12 months. Over 1 in 4 (27.0%) people were behind with some or all of their bills. Similar to the demographic pattern of people having enough money for basic needs, people of black African ethnicity were most likely to be behind with bills (43.5%), as were people who identified as trans, non-binary or in another way (36.3%) and women (35.7%). Heterosexual men were more likely to be behind with bills than gay and bisexual men (35.2% versus 17.4%). This may be in part explained by the ethnic differences within these groups (10% of gay and bisexual men are of black African ethnicity compared to 29% of heterosexual men).

Figure 22. Percentage of people living with HIV receiving means tested benefits, disability benefits and not keeping up to date with bills by age, ethnicity, gender and sexuality, 2022

Met and unmet needs

A white British man, aged 35 to 44 years, said:

Did not know who or where to turn to for help, felt this was as important to other people, felt shame, feeling lonely.

People were asked about their HIV, healthcare, and social and welfare needs in the previous year, and whether these needs had been met. Participants were provided with a list of services related to managing their HIV and other health, social and welfare needs. They were asked to indicate one of the following:

• I received this service
• I needed the service but could not get it
• I needed the service but did not try to get it
• I needed the service but did not know about it
• I did not need the service

The needs of people living with HIV are diverse. The extent to which people’s needs are met may have an impact on their overall health and wellbeing.

They were asked to indicate one of the following: ‘I received this service’ or ‘I needed the service but could not get it’ or ‘I needed the service but did not try to get it’ or ‘I needed the service but did not know about it’, or ‘I did not need the service’. The needs of people living with HIV are diverse. The extent to which people’s needs are met have a direct impact on their overall health and wellbeing.

Overall, in 2022 68% indicated that they had any HIV service-related need, 58% had another health service need and 43% a social welfare need (Table 3). Almost 1 in 4 (24%) people living with HIV had an unmet HIV-related need, just under 2 in 5 (39%) had an unmet health need and a third (35%) an unmet social welfare need. While the percentage reporting an overall need has gone down in these 3 areas over the 5 year period between 2017 to 2022, the already high level of unmet need has gone up for non-HIV health services and social and welfare services.

Table 3. Percentage of need and unmet need of HIV, other health, and social and welfare services in people living with HIV, 2017 and 2022

Met and unmet needs	HIV services 2017 [note 4], [note 5]	HIV services 2022	Other health services 2017 [note 5]	Other health services 2022	Social and welfare services 2017 [note 5]	Social and welfare services 2022
Percentage with any met or unmet need (out of total)	74%	68%	62%	58%	46%	43%
Percentage with any unmet need (out of total)	25%	24%	35%	39%	34%	35%

[note 4] Does not include a question on ART side effects support in 2017.

[note 5] Does not include ‘other’ options in 2017.

HIV support services usage and need

HIV support services are often charity, voluntary or other non-profit organisations that provide non-clinical support to people living with HIV. They often aim to meet the physical, emotional, or social welfare needs of people living with HIV and provide services that complement their clinical care. Overall, 1 in 10 (10.3%) had used an HIV support service within the previous year in 2022, which compares to 1 in 6 (16.4%) in 2017. In 2022, the use of these services was more common among women (11.8%) and people of black African ethnicity (12.5%).

In 2022, 68% of people living with HIV stated that they had had a HIV-related service need in the past year. The most commonly reported need was for HIV treatment advice, but this was largely met with only 4.8% having an unmet need in this area (Figure 23). Both long-term condition support and peer support had a large proportion of unmet need (17% and 16.2% with this unmet need, respectively). This was similar to 2017. Two-thirds of people with any HIV service need had all their needs met. Variation in the met and unmet HIV-related service needs are presented in Figure 24.

Figure 23. Percentage of people living with HIV with HIV service met and unmet needs, 2017 and 2022 [note 6]

[note 6] In 2017, participants were not asked whether they needed and or had received help managing the side effects of their HIV medication in the last year.

Figure 24. Percentage of people living with HIV with HIV service met and unmet needs by age, ethnicity, gender, sexuality and region, 2022

a) Information about living with HIV (including websites)

b) HIV treatment advice

c) Professional help to take their HIV tables on time or correctly

d) Help managing side effects of HIV medications

e) Peer support or social contact with other people with HIV

f) Help sharing their HIV status

g) Long term condition management support

Other health needs

With 2 exceptions (weight management and drug detox) health service needs were slightly lower in 2022 than in 2017 (Figure 25). The largest needs identified in the last year were for a psychologist or counsellor (27.8% need, 14.8% unmet need), help for stress management (30.7% need, 19.5% unmet need), weight management (30.9% need, 19.4% unmet need) and help or advice regarding their sex life (21.6% need, 12.0% unmet need).

Similar to the findings from 2017, there was a large amount of unmet health service needs in 2022 which, in some areas, comprised of half of the reported need, suggesting that health services are continuing to face challenges meeting the needs of people living with HIV. There are variations in met and unmet need across the different demographic groups. Women and people who identified as trans, non-binary or in another way had a higher level of unmet need for weight management (23.6% and 44.3%, respectively) (Figure 26). Overall, people who identified as trans, non-binary, or in another way had the highest levels of unmet health service need.

Figure 25. Percentage of people living with HIV with health service met and unmet needs, 2017 and 2022

Figure 26. Percentage of people living with HIV with health service met and unmet needs by age, ethnicity, gender, sexuality and region, 2022

a) Psychologist or counsellor

b) Help to manage stress

c) Help to manage weight

d) Help or advice regarding their sex life

e) Help to stop smoking

f) Alcohol counselling or treatment

g) Drug counselling

h) Chemsex support

i) Drug detox or maintenance treatment

j) Family planning or advice on getting pregnant

k) Home health services

Social and welfare needs

Over 2 in 5 people had any type of social or welfare need and the majority of this was unmet (43% and 35%, respectively). Figure 27 shows the range of different needs with housing support being the highest need (22.2%) and loneliness or isolation being the highest unmet need (14.8%).

Despite the COVID-19 pandemic, the overall proportion needing help with loneliness or isolation was lower than observed in 2017, although the unmet need remained the same. There were variations between the demographic groups; younger people had a greater need and unmet need for help with loneliness and isolation in comparison to the oldest age group (20.9% need and 17.5% unmet need, in those aged 18 to 34 years compared to 16.0% need and 13.7% unmet need in those aged 65 years and over) (Figure 28).

People of black African ethnicity had a higher need and unmet need for meal or food services (19.9% and 13.4%, respectively), housing support (32.0% and 21.9%, respectively), help claiming benefits (24.9% and 15.4%, respectively) and help with employment and career skills (20.6% and 13.4%, respectively).

Figure 27. Percentage of people living with HIV with social and welfare met and unmet needs, 2017 and 2022

Figure 28. Percentage of people living with HIV with social and welfare met and unmet needs by age, ethnicity, gender and region, 2022

a) Housing support

b) Meal or food services

c) Childcare services

d) Relationship advice

e) Help with loneliness or isolation

f) Employment advice and career skills

g) Help claiming benefits

h) Financial advice

i) Legal advice

j) Immigration support

k) Domestic violence services

Impact of COVID-19

Experiences with COVID-19

The COVID-19 pandemic had a huge impact on the lives of people in the UK as well as internationally, affecting not only health and wellbeing but also income and livelihood and access to health services. People were asked about how the COVID-19 pandemic had impacted them. Whilst the pandemic affected people in different ways, many of the responses for people with HIV will resonate with others living through the pandemic. Nearly three-quarters (72.6%) reported that it affected them in at least one way.

Almost 1 in 5 (18.6%) people living with HIV reported loss of employment or income (Figure 29). This impact seemed to decline with age. It was also more common for men (19.9%), people of ethnicities other than white and black African (22.2%), people who identified as trans, non-binary or in another way (35.2%) and for people living in London (20.2%). 1 in 4 (25.5%) reported financial insecurity. This declined with age and was more common in people of ethnicities other than white British and people who identified as trans, non-binary or in another way.

Over 1 in 10 (11.4%) experienced food insecurity. Housing insecurities were reported in 1 in 12 (8.4%). This percentage decreased with age and was more commonly reported in people other than those of white British ethnicity and people who identified as trans, non-binary or in another way. It was also more common in London compared to the rest of England.

1 in 4 (24.9%) reported it was more difficult to access healthcare or medication. This was higher in men (26.5%) compared to women (21.3%). A similar proportion (26.9%) reported experiencing worse mental health. This was much higher in the younger age groups (42.2% in aged 18 to 34) and declined with age (13.3% in people aged 65 years and over). This finding is consistent with research from the Office for Health Improvement and Disparities which found that mental health and wellbeing particularly adversely affected younger adults during the COVID-19 pandemic.

Experiencing worse mental health was also more commonly reported in men (30.2%, compared to 18.9% in women), people who identified as trans, non-binary or in another way (52.6%), those living in the North of England (33.8%) and was less commonly reported in people of black African ethnicity (12.5%). This is different from studies in the general population which generally found women experienced a greater level of psychological distress during the pandemic, but the relationship with ethnicity is complex (3).

Over 2 in 5 people (40.6%) reported lack of social contact. This was high in all groups. Thirteen per cent (13.2%) of people living with HIV reported reduced access to support services.

Relationship or family problems were reported by 14.9% and this was higher in younger age groups, other white ethnicities and people who identify as trans, non-binary or in another way. Increased caring responsibilities was reported in 7.5% and bereavement in 14.4%.

Figure 29. Percentage of people living with HIV experiencing the impact of COVID-19 on aspects of their lives in 2022

Nearly half (49.1%) reported testing positive for COVID-19 at least once, with those in the younger age groups more likely to have tested positive. This is lower than the estimated number of people in the general population estimated to have had COVID-19 by November 2022, which was around 4 in 5 people, depending on the methodology used. This could be a real difference, possibly with some impact of shielding or a case ascertainment issue, as not everyone with COVID-19 will have been tested. Fourteen percent (14.0%) of people reported ongoing symptoms of COVID-19.

COVID-19 vaccination

Most people (95.6%) had received at least one COVID-19 vaccination and 35.3% had received 4 or more doses of COVID-19 vaccination for people living with HIV. At the time the survey was conducted most people living with HIV should have received 4 doses of COVID-19 vaccinations or be in the process of being offered the fourth. Some will have received 5 doses. People who were older (65 years and over, 51.5%) and white British (46.2%) more commonly received 4 or more doses.

Nearly twice as many men had received 4 or more doses than women (41.4% and 22.5%, respectively), and lowest levels were among people of black African ethnicity (20.7%).

According to vaccination uptake data from ONS, uptake of COVID-19 vaccination in the general population was lower in ethnic minority groups, particularly black Caribbean and black African and this has also been reflected in this data. Of those who had not received the recommended number of doses, the most common reason given was the side effects (7.5%), not wanting to have the recommended doses (8.0%), and not wanting the vaccine at all (6.0%). The latter was highest in the youngest age group (8.5%), those of other white ethnicity (9.7%), and people who identified as trans, non-binary or in another way (13.3%). Over 1 in 10 (10.8%) were planning to have all the recommended doses but had not received it at the time of the survey and 1 in 25 (4.0%) had not been offered one or more of the recommended doses.

Conclusion

The Positive Voices survey continues to provide a wealth of information about the population living with diagnosed HIV in the UK. It showcases the lives, experiences and diversity of people living with HIV, providing critical insight into their health, welfare, and social needs. It will be used to inform the HIV Action Plan and improve the lives of people living with HIV. As the population living with HIV ages, the burden and complexity of their health needs continues to rise so it is vital that services have the resilience, capacity, and flexibility to meet future demands.

The good news is that, for many people, managing their HIV condition now involves taking one pill a day, with few reporting any side effects. It is also very encouraging that HIV treatment and care service provision has continued to be highly rated and equitable.

However, there has been lack of progress in reducing the high prevalence of mental health conditions, particularly anxiety and depression, which has remained unchanged since 2017. Younger people and people who identified as trans, non-binary, or in another way are most severely affected. High levels of unmet need remain, especially for those needing long-term condition management, peer support, stress management, housing support, and dealing with loneliness and isolation. Having enough money for basic needs was variable across different groups with some reporting high levels of poverty.

Stigma remains prominent in the lives of many people living with HIV. Some people are still being verbally harassed, excluded from family activities, and many feel isolated and lonely. Whilst there has been a reduction of stigma in healthcare services, there is still much more to be done to combat it, as it confirms people’s fears of anticipated stigma and discourages people from seeking care, thereby depriving them of critical healthcare services they need. For the first time, data was collected on experience of physical violence and sexual assault, revealing high levels of both which urgently requires further exploration. In addition, more work is needed to explore the role of intersectionality; how for example ethnicity, gender, sexuality, deprivation, and HIV status overlap and their role in stigma.

People who identified as trans, non-binary or in another way experienced high level of stigma as well as unmet health and social care need. High levels of stigma have also been reported by trans people in the general population. Whilst the sample size of this group was small (65 people), more needs to be done to understand the issues experienced by trans people and their intersectionality with HIV status so that they can successfully be addressed.

The inequalities and issues raised in this report are not only important to address to improve the lives of those with HIV but also have an impact on the HIV Action Plan’s ambition to reduce HIV transmission by 2025. Stigma, anxiety and depression and the stark inequalities experienced in health and other settings not only affect health and welfare of people with HIV, but also their ability to seek healthcare, engage in treatment and retention in care. It is vital that the findings of this report are taken into consideration when addressing the Joint United Nations Programme on HIV and AIDS (UNAIDS) target of ending transmission of HIV by 2030 through crucial elements such as expanding testing and retention in care as monitored by the Monitoring and Evaluation Framework.

Acknowledgements

We are deeply indebted to all the 4618 people living with HIV who completed the Positive Voices survey 2022 and to the clinical and research staff from the 101 HIV clinics who worked to recruit participants throughout the enrolment period (please see Appendix 10 for full list of names).

Contributors; Addow A, Aghaizu A, Brown A, Chau C, Connor N, Cooper N, Delpech V, Ekajeh J, Farah A, Humphreys C, Kall M, Kelly C, Kitt H, Lampe F, Latham V, Mandal S, Martin V, MacKay N, Morgan J, Pelchen-Matthews A, Nakagawa F, Rodger A, Sewell J, Shah A, Sinka K, Smith C, Sparrowhawk A, Sullivan A.

Suggested citation

Aghaizu A, Martin V, Kelly C, Kitt H, Farah A, Latham V, Brown AE, Humphreys C. Positive Voices: The National Survey of People Living with HIV. Findings from 2022. Report summarising data from 2022 and measuring change since 2017. December 2023, UK Health Security Agency, London 

Funding

Positive Voices survey 2022 was conducted by the UK Health Security Agency and University College London and represents independent research funded by the National Institute for Health Research (Programme Grants for Applied Research, A person-centred Needs Informed Model of Care for people with HIV (NICHE), to improve wellbeing, mental health and reduce socio-economic disadvantages and stigma, NIHR202038). Funding was also received from the UK Health Security Agency and Gilead Sciences Ltd. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health and Social Care. This report was written and edited by UKHSA.

Ethical approval

This survey has been reviewed and approved by the London Harrow NHS Research Ethics Committee (Project ID 13/LO/0279).

References

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2. Remien R H, Bauman LJ, Mantell J, Tsoi B, Javier Lopez-Rios B A, Chhabra R and others. ‘Barriers and facilitators to engagement of vulnerable populations in HIV primary care in New York city Journal of Acquired Immune Deficiency Syndrome’. 2015; volume 69 issue 1: pages 16 to 24 (viewed on 22 November 2023)

3. Proto E, Quintana-Domeque C. ‘COVID-19 and mental health deterioration by ethnicity and gender in the UK’ 2020 PLoS ONE volume 16 issue 1: e0244419