What's it all about?
In 2015, we gathered vital information from people living with HIV in the UK about the stigma and discrimination they experience.
Building on the success of the 2015 survey, we've launched two new surveys to further our understanding of stigma, targeted at two key populations:
- a survey for young people aged 15–24 living in the UK to find out about their experiences of stigma throughout different settings in their lives
- a survey for people from black, asian and minority ethnic (BAME) groups who are over 18 regarding their experiences in UK healthcare settings.
Both surveys will be open until June 2017 at participating NHS clinic sites and on the UK Stigma Index website.
The work of the Stigma Index is driven BY people living with HIV, FOR people living with HIV.
The research is being carried out by FPA and Imperial College Healthcare NHS Trust in partnership with CHIVA and NAT among others.
The project is funded by MAC AIDS Fund. Data storage and analysis is supported by PHE.
Support for the 2015 survey
The full results of the study can be seen on the Stigma Index UK website.
The research was carried out by FPA, Public Health England (PHE) and the People Living With HIV Stigma Index team. The project was funded by the MAC AIDS Fund and in-kind contributions from PHE.
“This important study highlights the link between stigma and discrimination and poorer health outcomes. People who reported high levels of stigma were more likely to avoid medical care, particularly in general practice and dental care.
“It is worrying that in 2015, when most people living with HIV are on treatment and therefore extremely unlikely to transmit the virus, about half of participants in the study were worried about being rejected by their sexual partners, and many still avoid everyday social activities.”
Dr Valerie Delpech, head of national HIV surveillance at Public Health England
“An HIV diagnosis in 2015 is no longer a death sentence, but it does not come alone. From disclosing the diagnosis and managing HIV with the support of family, friends and health professionals, people living with HIV can face additional challenges.
“This study has produced an evidence base that will inform policy, commissioning and, most importantly, raise awareness.”
Natika H Halil, Chief Executive, FPA
“It’s great to see such a robust, well-analysed survey with so many responses. Given the community context of our work at LASS, the overriding notable issues of stigma and mental health are not surprising as we deal with the effects of these on individuals’ lives daily.
“It is essential we have the research that backs up how essential the work of small local charities is in raising HIV awareness, providing education in schools, work places and other settings, and support, information, advice and advocacy for and with people living with HIV.”
Jenny Hand, CEO, Leicestershire AIDS Support Services
“Stigma hinders people from living a dignified life with HIV, and discourages people from learning the facts about HIV. Stigmatising attitudes towards people living with HIV are not reported through any national attitude surveys in Scotland, therefore much of what we know comes from what communities and workers tell us. The Stigma Index fills a crucial gap of evidence and means we will be better able to track change and progress.”
“For Scotland, treatment, care and prevention for HIV are fully devolved but the Stigma Index demonstrates that regardless of where you live, stigma can cause serious barriers to health and wellbeing. Anti-discrimination laws, such as the Equality Act and Human Rights Act, protect people from discrimination within employment and health and social care services. However, these types of legislation can only go so far, and we need action to educate and change deeply entrenched attitudes.”
George Valiotis, CEO, HIV Scotland
“Stigma increases the number of people getting HIV; it stops people from testing, from disclosing, from talking about HIV. Moreover, it is a blight on the lives of people living with HIV, and this should make us all angry.
“The Stigma Index shows the real experiences of people living with HIV and it confirms that stigma still has a huge impact in the UK today. One in five people living with HIV has experienced verbal harassment or threats; this is absolutely unacceptable and we all have a role in challenging such blatant discrimination.
“No one should have to feel fear because of their HIV status. We need a coordinated strategy to eliminate stigma, for the well-being of those living with HIV and to turn around the epidemic.”
Deborah Gold, Chief Executive, National AIDS Trust
“The numbers make for stark reading. That 61% of people living in Northern Ireland with what is essentially a long term condition feel shame is totally unacceptable.
“We need to come together, educate, harness the good will that we’ve nurtured, and as a community move on from the negative attitudes of the 1980s.”
Jacquie Richardson, CEO, HIV support charity Positive Life NI
“HIV and AIDS can affect anyone and does not recognise boundaries or societal barriers.
"We all need to work together to remove any remaining stigma and support those living with HIV and AIDS."
Maeve McLaughlin, Sinn Féin MLA and Chair of the NI Assembly's Health Committee
For background information about the worldwide project visit the People Living With HIV Stigma Index website.