"So much research is done on us, this time it was a true collaboration" - Changing Perceptions reports
In February 2017 as I was doing a regular check-up at my HIV Clinic I was asked if I wanted to fill in the Positive Voices questionnaire, produced by Public Health England (PHE). It was quite a bulky booklet; it looked time consuming. But I was offered also a high street voucher for £5, and I had some time to spare as I was waiting for my meds, so I filled it up while sitting in front of the pharmacy.
There were many questions on all aspects of my life: from my experience of the HIV clinic and other healthcare services in general, to more personal stuff, such as other health conditions I may live with, mental health, loneliness, violence, alcohol and drug use, experiences of stigma and discrimination, finances and more. I always find those kinds of questionnaires hard to deal with, especially if you are feeling fragile (and most of us do feel fragile on a dark February morning, during a hospital visit, even if it is a routine check-up). Recalling negative experiences can be quite triggering, and many of us living with HIV have experienced trauma in our lives. Post-Traumatic Stress Disorder is not uncommon. However, I knew it was important that the life experiences of people living with HIV are heard, and that there is much more to having a good quality of life than just an undetectable viral load and good CD4 Count. I diligently answered all questions, and rewarded myself with a lovely hand cream from Boots with my voucher.
Over 4,400 people with HIV from England and Wales did the same, and answered the questionnaire in more than 70 clinics. Respondents came from all walks of life and provided a good representation of the diverse groups affected by HIV (MSM, BAME, women, trans people etc.) Through our answers we helped creating a very accurate snapshot of what living with HIV is like in England and Wales today.
I am aware that even without doing much I have always been the ‘object’ of research, and so have all the other over 106,000 people who share their lives with HIV in the UK. For example, our data, anonymised, is included by our clinics when they report every year how many people have been diagnosed, how many are on treatment and how many have an undetectable viral load. This information is included in the national yearly report by PHE released every year around World AIDS Day.
So much research is done on us, as people with HIV, but it is still very rare that we are directly involved in analysing it and actively sharing ownership with the researchers. Positive Voices has been different. The leading researchers behind the survey, Valerie Delpeche and Meaghan Kall, got in touch with Positively UK at the end of 2017 to see how we, as the UK leading peer support organisation by and for people with HIV, could facilitate the process of community ownership and interpretation of the data.
Through PHE, we got in touch with people who had answered the survey and who had said that they wanted to get involved. These respondents were invited to events co-facilitated by Positively UK’s Peer Mentors, who are people with HIV trained in mentoring and group facilitation. These stakeholder’s events included input from other organisations: Watipa, which provided expertise in linking our stories and lived experiences to the data, and the National AIDS Trust who worked with us focusing on what needs to change, finalising policy recommendations and writing the three reports. It was a truly collaborative effort with people living with HIV at its centre.
Having worked in HIV peer support for almost 20 year what surprised me was that most of the respondents who came to the stakeholder’s events were not our ‘usual’ service users. Many of them had never used support services before, or spoken to someone else living with HIV. Many were compelled to come forward because they wanted to ensure that their lives and experiences mattered, and that they could be part of making things better for everyone. There was a clear intention from all of us that we did not wish to be solely ‘objects of research’. Behind the numbers from the survey are our lives, and we are best placed to make sense of them. We are reclaiming our agency, overcoming any notions of victimhood, despite the challenges many of us continue to face.
Overall Positive Voices paints a nuanced picture of our lives, from a medical point of view, especially as far as HIV is concerned, we are doing well and we appreciate the excellent HIV care the NHS is providing for us. However, many of us are struggling: 1 in 10 said that they had not told anyone about their HIV status other than healthcare professionals, 14% of respondents experienced discrimination in the NHS in the past 12 months. Mental health problems are reported by half of people living with HIV, twice the rate of the general public. Peer support is recognised as vital for tackling isolation and maintaining wellbeing, yet it remains underfunded and often unavailable to those of us in rural areas, where staggering levels of loneliness were reported.
What became clear, as we listened to each other’s stories and looked at how they illuminated the data that came from Positive Voices, is that the biggest challenges we face are rooted in negative attitudes and misconceptions around HIV. HIV is no longer a death sentence: with access to treatment, care and support we can live healthy and productive lives. Moreover, when we are on treatment and the virus is undetectable there is zero risk of sexual transmission to our partners.
We have taken the first steps of producing a Changing Perceptions campaign because we want to transform how people feel and think about HIV. We know that there is lot more to do and we hope that we will continue this work. We have plans to produce some short films based on our stories, to educate our peers, to inform policy makers, and to inform and challenge those who still discriminate against us in the NHS, and in the general public.
Another important lesson I gained from this process is how healing and therapeutic collective peer engagement can be. As we examined, compared and reflected on our stories, as we offered each other support and gained insight in our own lives, the most inner layers of stigma, self-stigma, our negative perceptions about ourselves and our own value, started to finally dissolve. For example, a person came to the first event not having told any of their friends about having HIV, having been diagnosed for 3 years. By the end of the project not only they had talked and received support from close friends and family, they have moved on to speak at a parliamentary event and challenged policy makers to do more to address the high rates of late HIV diagnosis.
Storytelling is such an important human activity and it has been used since the most ancient times to develop learning, create insight in the diversity of human experiences, and ultimately generate compassion and reciprocal understanding. Let’s hope that we will continue to create opportunities for our stories to be heard.
I would like to acknowledge and thank every single person who responded to the survey, and especially those who shared their stories, either through the comment section in the survey, or from participating to the creation of Changing Perceptions reports. I would like to thank all the people living with HIV and peer mentors who came forward and wanted to be photographed. I would like to leave you with Gabriel’s words, one of Positively UK’s peer mentors who supported the reports:
“For me it was important to give a face and individual voice to what people usually see as only the virus. I hope the project will make people understand that there is a lot of work to be done to eradicate discrimination and address the fears and hurdles that we need to overcome once diagnosed with HIV. The cuts that I have seen across the clinics and charities that made it possible for me to carry on a dignified life, are now limiting access to vital support. I hope ‘Changing Perceptions’ will address all the issues that we are still facing”
A special thanks to Viiv and Gilead for supporting Changing Perceptions
Silvia Petretti is a woman living with HIV and joint CEO at Positively UK. She has worked for over 18 years with people with HIV using peer support interventions to develop skills, confidence and opportunities to influence decision making, and to change attitudes towards HIV, so that everyone living with HIV is treated with dignity and respect. Silvia has an M.Sc. in Development and a background in film making and social anthropology.