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“Sadly, many of the HIV positive people we support report mental distress or mental illnesses. In some cases this is the primary reason for support, and for others it is a secondary impact of coping with stigma or HIV”
Involving and supporting service users ) This World AIDS Day, together we can
remember those we’ve lost and how far we’ve come since the early days of the epidemic. Together we can join in solidarity with people living with HIV today, and transform the future for everyone by ending HIV transmissions. Every week 80 people in the UK receive a life-changing HIV diagnosis and many people living with HIV continue to experience poor mental health, stigma and discrimination. Despite medical advancements which mean that people living with HIV who are on effective treatment can’t pass it on and can expect to live just as long as anyone else, stigma and misconceptions about the virus continue to halt progress and impact many people living with HIV. It has been over 1,000 days since the UK government committed to ending new cases of HIV by 2030 – an ambition that can only be made a reality by expanding HIV testing, increasing funding for HIV prevention, and establishing new national programmes and campaigns. Crucially, we must also strengthen support for people living with HIV to thrive, and end the stigma they face. People living with HIV are twice as likely to experience poor mental health – HIV-related stigma is a huge factor in that. Brighton & Hove can be a leading example to the rest of England in efforts to meet the national target of ending new cases of HIV by 2030. The inspiring work taking place in Brighton & Hove demonstrates the benefits of a person-centred approach to HIV services. In 2017, Brighton became the first city in the UK to join the Fast-Track Cities initiative, a group of cities from across the world that has pledged to work towards zero new HIV infections. The city has earned its reputation of being a world leader in HIV prevention and treatment by exceeding the initiative’s target of 90-90-
90. Ninety-three per cent of people living with HIV know their status, 99% of those are on treatment and 98% of those on treatment are undetectable, which means levels of virus in the blood are so low that they can’t pass it on.
The work in Brighton & Hove is shaping the overall approach to involvement – this is appropriate given the significant history of the charity in Brighton. The UK-wide Positive Voices programme, where people living with HIV share their stories to challenge stigma and discrimination, started in Brighton. It now has 28 speakers delivering over 130 talks a year – and as of this year is entirely community-led by HIV+ people.
Terrence Higgins Trust’s (THT) Brighton & Hove service has actively embraced new ways of working by listening to what people are saying and then responding to their voices with action. Why? To better respond to needs in rapidly changing contexts and to create opportunities for people to share their skills and experiences to design services that better meet people’s HIV and sexual health needs. Marc Tweed, centre manager for THT Brighton & Hove, says: “Our involvement work recognises that everyone has something to give, and that people are passionate about helping to shape the future of the charity. Brighton & Hove services have always been very receptive to involving people. “As we reach World AIDS Day 2021, over 250 people have given over 2,000 hours of their time to shape how the charity works and what it does. Much of this work has happened in Brighton & Hove. We went back to basics really, bringing service users in early, rather than designing a service and then going out and trying to get people to validate it.” Over recent months the charity has been asking people living with HIV what matters to them as they grow older to help us refresh local and national services for people aged 50+ and living with HIV. Over 50 local people took part in our interviews, focus groups and survey, which will inform our strategy for supporting people to live well with HIV as they age. Sadly, many of the HIV positive people we support report mental distress or mental illnesses. In some cases this is the primary reason for support, and for others it is a secondary impact of coping with stigma or HIV.
Florence Obadeyi has been sharing her story through Positive Voices for over three years. She has spoken in schools, colleges and workplaces and to NHS audiences. “For me, the biggest value of Positive Voices is the ability to talk to young people about HIV. Positive Voices uses unique opportunities to share people’s personal stories and experiences of HIV to break HIV stigma and promote healthy sex education. “By talking to young people from these communities, they then go home and share the message with their parents, who go on to share it with their peers in their community. It helps to stop stigma now, but it also means we are stopping a generation from experiencing HIV stigma in the future.” D To find out more about THT Brighton &Hove, visit: www.tht.org.uk/centres-andservices/brighton-and-hove.
