Positively UK is a national charity, based in London, run for and by people living with HIV. It traces its roots back to 1987, when two women living with HIV founded Positively Women, the first service for women living with HIV in the UK. They started small, putting hand-drawn posters in clinics and inviting women to meet in their home.

The organisation has grown and evolved in the intervening years. It recently began a four-year capacity building programme called Project 100, which aims to ensure that 100% of people living with HIV in the UK have access to peer support. The project plans to train and support 1000 people living with HIV across the UK as peer mentors.

Positively UK was one of five partner sites in the Realising the Value programme, contributing experience and learning on peer support in health and wellbeing.

Allan Anderson, Chief Executive Officer at Positively UK, says, ‘We think Realising the Value is an important piece of work for us to be involved in. There is so little hard evidence out there for why things like peer support are essential in supporting people to manage their health. We have been able to contribute our back catalogue of evaluations, and data we’ve collected over the years.’

Sharing the reality of living with HIV

In the UK, with universal access to high-quality clinical care and treatment, the outcomes for people diagnosed with HIV are exceptionally good. Properly managed, HIV is a long-term condition requiring daily treatment, but one which should have minimal impact on quality of life. People living with HIV who are taking effective treatment can reasonably expect to live just as long as their HIV-negative peers, to feel well, to work, to have relationships and to have families. Research in recent years has shown that HIV treatment, when taken as prescribed, suppresses the virus to such a low level that it is not passed on, even during sex without condoms.

But the perception of HIV among the general public has not kept pace with this reality. For many, HIV is thought of as something to be feared, a death sentence or a moral judgement.

Allan says, ‘Often the only idea someone has of HIV is what they’ve read in the media, what they’ve heard from word of mouth and quite often they have the wrong idea about HIV. Meeting a peer supporter may be the first time that someone with HIV has ever come into contact with another person living with HIV. Part of the role of a peer supporter is to present that reality of what it means to be living with HIV.’

Peer supporters at Positively UK go through a robust selection and training process – including the option to complete an NVQ Level 2 in Mentoring – with learning around HIV, mentoring, boundaries and listening skills. One-to-one peer support sessions can involve a detailed assessment of what issues are most important to the person seeking support, allowing them to explore what they want to prioritise.

Drawing on multiple approaches

Allan says, ‘Peer support isn’t just about talking about yourself, it’s about understanding what the other person needs in terms of support.’

The Realising the Value programme examined five person- and community-based areas: peer support, health coaching, self-management education, group activities and asset-based approaches. Although each of the five sites was focused on one approach, in practice there is overlap between the approaches. Positively UK is a peer support organisation, but it also offers group support and has a self-management approach.

Each approach has different strengths and peer support or peer-led activities are often particularly important when exploring non-clinical issues. This is perhaps particularly true of long-term conditions in which stigma plays a part, such as HIV or mental health problems, but there are practical and social aspects to many other health issues. Talking to someone who has lived experience of a condition can support self-management in a way that hearing from a trainer or clinician may not.

Allan says, ‘These are people who are living with it day to day, who really understand how it feels when, on Sunday night, you’re putting your pills in your pill box and experiencing that stark reminder. They go through that as well, they can talk about it, they have that mutual understanding. It’s a hugely powerful model and motivator.’ 

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