The decision to name our charity after Terry Higgins was to help humanise HIV – a virus that even in 2019 is often misunderstood and stigmatised. Embedding people’s real life experiences in everything we do is important to us as we work towards ending new transmissions and ending stigma. 

But we want to take this one step further. 

Our three-year programme Amplifying our User Voice, funded by the National Lottery Community Fund, will help us better understand what people who interact with our charity want from us.

Working together with our service users and other beneficiaries of the charity, we’re busy identifying opportunities to grow involvement and understand how people would like to shape services and projects.

For some people, this is about looking at how we take existing projects to the next level. For others, it’s about trying something new.

Across the charity, we work with people affected by HIV and poor sexual health to ensure they are supported and can live well. 

Mary, who is living with HIV, got involved with us as a Positive Voices speaker, sharing her lived experience of HIV to challenge stigma and discrimination by giving talks and workshops in schools, universities and businesses across South East England. 

In the last month, Mary has given her time and experiences in the design of a new project, and recently joined an interview panel to support the recruitment of new staff: 'It was a new adventure for me and a way to try something new. I’ve been able to get involved in the way that suits me best and it’s been enjoyable – I’d say grab it with both hands.'

An intensive period of research over the summer months has supported us to better understand how people would like to give their time and share their skills with the charity, and how involved people want to be in shaping our work. 

Over 600 people have shared their views through surveys, in-depth interviews and workshops and we’ve started to grow a network of organisations who are invested in user involvement. We’re at the start of our journey – here are just a few ways that you can get involved:

Share your experiences of service provision, by completing this 20-minute survey.

It’s an exciting time for us. We now have the real opportunity to see an end to new HIV transmissions and to ensure everyone living with HIV can not just live well but can thrive. Your experiences can help take us one step towards making this a reality. 

Tell us how you’d like to get involved in our work.

Learn about becoming a Positive Voices speaker to use your experience of living well with HIV to challenge stigma and discrimination. Contact [email protected].

Amplifying our User Voice is funded by the National Lottery Community Fund, which celebrates its 25th anniversary this year.