HIV Informed: turning lived experience into stigma-free care across Scotland

Emma McAnally from Waverley Care reflects on turning personal experience of HIV stigma into an opportunity to educate Scotland's workforce.

HIV treatment has transformed. Today, people living with HIV who are on effective treatment can live long, full lives. When treatment reduces the level of HIV in the blood to an undetectable level, HIV cannot be passed on through sex – known as Undetectable = Untransmittable (U=U). The risk of transmission in other settings, including through needlestick injuries and during pregnancy and breastfeeding, is also extremely low.

Yet knowledge and attitudes within health and social care have not always kept pace with these medical advances. HIV Informed was developed to help change this.

Led by HIV charity Waverley Care, HIV Informed is a free online learning hub for health and social care staff across Scotland. Developed in partnership with NHS Scotland and people living with HIV, the programme aims to increase knowledge, challenge misconceptions and give professionals the confidence to provide inclusive, compassionate and stigma-free care to people living with HIV.

That gap between clinical progress and everyday understanding is where HIV Informed has an important role to play.

For me, this work is deeply personal as well as professional. I work for Waverley Care as Senior Learning and Engagement Officer, supporting organisations across health and social care to engage with HIV Informed. I bring both professional and lived experience to this role: I have a background in nursing, and I am also a woman living with HIV.

While studying to become a nurse, I experienced HIV stigma within my own education institution. I was training alongside people preparing to care for others, yet I was also hearing misconceptions about a condition I was personally living with.

Experiences like this are one of the many reasons HIV Informed matters so much to me. Education is not simply about ensuring professionals know the correct facts. The knowledge, language and attitudes of health and social care workers can directly influence whether someone living with HIV feels safe, respected and able to be open about their status.

At the heart of HIV Informed is partnership working. People living with HIV may need support from GPs, hospital services, social care, mental health services, maternity care, dentistry and many other services throughout their lives. Specialist HIV services have considerable expertise, but people living with HIV need to feel safe and understood wherever they access care, not only within specialist settings.

This is why lived experience is central to the programme. Outdated assumptions, inappropriate language or unnecessary precautions can leave people feeling judged or different. Stigma can also create barriers to testing, prevention and treatment.

Bringing lived experience together with professional and clinical expertise helps professionals to understand what their knowledge, language and actions can mean for the person in front of them.

Relationships are crucial to achieving that change. Through connections with NHS services, Health and Social Care Partnerships, universities and other organisations, we can take learning beyond the online platform and encourage organisations to consider how HIV knowledge and stigma affect their own practice.

There are challenges. Professionals are working within services under considerable pressure and HIV can still be seen as a specialist issue, so education must be accessible, practical and clearly connected to everyday work.

We have also learned the importance of creating space for honest conversations, as meaningful change is more likely when people feel able to ask questions, reflect on their practice and leave empowered to do things differently.

Our ambition is for HIV Informed to be embedded across health and social care in Scotland: in frontline services, organisational learning and the education of future professionals. That means HIV knowledge and stigma-free practice becoming part of everyday care, not an optional extra or a specialist concern.

Having experienced HIV stigma many times in my own life, I can now turn those experiences into something that can help educate the workforce of the future and improve the experiences of other people living with HIV. Ultimately, being HIV informed is about more than understanding a health condition. It is about ensuring that, wherever someone living with HIV encounters health or social care, they are met with knowledge rather than fear, compassion rather than judgement, and care that reflects the realities of living with HIV today.