Today, Waverley Care has launched a new report, The Future of HIV in Scotland: The priorities of people living with HIV for Scotland’s next HIV plan.
Scotland has made significant progress on HIV. Effective treatment means people living with HIV can live long and healthy lives, and Scotland is working towards ending new HIV transmissions by 2030.
But ending HIV transmission is only one part of the picture. We also need to make sure that people already living with HIV can live well, get the care and support they need, and live free from stigma and discrimination.
Our new report looks at what needs to change, based on the experiences and priorities of people living with HIV.
What did people tell us?
Between March and June 2026, we asked people living with HIV about their experiences of diagnosis, treatment, healthcare and support. We heard from 57 people through an online survey, one-to-one interviews and a community event.
Many people spoke very positively about the specialist HIV care they receive, particularly the support they get from HIV doctors and nurses.
But people also told us that living well with HIV is about much more than taking effective treatment.
They want better support for their mental health and wellbeing, more consistent access to peer support, healthcare services that work better together, and more choice and flexibility in how they receive their HIV care.
And one issue came up consistently: HIV stigma.
We still need to tackle HIV stigma
HIV treatment has changed enormously, but stigma and misinformation continue to affect people’s lives.
People told us about experiencing stigma and a lack of understanding about HIV in healthcare, at work and in wider society.
This can have an impact on people’s mental health and wellbeing, confidence, relationships and experiences of healthcare.
We need continued action to improve public understanding of HIV and challenge outdated attitudes. We also need to make sure that people working across health and social care have accurate and up-to-date knowledge about HIV.
Healthcare needs to work better together
People were generally very positive about their specialist HIV care. But their experiences of other parts of the healthcare system were more mixed.
Some people told us about having to explain their HIV status and medical history repeatedly. Others experienced poor communication between different services or felt unsure about who was responsible for different parts of their care.
People living with HIV should be able to expect good-quality, informed care wherever they access healthcare.
That means improving communication between HIV clinics, GPs and other health services, and making sure healthcare professionals can get specialist HIV advice when they need it.
Support should work for the individual
Everyone’s experience of living with HIV is different, and the support people need can change throughout their lives.
People told us about the importance of having access to support when they need it – particularly following an HIV diagnosis.
This includes clear and accessible information, mental health and psychological support, and the opportunity to speak to other people with lived experience of HIV through peer support.
People also want more choice and flexibility in how they receive their HIV care. Rather than expecting everyone to fit into the same system, services should work around people’s individual needs and circumstances wherever possible.
Supporting people to age well with HIV
More people are now living into older age with HIV. People told us about concerns around managing HIV alongside other health conditions, accessing health and social care where staff understand HIV, and getting the right support as they grow older.
Scotland needs to prepare for these changing priorities. This includes making sure health and social care staff understand HIV, improving services and investing in research into what it means to age with HIV.
People living with HIV must be part of the decisions
One message ran through everything we heard: people living with HIV need to be involved in the decisions that affect them.
That means involving people from the beginning when policies and services are being developed – and continuing to involve them as those policies and services are put into practice.
People living with HIV know better than anyone what works, what doesn’t and where things need to change.
What are we calling for?
Our report makes a series of recommendations to the Scottish Government and national and local NHS organisations.
We are calling for action to:
- Tackle HIV stigma and discrimination, and make sure health and social care staff have up-to-date knowledge about HIV
- Give people more choice and flexibility in their HIV care and support people who are no longer attending HIV care to reconnect with services
- Improve communication between HIV clinics, GPs and other healthcare services
- Improve access to peer and mental health support
- Ensure people have the support they need as they age with HIV
- Involve people living with HIV in decisions about policies and services and keep HIV a national priority beyond 2030
Looking to the future
Scotland is working towards an important goal to end new HIV transmissions by 2030. But success must also mean that people who are living with HIV have the support they need to live long and healthy lives, free from stigma and discrimination.
As the Scottish Government develops its next plans for HIV, we have an opportunity to build on the progress already made and make sure Scotland’s future HIV response reflects what people living with HIV say they need.
And people living with HIV must be at the heart of that work.
Read our full report, The Future of HIV in Scotland: The priorities of people living with HIV for Scotland’s next HIV plan.
We want to thank everyone involved in this project, with particular thanks to all those who shared their experiences and views to shape the report including our Community Panel.