How an innovative educational programme is challenging HIV stigma

Around 105,000 people are living with HIV in the UK, and thanks to ground-breaking medical advancements, they can live long and healthy lives. When someone is on effective treatment, usually just one pill a day, their virus becomes undetectable, and it has been scientifically proven that they cannot pass the virus on. Unfortunately, most people are not aware of this incredible medical advancement, and people living with HIV still face discrimination. This can extend to all areas of someone's life; their relationships, their work life and their social circumstances. It can have a devastating impact on someone's mental health. 

One of the best ways to reduce stigma is through education and a new pilot programme, HIV Confident, is leading the way in educating organisations and employees about what it's like to live with HIV and how they can support people with HIV who use their services or work alongside them.

To learn more about HIV Confident, we spoke to Dr Kate Reilly, HIV clinical psychologist at Newcastle Hospitals Trust. As well as being a committee member on the BPS Faculty for HIV and Sexual Health, Kate has led the rollout of HIV Confident in Newcastle Hospitals and is a proud advocate for the programme's work to help reduce HIV stigma.

Can you tell us about your day-to-day role?

I'm one of four psychologists in the HIV team at Newcastle Hospitals. I have a caseload of people living with HIV who are struggling with their mental health for one reason or another. That might be an adjustment to their diagnosis, difficulty with taking their treatment or something else that's affecting their wellbeing, such as a bereavement or a childhood trauma.

The biggest problem for people living well with HIV is the stigma that comes with it and other people's attitudes and ignorance. We're often supporting people coming from different parts of the world or from certain communities where stigma is really rife. They feel that they don't have the same relationship, education and employment opportunities because they're living with HIV.

Where did the idea for HIV Confident come from?

The Government's HIV action plan has ambitious targets to eliminate new HIV transmissions by 2030. Each part of the UK has had to say how they're going to try and meet that target, and one action point was that we need to train up healthcare staff. 

It's so well documented that healthcare stigma is a problem. This stigma can be a barrier for people who are already vulnerable when they need to access care, maintain their treatment and take their medication.  We want people living with HIV to feel safe in the knowledge that they will have excellent, informed, non-stigmatising care in all parts of the healthcare system to increase the likelihood they can stay in treatment and stay well.

HIV Confident was set up to meet this need. It is a collaboration between Fast Track Cities, National AIDS Trust, Positively UK and aidsmap; four different organisations that are all focused on supporting people with HIV and challenging stigma. 

What does HIV Confident aim to do?

The HIV Confident pilot does four things. We survey staff to understand what people's attitudes and knowledge of HIV are and how that affects their behaviour.

Then there's an e-learning module, which is powered by the voices of people living with HIV, telling their stories and explaining what HIV is in 2024 and how best they can be supported. That's a really powerful tool. 

There's also a stigma reporting mechanism, where anyone who receives or witnesses HIV stigma can report anonymously. Organisations then know where there might be problems so that they can target training and make sure that those problems are dealt with. 

The final thing is a review of policy, to make sure that all the policies in an organisation; the clinical, the occupational and recruitment policies, are where they should be in terms of HIV in 2024

It's a really robust package that aims to upskill an organisation so that when they've done those four things, they can say 'we're HIV Confident'. You can tell that to potential employees and people who want to use your services. I think it's an absolutely brilliant thing. We're (Newcastle Hospitals) part of the pilot and it's been fantastic to see how it has brought HIV back into conversations. 

How do you imagine the future scale of the programme? 

I would love to see the HIV Confident e-learning module mandatory for all NHS staff. We're working towards that, and it feels like a really important thing to be involved in. As a psychologist, it's thinking about how we can change experiences of stigma so that it's experienced less, rather than just handling the consequences of stigma for people. 

What would be your ideal outcome for the project in a year's time?

I would be delighted if, in a year's time, we had mandatory HIV training for all NHS professionals. Even more ideally, it would have a little addendum from local people living with HIV, so people are really getting that sense of, 'these are the people that I'm working with, my colleagues, part of my community'. I would love NHS staff to feel empowered to call out HIV stigma where they see it so we can change the narrative around HIV.

I'd love to see and hear people talking positively about HIV. About how amazing it is that people on effective treatment can live well, have children without HIV, not pass the virus on to partners and work in every career available. I'd love to see people start to shed assumptions that HIV only affects certain groups of people. It could start to affect community attitudes so that people wouldn't feel as nervous to tell friends, partners and employers about living with HIV. We've a long way to go, but I feel that something like this could really make a difference.