A new survey shows 44% of people living with HIV who are accessing social care have faced HIV-related stigma and discrimination – with over three quarters (76%) reporting they are anxious about having to access it when they need it.

Worryingly, over half of people (67%) are worried about having to share their HIV status with a social care provider due to concerns about it being shared widely. Fears around discrimination present a significant challenge to the adult social care sector – with just 6% of people living with HIV saying they are confident that the social care setting would be able to safeguard them against stigma if their HIV status became known against their wishes.

The polling of people living with HIV has been released by Terrence Higgins Trust, the UK’s leading HIV charity alongside a new HIV training for social care professionals. The training includes information on the facts about HIV including treatment, working safely and how to care for people living with HIV.

As well as exposing alarming levels of discrimination towards those who already access social care, the data reveals a generation of people living with HIV who are extremely concerned about ageing with HIV and being in social care. On top of these fears, over three quarters (78%) of people living with HIV haven’t made financial plans to fund social care, and almost one quarter (24%) don’t have a pension. Many people diagnosed with HIV before treatment cashed in their pensions because they thought they would never see it.

Thanks to incredible progress around treatment, people with HIV are living longer than ever before and those on effective HIV treatment can’t pass it on. Over half of people living with HIV in the UK are now over 50, which means they’re more likely to be reliant on social care. There has never been a case of HIV transmission occurring in a social care setting.  HIV is only passed on by certain bodily fluids, and not by providing or receiving personal care. For tasks that require gloves, there is no need to wear an additional pair, or ‘double gloving’. People with HIV should not be treated differently to other people receiving care; if they are this would be a case of discrimination.

Janusz Domagała, Great British Bake Off contestant and social care worker, said: “It’s worryingly to see that so many people living with HIV have experienced stigma and discrimination while accessing social care. Everyone deserves to be cared for with respect and dignity, which is why I’m proud to have worked with Terrence Higgins Trust on their new HIV training for social care professionals. It’s essential that the social care industry has the correct information about HIV so they can deliver excellent care, and to alleviate anxieties that people living with HIV have around accessing care. Studies have shown that a person who's on effective treatment can't pass on HIV. You do not need to care for people living with HIV any differently than those with other long-term conditions.”

Rebecca Mbewe, who is living with HIV, said: “It’s fantastic that Terrence Higgins Trust has created this new training for social care professionals to help them provide excellent care to people living with HIV.I was diagnosed with HIV in 1996 and told I would live for a really short time. I never imagined that 27 years later I’d still be around. While HIV treatment has come on leaps and bound, stigma still has a devastating impact on our lives. If I needed social care in the future, I would be concerned about being discriminated against. The thought of a care worker coming into my home, seeing my HIV medication and treating me differently really worries me. People living with HIV should get the same care as anyone else.”

Ian Makison, who is living with HIV, said: “When I was diagnosed with HIV in 1993, I cancelled my pension because I thought I would never get to see it. That’s how things were back then, HIV was a literal death sentence. I couldn’t envisage a future but today I have a loving partner who is HIV negative. Thanks to the incredible progress we’ve made around treatment, l live a healthy life and can’t pass it on to him. I recently turned 50 and going through life assuming I’m never going to get to an old age has had a massive impact in later years. I worry about my future and whether social care will be conscious to people who are ageing with HIV and adapt to our needs. It's reassuring to know that Terrence Higgins Trust has created a new HIV training to help ensure people living with HIV access the support and care they need without fear.”