A Bake Off star and social care worker said he was shocked to learn that nearly half of people living with HIV have experienced discrimination in social care.
Janusz Domagała, who lives in Brighton, is a care worker at Hanover Care.
He has been part of a campaign with the UK’s leading HIV charity Terrence Higgins Trust to train people working in the care sector about caring for people living with HIV.
The care worker, who was on the 13th series of the Great British Bake Off, told The Argus he found the figures “mind-blowing”.
Data from a new survey by the Terrence Higgins Trust has revealed that 44 per cent of people living with HIV who are accessing social care have faced HIV-related stigma and discrimination – with over three quarters, 76 per cent, reporting they are anxious about having to access it when they need it.
This is despite the fact there has never been a case of HIV transmission in a social care setting.
Asked why the number of people who have faced discrimination about their HIV status in care is so high, Janusz said: “It is definitely a lack of knowledge. People are still scared they are going to contract the virus.
“I think because now people who are living with HIV are becoming older so this is a new situation to many carers.
“They aren’t used to seeing notes which would say people are HIV positive. So they don’t know how to approach the situation.”
Thanks to progress in 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.
But about two-thirds of people living with HIV, 67 per cent, are worried about having to share their HIV status with a social care provider due to concerns about it being shared widely.
Janusz said: “I was shocked that so many people are experiencing discrimination still. I was not expecting it to be such a high number.
“In my head I was thinking it happens once to someone, maybe to one per cent of people or even less. It is actually mind-blowing.”
Janusz is raising awareness about the new training website by the Terrence Higgins Trust available to care staff.
He said: “The training website will be there forever and it can be sent to carers and agencies.
“The most important thing is to remember with HIV is that undetectable is untransmissible. If someone is on effective treatment you are not going to contract the virus.
“People are living long lives with HIV, now the virus changes nothing.
“Carers need to be using the same methods, the same techniques and the same compassion.”
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 bounds, 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, 50, 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 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.”
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