From November 2022, Ayo experienced neuropathic pains throughout his body and numbness in his face. The pain was heightened in his legs, which meant he felt unsteady on his feet. He was off work, unable to perform his job and his plans to go to university were put on hold. Despite multiple visits to his GP, no one could pinpoint what was wrong. Ayo said: “I gradually got worse. At this point, it never occurred to me I might have HIV; I wasn’t tested for it, so it never entered my head.”

Ayo’s condition deteriorated further, he lost 20kg, just over 3 stones in weight and the neuropathic pain continued. Eventually, he was rushed to Manchester Royal Infirmary Emergency Department where he was in and out of consciousness with a 39.2 temperature and an abscess on his neck, which needed draining. It was there that Ayo was tested for HIV as part of NHS England’s Blood Borne Virus Opt-Out Testing programme for A&Es. “If I wasn’t in hospital, I wouldn’t have been tested for HIV” he recalls. The test result came back positive.

The initial shock of the diagnosis

Like many others, Ayo was shaken by the news. “It wasn’t something I thought would affect me in my fifties, but in the blink of an eye, everything changed.” Ayo’s mind quickly turned to his family, particularly the concern that his wife may have also contracted the virus. Thankfully, after 2 tests, his wife was confirmed to be HIV negative. “The relief was overwhelming, but the emotional toll remained.”

The importance of testing and early diagnosis

For Ayo, coming to terms with his diagnosis has been an ongoing process. He’s unable to work or resume his studies. As Ayo’s diagnosis came relatively late, his HIV was advanced and affected his ability to walk, speak and write. Ayo’s treatment consisted of antiretroviral medication which stopped the virus replicating and his secondary conditions which included parasitic disease, toxoplasmosis and the neuropathic pain were treated. With these interventions, alongside emotional support provided by the George House Trust, Ayo started to feel better and is regaining a sense of self-motivation.

“Now I know my status, I can protect my wife and stay well for my family”. Despite the challenges, he is hopeful for the future and determined to return to his career and education once his health allows.

Ayo reflects on missed opportunities to diagnose his condition earlier to limit the damage of the virus.

“My GP never tested me for HIV, even though I had multiple visits. HIV wasn’t something that came to mind, and it wasn’t on the radar for the healthcare professionals either.

Ben, Ayo’s Peer Support Worker, who has also shared his testimony about living with HIV and supporting others, said: “This is not an isolated experience; many individuals who are at risk of HIV don’t get tested early and this delay can have serious health implications”.

HIV stigma and access to care

“Even though I’m getting better, I know stigma is still a huge issue. People don’t want to talk about HIV and that makes it harder for others to come forward or even consider getting tested” Ayo explains.

Ben adds: “To reduce the spread of HIV and provide better care, we must increase awareness and encourage open discussions about HIV and testing. Healthcare providers need to ensure HIV testing becomes a standard part of medical care, especially for individuals presenting with unexplained symptoms.”

Read Ben’s testimonial about his role in supporting others as a peer support worker.

For more information on HIV testing services, visit the nhs.uk website.

Publication reference: BL00014