The research published by the University of Sunderland, found that there were “shocking failures” around HIV testing, diagnoses and confidentiality in the North East of England. Many of the people interviewed “felt their patient confidentiality had been compromised.”
The research, titled Silent Scream, exposes disappointing experiences with GPs in the North East and hopes to raise awareness of the stigma that still surrounds HIV.
One person who took part in the study called Jonny, suffered serious effects of HIV because he was misdiagnosed by his GP. He said: “I came back from Thailand, I was doing a building job for a friend of mine, and I was having problems, you know, I had a sore on my foot, my knees were hurting me, swelling up, and my skin was giving me problems. I was having problems with psoriasis, which I’d never had in my life.
“I’d gone to see my doctor and my doctor had said, ‘oh it’s just an infection’, you know, blah, blah, blah. Within a matter of months, I’d gone from 12 stone down to nine stone, I looked like a HIV patient, and even people that didn’t know my status were questioning it.”
As well as recommending that HIV care include mental health support, to tackle depression and social exclusion, Silent Scream also highlights the lack of education on HIV in schools and colleges.
While reporting on the research, Channel 4 News spoke to James, who was diagnosed HIV positive when he was 18. He explained that he left school completely uneducated about HIV and how it was transmitted: “My first reaction was: ‘What is this HIV? I don’t really know anything about it’.”
He went on to explain: “I remember being at school and all we were ever taught about was heterosexual relationships. A man and woman trying to make a baby, or preventing making a baby. That’s pretty much all I can remember. When I’ve spoken to other HIV positive people, they’ve had similar experiences, and it seems that sex education is really poor in a lot of schools.
“If I was more aware of the risks, as a gay man, I probably would have taken more precautions. But I had no idea.”
Andrew Dalton, the author of the report, concluded: “Schools and colleges have an inconsistent and sorely lacking approach to dealing with sexual health and specifically, HIV. It is vital that this is put back on the Government agenda and that the Department for Education pushes this further.
“The numbers of people living with HIV in the UK are now over 107,000 and are growing every year. The Government must continue to push for mandatory teaching in HIV education.”
Body Positive North East, who offer support, advice and education for those living with HIV, said: “For too many people, their knowledge of HIV is based upon the media campaigns of the 80s and 90s; and for the younger generation, HIV is unknown.
“However, for those living with HIV there is a frustrating reality; and despite the changes to medication and life expectancy, the stigma still remains. Many of those living with HIV, who were brave enough to share their stories in Silent Scream, spoke about how they had little or no education on sexual health matters. If they had received effective sex education, they are individuals whose lives may well have turned out differently.
BPME concluded: “Our hope is that GPs and health professionals will see Silent Scream as a text book in understanding living with HIV.”
You can read more about Andrew and the research paper at sunderland.ac.uk