The report also shows that many interviewees felt that their patient confidentiality had been compromised, mainly through clerical staff in surgeries or, in some cases, through medical professionals themselves. This echoes the leak of the HIV status of nearly 800 patients at the Dean Street clinic in London.
Supported by the charity Body Positive North East and the National Lottery, the research involved 14 respondents who are a mix of gender, sexuality, and race. Also included is an untold story of one respondent who passed away during the research.
Andrew Dalton, Lecturer in Social Sciences at the University of Sunderland, said: “The research is vital to understanding what it means to live with HIV in the UK today. After recent disclosures of patients’ HIV status, it is vital that the stories of those living with the virus are heard so we can recommend and make changes.”
One respondent, named as Jonny in the research, suffered serious effects of HIV as a result of being earlier misdiagnosed by his GP. He began to lose weight dramatically and sought out a HIV test after unknowingly contracting the disease from a previous partner.
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, you know, within a matter of months, I’d gone from sort of like 12 stone down to nine stone, I looked like a HIV patient, and even people that didn’t know my status were questioning it.”
A further area in healthcare highlighted by the research related to an imbalance in care, with a common feeling that the physical medical side was taking preference over mental health. Many respondents expressed how HIV manifests side effects such as social isolation, stigma, depression and self harm, which can be related to methods of coping with HIV.
Andrew Dalton suggests that HIV care must include mental health support, both within and outside a hospital environment, as well as a much greater multi-disciplinary support approach utilising the talents and skills of mental health professionals and third sector organisations.
He added: “Training sessions in HIV awareness for all employers and organisations are vital when dealing with people living with HIV, and should be part of all employers’ core training for staff. Many of the respondents were concerned that their own mental wellbeing was ignored or side-lined and often suffered in silence, which led to further social exclusion and depression. Most could not tell their employers their status due to fear, stigma or rejection.”
Another respondent, named as Martin, had previously suffered from depression but spoke about how his reaction to his HIV status deepened this. He has worked in the healthcare and sexual health sector since the 1990s.
He said: “I did not want to believe them when they said, ‘you’ll have a normal life’, and then I’m thinking f-off, you know, and actually, at one point, I said to one of the consultants, ‘is it important for you as a person to believe that I do believe that?’
“It really just felt like Groundhog Day. I got up, I went to work, so on, and so on, and so on. They tried to put me on Prozac and different bits, and I couldn’t decide whether it was badly timed but I kept having sinal infections, and I said, ‘is the whole point of Prozac the idea that it makes your nose hurt that much that you don’t have time to think about your problems?’
“I’ve never really had any kind of physical [symptoms] from [HIV]. Sometimes I think memory might be, but I can’t decide, I don’t know if it’s my AIDS or my age! You know when you get in the car and think, I’m still holding a tea towel, I hope the neighbours aren’t looking.”
Away from healthcare, education was a dominant theme to emerge from the research. Many of the participants pointed to their own lack of HIV prevention education in school and college, as well as their concern regarding the lack of appropriate sex education for young people in the present education system.
Martin spoke about the growing culture that sees sexual health as an easy fix, and that awareness of the debilitating effects needs to be addressed.
“[The perception is] if I do get it it’s alright, I’ll just take a couple of pills, you know, and that’s the kind of attitude they’ll have, then it’s not going to change. We have a generation now who don’t even associate with it. The risk is pregnancy and so as long as their girlfriend or their partner’s got an implant in their arm then they just do whatever they want, and if they get Chlamydia it’s four tablets in a day.
“A lot of the schools are combined into academies, some of them are funded through faith, which means that they’re cutting it out, and they’ll teach what they want. It’s now left to the teacher to do it [and] if they’re not comfortable doing it then they won’t, and it just gets more and more complicated. But I think what we’ve noticed is more and more of them trying to sanitise it to the point of not being informative.”
Andrew Dalton 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.”
The following statement is from Body Positive North East on the findings of the report:
“Body positive North East was keen to ensure that Silent Scream was produced in order to help move the HIV story on. 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.
“However, Body Positive North East believes that the necessary education and awareness goes beyond the school gates and that there is work to be done amongst GPs and the NHS as a whole. These individuals have a role in both identifying who has HIV but also in providing support where necessary to those living with HIV.
“Our hope is that GPs and health professionals will see Silent Scream as a text book in understanding living with HIV.”
Andrew Dalton’s research is helping to inform the research base of the first nationwide HIV stigma campaign, Live HIV Neutral, which is set to be launched over the coming months. He also hopes to put the stories into a life histories book.