"People living with HIV are still treated like victims"

About: Manchester PCT Manchester PCT / Contraception and sexual health Manchester PCT / School nursing Manchester Royal Infirmary North Manchester General Hospital / Infectious diseases

(as the patient),

I have chosen to title my story in this way because, in my experience, the NHS and their partners (ie voluntary sector groups like Body Positive North West, Lesbian and Gay Foundation, Black Health Agency and George House Trust, to name just a few), often treat people living with HIV too much as victims. Rather than empowering and enabling them with choices and options about the services they receive, often due to the ongoing stigma and prejudice borne out of ignorance and fear. The victim mentality of those living with HIV is usually related to dependency of such services and I as a long-term non-progressor/survivor often feel now threatened by all service providers.

I strongly feel that I do not require a certificate through and "Expert Patient Programme" to allow me to assertively voice my concerns about how all services statutory and voluntary treat me and others like me. I can only speak for myself though on this occasion, but I could forward anecdotal evidence of people like minded. I also feel that organisations like the NHS and voluntary sector groups do not recognise my personal experience and story - I therefore feel as If I am a second class citizen. I am over 50 and lived with HIV for now nearly 26 years and still counting. When I've challenged the prevention messages are too mixed examples like people living with "Undetectable HIV" (Viral Load) can have unprotected sex with partner (male or female) raises alarm-bells for me and if a person wants to participate in penetrative sex, as long as they withdraw before ejaculation again raises serious alarm bells. I do not want to hear these messages and I'm sure that people just becoming sexually active don't want to hear those messages either.

I accept that what best comes with responsibility also comes respect and over the years I have often asked people in the public arena what would you do if you were told after sex that the person you have just had sex with was positive (HIV) and not told you before. How would you re-act? They often replied but I should have insisted that they wear a condom, but we all know that doesn't always happen. I live in the real world and most people are not always assertive about their own health and well-being. I wasn't but when I was diagnosed no-one knew of this disease until many people were dropping down and often dying.

There are now even the morning after the night before pill for the women, a contraceptive pill for men too and even the PEPS treatment of someone does come into contact with HIV and gets that treatment with 72 hours of the sexual act.

Is this really the message we want to hear? A final note: before I completely go too far. As a father and grandfather I don't want young people getting what I've got and even though I am currently free of medication - I have known many people on the various combinations with often severe side effects that last long-term, sometime changing from one combination to another - not getting better and some due to their bodies defenses been compromised dying. I personally have lost 3 partners to HIV-related problems and many more friends in this country and all over the world.

I feel this really needs looking into and I hope others do too. We need to campaign for better awareness, campaigns for all including positive people too. Just because they are HIV positive, they too need love and affection even in a sexual relationship.

I wish to close now, but if anyone wishes to contact me with your support or even ideas on how we could work together then I am the co-founder of an advocacy and campaigning project. Thank you for your patience and everyone have a good and sexy life.

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