Ann Marie and John: Parents of Christopher who died as a young adult.
JOHN: If I could change things, I wouldn't have had the secrecy. I'd have shouted aloud, I'd have let people know. Because the biggest thing to us was the stigma, the stigma for our sons, the stigma for us. Why should we have a stigma? We didn't do anything wrong. Other people did something wrong. But they encouraged us to keep quiet about it, because it was better for us, and in some ways I think, us keeping quiet about it added to the stress that eventually put the pressure on our son, that he stopped taking the medication. And possibly condemned himself because of that. The stress on him affected his health, affected our health. I would never keep a secret again. Because if you keep secrets, it only affects you. Health professionals told us, 'Keep it quiet, don't tell anybody. You'll be ostracised from the community.' What happened was, we built up a lot of pressure on ourselves, it was a powder keg at times with us. So I'm not going to keep secrets like that again. I would shout and tell everybody, let them know it's not our fault.
Ann Marie and John: Parents of Christopher who died as a young adult.
JOHN: We stayed in a small village, where attitudes are different towards things, and if it got out about Christopher's HIV, we might have lost everything and be ostracised in the village. That was the danger - because we worked for ourselves, that people would, we'd stop working, we'd lose our livelihood, and as I say, it was just part of the thing. I've no doubt some people in the village known that he was haemophiliac, would have probably guessed it was HIV. We did keep it a secret. Nobody ever said anything to us.
ANN MARIE: Nobody had actually come right out and asked us. And even if they had, we'd have probably denied it.
JOHN: Yes, probably. Probably lied through our teeth.
ANN MARIE: Oh aye, to save my boys, aye. Because even after Christopher died, we still had Andrew.
Carol G: Wife of Pete who died as an adult.
But there was this group of people, the worst medical treatment disaster in the history of the NHS. And they were afraid to even talk about the condition. So that was one of my reasons for going public, because I thought, they're not going to have this control over me. I'm not going to give them that power over me, whether it's the government or the medical profession. I'm going to challenge them head on.
Caroline M: Wife of Mick, who was also interviewed.
Because people with haemophilia had been set up as these innocent victims, I think that's really disempowering to them as a group. Often I will disclose to people that my partner's positive, and they will always ask me how he's contracted it. And I always answer it, but I always say, think about why you're asking me that question. It's about how you're going to judge it. OK, do I feel sorry for this person? Do they deserve it? It's all about those things. So I will always tell people. But I am trying to make people think, you know, it isn't innocent victim, because that is so entrenched in how people think about things. And people with haemophilia themselves can feel like that, and I think it's just, as I said before, it's disempowering, it's not a good place to be coming from. It's not a good way to go forward.
Diane: Wife of Ian, who is living with haemophilia and HIV.
Well I couldn't have lied to people that I care about. But they didn't ask. I just didn't feel maybe strong enough. I just didn't want to take on all of their concerns, and to have an altered relationship with them, that went from being friends into the primary focus being Ian's health. So, in some ways it was protective for me, because it meant I could have a life out in the world where the focus of attention wasn't on Ian and his health. But bottom line is nobody asked.
Janet: Mother of Stuart.
We spent a lot of time on the phone that day to the hospital and to the newspaper, not really definitely denying something, but threatening legal action if they printed anything about Stuart. What had happened was that one of the governors at the school thought that Stuart would be a threat to the other children at the school, and wanted to send a letter to all of the parents saying that Stuart had haemophilia, they wanted to say that he had HIV and we wouldn't allow it at all.
Mary S: Mother of Colin, who died as an adult.
Soul destroying, really, when you've always been so careful about looking after them. That's when he said he always felt dirty, didn't like it. He would say, 'Close the curtains, Mum, I don't want any of those lads looking in'. Because there was quite a lot of resentment going about. Colin would never go out. Just a wasted life.
Pam: Wife of Dennis who died as an adult. She is living with HIV.
I suppose I'm a bit ashamed, when I think about it. Yes, there is a stigma with it.
Yes, at one time I think I felt worthless. I used to be the hub of the family, and I feel as if I can't do that any more, I'm not able to cope with that any more. Yes, I do feel dirty with this disease, I must admit. I've got a sexually transmitted disease, you know. That's what it is I suppose. Well if I'd been running round having sex with all and sundry, not that I would at my age, then I'd think, 'Oh well, serves you right, Pam. You asked for it'. But I haven't. I suppose it's so alien, isn't it?