But from the support side, Dr [name] at [hospital] was, was, at the time, one of the experts. And the, the team around him were so, so supportive. Very, very positive And I, I think that was very important.

Why was that important?

I think if you initially have a very positive, very supportive team to support you, when you’re first diagnosed, then that sort of rubs off. So even if you get the odd negative thing in the future from, from healthcare staff, you’re able to deal with it. Because you’ve had so much positive reinforcement at the beginning. And, ok, one, one time we had hassle with the dentist. Where [name of partner] had gone to the dentist and [pause] one of the workers at the dentist had said, ‘Well, you can have this done if you feel it’s worth having done. And I think, well, what’s that supposed to mean? If You’re saying, ‘If, if you think you’re going to live long enough to benefit from the dental work. And another time we turned up at, up at the dentist. And everything was covered in plastic bags, including the staff. And, and the support worker at the dentist’s said, ‘Oh well, [name of partner] is one of our special patients. [laughs] To which I replied, ‘Well I’m one of the special patients. But they never, never covered the whole surgery in plastic bags at the transitional training unit.

In actual fact, everybody in that team, [name of HIV consultant], the guy who does my bloods, the clinical nurse, they are fantastic. They take their time to talk to you. And 9 times out of 10, if you don’t want to talk about your HIV status, you don’t have to. You can just talk.

So the whole team, [name of HIV consultant], [name of HIV consultant], [name of nurse], to me they’ve, they’ve been a strength to me. Because they’ve shown me that life goes on. And you will get knocked every now and again. Like a child who’s learning to walk, you will fall down. But you get up, dust yourself, and move on. So in that way I have found that they’ve been a strength to me. And they’ve been very open with me. And I think the relationship we have now is not a patient-doctor’ a clinical relationship. It is a relationship for what the word relationship means. It is a relationship that we have. And they have that even with my children.

So but I have found my new hospital lots, I mean completely different from the one I used to go to, then you know, as if it’s a different country you know!

I think my new hospital being bigger, the old one was just like a provincial sort of health clinic, sort of you know. The comparison, you know when I compared it. It was so different because I mean the way the doctors behaved too, you know. They were more they feel closer to you.

They understand and like the, the consultant certain she was she was very frank with me, she would tell me that really we don’t know. You know and I really appreciated it, I felt really, really close, and I could discuss anything you know. And the nurses too. And I realised that the nurses were sort of the link, the connection, there was a linkage. Things that I talked to them at my home you know, they tend to pass it on to the doctors and so that was this link.

And it gives you hope you know. Yeah, it helped a lot they were interested in the background you know, how I was feeling, my relationships and this sort of thing you know. So not only the medical side, they were really interested in the social aspects, how I’m feeling, my housing, you know all those details. And I felt important you know, wanted.

I think [pause] because I’m seeing both psychology and the consultant, I think the best help is that they both talk to each other. That the communication’s there, so if I go in one week and see my consultant, the following week my psychologist knows why I went in. And that makes it a lot easier, if the communication’s there that’s fine. I know a few people that I’ve met since, that they don’t want the psychologist knowing what the consultant knows, and vice versa. But there are no secrets really to it, and I can’t see the point repeating yourself, for repeating sake.

I just stopped going out, completely. I just stopped putting credit in the electric meter, and stopped buying food, and just stopped going out, basically. And I was sitting for weeks at a time with no electric, no food, nothing. You know.

The most difficult thing I mean luckily one of the neighbours there, he used to like drop round and ask me if I needed stuff from the shops and stuff like that. And for a time Without him I’d have been lost. I’d be dead, I think, by now. You know, I would have just rotted to death [laughs]. You know. And then I, I spoke to’ I had to go to the hospital for regular bloods and that. And I, I didn’t go for about a year. And I basically got a letter saying, ‘Why haven’t you been in?’ So I responded to that. And I was just telling him how I was feeling. And he sent somebody from adult placement, which is at [city]. And he basically set up a community support worker. He started coming round, taking me shopping, making sure I was eating and even getting out of bed, you know, some days.

They have a specialist, they have a specialist midwife which is quite good. And she sort of called me into a room and just said to me when I sat down that the test I had done came and it was positive. I was really shocked, I justI was shocked, I was frightened, I was scared you know. Yeah, it was really difficult.

Yeah, she was quite good cos she tried tothe first thing she said is, ‘What do you understand by that?’ And then I carried on to explain that I know that is causes AIDS and theres no cure for it. That’s what the most I know. I mean, I have an idea that theres some kind of treatment, but I’m not sure about it. But that’s all I knew.

So she carried on to explain howWhateverything to that stage, you know what treatment they’ve got, and whathow HIV affects the body and everything. She explained everything. And how, the first thing she really talked about was how she can prevent, if I’m put on for treatment, then I can prevent my unborn son from being infected, yeah.

And then after shetalked to me for a short while and then she called the counsthey have psychologists, the counsellor, yeah, and she came. She didn’t seem to talk much. She sort of just comforted me and told me at least now that I know, I’m not going to just fall ill and be taken into hospital sick or somethingnbsp;

And then they talked about the fact that I shouldn’t rush and tell people. I should think about it. I shouldn’t feel I need to tell people.

And I remember, yeah, the counsellor gave me a number and said if theres anything I want to talk to her about I can ring and if I want to book an appointment to see her. And the midwife as well.

Try to get information around what services that you can access. And where to go for everything that you might require. Because services are all over. Different kinds of services, it depends on where you are living. And so look for the information if you can find it on the Internet.

Make a follow-up, make phone calls or go and visit the people. Talk to them and help is always available… It’s, it’s really up to the individual to ask for the services. Because the services will not come to you, will come to you. So theres a lot of work, you know seeking, to get, to access the service. You’ve got to follow it.

Fortunately for me they had to get a social worker who had to run up and down for me. And so But social workers will only… not do it until they are instructed by the hospital to do it. So it was easier for me because I was admitted in hospital. And so they had to deal with me while I was there.

And they were real- they, they made you feelma- made me feel very welcome. Theres some really nice nurses there. And theres one in particular, I can’t remember her name, one of the older nurses there. A Spanish woman. Well shes almost like a kind of a mother.

And then sheyou know, she gave me her mobile telephone number. You know, ‘Even out of hours, if theres anything wrong just give us a call. Other numbers. Even any questions. It was veryYou know, it made you feel like nothing you asked was stupid. Noth- no question you had, no, no feeling you had was stupid. It wasThey couldn’t do enough to make you feel at ease. Well, and they still do. And they’re, they’re fantastic there. I’ve noI can’t say anythingI don’t want to say anything bad because I have nothing bad to say.

(He was) an older doctor and was very much ‘Whow! No this medication will be good for you it is the only thing we have. And I said, ‘Yes, it is the only thing you have but it is not doing people any good. ‘Agh well it could prolong your life this much. I said ‘Well prolong at what cost? I don’t want what the people I have seen taking it have. I am OK at this point. And this was say in the early Nineties still before I became ill, and so I refused it and then the doctor changed. But at that point you had a new doctor every six months practically. Because I was at a teaching hospital and as most of the hospitals were with the HIV units attached’ they were teaching hospitals and so the doctors would be on rotation, they would do six months in paediatrics, six months within sexual health, six months here, six months there, sometimes maybe a year. But generally you did not see a doctor on a regular basis, so you couldn’t develop any kind of relationship really. But what happened was then as younger doctors came through they seemed to be a little bit more respectful of my choices. And really after a couple of years a particular clinic I went to started to ensure that the doctors that they had were there and that they stayed there. That those people who chose sexual health and HIV in particular, that there was their choice for their career.

And it’s a it’s a relationship which, which happens over time. And I think that that is something actually that I would really recommend to, to someone in this position is that, is that, if you feel unsure, just give yourself some time. And, in kind of developing a relationship with your doctor. I mean I have a friend who was, who was diagnosed, well an acquaintance who was diagnosed recently. And he was kind of put on treatment two or three weeks later and it really wasn’t, a helpful situation for him at all because he basically ended up having to come to terms with having being diagnosed HIV positive, having to absorb all the side effects, and the effect that Sustiva has on your mind. Cope with a bit of depression and it was all that together, where, not trusting his doctor, feeling his clinic is not sort of looking after him well. And it’s just, you know, not, I think time is very important in those situations, and very much so.

I went to the dentist and had an examination and he was sort of looking at my teeth and he said you know, ‘Is there anything I need to know or whatever. And I was quite open and I said, ‘Yeah, I’m HIV positive, if this is a problem for you, tell me now rather than waste all our time. And he sort of said, ‘No. But he stood ten steps back and he just got very uncomfortable.

And then he straight away told his dental nurse, who was actually very good and she said, ‘No, HIV’s not a problem, it’s much easier to get hepatitis than all of this. And I was very annoyed, I said, ‘This conversation is between me and you. Not between you and your dental nurse. I needed to decide whether I was comfortable with you and you with me and I really believe you’re not. And he wasn’t. And he more or less implied that he would prefer if I didn’t come back. He didn’t, what he said to me was he didn’t have any patients who were HIV positive. And I said, ‘No, that’s not true, you might have patients that aren’t telling you.

I was in hospital for a week with a chest infection and was taken in by ambulance. And I’ because if you know, you sort of know your own body and how you’re feeling, well I think I do reasonably well. And you go through certain. I get chest infections. So I know the routine procedures and how it’s going to work and pan out, and if I do this now it will be better than if I leave it a day. So I was taken in by hospital, in by ambulance. And the on call doctor, whatever, in A&E, sort of said, ‘Have you conditions or whatever, medication and that?’ So I said, ‘I’m HIV positive. And his first words were, ‘Oh my God.

This happen like 2 years ago. I was really ill. I wasMy whole body was swelling and, and fever. IThen I just suffered with lots of night fever every day. I, I think it started maybe end of 2001. Nights where night fever. I have to constantly get changed. And it was getting worse and worse. Sometimes I have to get changed like 3, 4 times at night. So I have a sleepless night. And sometimesyear 2002. So I was really ill. So I was with, my friend.

And then he took me to hospital for emergency doctorto see emergency doctor. When I went in, this doctor obviously don’t have any knowledge about AIDS and HIV. So hes just a doctor, on-call doctor. God, the way he treated me is really bad. Discriminations.

He just likenbsp; He asked me, ‘Have you got any other health issue, any problem?’ I said to him, ‘Look, I, I’m HIV positive. Very slowly. And he saidHe was shouting.

He goes, ‘What?’ I said, ‘HIV positive. And he just closed the file. It was like bang [claps]. It just likeOh God. And he looked’You’re not supposed to come here and see, see me. So what’s the point of coming and see me? You must beDo you have a doctor? AnythingAnyone to see your HIV?’ I say, ‘Yes. Then, ‘Yes, maybe you should go and see them. Don’t come here. That’s it. That was the end. Theres no moral support whatsoever. Theres no tests, nothing. No recommendation. Or theres no comfort. I mean this is coming from someoneof professional doctor.

They told GP, they wrote a letter from my hospital to the GP, oh this person he is infected. Maybe his children might be, his wife might be also you know, that kind of a thing. So it’s a lot of confused bunch which I don’t really trust again, I don’t actually agree with them yeah… Well it makes me very sceptical, when I go to see health professionals.

I now deliberately refuse to open up to them because they’re just sniffing around for information from you. The little thing they hear from you, they write it down you know, put it on paper. You know when you tell them you don’t want it on record, Please let it be off record, they just secretly put it down and then by the time you get back to them… you don’t know where information is passed to.

Yet they will tell you there and then that number one this information is just within, it’s not going out, but nobody knows what happens to it thereafter.