A-Z

HIV

Health & social care for HIV

In the UK, HIV health care is usually provided through NHS sexual health or genitourinary medicine (GUM) clinics, or in infectious diseases clinics; these clinics may be in a hospital buildingor in a community setting. Many HIV services are in London where almost half of the people with HIV in the UK live. But many cities and towns throughout the UK also provide HIV care. You don't need a referral from a GP to visit a GUM or HIV clinic. You usually just need to phone up and make an appointment, and you may be able to just walk into some clinics. In addition you don’t have to attend the clinic in your local area; some people prefer to be seen near their place of work for example. ‘If you are not a British resident you may have to pay some of the costs for non-HIV care but if your condition is life threatening or infectious you will always be treated.’ Terrence Higgins Trust May 2017.

HIV clinics

Even though people did not always like spending time attending appointments, they were mostly very positive about the care they got from HIV clinics. People drew strength from the understanding, information, inspiration and emotional support they could get in clinics. And if people wanted to transfer to another clinic they could. For instance, one woman changed her doctor and clinic because she wanted to have a child and 'they had the facilities' at the new clinic.

 

The positive support he got from his HIV clinic made it easier for him to deal with less informed...

The positive support he got from his HIV clinic made it easier for him to deal with less informed...

Age at interview: 39
Sex: Male
Age at diagnosis: 20
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.'

 

Talks about how she draws strength from her HIV clinic.

Talks about how she draws strength from her HIV clinic.

Age at interview: 43
Sex: Female
Age at diagnosis: 42
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.

 

He moved to a different HIV clinic and found the care there better. (Read by an actor.)

He moved to a different HIV clinic and found the care there better. (Read by an actor.)

Age at interview: 63
Sex: Male
Age at diagnosis: 51
SHOW TEXT VERSION
PRINT TRANSCRIPT

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.

 

He likes the way that his consultant and his psychologist communicate with each other.

He likes the way that his consultant and his psychologist communicate with each other.

Age at interview: 37
Sex: Male
Age at diagnosis: 36
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.

Some smaller clinics were regarded less highly than larger more established clinics by those we interviewed.

On the other hand, some people felt that larger clinics were less focused on the individual: 'They have such a heavy throughput that it isn't a very personalised service anymore.' And one man felt there could be tensions between different groups of patients in his clinic: 'I was feeling ill, I thought it was the virus, you know, I didn't know it was going to be a heart attack [sigh]. And I heard one guy say to the other one “they're only dealing with him because he's white.”

HIV professionals

The HIV team at the clinic may include doctors, nurses, patient representatives, specialist midwives, community support workers, counsellors and psychologists, health advisors, social workers dieticians and pharmacists.

 

When he was afraid to leave the house (agoraphobia) his HIV clinic found him a community support...

When he was afraid to leave the house (agoraphobia) his HIV clinic found him a community support...

Age at interview: 35
Sex: Male
Age at diagnosis: 31
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.

 

A midwife and counsellor helped her when she got her HIV results. (Read by an actor.)

A midwife and counsellor helped her when she got her HIV results. (Read by an actor.)

Age at interview: 33
Sex: Female
Age at diagnosis: 27
SHOW TEXT VERSION
PRINT TRANSCRIPT

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 just… I was shocked, I was frightened, I was scared you know. Yeah, it was really difficult. 

Yeah, she was quite good cos she tried to… the 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 there's no cure for it. That's what…. the most I know. I mean, I have an idea that there's some kind of treatment, but I'm not sure about it. But that's all I knew. 

So she carried on to explain how… What… everything to that stage, you know what treatment they've got, and what… how 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 she… talked to me for a short while and then she called the couns… they 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 something… 

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 there's 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. 

Clinic social workers can help with things like finding proper housing, finding legal aid, getting financial help and respite care. One social worker helped a woman who became ill with HIV in the UK by helping her young daughter to come from Africa to be with her. 

 

You may need to find out what social services are available to you since they might not come to...

You may need to find out what social services are available to you since they might not come to...

Age at interview: 38
Sex: Male
Age at diagnosis: 36
SHOW TEXT VERSION
PRINT TRANSCRIPT

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 there's 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.

Health advisors could help with education and talking through options. Psychologists and counsellors could help people talk through their problems. While not all people needed or wanted to talk issues through, those that did usually found it very helpful.

People said that the nurses in clinics were dedicated, caring and a 'link' in the help they received. Nurses were valued for the way they communicated with patients, encouraged people and helped them feel cared for. One woman said, 'The nurses talk to you openly about it. And you feel free to talk to them… They take bloods. They answer any questions.' One man whose partner died of AIDS said, 'I gained a lot of strength from the nurses.' Some people - particularly black African individuals - saw nurses as playing a reassuring even 'mothering' role. One woman said of her HIV specialist nurse, 'She was like my mum… comforting me like my mum.'

 

The HIV clinic nurses went out of their way to help him feel at ease and cared for. (Read by an...

The HIV clinic nurses went out of their way to help him feel at ease and cared for. (Read by an...

Age at interview: 38
Sex: Male
Age at diagnosis: 35
SHOW TEXT VERSION
PRINT TRANSCRIPT

And they were real- they, they made you feel… ma- made me feel  very welcome. There's some really nice nurses there. And there's one in particular, I can't remember her name, one of the older nurses there. A Spanish woman. Well she's almost like a kind of a mother. 

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

The people we talked to mostly gave positive accounts about the care they got from their HIV doctors. 'Impeccable,' said one man. 'Amazing,' said another. People really liked it when they felt they had built a rapport with their doctor. Many had been seeing the same doctor for years and had developed a kind of friendship with them. HIV doctors were frequently described as skilled in helping their patients feel good about their care. The people we talked to had changed doctors and even clinics if they were unhappy with the care from their doctor. People did not like it if doctors changed all the time, did not listen, or were too busy and not available.

 

Compares negotiating with doctors in the earlier days of HIV to what it is like for him now.

Compares negotiating with doctors in the earlier days of HIV to what it is like for him now.

Age at interview: 37
Sex: Male
Age at diagnosis: 24
SHOW TEXT VERSION
PRINT TRANSCRIPT
(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 hospital's 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.

 

Taking your time and developing a relationship with your doctor is important.

Taking your time and developing a relationship with your doctor is important.

Age at interview: 39
Sex: Male
Age at diagnosis: 34
SHOW TEXT VERSION
PRINT TRANSCRIPT

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.

Health professionals outside HIV clinics

There are also highly valued professionals who work outside of HIV clinics. For instance, many hospital staff (e.g. haematologists, physiotherapists) were considered experienced and caring. Nevertheless, some of the people we talked to were less positive about the care they got outside their HIV clinics. There were complaints about discrimination, breaches of confidentiality, poorly informed professionals, and care that seemed second rate. One woman said, 'GPs, sometimes you can see they are pushing you away in the queue, you end up the last one being attended, even if you are the first one there. Then you feel there is something going on… If they are going to take precautions they should take precautions with everyone.' Many were surprised when they felt discriminated against by doctors' They felt such doctors should be better informed about HIV' 'It's probably worse when it comes from the medical profession,' said one man. Another man felt that non-specialist doctors can just be 'out of their depth' with HIV.

 

A doctor in Accident & Emergency, and a community dentist he had visited had seemed uninformed...

A doctor in Accident & Emergency, and a community dentist he had visited had seemed uninformed...

Age at interview: 41
Sex: Male
Age at diagnosis: 34
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.'

 

Was shocked by the way a doctor in Accident and Emergency treated him. (Read by an actor.)

Was shocked by the way a doctor in Accident and Emergency treated him. (Read by an actor.)

Age at interview: 34
Sex: Male
Age at diagnosis: 30
SHOW TEXT VERSION
PRINT TRANSCRIPT

This happen like 2 years ago. I was really ill. I was… My whole body was swelling and, and fever. I… Then 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 sometimes… year 2002. So I was really ill. So I was with, my friend. 

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

He just like…  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 said… He was shouting. 

He goes, 'What?' I said, 'HIV positive.' And he just closed the file. It was like bang [claps]. It just like… Oh 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 be… Do you have a doctor? Anything… Anyone 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. There's no moral support whatsoever. There's no tests, nothing. No recommendation. Or there's no comfort. I mean this is coming from someone… of professional doctor.

 

A hospital doctor wrote to his GP about his HIV and so he is now suspicious of health...

A hospital doctor wrote to his GP about his HIV and so he is now suspicious of health...

Age at interview: 40
Sex: Male
Age at diagnosis: 30
SHOW TEXT VERSION
PRINT TRANSCRIPT

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. 

One of the problems with the good standard of care in HIV clinics is that you may feel that you can get better care in the HIV clinic than anywhere else. One man said, 'I get far better treatment through the [HIV] clinic than I do from the GP.' Another man said of HIV clinics, 'Once you begin to accept this kind of healthcare, you cannot go to access a lower healthcare.' There are things you can do though to increase the standard of your care outside the HIV clinic. For instance, some clinics have lists of GPs, dentists and other professionals who are skilled in helping people living with HIV.

Last reviewed May 2017.

Last updated May 2017.

donate
Previous Page
Next Page