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.

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.

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. 

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 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.

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.

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.


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