As people with HIV/AIDS live longer, services must adapt to meet the needs of more patients and the first generation of HIV-positive pensioners. Emma Dent reports

Who remembers the Don't Die Of Ignorance campaign? Every household in the UK was sent a leaflet as part of the huge 1987 public information campaign warning how easy it could be to contract HIV, accompanied by sombre TV adverts featuring giant tombstones.

A little over 20 years later, the numbers of people with HIV/AIDS in the developed world have not reached the horrifying figures some predicted. It has been estimated that by the end of 2008 about 60,000 people in the UK will have been diagnosed. The number of deaths from AIDS has remained stable at around 500 a year since the late 1990s.

But the number of those with HIV is growing by 10 per cent a year. The most recent estimate is that there are around 73,000 people living with HIV in the UK - a figure predicted to grow to 100,000 by 2010 - and that around a third are unaware they are infected. This presents huge public health issues, as around half of all new infections are thought to have come from people who do not know they have the condition.

Conversely, the introduction of highly active antiretroviral drug treatments in the 1990s means that those with access to them should have a significantly increased life expectancy and HIV can be treated as a long-term condition.

Just five years ago the life expectancy of someone in the UK with a diagnosis of HIV was 17 years. Now it is 30 years and expected to grow further, in a reflection of the UK's ageing population. With the average age of diagnosis being 33 or 34, the UK could soon be welcoming its generation of HIV-positive pensioners.

But this significant success has come at a cost, as NHS services for people with HIV have not grown to reflect either the success of treatments, the increased life expectancy, or the ever-growing numbers of those with the virus.

"The basic service model for HIV - involving a regular, probably three-monthly, appointment at an outpatient clinic, for blood tests and a repeat prescription - has not changed," says Paul Ward, deputy chief executive at sexual health charity the Terrence Higgins Trust.

Mr Ward argues that much HIV care should be shifted out of hospital and into the community. "Services could be nurse led or run by the third sector. When people need specialist care, they could be seeing clinicians who are currently overwhelmed but would be freed up by these moves.

"A good comparison is the care programme approach for people with mental health problems, where most are on a standard care programme and those with the most complex needs are on an enhanced care package," he adds. "No hospital-based HIV service model currently has a future-proof model of care."

But he believes a combination of HIV not being on the radar of sexual health managers (at least partly because it is not driven by the targets found elsewhere in the sector, such as on 48-hour access) and "a degree of clinical inertia" may delay change.

HIV clinicians are as one when they agree that services have changed "dramatically" from the early days when care consisted at best of advising patients to eat well and take vitamins and at worst comprised nothing more than providing a good death. "Now when people are on the ward, it is because they did not take treatment [although treatment regimes have become easier, they must be strictly adhered to] or have presented late," explains Simon Edwards, lead clinician for HIV services at Camden Provider Services.

"We are usually confident we can get them over their acute illnesses and the aim is to treat them once and not have to see them again, although they can be in hospital for up to six months."

However, keeping most of your patients well has downsides for HIV services which, run without referrals as open-door services, have become overwhelmed.

"We have made a number of changes to become more efficient," says Dr Edwards. "We see people less often - it used to be four times a year, now it's 2.5 times - we have more virtual appointments over the phone or via email and shorter appointment times. We have specialist nurses to see patients, and early morning and evening appointments."

It is a delicate balancing act. Unwilling to use primary care, patients have become accustomed to using HIV services as a one-stop health shop. And as patients can choose service by choice, rather than by referral, if they decide they do not like one service, they can switch their allegiance - and the funding that comes with it - to another one.

"Patients do tend to use us as a primary care service. We refer them on if needed, and three years ago we decided we would only prescribe HIV-related drugs," says Imperial College Healthcare trust lead clinician for HIV services John Walsh.

"We are always trying to ensure the greatest number of patients experience a good quality of care and it was unsustainable to carry on doing everything, with no increase in consultant time but an 8 per cent increase a year in patients.

"There remains an anxiety among patients: what symptoms are HIV related and what are not?" Dr Walsh continues. "And some are unhappy about the changes. But some newer patients understand this is one long chronic disease among others that they will get as they get older."

The question of moving services into the community remains a highly contentious one. "It would be stupid to suggest HIV care can be managed in the community. The healthcare needs of someone with HIV need to be separated from their other needs and HIV services should work alongside GPs and support them in their work. HIV needs specialist care and the real issue is getting an early diagnosis," says Simon Barton, clinical director of HIV and genitourinary medicine services at the Chelsea and Westminster Hospital foundation trust.

National AIDS Trust chief executive Deborah Jack points out that the condition of someone with the virus can fluctuate and that life chances of HIV patients have changed dramatically since many non-specialists did their training. "HIV specialists understand the condition very well but outside the specialty, levels of understanding are often very low," she explains.

Resistance to change

Dr Edwards says: "When we have GPs sitting in on our clinics, they say 'it's complicated, isn't it?' We frequently have to change our advice to patients, as serious side-effects emerge frequently and require intense monitoring, as do emerging health risks, such as an increased risk of developing cardiovascular disease and drug alerts. Any move into the community needs to be looked at carefully and closely monitored."

He points out that patients "have a lot to lose. They get a very good service from HIV clinics; walk-in clinics; a doctor on call until 10pm; a prescription for three or four months' worth of medication".

And patients, who often feel they are experts in a condition they have been living with for some time and want to be in charge of, are reluctant to see changes to services. "They will have to be dragged kicking and screaming," says one clinician.

Paul Decle, founding member of the Chelsea and Westminster positive patients forum, points out that HIV patients often do not have a GP or if they do they are not confident the doctor is capable of handling their needs or that confidentiality will be maintained.

"We hear time and again that a clinic tells a patient something they want help with is not an issue for them and they should go to their GP. But their GP takes one look at them and their notes and says, 'you have to go to the HIV clinic'," Mr Decle says. "What patients want is evening and weekend appointments - a service that wraps around the patient rather than it having to be the other way round. It is no good being told to 'normalise' your life with HIV, to go back to work and so on, when you have to take annual leave for a clinic appointment."

Some clinicians acknowledge that service redesign will probably close some HIV services. But it is not yet known what future demands on HIV care will be, or the effects of having the virus as an ageing person or of taking antiretroviral drugs over 20 or 30 years. Nor is it known how services routinely targeted at older adults will adapt to the needs of people with the disease.

"We are now asking our service users what they want from services long term. Are we going to have to be working with charities such as Help the Aged and Age Concern?" asks Lynda Shentall, director of services at HIV charity George House Trust.

Mr Ward agrees: "It is gradually dawning on people who never thought they would get to retirement that they now have to start thinking about it. The sort of care pathways currently in place between HIV and oncology or HIV and cardiovascular services will need to be in place with older people's services."

Testing times: the need for faster diagnosis

With around a third of people living with HIV currently undiagnosed, the need for testing for the disease remains urgent. But campaigners and clinicians are concerned NHS-based testing remains largely and unnecessarily confined to hospitals and tests are not offered often enough.

New testing guidelines produced by the British Association for Sexual Health, the British HIV Association and the British Infection Society due to be published this month aim to increase the numbers tested by enabling doctors, nurses and midwives to routinely obtain informed consent for an HIV test, as they would for any other clinically appropriate examination.

Clinicians emphasise the importance of early diagnosis.

"A significant proportion of our inpatients, with acute infections, have had a late diagnosis," says Adrian Palfreeman, a consultant physician at University Hospitals of Leicester trust, who chairs the HIV special interest group at the British Association for Sexual Health. "Often when they are first admitted it has not crossed the doctor's mind that they could be HIV positive, they are embarrassed to suggest it, or they feel the patient is not in a high-risk group." Ignorance about the condition is also causing more people from traditionally low risk groups, such as white heterosexuals and people aged over 50, to become infected.

A 2007 National AIDS Trust survey showed that more than 90 per cent of respondents did not fully understand how HIV is transmitted. "There is a lot of ignorance and a lot of fear about HIV in the heterosexual population and we are also seeing quite a few teenagers in the service," says lead clinician for HIV services at Imperial College Healthcare John Walsh. "Diagnosis is often a complete shock."

Race against time

1950s-70s

It is now thought people died of AIDS as early as the late 1950s and 1960s. AIDS-like symptoms begin to be recognised in the 1970s among Africans and people who had worked in Africa.

1980

The first case of a person dying of AIDS in the US is recognised. Four Americans are thought to have died of the disease that year.

1981

AIDS is first written about by a journalist, in a newspaper for the gay community, in an article on the number of gay men being treated in hospitals for a strange form of pneumonia. US agency Centers for Disease Control and Prevention reports clusters of the rare skin cancer Kaposi's sarcoma and Pneumocystis pneumonia among drug users and gay men in California and New York. By year end 121 people are known to have died of AIDS, including the first known UK case.

1982

Early use of the term "gay-related immune deficiency" for the disease falls aside when heterosexual immigrant Haitians begin showing symptoms. The term AIDS (for acquired immune deficiency syndrome) is proposed at a meeting in Washington DC.

First known cases are reported in Italy, Brazil, Canada and in a baby from California who received a blood transfusion; haemophiliacs and others are later found to have contracted the disease through blood transfusions.

1983

A National AIDS Helpline is set up in the US.

The US Food and Drug Administration issues guidelines that state people at high risk of contracting the disease should not donate blood or plasma products.

First reported AIDS death in Australia sparks public health campaign.

1984

US health and human services secretary Margaret Heckler announces scientists have discovered the probable cause of AIDS - a retrovirus, named as human immunodeficiency virus or HIV. She says a vaccine will be available in two years.

1985

The FDA approves AIDS antibody screening tests for use on all donated blood and plasma intended for transfusion.

Rock Hudson, the first US celebrity to publicly admit having AIDS, dies of the disease.

First cases of AIDS reported in China.

1986

First known cases of AIDS in the USSR and India.

An American immunologist, National Institute of Allergy and Infectious Diseases head Anthony Fauci, states one million Americans have been infected with HIV and predicts this will rise to two to three million in five to 10 years.

1987

The first antiretroviral drug, AZT, is available.

UK government launches Don't Die of Ignorance campaign.

Needle exchanges are piloted in the UK and HIV testing is introduced.

Pictures of Princess Diana holding the hand of a patient in an AIDS ward are broadcast around the world.

1988

First World AIDS Day.

1989

First HIV awareness materials targeted at gay men are produced by the UK Health Education Authority.

1990

EastEnders runs a storyline in which greengrocer Mark Fowler is HIV positive.

1991

24 hours after issuing a statement that he has AIDS, Queen singer Freddie Mercury dies.

US basketball star Magic Johnson publicly announces he is HIV positive.

The red ribbon becomes an international symbol of HIV.

In the US the FDA licenses a rapid HIV test.

Ten million people worldwide are HIV positive.

1992

In America AIDS becomes the leading cause of death among 24 to 44-year-old men.

The first combination drug therapies, which are more effective than a single drug regime, are introduced.

1995

Highly active antiretroviral therapy (HAART) becomes possible. Death rates from AIDS in the UK peak at more than 1,700. Within two years, the introduction of HAART drugs means death rates due to AIDS plummet in the developed world.

1998

Trials of a vaccine against HIV begin.

2001

Drug companies abandon their opposition to the generic production of antiretroviral drugs.

Department of Health publishes its first national strategy for sexual health and HIV.

2002

The Global Fund for the fight against HIV/AIDS, malaria and TB is set up.

2005

World leaders meeting at the G8 summit in Gleneagles commit to universal access to treatment for HIV/AIDS.

2006

About 38.6 million people are estimated to be living with AIDS worldwide.

2008

Around 80,000 people are living with HIV in the UK. New diagnoses occur at a rate of about 10 per cent a year.

The annual number of deaths in the UK has hovered at around 500 annually since 1998. The life expectancy of someone on antiretrovirals and in good health is predicted to be around 30 years.