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Berlin, Germany, and Brighton, United Kingdom
An advocate for the rights of people living with HIV, I work as a freelance writer/consultant on HIV-related issues. As a consultant, I work with: The Joint United Nations Programme on HIV/AIDS (UNAIDS); The Global Network of People living with HIV (GNP+); NAM (National AIDS Manual); and NAT (National AIDS Trust). As a journalist, I write for aidsmap.com and POZ magazine. For further information about me, and my work, please visit my website.

BETTER PRACTICE: Why GPs need to be integrated into HIV-positive care

Originally published in AIDS Treatment Update 158, July 2006.

In the 25 years since what is now known as AIDS was first described in a group of gay men in California and New York, for many people living in developed nations like the United Kingdom, an HIV diagnosis has evolved from a death sentence into a complex chronic condition.

Constantly-evolving monitoring and treatment are not the only reasons why HIV disease is complex. Since HIV is also primarily a sexually transmissable condition and is also an unfolding global event – with legal, social and political implications – it is further complicated by prejudice, stigma and discrimination.

The UK’s National Health Service (NHS) attempted to deal with some of these discrimination issues early on by placing HIV testing within the free and confidential GUM (genito-urinary medicine, or sexual health) clinic. Since HIV treatment necessarily evolved in both GUM clinics and other specialties, like Infectious Diseases, many doctors in general practice (GPs, who provide primary care) had limited exposure to patients with HIV.

In the 21st century, however, it is clear that both GUM clinics and HIV specialist services are struggling to meet demand. The government believe that the obvious place to relieve some of this pressure is in general practice, and it is now their strategy to involve primary care in sexual health and HIV services. The problem, however, is that most GPs are not adequately experienced or skilled in complementing seuxal health and HIV specialist care.

Nevertheless, some of our healthcare needs – including general care for non-HIV related conditions and care relating to HIV that sits naturally in general practice (e.g. facilitating referral to mental health services in the community) – may be better managed at a GP's surgery rather than at an HIV clinic. And there may be new roles for HIV-educated GPs to play in the future (e.g. the routine monitoring of CD4 counts and viral load).

Why do we need a GP?
Until now, many HIV-positive people have been able to use their HIV clinic not just for HIV care, but also for general health issues. Many clinics currently provide prescriptions for things that are definitely not HIV-related (like flu vaccines, or asthma medicine) although some are beginning to limit their prescribing to anti-HIV drugs only.

Whatever the situation in your clinic (and London HIV clinics are already under pressure to save money this year due to only a 5% increase in funding despite at least a 10% increase in patients) their prescribing policies will probably have to change in 2008. That's when a new NHS funding system known as payment by results promises to radically alter how HIV-positive patients get services, and how HIV outpatient clinics get paid for providing them (for more on this see Does cost matter? in ATU 150; October 2005).

In May, NAM held a one-day clinical symposium to discuss issues around the future of HIV treatment. Part of the afternoon session focused on accessing care in the context of NHS overspends, cost-cutting and payment by results; how increasing HIV diagnoses are overburdening already stretched HIV clinics (which provide secondary care); and how GPs can be better integrated into the care of HIV-positive people.

"With payment by results we will no longer be able to act as GPs and refer our patients to another specialty, for example to get a hip replacement," noted Dr Margaret Johnson, Chair of the British HIV Association (BHIVA), at the symposium. "Therefore GPs are going to have to be involved, and that means we need to make sure all of our patients have GPs [by then]".

There is absolutely no possibility, however, that GPs will take over all HIV care – at least for the foreseeable future. "I think we're a long away from GPs routinely prescribing antiretroviral therapy," Martin Fisher, HIV consultant at Brighton and Sussex University Hospital, told the NAM symposium. "Maybe in ten years but not in the next few years."

And Judy Hague, HIV programme director of the London Specialised Commisioning Group confirmed that "the case for HIV remaining a specialised service is a strong one. People with HIV may have other health problems, and will require access to a balance of services [including GPs] but I don't personally anticipate that HIV care will move outside of specialised services [i.e. the HIV clinic]".

What can GPs do for us?
There are several reasons why registering with a GP and telling them of your HIV status may be beneficial. The GP’s surgery should be more accessible and may be open in the evening for appointments. Unlike HIV physicians, GPs can visit you at home and you can also access a doctor for emergency visits after hours via your GP. They are an alternative to the specialist clinics for sorting out and treating general problems for people who are largely asymptomatic or have only mild symptoms of HIV infection. And for people with advanced HIV disease, GPs are invaluable in helping to provide home support in association with specialist community care teams and nurses.

William Ford-Young, who describes himself as "a pragmatic 'coal-face' GP, with an interest in the GP's role in HIV management and support" is one of two GPs on the government's Independent Advisory Group on Sexual Health & HIV, and is also Chair of of the Royal College of General Practitioners (RCGP) Task Group for Sex, Drugs & HIV. He argues that all HIV-positive people can really benefit from having a GP, regardless of the kind of care they receive at their local HIV clinic.

"My feeling, as a GP, is that GPs have tremendous skill and experience and a whole team at their fingertips to provide ongoing care for people with chronic conditions," he says. "Certainly, people need a specialist for the complicated HIV issues like therapeutics, virology and immunology. But I think GPs are good at doing things that HIV specialists possibly aren’t good at; we can manage many of the things that go hand-in-hand with chronic disease: the psycho-social issues; the relationship difficulties; the mental health-related things, like depression; and the way that a chronic disease can generally affect your feeling of wellbeing. These are things that good GPs deal with all the time."

Steven Ash, HIV consultant at Ealing Hospital, in west London, agrees that "there are some problems patients may have that are better dealt with by a GP, and patients miss out if they do not make use of a GP service."

Barriers to integration
"It comes down to the right patient seeing the right doctor for the right thing," said Martin Fisher at the NAM symposium, but he added that "there are a lot of barriers" to the integration of HIV into primary care. "Some of those barriers are with the GPs, who are scared about HIV," he said. "Then there are problems with secondary care. I think we're a bit too precious and not very good at letting go, and I think we need to. And then I think there are barriers around patients being scared of their GPs having sufficient knowledge [about HIV]. We have to get over these barriers and make sure GPs get involved."

Understandably, this is causing a lot of anxiety, not just amongst HIV-positive people and the community groups that advocate for and support them, but also amongst many GPs and HIV physicians.

So far, however, no clear policy has emerged regarding who will lead this integration of GPs into HIV-positive people's care. For example, neither the DoH, nor the NHS, nor many of the leading bodies involved in either specialist HIV care or general practice - including the RCGP, BHIVA, the British Association of Sexual Health and HIV (BASHH) and the British Medical Association (BMA) - have agreed on how best to educate GPs about HIV.


Lack of trust
We are now in the unfortunate situation where the people who have lived with HIV for the longest time have the least trust in GPs. This is likely because most of the people initially affected by HIV in the UK – gay men, injecting drug users and sex workers, all of whom were marginalised from society – often experienced prejudice, stigma and discrimination from their GPs during the Thatcherite 1980s and early 1990s.

In fact, a survey undertaken last year at a north-east London HIV outpatient clinic, and presented to the BHIVA Conference this March, found that 85 out of 1687 patients (5%) had experienced HIV-related discrimination from their GP in the past [1]; gay men were much more likely to have experienced this discrimination than African men and women.

Since December 2005, the Disability Discrimination Act has protected anyone diagnosed HIV-positive from being discriminated against in a healthcare setting, since they are providing services (one of the areas covered under the Act). It is, therefore, unlawful for GPs not to provide the same services to an HIV-positive person that they provide to HIV-negative people, or to discriminate in the standard of service or the terms on which the service is provided.
However, the law cannot change attitudes overnight, and there still does appear to be a lot of concern over another, related issue: a perceived lack of confidentiality, particularly when it comes issued around informing third paties – e.g. insurance companies – about their HIV status. This continues to be a common reason given by HIV-positive people for not involving their GPs.

For example, Ealing's Steven Ash tells ATU that "around 10% of our patients have no GP. Another 30% do not allow us to communicate with their GP, and the GP is therefore unaware of their diagnosis."

William Ford-Young says that although in the past he's heard some horror stories about issues such as a lack of respect for confidentiality, things have much improved. And where they haven't, "it's important that patients, and patients' organisations, challenge wherever they are finding bad practice."


Better communication needed
"HIV remains the only condition whereby you can go from your diagnosis to your death without your GP ever knowing about it," notes Dr Ford-Young. "In this day and age, that’s appalling."

One of the problems is that the 1974 Venereal Disease Regulations – which provide for strict confidentiality within the GUM clinic – may be preventing good and clear communication between HIV clinicans and GPs and we, as patients, are often caught in the crossfire.

At the moment, HIV physicians can only keep a patient's GP informed of medication and other important treatment information if the patient gives them permission to do so. However, the simple act of asking for permission may create unecessary anxiety, and suggests that there is something inherently wrong in the GP having this information. Like any successful relationship, good communication can remove uncertainty, mistrust and fear.

Dr Ford-Young's RCGP Task Group has been trying to improve communications between GPs and HIV physicians for several years. "I think the waters have got very muddied with secondary care providing a primary care service for a lot of HIV-positive patients," he says. "To help remedy that, we are working on processes of safe communication, safe prescribing, and sorting out who’s responsible for doing what," he says. "We’re working quite hard to make sure that HIV-positive people can have good GPs, but obviously this only works well if GPs are aware of their patient's HIV status."

Brighton's Martin Fisher agrees communication must improve – not just between GPs and HIV physicians, but between HIV-positive people and GPs as well. "It's important to have that dialogue with GPs because if we don't involve them, and if the patient doesn't tell them, they're not going to know what medications we've prescribed and that could lead to GPs prescribing drugs that interact, or change a drug we've prescribed, like a statin [lipid-lowering drugs, many of which can interact with anti-HIV medicines], through no fault of their own," he told the NAM symposium.

Enhancing services
Happily, many individuals and organisations are begining to work together to try to find solutions to these problems.

The Medical Foundation for AIDS and Sexual Health (MedFASH) - a charity supported by the BMA - recommended that all people with HIV should have access to good quality GP care encompassing prevention, diagnosis, treatment and care as part of their 'Recommended standards for NHS HIV Services', published in October 2003 and endorsed by the Department of Health (DoH). A year later, they produced an excellent booklet, HIV in primary care, aimed at educating GPs about myriad HIV issues - from HIV tests to drug-drug interactions.

Later this month, BHIVA is hosting a one-day workshop comprising many HIV professionals, representatives from the DoH and Primary Care Trusts (PCTs), and many patient advocate organisations, including NAM. Focusing primarily on how best to improve access to HIV care throughout the UK, it will also include a discussion of how GPs can best be integrated into the care of HIV-positive people.

And in several areas of the country, GPs are being educated about HIV at locally-run workshops. In Brighton, they've been running an interactive two-day HIV education course for interested GPs and their practice nurses since 2004, resulting in at least eight GP practices in Brighton and Hove providing what is known as locally enhanced services for HIV-positive people. "We're not expecting GPs to provide HIV care," explains Martin Fisher, "we're expecting the GPs to provide the primary care for people who also happen to have HIV."

Education is the solution
Surinder Singh, a south-east London GP with a special interest in HIV, and the second GP on the government's Independent Advisory Group on Sexual Health & HIV, noted at the NAM symposium there is "great variability with where locally enhanced services are available."
These services are funded by individual PCTs, and thanks to the government's decentralised funding of NHS services funding decisions are left to the discretion of individual PCTs. "So in south east London we don't have any," continues Dr Singh, "and that doesn't seem all that equitable. The patient should come first."

Dr Ford-Young agrees, but argues that HIV-positive people don't necessarily need a locally enhanced service to get the best from their GP. "The bottom line is that if you have a good quality general practice – and that’s not just the GP, but the whole team – things work well for patients with HIV no matter who they are or how they’ve acquired their HIV infection. And those issues shouldn’t have to arise because GPs should be good for everybody.

"I know that that's an ideal, and it's important to recognise that there are gaps between the ideal and reality. But educating GPs about HIV, educating patients about GPs, and creating a much better dialogue between the specialists and general practitioners can close that gap."

References
1. Elford J et al. Discrimination experienced by people living with HIV. HIV Med 7 (supplement 1), abstract P93, 2006.