How will medical care for HIV work in the future? Gus Cairns investigates.
It’s five years from now. The number of people living with HIV in the UK is well over 100,000, and you’re one of the new ones.
You were tested as part of a routine sexually transmitted infection (STI) check-up at your local polyclinic, a sort of ‘health mall’ with a late-evening sexual health shop. You had blood tests done to check whether you have any HIV drug resistance and hepatitis – oh, and your CD4s too, though these days nearly everyone starts treatment straight away. It turns out you don’t need any special meds, so they prescribe one of the once-a-day combination pills for HIV. After three initial monthly appointments to check the medication is working, you settle down into a quarterly visit with the practice nurse after work. You don’t even have to go to the chemist for your pills as they are home-delivered. You’ve been told a hospital consultant has reviewed your notes but you don’t see any reason why you should ever have to see her personally. You have better things to do than worry about HIV.
Could having HIV really be that trouble-free? Well, maybe for some. Here’s an alternative scenario…
You’re diagnosed with HIV by your GP when an HIV test was, unbeknown to you, included among a battery of tests they are paid to do (it was in the small print on the consent form). You develop depression, which he assumes is a reaction to your diagnosis. You’re sure it’s a side-effect of your pills, and you don’t have adherence explained to you adequately so you only take them intermittently. Your last blood sample went astray and it takes six months before you find out your HIV is resistant to two classes of drugs. You go to the local hospital for your second anti-HIV regimen. This is prescribed after a delay that was caused, you later find out, by your GP and the hospital arguing about who pays for it. The new regimen sends your cholesterol sky-high. Your GP prescribes the wrong statin, which reacts with your HIV drugs, causing severe muscle and kidney problems. You come off HIV medication altogether, your CD4s plunge and you spend so much time shuttling between appointments you have to stop work.
Neither of these scenarios is likely to be the typical patient story. But they have one thing in common, namely the increasing proportion of care that will be undertaken by your local GP or equivalent – primary care. How can we ensure that the first scenario is closer to reality?
“At some point in the next few years, the current model of HIV care is going to become unsustainable,” says Paul Ward, Deputy Chief Executive of the Terrence Higgins Trust. “We just can’t go on having more people with HIV cared for by the same number of specialists. There is no money to expand clinic capacity.”
Ward is talking about a policy document called A Sexual Revolution,1 which was issued last summer. In this, the Terrence Higgins Trust maps out a model of care for sexually transmitted infections and HIV that aims to avoid specialist hospital-based services cracking under the strain while not transferring too much of HIV care to GP practices without HIV experience.
As well as a number of proposals for improving STI services and HIV testing, the document envisages “a major shift to deliver HIV clinical care for the 'well person with HIV' out of hospital”, overseen by HIV specialists, thereby ensuring the available HIV specialist capacity is used sparingly and is available for those who need it most.
Amongst other measures, it proposes:
the average “well person with HIV” would see specialist nurses in polyclinics, larger general practices and other community health settings for their health care;
the setting up of ‘e-consultation clinics’ via the internet for people to get specialist help when they need it;
home delivery of HIV treatment, home-administered CD4 testing and “as the technology allows”, home viral load testing;
an integration of HIV health care with HIV social care. This would mean that, for instance, social workers and benefits advisers would work alongside nurses dealing with HIV, drink and drugs problems, mental health and sexual health in a local centre.
Many patients feel that hospital-based HIV services are already moving this way. “My hospital-based clinic in London already looks something like the model service of the future that A Sexual Revolution describes,” comments Matt Williams on the UK Community Advisory Board (UK-CAB) patients’ web forum.2
Brian West comments that, in Scotland, a significant part of his health care is already GP-delivered, but emphasises that measures had to be put firmly in place to avoid the ‘scenario two’ possibility.
“The key here is to ensure access to new drugs and technologies for people who need them, when they need them. I have no problem at all with the transfer of care when everything is going OK. But how quickly will I get access to a specialist when things get difficult? And will my specialist’s advice be the last word? We know that GPs can and have been used as both the gatekeepers to the hospital system, and as agents of medical rationing.”
Many HIV doctors share his concerns. The British HIV Association (BHIVA), the HIV clinicians’ organisation, feels that while the THT paper makes some sensible recommendations, it was issued without consultation with HIV doctors. Although it recommends “fast track referral arrangements with specialist hospital HIV services”, it was written without consulting hospital providers about what these should look like and how they should work.
BHIVA issued its own Standards for HIV Clinical Care in 2007.3 At that time, however, they assumed that the majority of HIV care would remain within, and be paid for by, hospitals. The Standards only devoted 70 words of a 12,000-word document to general practice and primary care. BHIVA is now writing an annexe to the Standards on extending the role of primary and community care in HIV, to be presented later this spring.
This paper emphasises that all providers of HIV care should have clear and fast referral arrangements with hospital-based services to cover complex cases, people with treatment failure, people who are diagnosed late with AIDS, and people with co-infections like hepatitis.
BHIVA says that because HIV medications still have potential for interaction with many other drugs, only specialists should prescribe them, regardless of where patients are seen. This, plus the potential for wasteful duplication of tests and rows about who should provide particular treatments, requires top-quality communication between GP and hospital services. This raises questions of confidentiality, and also means that it won’t necessarily cost less to get GPs to provide HIV care.
The paper acknowledges that primary and community care could have benefits for people with HIV such as ease of attendance and GPs’ greater experience with certain issues such as heart disease and diabetes. They acknowledge that the subset of patients with complex psychosocial issues might well be better served by an effective local GP practice with good links to community mental health, addiction and social services.
Dr Ian Williams, the HIV consultant at London’s Mortimer Market Centre (MMC) HIV clinic, comments that there are already models to choose from.
“If you’re going to improve patient health care, you need to do it in a collaborative way,” he says. “There are many different possible care models and shared care arrangements already for people with long-term health conditions. We don’t want to reinvent the wheel here.”
The BHIVA paper suggests three models:
Specialist outreach clinics in large health centres and polyclinics;
Training local GPs to provide non-HIV related care, with tight liaison with the local HIV clinic;
Providing primary care trust-funded GP services within an HIV clinic.
Some preliminary research on HIV patients’ preference for these options has already been done. Chris Sandford runs the patient group at the MMC clinic.
“In our survey 58% of patients preferred the idea of an in-clinic GP, even though 77% had ‘come out’ as HIV positive to their own GP,” he says.
Whatever solution is adopted locally, a higher proportion of care needs will be met, and paid for, by primary care trusts in the future, not least because this is the declared policy of the Department of Health (DH).
In January 2009 the DH issued a document called ‘Supporting People with Long Term Conditions: Commissioning Personalised Care Planning’.4 It says that every one of the one-in-four people in the UK who has a chronic health condition should have a Personalised Care Plan, a collaborative agreement between the NHS and the patient on how to handle their case. The paper doesn’t mention HIV specifically, but makes it clear that care planning for patients with ‘less complex needs’ should be undertaken at the GP level, and a lot of HIV patients will fall into that category.
Stuart Rowe is the interim director of the London HIV Consortium, the group of NHS commissioners who collectively purchase and allocate HIV services in London.
“There is a possibility that parts of HIV might be reclassified as long-term care rather than specialist care,” he says. “If this does happen then the HIV Consortium would continue to commission the same range of services as it does now, though the possibility of providing non-complex long-term care in a primary care setting may become an option in future.” The consortium is writing a draft service specification for the commissioning of such a combination of care, which will be out for consultation this summer.
Where does that leave the hospital specialist? Good practice apart, the most problematic issue in any move from hospital to primary care can be boiled down to four words: ‘Who’ll be in charge?’ This is not just about professional territory-marking. As the BHIVA document points out, doctors are legally responsible for the consequences of their prescriptions.
Ian Williams says that imposes a responsibility on doctors to draw up a good model for future HIV care. “If we don’t,” he says, “they’ll commission a bad one.”
Margaret Johnson is Ian Williams’ predecessor as Chair at BHIVA.
She says that, whatever happens, it will still be important that each patient should have, somewhere at the top of the pyramid, an HIV specialist who should be the ultimate supervisor of their care.
“There’s lots of evidence to show that being linked into expert care produces better outcomes. If, say, I was a diabetic I would want to know that even if I was stable I was linked to an expert in a regional centre who could make decisions if something went wrong.”
She agrees that patients with poor adherence and lifestyle issues might be better served by local care. “I agree 100% with Paul Ward. He’s throwing down a gauntlet and saying ‘things need to be better for the kind of patient who isn’t well served by the big clinics’.”
But she’s concerned about what will happen as people with HIV age, especially as ageing with HIV may look very different to ageing in the general population. “HIV patients are likely to get things like Chronic Obstructive Pulmonary Disease (emphysema) faster. When they get co-morbid conditions like that, the best place to link them to is the hospital where they get HIV services. What has worked well in HIV is the lack of compulsion about where you go.”
Paul Ward says we shouldn’t presume anything. “I don’t think we’ve collectively yet got an obvious model for the care of people with HIV as they get older. For the majority of the older public the GP is the primary care giver, why not HIV? Over the next 10 to 15 years we will acquire knowledge about how to handle HIV, and of course the specialists will have a role to play. What we need to do is change the model of service delivery beneath the specialist so that community services and GPs take on a greater responsibility for day-to-day care, thereby ensuring there is enough HIV specialist capacity to go round all people with HIV.”
HIV and GPs don’t always fit well together. A pilot programme in one London borough offered local GPs an extra payment if they performed the common blood tests for patients with HIV such as CD4 counts.
“All that happened,” says a local HIV consultant, “is that the patients still came to the hospital clinic for their blood tests, and we got pestered by GPs wanting the results so they could record them and get their extra money.” It’s important to weed out any perverse incentives like this from an integrated HIV care service.
One way of doing this is for GPs to get together and plan a joint service. One such programme is running in Brighton, where Jonathan Wastie is a local GP.
“A number of local GP practices in 2005 made a bid to the local commissioners to run what’s called a Locally Enhanced Service (LES) to look after the General Practice needs of HIV-positive people,” he says.
“We don’t do CD4s, viral loads or prescribe antiretrovirals (ARVs). What we do is offer a cardiovascular risk screen, treat high cholesterol and blood pressure, treat depression, provide safer sex advice, cervical smears and contraception, and annual flu jabs. We ask HIV-positive people round for an annual health MoT, and do annual mental health reviews with a psychology-trained General Practice nurse, treating any depression. There’s a pretty good pick-up rate. Patients can choose to have different levels of interaction with us; some just want a flu jab.”
How do they handle the confidentiality issue? “We never mention HIV in letters. We’ll say things like “As a patient at the Claude Nicole Clinic, you’re entitled to an annual general health check”. In my experience most patients are pleased we’re taking an interest. We are bound by the same confidentiality rules as an HIV clinic; you can’t disclose anything without the patient’s permission.”
One of the accusations levelled at GPs and primary care in general is that GPs have regarded HIV as a forbiddingly complex area.
“I think it’s about confidence in both directions. Patients need to feel confident in using their GPs, and GPs were unconfident in the days when HIV patients went to hospital clinics for all their needs. To join the LES GPs have to do a two-day course which covers HIV testing, confidentiality and disclosure, recognising HIV-related symptoms, and the different parts of the body affected.”
Stuart Rowe maintains that NHS chiefs will never force HIV patients to go to GPs and wouldn’t want to.
“You can’t replicate the critical mass required to deliver tertiary specialist services in a general practice. But if patients want to visit their local GP for routine visits rather than travel into the major centres, then we need to put in a system that will allow that to happen.”
