Gus Cairns summarises this important new document.
The British HIV Association (BHIVA) is issuing a new set of standards for the care of people living with HIV.1 The final version will be launched in time for World AIDS Day 2012. Here we’re reviewing the draft version which is, at the time of writing, up for public consultation – which means there may be changes in the final published version.
The new standards represent a radical departure from the previous set, issued in 2007, which were primarily concerned with how HIV care in England and Wales should be structured. The new standards place less emphasis on where people with HIV should get care, and more on what care they should receive.
BHIVA comments in the supporting text accompanying the consultation draft: “In the ensuing five years there have been significant changes in the field of HIV as well as in the commissioning and financial environment. Changes to the structure of the NHS mean that people living with HIV may access many different health services and organisations delivering health care.
“The  standards [should] appropriately reflect the current health care needs of people with HIV and are relevant to all health services that may provide their care.”
BHIVA issued the original clinical standards because it was recognised that while they had been issuing clinical guidelines on what treatment patients people with HIV should receive since the 1990s, (with the latest version issued this March and published in July2), many other factors, aside from which medicines were used, go into the success or failure of treatment and care.
The 2007 standards3 sought to establish a minimum level of expertise, resources and support for different levels of patient need, recommending three different levels of HIV care – primary care (largely about testing and sexually transmitted infections), HIV clinics with outpatient care, and HIV centres with inpatient beds – with properly managed clinical networks.
The landscape for HIV treatment has changed considerably since then, and so has the NHS. The health of a person with HIV will be the responsibility of an increasing variety of providers, for a number of reasons:
- The success of HIV treatments and their standardisation (see The generic generation);
- The drive for wider HIV testing and stronger links with primary care in order to facilitate it;
- The split between national commissioning for HIV treatment and local authority management of HIV testing and STI care;
- The increasing proportion of people with HIV who will need old-age care (see A healthy – and happy – old age with HIV);
- The fact that sexual health and HIV testing services in England could be run by commercial providers.
BHIVA has recognised that standards specifying what should be provided are probably more urgently needed than ones that specify how.
At the launch of the new draft standards, Professor Jane Anderson, Chair of BHIVA, said: "We are at a crucial clinical and political juncture. Systemic [NHS] reforms coming into effect in April 2013 bring a risk of fragmentation of a highly effective and cohesive area of medicine, which would be a major setback in the UK response to HIV.
“To secure the current high quality outcomes for HIV care, reduce new infections and reverse the current health inequalities associated with HIV, many different elements need to come together as a cohesive, well planned and executed programme that is both locally responsive and nationally appropriate.”
The new standards comprise “a specific, concrete set of statements about the care that an adult living with HIV in the UK should expect to receive”.
The new standards
There are 12 separate standards. An introduction emphasises that, like the previous standards, they are about “the ways in which people with HIV should be able to access appropriate services” – although they add that, this time, they explicitly include the undiagnosed.
It again emphasises the importance of networks of clinical services: “No HIV provider…should deliver services in isolation. HIV care should be planned and delivered through networks.” However, it adds, “there is no single model for network design,” abandoning the three-step model of the previous document.
This lack of one-size-fits-all care means that communication between healthcare providers and with the patient becomes even more important. Here the new standards make a recommendation that may be controversial – which is that, from now on, HIV clinics start tagging the records of their patients with their unique NHS identity number (the one that appears on the NHS card you get when you register with a new GP). Until now, data on the use of HIV-specific services have been submitted by clinics and GPs to the Health Protection Agency and are only shared as anonymous data with commissioners.
“As the delivery of healthcare becomes increasingly shared across a number of NHS clinical areas and providers,” the standards say, “so the effective linking up and flow of information becomes ever more important.”
The 12 standards themselves are each laid out in three sections: a rationale, a set of ‘quality statements’ – that is, minimum standards that should be achieved – and outcomes that could be measured to see if those standards are being achieved. They concern:
- HIV testing. This standard mainly reiterates the call of the 2008 BHIVA testing standards4 to provide HIV testing in a variety of different settings and for all GP registrants in areas where more than one in 500 adults has HIV.
- Access to and retention in treatment. This reiterates the previous standard that anyone with an HIV diagnosis should be seen by an HIV specialist within two weeks, and within 24 hours if they have symptoms suggestive of AIDS or acute HIV infection. It adds that clinics should have arrangements for tracing people registered with them who disappear from care, and should be able to offer an alternative doctor if a patient is unhappy with theirs. Although they say that “unmet financial and social care needs are common in people with HIV” and that clinics need close links with social, legal, benefit, voluntary sector and peer support agencies, they don’t suggest an auditable standard for the quality of a clinic’s links with such agencies.
- Provision of outpatient care, including for complex co-morbidities. ‘Complex co-morbidities’ means anything from viral hepatitis through cardiovascular disease to psychiatric illness. This standard emphasises the importance, for patients’ safety above all else, of good communication between the HIV clinic and patients’ GPs and any other specialists. Its auditable outcomes include targets for screening for HIV drug resistance, viral hepatitis, blood pressure, smoking history, kidney function and cardiovascular risk. It also stipulates that there should be at least annual contact between a patient’s HIV clinic and their GP and that surveys of patient satisfaction should be carried out at least every three years.
- Safe antiretroviral prescribing. This section concerns adherence support, doctors’ competence to prescribe ARVs, mechanisms to check with GPs to guard against drug interactions, and sets, among others, a target of 80% for the proportion of patients who have disclosed their HIV status to their GP. It also explicitly states that “HIV services should collaborate with commissioners to develop strategies to maintain cost-effective prescribing.”
- Inpatient care. This points out that most deaths due to HIV disease these days are due to people presenting very late with AIDS and specifies maximum admission times, infection control measures, and expected qualifications for HIV physicians involved in inpatient care for acutely ill people.
- Psychological care. Pointing out that studies show strong links between adverse life events (including diagnosis and starting treatment), emotional turmoil, and downturns in adherence and physical health, this standard recommends routine and event-triggered screening for depression, anxiety, brain impairment, drug and drink problems and stress levels. It refers to last year’s Standards for psychological support,5 published jointly by BHIVA, the British Psychological Society (BPS) and the Medical Foundation for AIDS & Sexual Health (MedFASH), for other delivery standards in this area.
- Sexual health and secondary HIV prevention. This says that sexual health assessment should be offered within four weeks of diagnosis and annually thereafter, with more frequent syphilis screening in gay men, by a practitioner with specific knowledge of HIV transmission risk and sexual behaviour and behaviour change. It also says that people diagnosed with HIV should be helped with the screening for HIV of any children they have and with partner notification. It specifies risk-reduction counselling within four weeks of diagnosis and appropriate referral to further support if necessary. It recommends that post-exposure prophylaxis (PEP) be made available to HIV-negative notified partners, but makes no recommendation for pre-exposure prophylaxis (PrEP).
- Reproductive health. In line with the soon-to-published 2012 NICE guidelines on fertility treatment,6 this standard does not mention sperm washing as a recommended measure for couples seeking to have children when the father has HIV, saying instead that “timed unprotected sexual intercourse for men…on successful ARV therapy” is as safe. In cases where the woman has HIV, it recommends self-insemination. It says that people with HIV should have the same access to fertility and conception services as anyone else (see How are we going to have a baby?).
- Self-management. This section says that people living with HIV should have access to services that promote self-management of HIV. It primarily emphasises the benefits of one-to-one and group peer support and peer support schemes by appropriately skilled peer workers with HIV, both in person, on the phone and online. It does, however, also highlight the valuable part occupational therapists and physiotherapists may play in helping people feel more able to manage their daily lives and suggests ongoing auditing of patients’ wellbeing to assess the success of self-management promotion.
- Service user engagement. This standard takes much of its text from the “Patient involvement in decision making” section of the 2012 BHIVA treatment guidelines. It says that people with HIV “should be as actively involved in decisions relating to their own treatment and care as they wish” and should have opportunities to be involved in the planning of HIV service delivery. It specifies that all formally constituted boards should have a community representative on them and that “HIV services must be able to demonstrate that they have an active patient group or patient representative either locally or regionally within a network arrangement.”
- Competencies. This sets out the minimum training and experience needed for practitioners at different levels of HIV care.
- Data, audit and research. This brings together recommendations in the other standards for information flow, auditing practice and research and recommends maximum times for the sending of surveillance data. It reiterates the recommendation that “All NHS services involved in the care of people with HIV should ask and encourage them to consent to the use of their NHS number for data linking.”
The final version of the standards will be launched on 29 November this year. We will report any significant changes to the consultation draft on aidsmap.com.
- See www.bhiva.org/standards-of-care-2012.aspx
- Williams I et al. Guidelines for the treatment of HIV-1 positive adults with antiretroviral therapy 2012. HIV Medicine, 13 (Suppl. 2), 1-85, 2012. See www.bhiva.org/TreatmentofHIV1_2012.aspx
- See www.bhiva.org/standards-of-care-2007.aspx
- See www.bhiva.org/HIVTesting2008.aspx
- See www.bhiva.org/StandardsForPsychologicalSupport.aspx
- See www.nice.org.uk/nicemedia/live/12157/59278/59278.pdf