Introduction and background
HIV continues to be an important clinical and public health issue in the UK. Despite significant advances in antiretroviral treatment (ART) and consequent improvement in clinical outcomes, HIV remains a stigmatised and under-recognised condition that disproportionately affects already vulnerable populations. Gay and bisexual men, transgender woman, black African men and women, and people who use drugs continue to be disproportionately represented among people living with HIV. The biomedical, social, ethical and structural challenges associated with HIV all impact on the provision of care. The needs of people living with HIV, those affected by HIV and those at risk of acquiring HIV in the UK are particularly wide-ranging, cross many organisational boundaries and involve statutory and voluntary sectors within health and social care.
Numbers and context
In 2015 it is estimated that 101,200 people were living with HIV in the UK, of whom an estimated 13% were unaware that they were HIV positive (PHE 2016). The majority (96%) of those attending HIV clinics were on ART and of these 94% had an undetectable viral load. There were 6095 people newly diagnosed with HIV, and 39% of these new diagnoses were made at a late stage of infection. Late diagnoses (CD4 count <350 cells/mm3 at the time of diagnosis) remained particularly high among heterosexual men (54%) and women (48%) compared to gay and bisexual men (30%).
Effective ART reduces morbidity and mortality and increases life expectancy, with the result that more people are living with HIV for longer, often with increasingly complex medical and social needs. In 2016, 91,987 people living with diagnosed HIV were being cared for by NHS HIV clinical services in the UK, a rise of 3% compared to 2015 (and 65% over the past 10 years), with very high levels of retention in care.
The rate of HIV transmission from mother to child was just under 0.3% for the 2580 births to women diagnosed with HIV in 2012–2014, continuing the decline from 0.46% in 2010–2011 and 2.1% in 2000–2001.
Despite these advances, late diagnosis of HIV continues to carry significant risks of morbidity and mortality, reduced life expectancy and increased rates of hospitalisation. Despite the move to a policy of early treatment for all, the definition of late diagnosis (CD4 count <350 cells/mm3) is likely to remain pertinent, given its clinical correlation to risk of serious harm. Undiagnosed, untreated and the more-advanced stages of HIV facilitate onward transmission, compromising both individual well-being and the wider public health. Healthcare professionals in both primary and secondary care consistently miss and underdiagnose HIV, even in people who are symptomatic. Work funded by the Department of Health (between 2009 and 2010) has shown that broadening HIV testing and diagnosis throughout clinical and community environments in high-prevalence areas is both feasible and acceptable. Disappointingly these programmes have still not been widely implemented and embedded in routine care.
People with HIV are living into old age and older people are acquiring HIV, as they remain sexually active in later life. In 2016, more than one-third (38%) of adults accessing HIV care was over 50 years of age. Increased life expectancy results in an ageing HIV-positive population with above-average risk for cardiovascular, metabolic, bone and neurological problems, all of which are layered on top of an already complex medical condition. Chronic long-term condition management is becoming increasingly relevant to HIV care.
The combination of new HIV infections, increased life expectancy for people living with HIV, greater use of antiretroviral drugs and healthcare services, and changing comorbidities has increased HIV-related expenditure in the UK. The United Nations’ goal of 90-90-90 (that by 2020, 90% of people living with HIV will be diagnosed, 90% of those diagnosed will be on antiretroviral treatment and 90% of those receiving antiretrovirals will be virally suppressed) has been achieved in London, although other parts of the country are still to achieve the first 90, albeit meeting the subsequent targets. HIV service delivery must evolve to meet the challenges of increasingly constrained resources and the varying needs of a changing population of people living with HIV. HIV treatment outcomes and retention-in-care rates are among the best in the world within the current models of care in the UK, and whatever service models are implemented, maintaining and improving these outcomes must remain the top priority for all those involved in the commissioning and delivery of care.
Standards of care for people living with HIV in 2018
In 2007, BHIVA developed the first set of Standards for the clinical care of adults living with HIV, in collaboration with other stakeholders. The ensuing five years saw significant changes in the field of HIV as well as the commissioning and financial environment, resulting in the need for an updated version of the Standards, which was published in 2013. As the UK health and social arrangements continue to change, it is timely to update these Standards again, to include the latest recommendations for HIV care and ensure that they appropriately reflect the current needs of people living with HIV and remain relevant to all health services that provide HIV care.
In this document, we describe eight quality standards about the care that any adult living with HIV in the UK should expect to receive. Each standard presents a rationale, quality statements and measurable and auditable outcomes. Inclusion of outcomes does not imply that all of these should or will be audited; some may be best suited for national audit, but others are offered as suggestions for local or regional audit. The demography of HIV within the UK makes it very unlikely that there will be a ‘one-size-fits-all’ model of service delivery, and local arrangements and networks will be necessary to ensure that everyone living with HIV in the UK has equity of access to care that meets the appropriate standards. Clear care pathways into and through HIV services at local, regional and national levels are needed to ensure that people living with HIV can access the care that they need. Many people living with HIV have particularly significant social care needs that may impact on clinical care and potentially compromise well-being. Therefore, an emphasis on integrated and collaborative care is essential if best outcomes are to be realised. Joined up commissioning across the local health economy will be key to achieving these standards.
Scope of standards
We have developed standards of care for people living with HIV from acquisition, across the life course to end of life. Crucially, we include in this document people living with HIV who are as yet unaware of their HIV, as they are at significant risk of poorer health outcomes and inadvertent onward transmission. Testing for HIV is the key entry point for care, treatment and prevention services and is our starting point. The rate of new HIV infections in the UK remains high and the Standards emphasise the range of prevention options available, including the use of ARVs to reduce both HIV acquisition and transmission in the form of pre- and postexposure prophylaxis (PrEP and PEP) and treatment as prevention (TasP), highlighting the pivotal role of people living with HIV in prevention efforts.
As the health and social care landscape evolves, care for people living with HIV will be delivered by a range of service providers, with greater and lesser HIV specialisation and experience. This document gives guidance to all providers on the appropriate standards of care for people living with HIV, the competencies required, and the expected quality outcomes. The Standards need to be read in their entirety and interpreted in light of each other.
Person-centred care is paramount if services are to provide care for people living with HIV which is relevant, appropriate and accessible. To ensure equitable and non-discriminatory care these Standards highlight the pivotal role of HIV-related stigma in all aspects of care, treatment and prevention. They include standards for enhancing self-management, wellbeing and ensuring meaningful user engagement in service design and delivery. They incorporate the appropriate care and services that people living with HIV should be able to access to enable physical, psychological, emotional and social well-being to enhance quality of life and promote best health outcomes. Including a specific standard on wellbeing makes clear the importance of these aspects of people’s lives and highlights the contribution that care providers and people living with HIV can make to enhancing quality of life.
The Standards examine HIV across the life course, taking into account the key aspects of care for people at different stages of life, including young adults and adolescents, young to middle adulthood and older age. The optimisation of quality of life and relief of distress in serious, advanced illness is addressed under palliative care.
Maintaining and enhancing knowledge about HIV via both epidemiological/public health surveillance and research is a vital component of care and is included in this set of standards.
These Standards do not provide an exhaustive list but describe the minimum care that a person living with HIV should expect to be able to access. If services are to achieve these standards it will be necessary for providers to work collaboratively within network structures to ensure equity in access and provision for people living with HIV. It will also be dependent on all commissioners working collaboratively across the local health and social care economy, based on local needs assessments.
Aims of the Standards
The aim of these Standards is to define a minimum standard of care that a person living with HIV should expect to receive. It is intended that implementation of these Standards will help those living with HIV to achieve the best possible health outcomes and live well with HIV.
These Standards aim to inform:
People living with HIV about the expected standards of their HIV-related healthcare, social care, support and well-being
Service providers throughout the UK who are involved in any aspect of the delivery of healthcare to people living with HIV
Commissioners who have responsibility for commissioning health and social care for people living with HIV
This set of Standards has been written in the knowledge of the existing Scottish National Involvement Standards (2017), the Psychological Standards for adults living with HIV (2011), and the National Standards for Peer Support in HIV (2017) and aims to complement these publications. Although only applicable to England, the Standards have also been reviewed to ensure that they are consistent with the delivery of the five domains of the NHS Outcomes Framework (2017) and are in keeping with the ambitions of the NHS Quality, Innovation, Productivity and Prevention (QIPP) agenda while sustaining high-quality care (see Appendix 5).
Development of the Standards (for additional details see Appendix 4)
Input from a wide range of stakeholders has been sought to ensure that the Standards incorporate the key aspects of healthcare required to meet the needs of people living with HIV in the UK. The Standards reflect the views of people living with HIV, professional bodies, service providers, commissioners and advocacy groups. Although not intended to be an exhaustive list of all the aspects of care that a person living with HIV might need, the document seeks to set out those areas of care that are fundamental to high-quality outcomes.
The development of these Standards has included review and update of the 2013 Standards of Care; re-drafting of current standards and drafting new standards by Writing Groups led by a nationally recognised expert in the topic area; and consulting widely across all relevant stakeholders for feedback and comments.
To whom do these standards apply?
Everybody living with HIV in the UK should have equitable access to uniformly high-quality HIV care. These Standards are applicable to all adults living with HIV in the UK, including people in places of incarceration such as prisons and immigration removal centres. HIV treatment and care in the UK is now exempt from overseas charging regulations.
A population-focused approach for equitable access to and delivery of high-quality HIV care
Although the prevalence of HIV varies considerably across the UK, everybody living with HIV must have equitable access to high-quality treatment and care regardless of where they live or which providers they use. Clinical safety and service sustainability is dependent on a critical mass of staff, expertise and resources. Collaborative working arrangements within, and between, HIV service providers are essential for both equitable delivery of care and for maximising efficiency.
In parts of the country with a low prevalence of HIV, collaboration is required to ensure that comprehensive, safe and sustainable specialist care is available to all people living with HIV in the area. Where HIV prevalence is higher, providers will need to collaborate to ensure that services are streamlined and efficient and that duplication is minimised.
No HIV service provider (large or small) should deliver services in isolation. HIV care for populations should be planned and delivered through networks. There is no single model for network design and commissioners will need to work with HIV and other health and social care providers, as well as service users, to identify how networks facilitate the delivery of effective and efficient care locally, regionally and nationally.
Networks should facilitate integration of care between different providers and commissioners. The development of appropriate measures and tools to evaluate the patient experience across whole journeys of care and to respond accordingly will be vital to ensure success of networks.
Once determined, networks of care should be formally defined, care pathways described and clearly communicated so that people living with HIV, referrers and providers are all clear on the roles and responsibilities within networked arrangements.
Effective commissioning and delivery of healthcare for people living with HIV
Service provision needs to evolve in order to meet the changing needs of people living with HIV effectively and efficiently. Understanding the epidemiology of HIV across the UK is essential for service planning and delivery. Knowing how and why people living with HIV either do or do not use health and social care services is also required for effective service planning and commissioning to ensure optimal health outcomes.
Medical and social care for people living with HIV is commissioned by a variety of organisations, both nationally and locally. Effective provision of care for people living with HIV depends on these organisations working together efficiently.
Concerns about confidentiality have limited the use of identifiable data in relation to HIV. Currently, data on the use of HIV-specific services in England, Northern Ireland and Wales is submitted by clinical providers to Public Health England with limited identifiers and is shared as anonymous data with commissioners.
Language and terminology
The terminology used throughout this document is consistent with UNAIDS (2015) recommendations. Careful use of appropriate language, using terms that are clear and unambiguous, that put people first and that avoid perpetuating unhelpful stereotypes, is an important element of high-quality care.
The BHIVA Standards of Care are to support people living with, or affected by, HIV in leading the fullest lives possible with the best attainable health. Certain overarching principles underpin all aspects of these Standards:
1. People living with HIV should be at the centre of their own care, with the ability to have meaningful involvement in the development and delivery of services.
2. There should be equality of access to, and equity in provision of, health and social care for all people regardless of age, gender, sexuality, ethnicity, religion, physical ability, health literacy, immigration or residency status. HIV remains a stigmatised and socially complex diagnosis that disproportionately affects already marginalised population groups. People living with HIV should be provided with equitable and non-discriminatory care across all health and social care settings.
3. All patient-related information whether clinical, pseudo-anonymised or anonymous should be held securely in compliance with information governance standards and national legislation. People living with HIV should expect that only data that are useful for surveillance, commissioning, monitoring of care or research will be collected and the information will not be used for any other purpose.