Foreword

This is the third set of quality standards for the care of people living with HIV in the UK. It has been produced by the British HIV Association (BHIVA), in partnership with care providers, professional associations, commissioners and people living with HIV. The Standards cover eight key themes that address the most important issues for the care of people living with HIV. They have been derived from the best available evidence, and focus on aspects of care that are particularly relevant to the delivery of equitable, high-quality services that secure the best possible outcomes for people living with HIV.

Why has BHIVA developed these Standards?

Since the identification of HIV in 1983, there has been enormous progress in HIV treatment and care, with substantial improvements in both clinical outcomes and the lives of people living with HIV. Treatment outcomes for people living with HIV in the UK are among the best in the world and those who are diagnosed and treated promptly now have a similar life expectancy to the general population. At the same time, the increasing comorbidities of an ageing HIV population bring other challenges to the provision of excellent care. Recognition of the impact of effective virological suppression on transmission, alongside the emergence of other effective prevention interventions (e.g. pre-exposure prophylaxis [PrEP]) has resulted in improvements in sexual health and well-being as well as decreased transmission. The combination of the changing needs of patients and the current financial pressures make it very important that the care provided is both evidence based and value for money. The Standards provide a reference point against which to benchmark the quality of HIV care. Positioned alongside national and local policy and commissioning initiatives, we believe that the Standards will provide a framework to inform and support commissioning decisions both within and outside the NHS.

Who is the intended audience for the Standards?

People living with HIV should expect to have equitable access to consistently high-quality care no matter where they live in the UK. The Standards will inform people living with HIV, their carers and those who advocate on their behalf about the care that people should expect to receive when they access HIV services. A user guide is being developed to accompany these Standards.

The Standards will be particularly relevant to anyone involved in the provision of services for people living with HIV, with clear information on what is required and why, together with ways of measuring and auditing performance.

Innovative and informed commissioning decisions are required to meet the growing need for more efficient and cost-effective services, and the Standards will be a critically important resource for those with responsibility for the commissioning of services affecting people living with HIV. The Standards will provide an important source of information for the policy and commissioning framework for HIV-related services at national and local levels, including the national HIV service specification and the payment-by-results system of currency and tariffs for HIV treatment and care.

What do the Standards cover?

The Standards cover the range of care needed by people living with HIV from the time they first receive an HIV diagnosis. Standard 1 (Testing, diagnosis and prevention) promotes testing strategies that aim to reduce the proportion of people living with HIV who are unaware of their diagnosis or who present with advanced infection. It incorporates a section on the prevention of HIV.

Living well with HIV includes different aspects of well-being, dealing with HIV stigma, strong self-management skills, education and engagement in peer support, together with participation in decisions about all aspects of treatment and care, service design and delivery. Standard 2 (Person-centred care) focuses on these areas.

It is essential that people can access (and be retained in) specialist HIV care, as described in Standard 3 (HIV outpatient care and treatment). People living with HIV should also expect high-quality outpatient services and have confidence that appropriate systems are in place to ensure that antiretrovirals (ARVs) are prescribed and monitored safely (antiretroviral prescribing) wherever they live.

As people with HIV live longer, their health needs change, and both the numbers of comorbidities and the complexity of prescribing for multiple health conditions increase. Standard 4 (Complex HIV care) focuses on delivery of high-quality inpatient HIV services. It includes a separate section on comorbidities, co-infections and cancers, as well as highlighting the importance of supporting people with higher levels of need.

Standard 5 (Sexual and reproductive health) is about supporting people living with HIV to establish and maintain healthy sexual lives for themselves and their partners, highlighting the significance of virological suppression on transmission, and also covering the important and complex area of disclosure to, and testing for, potential contacts of infection. It aims to ensure high-quality reproductive and family health.

Living with HIV can take its toll on psychological and emotional well-being. Standard 6 (Psychological care) recognises the importance of providing care that promotes the mental, emotional and cognitive well-being of people living with HIV.

Standard 7 (HIV across the life course) recognises the diverse needs of people living with HIV at various stages in their lives; it brings together specific aspects of the standards that have particular relevance at different ages. It begins with young adults and adolescents, and spans young to middle adulthood and older age, in addition to highlighting the key issues for high-quality palliative care.

People living with HIV should expect to be treated by healthcare professionals who are up-to-date and fit to practise safely. Standard 8 (Developing and maintaining excellent care) sets out the competencies for a range of practitioners who may be involved with delivering care, and highlights the duty of all HIV services to maintain data security and contribute information to maximise understanding of the HIV epidemic in the UK.

Putting the needs of people living with HIV at the centre of service design and delivery will minimise morbidity and allow life to be lived to the full. Implementation of these Standards will be a major step towards achieving these aspirations for people living with HIV throughout the UK.

Fiona Burns, Co-chair
David Chadwick, Co-chair
Sheila Morris, Co-chair
Ann Sullivan, Co-chair