Foreword
In 2018, the British HIV Association (BHIVABritish HIV Association (www.bhiva.org). BHIVA is a UK association representing professionals in HIV care. It publishes a range of clinical guidelines, covering the treatment and management of HIV and associated illnesses.) published its third update of the Standards of Care for People Living with HIV (2018 Standards).
What are the 2018 Standards?
The 2018 Standards cover the most important issues about care for people living with HIV.
They are written for three groups of people:
(1) Those responsible for providing care services (such as the NHS and local authorities)
(2) Those giving care (such as doctors, nurses and other healthcare professionals)
(3) Those receiving care (people living with HIV)
The 2018 Standards cover the range of care that can help people live well with HIV. They begin with HIV diagnosis and apply right through to end-of-life care. People living with HIV can expect to receive some or all of this whole range of care services at some point in their HIV journey. The 2018 Standards are very informative and detailed in over 100 pages, but sometimes the language used can be off-putting for people living with, or affected by, HIV. It makes it difficult to find what we should expect when accessing HIV care.
This guide is specially designed to give you, the person living with HIV, the key information you need about what you could expect when you receive HIV care. If you want more detail, then you can find that in the full 2018 Standards. You can access the full 2018 Standards from this website by going to the "Additional Information" heading in the main menu, and clicking on "Full 2018 Standards", or by clicking here. There is a link to the full 2018 Standards at the bottom of the left hand menu list.
Remember, though, as in other parts of the healthcare system, sometimes these standards may not be met. This gives you the chance to highlight any failings, with a view to improving care in the future. Some suggestions about who to speak to about this are given later.
What’s new in the 2018 Standards?
There are eight Standards that cover all aspects of HIV care, from HIV testing and diagnosis, to treatment, living well, and ageing with HIV. They also cover mental and emotional health, social care, support and wellbeing, as well as physical health.
Over the past few years, there have been three important developments in HIV.
(1) U=U
U=U stands for: Undetectable equals Untransmittable.
Having an undetectable HIV viral loadThis is the term used to describe the amount of HIV in your blood. The more HIV there is in your blood (and therefore the higher your viral load), the greater your risk of becoming ill because of HIV. All viral load tests have a cut-off point below which they cannot reliably detect HIV. If your viral load is below 50, it is usually said to be undetectable. Although there are more sensitive tests that can measure viral load to even lower levels, anything less than 50 is still called ‘undetectable’. on HIV treatment means HIV cannot be transmitted to your sexual partners, even without using condoms. Being undetectable means there’s too little virus in your body for you to pass it on. Even though someone on antiretroviral treatment (ART)ART: Anti-Retroviral Treatment. For most people, this means taking three or more Anti-RetroVirals (ARVs), though it may be fewer in some cases. ARV: Anti-RetroViral .This is the name given to the drugs used in Anti-Retroviral Treatment (ART). For many people, a single tablet can contain all ARVs needed for your treatment. But others may need to take more than one tablet. is still HIV positive, there is zero risk of HIV transmission sexually if you are undetectable. This protection, using ART, depends on you:
Being on stable ART
Having an undetectable viral loadThis is the term used to describe the amount of HIV in your blood. The more HIV there is in your blood (and therefore the higher your viral load), the greater your risk of becoming ill because of HIV. All viral load tests have a cut-off point below which they cannot reliably detect HIV. If your viral load is below 50, it is usually said to be undetectable. Although there are more sensitive tests that can measure viral load to even lower levels, anything less than 50 is still called ‘undetectable’.
Continuing to take your HIV drugs – antiretrovirals (ARVs) – every day.
This works with all HIV drugs. It is true for all types of sex. U=U is something that is important in many areas of HIV care. It is referred to many times in this guide.
(2) Starting ART and treatment as prevention (TasP)
There is clear evidence to show there are benefits to your health if you start ART as soon as possible after diagnosis. ART quickly reduces the amount of virus in your blood to a level where it cannot be detected – it is undetectable. This not only benefits your health, but also works well in HIV prevention. Once you have an undetectable viral loadThis is the term used to describe the amount of HIV in your blood. The more HIV there is in your blood (and therefore the higher your viral load), the greater your risk of becoming ill because of HIV. All viral load tests have a cut-off point below which they cannot reliably detect HIV. If your viral load is below 50, it is usually said to be undetectable. Although there are more sensitive tests that can measure viral load to even lower levels, anything less than 50 is still called ‘undetectable’., there is zero risk of passing HIV to your sexual partners – it is untransmittable. You can’t pass it on through sex. So, by starting ART as soon as possible, you are also helping with prevention. This is often referred to as treatment as prevention, or TasP.
(3) PrEP
PrEP stands for pre-exposure prophylaxis. It is a way for HIV-negative people to use HIV drugs to protect themselves against HIV. PrEP currently consists of two HIV drugs (tenofovir disoproxil fumarate (TDF) and emtricitabine (FTC)) in one pill. You may know this medicine by its brand name, Truvada. There are also generic forms of the drug with the same active ingredients, which are just as effective. For the highest levels of protection, PrEP needs to be taken either daily or before and after sex as instructed. It is a very effective method of protection against HIV.
There has been a dramatic decline in the number of new cases of HIV in the UK over the past 2 years. This is a result of these three developments (U=U, TasP and PrEP), together with increased and regular HIV testing. This is sometimes referred to as combination prevention.
How this guide to the 2018 Standards was developed
The 2018 Standards were developed and written with a lot of input from the community. The community representatives on the steering group of the 2018 Standards highlighted the need for a version aimed specifically at those receiving care. They subsequently led the project to develop this guide. The steering group for the guide was co-chaired and led by community members. Funding was applied for and obtained from the MAC AIDS Fund. The guide was also written by community members and carefully reviewed by the teams who wrote the 2018 Standards.
How to use this guide
The guide follows the 2018 Standards, but it is written solely for those receiving care. It is not written for healthcare professionals or providers. It lets you know what you can expect in terms of your healthcare by focusing on quality of life and living well with HIV. The guide uses the same section naming and numbering as the 2018 Standards, to make it easy to find the relevant section in the 2018 Standards if you are looking for more background or details about a particular section. There is a link to the relevant section of the full 2018 Standards at the bottom of each section of this Guide.
You do not need to read this Guide from beginning to end. Each Standard looks at a different topic, and there are sections within each Standard, which you can see by clicking on the Standard in the left hand menu. Each section of each Standard should be fairly self-contained, so you should be able to find your way to the topic that interests you at any given time.
There is a Glossary that explains some of the less commonly-used terms in this Guide. These are shown like thisAn explanation will appear, and if you "hover" with your mouse over these terms, a pop-up explanation will appear, so that you do not need to go to the Glossary.
It is hoped that you find these Standards are being met in the care that you receive. But as all parts of the NHS and social care services are under strain, it may be that these Standards are not always being met. If that is the case, then you could:
Talk to your HIV doctor or nurse or other healthcare professional about any issues you have – it might be that they can be easily fixed. You could use this guide or the 2018 Standards to help with such a discussion.
Talk to your local HIV support organisation about your concerns. They may be able to raise issues on your behalf with those who set up services. In reality, some issues might take a long time to remedy. However, these Standards give us something to work towards. Their aim is for better ongoing provision of care for all people living with HIV in the UK.
Please tell the UK-CABThis is a network for people living with HIV who have a strong interest in HIV treatment and related issues, and who want to make sure people living with HIV are actively involved in all aspects of HIV treatment and care. This is called treatment advocacy.. Click on the "Additional Information" tab at the top of the page, and select "Surveys". There is a simple form there to fill in. Or you can click here to go directly to the survey. The UK-CABThis is a network for people living with HIV who have a strong interest in HIV treatment and related issues, and who want to make sure people living with HIV are actively involved in all aspects of HIV treatment and care. This is called treatment advocacy. is a network for people living with HIV who have a strong interest in HIV treatment and related issues, and who want to make sure people living with HIV are actively involved in all aspects of HIV treatment and care. This is called treatment advocacy. They would like to monitor and collate the experiences of people using HIV services against these Standards. Responses will be collected until the end of 2021. But neither BHIVABritish HIV Association (www.bhiva.org). BHIVA is a UK association representing professionals in HIV care. It publishes a range of clinical guidelines, covering the treatment and management of HIV and associated illnesses. nor the UK-CABThis is a network for people living with HIV who have a strong interest in HIV treatment and related issues, and who want to make sure people living with HIV are actively involved in all aspects of HIV treatment and care. This is called treatment advocacy. will be able to help you directly with your specific issues. The form does not ask for your name or identifying details, nor which clinic you attend.
Feedback on this guide
We hope you find this guide helpful. It would really help us to know if anything needs improving, though. We would welcome your feedback. There is a really quick survey that is easy to fill out, with space for your comments as well. To find the survey, please click on the "Additional Information" tab at the top of the page, and select "Surveys". Or you can click here to go directly to the survey.