Policy paper

HIV Action Plan: annual update to Parliament

Published 7 June 2023

Applies to England

Acknowledgements

The HIV Action Plan (HIVAP) was jointly developed by the Department of Health and Social Care (DHSC) and UK Health Security Agency (UKHSA). We would like to thank the members of the HIV Action Plan Implementation Steering Group including:

  • Association of Directors of Public Health
  • BHA for Equality
  • British Association for Sexual Health and HIV
  • British HIV Association
  • English HIV and Sexual Health Commissioners Group
  • Local Government Association
  • National AIDS Trust
  • NHS England
  • NHS England HIV Clinical Reference Group
  • National Adviser, Lesbian, Gay, Bisexual and Trans Health
  • Terrence Higgins Trust
  • all members of the task and finish groups, and the HIVAP Community Advisory Group

Introduction

In January 2019, the government committed to an ambition to end new HIV transmissions, AIDS diagnoses and HIV-related deaths within England by 2030. Informed by the findings of the independent HIV Commission and building on the input and insight of a range of partners within the HIV Oversight Group, the government published the HIV Action Plan for England in December 2021. Developed jointly by DHSC and UKHSA, the HIV Action Plan sets out a programme of work across the health system to enable us to achieve our interim ambition of an 80% reduction in the number of people first diagnosed with HIV in England by 2025. 

Achievement of these ambitious commitments - including our interim commitments to an 80% reduction in transmissions by 2025 - is within our grasp, and we should be encouraged by the progress already made (see table 1 and figure 1). Despite the challenging backdrop of the COVID-19 pandemic, England has seen the lowest ever number of people living with undiagnosed HIV and has met the Joint United Nations Programme on HIV/AIDS (UNAIDS) 95-95-95 target for both 2020 and 2021. The UNAIDS 95-95-95 target refers to 95% of all people living with HIV to be aware of their status, 95% of those aware of their status to be on antiretroviral treatment (ART), and 95% of those on ART to achieve viral load suppression (which means they cannot pass on HIV).

However, progress towards elimination is uneven across different population groups. While we have seen a sustained fall in new HIV diagnoses in gay, bisexual and other men who have sex with men (GBMSM) in London, which in the context of high numbers of HIV testing among this group, reflects a fall in incidence, we are not seeing the same fall among GBMSM outside London. For heterosexual men and women of all ethnicities, new diagnoses fell between 2019 and 2021, but the number having an HIV test remained below pre-COVID-19 levels. However, the estimated number of undiagnosed HIV infection plateaued, and late HIV diagnoses increased, suggesting no evidence of a fall in incidence in this population. Diagnosis rates remain disproportionately higher among GBMSM and black African heterosexuals in comparison to the overall population and non-black African heterosexuals.

The progress made so far is a testament to the collective and ongoing efforts of many organisations across local government, the NHS and wider health system, statutory agencies, and the voluntary and community sector. The expertise and insight of the same organisations were instrumental in the inception of the HIV Action Plan (HIVAP).  

This document provides a brief overview of work undertaken towards the HIV Action Plan’s objectives during its first year in 2022 highlighting key achievements under each of the HIVAP’s objectives rather than a detailed report of each individual action. This report should be considered alongside the findings of the HIVAP Monitoring and Evaluation Framework (MEF), published by UKHSA, which tracks the progress towards the HIV Action Plan ambitions. The MEF published in December 2022 reported on data to end of December 2021. An update of the MEF will be published later in 2023.

The MEF assessment of the progress towards the objectives

If we are to meet the 2025 ambitions, we need to reduce the number of individuals diagnosed with HIV in England by 360, diagnosed with AIDS by 16 and HIV-related preventable deaths by 44, each year, from 2022 onwards. The ambition to end HIV transmission remains feasible and we have the tools and knowledge to achieve this goal.

As we continue to recover from the impact of COVID-19 on the HIV epidemic, it is vital that we exceed pre-pandemic levels of HIV testing, partner notification, pre-exposure prophylaxis (PrEP) and retention in care. Equally important is our work to ensure public health interventions are culturally competent and accessible across the diverse population living with HIV and people at risk of acquiring HIV.

We are proud to present to Parliament the progress made towards these objectives in the year 2022 to 2023.

This report also contains an Annex A from NHS England (NHSE) reporting on their first year of emergency department (ED) opt out blood borne virus (BBV) testing.

Table 1: summary table of progress towards interim ambitions in 2025

HIV Action Plan indicators 2019 baseline 2020 2021 Percentage change (2019 to 2021) 2025 interim ambition
Number of new HIV diagnoses first made in England 2,986 1,987 2,023 −32% 600
Number of people diagnosed with AIDS 216 169 171 −21% 110
Number of HIV-preventable deaths, estimated as 40% of all-cause deaths (see note) 233.6 325.6 289.2 +24% 115
UNAIDS 95-95-95 targets 94%-98%-97% 95%-99%-98% 95%-99%-98% Not applicable Not applicable

Source: HIV Action Plan MEF

Note: currently using an estimate of 40% of all-cause deaths (Croxford, SE and others. ‘Mortality among people with HIV in the UK in 2020: findings from the National HIV Mortality Review’. HIV Medicine. 2022; volume 23 issue S2: page 9). The new definition (Croxford, SE and others. ‘Recommendations for defining preventable HIV-related mortality for public health monitoring in the era of “Getting to zero”: an expert consensus’. Lancet HIV. 2023) will be implemented in the MEF to be published in December 2023.

Regarding the increase in deaths, it is likely that the rise in deaths was partly driven by improved reporting of deaths resulting from the National HIV Mortality Review, together with additional deaths due to COVID-19. The number of deaths in 2020 and 2021 were most pronounced in the months with the highest numbers of COVID-19 deaths, indicating the rise in deaths is unlikely to be HIV-related. Assuming 40% of deaths are HIV-related and preventable, corresponding to 289 for 2021, a reduction of 44 HIV-related deaths per year from 2022 onwards is needed to meet the 2025 ambition. Application of a pan-European definition of HIV-related, preventable mortality to replace the estimate of 40% all-cause deaths will allow better evaluation of progress towards the ambition.

Figure 1: progress towards ending HIV transmission, AIDS and HIV-related, preventable deaths by 2025, England, 2010 to 2021

Source: HIV Action Plan MEF

Figure 1 shows the number of new HIV diagnoses (declining), AIDS at diagnosis (steady) and all-cause deaths (steady) in England from 2002 to 2021, and the 2025 interim ambition points.

Governance

To enable robust delivery of the HIV Action Plan, a national HIV Action Plan Implementation Steering Group (HIVAP ISG) has been created and is chaired by Professor Kevin Fenton, who has also been appointed the government’s Chief Advisor on HIV. The national HIV Action Plan Implementation Steering Group includes all key partners, including the voluntary sector, and will ensure we drive forward progress in line with our aims.

The HIVAP ISG has met 4 times since publication of the HIV Action Plan and has commissioned 4 task-and-finish groups to support progress with:

  • PrEP access and equity
  • workforce
  • HIV control strategies in low prevalence areas
  • retention and engagement in care

Further to the stakeholder meetings undertaken by Professor Kevin Fenton, DHSC has created a Community Advisory Group (HIVAP CAG), chaired by the National AIDS Trust and the LGBT Foundation, to provide advice to the HIV Action Plan Implementation Steering Group through the lifetime of the HIV Action Plan.

Many areas of the country have replicated this national action regionally, providing leadership and oversight of work underway within local systems. This has seen:

  • regional HIV action plans developed in areas such as the South West
  • multi-agency working groups set up in the East and West Midlands
  • stocktakes of local HIV activity and action via sexual health networks in the South East and North East, and Yorkshire and the Humber
  • regional HIV action planning workshops as in the East of England and West Midlands

UKHSA has developed and piloted an HIV care pathway to support local areas in reviewing progress within their area and inform local action to improve outcomes and reduce health inequalities.

Objective 1: ensure equitable access and uptake of HIV prevention programmes

A major commitment within the HIV Action Plan was that government would invest over £3.5 million to deliver a national HIV prevention programme between 2021 and 2024 to raise awareness of HIV, sexually transmitted infections (STIs) testing and prevention strategies. This programme is mainly targeted at GBMSM and black African heterosexuals, as the 2 key groups at higher risk of HIV. During National HIV Testing Week 2023, almost 22,000 HIV testing kits were ordered - with self-testing kits (providing instant at-home results) available for the first time.

HIV Prevention England, the national HIV prevention programme, has also undertaken significant audience insight work to refresh the campaign materials to retain engagement and impact. The National HIV Testing Week campaign returned from 6 to12 February 2023 with a new strapline, I test. The I test campaign features positive, confident models showing the diversity of our target populations and normalises HIV testing as routine, beneficial, and something that everyone can take personal responsibility for.

Over the past year, HIV Prevention England has also delivered its fifth bi-annual conference, in addition to a number of briefing papers and conference summaries. All resources are available on the HIV Prevention England webpage.

Trends in the estimated number of people living with undiagnosed HIV from 2019 to 2021 for different exposure groups and different regions vary considerably. Estimates for GBMSM living in London have consistently declined between 2019 and 2021 (probability of decline 94%), in contrast to those for black African and non-black African heterosexuals, which have remained relatively stable over this period (probabilities of decline 71% and 55%, respectively). Outside London, the estimated number of GBMSM living with undiagnosed HIV also declined (probability of decline 2019 to 2021 83%). For black African and non-black African heterosexuals, estimates have remained largely stable between 2019 and 2021 (probabilities of decline 31% and 61%, respectively).

UKHSA published PrEP indicators to inform service improvement in PrEP commissioning and delivery and to help to identify ways to reduce health inequalities. The MEF reported that substantial variation exists in relation to PrEP need and uptake by population group, with London residents, GBMSM and people over 35 years old more likely to have PrEP need, to have PrEP need identified, and to initiate or continue PrEP compared to the rest of England, and other exposure groups and younger populations (see figure 2).

To improve PrEP access, the PrEP Access and Equity Task and Finish Group chaired by the Association of Directors of Public Health and Terrence Higgins Trust, have gathered evidence to understand why some key groups who would benefit from PrEP are underrepresented and to identify potential barriers and facilitators to access. Recommendations have been presented to the HIV Action Plan Implementation Steering Group and will inform the development of a HIVAP ISG roadmap to improve PrEP access and equity.

Figure 2: proportion of people with PrEP need identified and initiating or continuing PrEP among people with PrEP need by demographics: England, 2021

Source: 2022 HIV annual report

Figure 2 shows the proportion of HIV negative people accessing specialist sexual health services with PrEP need who:

  • had their need identified and initiated or continued PrEP
  • the proportion who had their need identified but did not initiate PrEP
  • the proportion who did not have their need identified

The chart shows that those with greatest need identified, without initiating PrEP are heterosexual men, young people aged 15 to 24, and people over 65. Those groups with greatest need not identified are women, particularly heterosexual and bisexual women, and heterosexual men. 2021 data is presented for England by region of residence.

The Sexual Health, Reproductive Health and HIV Innovation Fund supported projects that address inequalities and poor sexual and/or reproductive health outcomes and has supported 7 cohorts of projects since its inception in 2015. The fund was paused for the year 2022 to 2023 while an independent review was undertaken. The findings from the independent review were published in 2023, which were positive, and a resource repository including materials and project evaluations developed by all previous projects has been published on the UKHSA Sexual Health, Reproductive Health and HIV section of Knowledge Hub. Anyone can access this by registering on the Knowledge Hub website and then searching for ‘UKHSA Sexual Health’.

Objective 2: scale up HIV testing in line with national guidelines

As part of the HIV Action Plan, NHSE committed £20 million of funding over 3 years (2022 to 2025) to expand HIV opt out testing in emergency departments (EDs). The aim of this project is to identify new cases of HIV and reduce late diagnosis by reaching groups less likely to access testing via sexual health services, as well as to normalise HIV testing and reduce stigma.

HIV opt out testing in EDs was originally planned for the areas of highest diagnosed HIV prevalence: London, Brighton, Manchester and Salford, with Blackpool subsequently included. To further maximise the opportunity afforded by the HIV Action Plan funding for HIV opt out testing, NHSE decided to implement a combined blood borne viruses (BBVs) approach to include hepatitis B (HBV) and hepatitis C (HCV) testing alongside HIV testing in EDs. The ED BBV opt out testing project was launched in April 2022, building on existing ED testing in some sites.

NHSE published the report Emergency department opt out testing for HIV, hepatitis B and hepatitis C: the first 100 days on 29 November 2022 outlining progress, challenges, results and learning of the first 100 days of implementation.

An interim report on the full year of ED opt out testing is available in the annex to this report with the final report for 2022 to 2023 to be published by end of 2023.

The HIV Action Plan Implementation Steering Group continues to monitor progress in the first year of opt out testing in extremely high diagnosed prevalence areas (and Blackpool). DHSC will be sharing evidence as it emerges so other areas of the country can make the case for implementing the same approach locally.

The MEF reported that the number of people having an HIV test in sexual health services showed a partial recovery in 2021, following a 31% drop between 2019 and 2020. Notably, online testing played a central role in the recovery in testing between 2020 and 2021. However, 20% fewer people were tested in 2021 compared with 2019 and this recovery was not seen equally across different demographic groups (see figure 3). Among GBMSM, after a fall in HIV testing in 2020, the numbers tested in 2021 exceeded pre-COVID-19 levels. Among heterosexuals, HIV testing coverage remains substantially lower in 2021 than in 2019 and heterosexual women remain the group most likely to decline a test at specialist sexual health services (SHSs). Increasing HIV testing numbers to exceed 2019 levels, especially among heterosexual men and women is a priority if we are to meet the HIV Action Plan interim ambitions.

Figure 3: number of people tested for HIV and new diagnoses by service type, sexual orientation and gender: England, 2017 to 2021

Source: 2022 HIV annual report

Figure 3 shows that for all groups, specialist SHSs were performing the majority of HIV tests, with a sharp decline during COVID-19. In 2021, they delivered less than half of tests for all groups, with non-specialist SHSs, internet, performing more than half of tests for all groups. However, tests for heterosexual men in 2021 is half the number in 2019, whereas for GBMSM testing has recovered.

As part of their contribution to the HIV Action Plan, many regions have mapped HIV testing activity locally to establish a baseline of HIV testing against national guidelines and recommendations, including - as in Yorkshire and the Humber - understanding the level of HIV testing being undertaken across sexual health services, prisons, drug and alcohol services, abortion services, and antenatal services.

Objective 3: optimise rapid access to treatment and retention in care

UKHSA has led a series of developments in the metrics for assessing access to treatment and retention in care over the past year, deepening our understanding of HIV care and treatment.

Linkage to care within 2 weeks

In the HIV Action Plan Monitoring and Evaluation Framework, UKHSA presented a measure of the proportion of those people newly diagnosed linked to care within 2 weeks, in addition to existing metrics for linkage to care within 3 and 6 months.

To further support retention in care, UKHSA has developed 2 new measures of retention in care - those not seen for at least 15 months and those not seen within 5 years.

Retention in care

The latest data shows COVID-19 has exacerbated the number of people not retained in HIV care (with a 15-month gap since last HIV consultation between October 2019 and September 2020) and that despite a small recovery in 2021, the number of people not retained in care now exceeds the estimated number of people living with undiagnosed HIV (see figure 4).

UKHSA will continue to send information relating to people who had a minimum 15-month gap since last consultation within the last 5 years and not seen again to HIV care providers. This information will be used to support clinics to prioritise engaging patients not retained in care.

Figure 4: lower- and upper-level estimates for the number of people living with transmissible levels of virus, England, 2021

Source: HIV Action Plan MEF

Figure 4 shows the number of people estimated to be living with HIV with transmissible levels of virus in England in 2021. Both estimates predict that of a total number of people (11,965 for lower-level and 32,829 for upper-level), 4,400 of those are undiagnosed, 147 are not linked to care and 4,444 are not retained in care for the past 15 months. 1,195 are predicted to be in care but not on treatment, and 1,799 are predicted to be in care, on treatment but not virally suppressed. For the upper-level estimates, a total 2,618 people are estimated to be in care, on treatment but no evidence of viral suppression, and an additional estimated 18,226 people were not retained in care up to 2015.

Further work is underway by UKHSA to support care delivery including a review of face to face and virtual consultations in terms of patient demographics and clinical outcomes.

In addition, the NHSE adult HIV service specification (2013) is currently under review and development by a Specification Working Group, with the oversight of the HIV Clinical Reference Group, and in line with the national methods for the development of service specifications. It aims to support access to treatment, engagement and retention in care.

The development of the service specification will be followed by further work between NHSE and integrated care boards to identify solutions to support decision making around pathways and addressing barriers to care. The draft service specification is being prepared to go out to stakeholder testing.

ED opt out HIV testing is also making an important contribution to re-engaging those previously diagnosed back into HIV care - preliminary results for 2022 to 2023 show over 200 such people were found. Furthermore, the retention and engagement in care task and finish group will make further progress on this objective during 2023 to 2024.

Objective 4: improving quality of life for people living with HIV and addressing stigma

Many actions under objective 4 are planned for commencement in 2023 and 2024, although progress has been made in several areas.

An internal scoping review of the effectiveness of peer support for people living with HIV in England and the United Kingdom is in progress to identify existing evidence, and a rich network of providers is already in operation nationally. Standards for peer support have been set out by national bodies and a service specification is underway.

This work will be socialised with commissioners shortly for them to consider as part of their support to people living with HIV. In addition, the National standards for peer support in HIV have been set out by national bodies (Positively UK, British HIV Association (BHIVA), National HIV Nurses Association (NHIVNA), Children’s HIV Association (CHIVA), Terrence Higgins Trust (THT) and UK Community Advisory Board (UK-CAB)) in 2017, and peer support was included throughout the BHIVA 2018 standards of care for people living with HIV.

The development of peer support for people living with HIV is one of the 26 actions in the HIV Action Plan for Wales 2022 to 2026. As part of this, Public Health Wales has recently published a report including a systematic review of peer support for HIV, and qualitative research exploring the views on peer support of people living with HIV and service providers in Wales, that found that peer support was welcomed by people living with HIV and providers.

Reducing discrimination against, and stigma experienced by, people living with HIV in healthcare settings

A workforce task and finish group has been established by NHSE and DHSC to assess and take action on HIV awareness among healthcare workers. The group aims to make HIV awareness an element of every healthcare worker’s standard induction and regular mandatory training, including information on HIV transmission, U=U and infection control. We therefore aim to reduce HIV stigma from the healthcare workforce by improving their knowledge of HIV.

U=U stands for undetectable equals untransmittable. People living with HIV with an undetectable viral load cannot transmit HIV.

Monitoring stigma experienced and quality of life for people living with HIV

Positive Voices is a survey of people living with HIV and accessing care in the UK. It aims to identify factors that determine poor health outcomes and disparities among people with HIV. The findings will help inform patient-centred care and tailor the provision of HIV clinical and support services to better meet the needs of people with HIV into the future. The first Positive Voices survey took place in 2017 and the second survey, led by UKHSA and University College London (UCL), is currently underway. Recruitment of participants and data collection for Positive Voices 2022 are now complete and data analysis is underway. This latest survey will provide an up-to-date understanding of mental health and wellbeing, comorbidities, health service use and satisfaction, social care and support, unmet needs, stigma, quality of life and the impact of COVID-19 on people living with HIV. A full report will be published in December 2023.

In a workshop with the HIVAP CAG, UKHSA discussed the attributes of different stigma indicators (already collected in Positive Voices 2022) to select and refine indicators for stigma for the HIVAP MEF. These will be further improved in focus groups with stakeholders, including clinicians, experts and community representatives in 2023.

Conclusion

We are encouraged by the progress made in the past year towards our key objectives in the HIV Action Plan and underpinned by the MEF, thanks to the hard work of partners across England. The ED BBV opt out testing programme, as reported in Annex A, has been a particular success.

However, progress made towards the interim ambitions as set out in the HIV Action Plan has been adversely impacted by COVID-19, and recovery has been uneven in different demographic groups. Partner organisations across the system will assess and address these inequalities for our ambition to reduce HIV transmission to be realised.

We look forward to maintaining momentum through the work of the HIV Action Plan implementation steering group, task and finish groups and community advisory group to achieve our vision of ending new HIV transmissions within England by 2030.

Priorities for the year ahead

In 2023 to 2024:

  • we will develop a roadmap to improve PrEP access and equity
  • the Workforce Task and Finish Group will work towards improving information on HIV in general healthcare worker training
  • the Low Prevalence Areas Taskforce will provide advice on HIV control strategies in low prevalence areas
  • the Retention and Re-engagement in Care Taskforce will consider the factors affecting continuous engagement in treatment and provide advice to effectively retain people in care
  • UKHSA will continue exploring and refining indicators for stigma and quality of life for people living with HIV in collaboration with stakeholders including clinicians, voluntary and community sector and community representatives
  • UKHSA will update the MEF to explore new indicators and inequalities with publication anticipated in December 2023, to support efforts to understand and address inequalities in relation to incidence and testing

Annex A: BBV opt out testing in emergency departments, 2022 to 2023 by NHSE

Introduction

The emergency department (ED) blood borne virus (BBV) opt out testing initiative was created following the UK government’s launch of the HIV Action Plan on World AIDS Day 2021. The initiative included a commitment of £20 million over 3 years to roll out emergency department opt out HIV testing in the areas in England of highest diagnosed HIV prevalence.

The ED BBV opt out testing initiative was developed in response to the independent HIV Commission’s 2020 report focus of ‘test, test, test’, informed by evidence from previous ED opt out testing pilots, the Elton John AIDS Foundation’s Zero HIV Social Impact Bond project, and widespread campaigning by key stakeholders including Terrence Higgins Trust, National AIDS Trust and the Elton John AIDS Foundation. The NHS England Prevention team led on delivery and operationalisation of the BBV opt out testing initiative. The NHSE Prevention Programme partnered with NHSE’s hepatitis C (HCV) elimination programme to include hepatitis B (HBV) and HCV testing alongside HIV in ED sites to deliver BBV opt out testing in areas with the highest HIV prevalence.

ED opt out testing is both cost effective and may address health inequality barriers to access experienced by some groups less likely to proactively engage with, and receive testing via, sexual health services. It will therefore play a crucial part in achieving the government’s goals to end HIV transmission, in addition to contributing to the World Health Organization’s 2030 goals of zero transmission of HIV, and the elimination of viral hepatitis as a public health threat.

Year 1 implementation update

The initiative launched on 1 April 2022, with funding available for 34 Type 1 EDs, including:

  • all 28 EDs in London
  • 4 EDs in Manchester and Salford (Manchester Royal Infirmary, North Manchester General, Wythenshawe, Salford Royal NHSFT)
  • the Royal Sussex County Hospital in Brighton
  • Blackpool Victoria Hospital

NHS England London region took a decision to include all EDs in the project, which included some of which were in high HIV prevalence areas (with 2 to 5 cases of HIV per 1,000 residents).

The Blood-borne viruses opt out testing in emergency departments in London: best practice guide was developed to set out expectations for integrated care systems (ICSs) and trusts to deliver the programme, including defining the BBV test bundle profile, communication with patients, the opt out process, results management, governance and data collection. The opt out process is shown below, and the principles have been adopted into each hospital’s standard operating procedure.

BBV opt out testing best practice guidance: excerpt from chapter 3

Routine BBV testing in EDs should be implemented using an opt out approach. Key points in the implementation of the opt out strategy include:

  • all adults attending ED who are having blood tests for any reason should be routinely tested for BBVs unless they opt out
  • people should be informed about opt out BBV testing, including the option to opt out and how to do so, but pre-test counselling or consent is not required
  • people should be informed using clearly visible and accessible written information that is displayed throughout the ED
  • there is no expectation on ED staff to provide additional verbal information or reminders about BBV testing, but should they wish to do so, it may be helpful to include standard phrasing in staff training, for example: “We now routinely test everyone for the common viruses: HIV, hepatitis B and hepatitis C along with the other blood tests you are having in A&E. If you would prefer not to have these tests done today, you can opt out.”
  • the decision to opt out should be recorded in the person’s medical record
  • if someone opts out, they should be signposted (for example, through public facing information) to other ways to access BBV testing and support, including local sexual health clinics and home testing providers
  • BBV testing for someone who is unconscious or lacks capacity should be undertaken if it is in their best interests, in accordance with General Medical Council (GMC) guidance

All adults attending ED who are having blood tests as part of their visit are tested for BBVs unless they opted out, using an ‘assumed consent’ model, supported by patient facing information material. Specialist services (HIV, sexual health and hepatitis) manage all non-negative results and take responsibility for patient notification and linkage to care as shown in figure A1 below.

Figure A1: ED BBV opt out testing pathway

The flowchart shows a pathway for ED opt out testing that begins with banners in ED about BBV testing and how to opt out. The next stage is automatic BBV screening of all adults having blood tests unless they opt out. Stage 3 is automatic reporting of all non-negative results to HIV and hepatitis and stage 4 is HIV and hepatitis manage all non-negative results. Stage 6 is linkage to and re-engagement in care. Stage 7 is monthly site-level reporting. The final stage is a live dashboard accessible to providers and stakeholders. The BBV triple test is comprised of:

  • fourth generation HIV type 1 and type 2 antigen antibody
  • HBV surface antigen
  • HCV antibody with reflex HCV RNA on all positive antibody tests

BBV test uptake was maximised through the staff training, automation of BBV test ordering and blocking testing in repeat ED attendees. ED staff receive regular feedback on test uptake and cases identified.

Funding allocations

ICS allocations were modelled through consideration of the volume of 2019 ED attendances, and assumptions about likely percentage of attendees having blood tests, costs per HIV test, and resource implementation costs. ICS allocations are shown in table A1.

Table A1: funding allocations 2022 to 2023

ICS Participating hospitals HIV ICS funding allocated 2022 to 2023
North West London Chelsea and Westminster Hospital, West Middlesex University Hospital, St Mary’s Hospital, Charing Cross Hospital, Northwick Park Hospital, Ealing Hospital, Hillingdon Hospital £1,000,000
North Central London Royal Free Hospital, Barnet Hospital, North Middlesex Hospital, University College Hospital, The Whittington Hospital. £1,100,000
North East London Newham General Hospital, The Royal London Hospital, Whipps Cross University Hospital, Queen’s Hospital, King George Hospital, Homerton University Hospital. £1,115,000
South East London King’s College Hospital, Princess Royal University Hospital, University Hospital Lewisham, Queen Elizabeth Hospital, St Thomas’ Hospital £910,000
South West London Croydon University Hospital, St George’s Hospital (Tooting), St Helier Hospital, Epsom Hospital, Kingston Hospital £875,000
Greater Manchester North Manchester General Hospital, Manchester Royal Infirmary, Wythenshawe Hospital, Salford Royal Hospital. £900,000
Lancashire and South Cumbria Blackpool Victoria Hospital £180,000
Sussex Royal Sussex County Hospital £350,000

The London ICSs were also funded from April 2022 through the NHS England hepatitis C elimination programme to deliver ED hepatitis testing as a joint BBV testing approach. Greater Manchester ICS was funded separately to deliver hepatitis C testing from the start of the project, and the Royal Sussex County and Blackpool Victoria hospitals were successful in applications later in the year to obtain funding for hepatitis C testing.

Mobilisation and testing uptake

There was rapid mobilisation to roll-out testing in all sites and to drive up BBV testing uptake. At the end of year 1:

  • 33 ED sites are testing for HIV
  • 25 for HBV
  • 29 for HCV

Most sites were testing by December 2022 (see figures A2 and A3), with most remaining sites starting in the last quarter.

Figures A2 and A3: ED BBV testing in the first year: number of sites active and percentage uptake of testing

Figure A2 shows the number of sites active from March 2022 to March 2023 for:

  • HIV: from 20 to 33
  • HBV: from 2 to 25
  • HCV: from 6 to 29

Figure A3 shows the rising trend of testing uptake for every month from April 2022 until March 2023 for:

  • HIV: from 46% to 64%
  • HBV: from 9% to 38%
  • HCV: from 16% to 49%

In the first 12 months the project delivered over 1.65 million tests for BBVs (see table A2), comprising of 853,000 HIV tests, 346,000 HBV tests and 452,000 HCV tests. More HIV tests were undertaken because many EDs started with testing HIV, then progressed to testing for hepatitis B and C, and EDs outside London are not yet testing for hepatitis B.

By comparison, UKHSA reported that in 2019, 114,000 HIV tests were completed across all EDs and 1.3 million HIV tests undertaken in SHSs in England. ED BBV testing thus delivers a substantial increase in the overall number of tests undertaken.

Table A2: preliminary testing numbers and uptake

Event 2022 to 2023 Value
Total adult ED attendances 2,785,703
ED attendances with blood test for any reason 1,458,604
ED attendances with blood tests for any reason minus those blocked because had a recent ED HIV test 1,376,624
Total HIV tests performed 853,015
All reactive HIV tests (whether previously diagnosed or not) (see note) 6,448
Proportion of the number of HIV tests against the number of blood tests for any reason minus blocking (see note) 62%
Total hepatitis B surface antigen tests performed 346,041
Positive hepatitis B surface antigen tests 2,765
Proportion of the number of hepatitis B tests against the number of blood tests for any reason minus blocking (see note) 25%
Total hepatitis C antibody tests performed 452,284
Positive hepatitis C antibody tests 5,080
Proportion of the number of hepatitis C tests against the number of blood tests for any reason minus blocking (see note) 33%
Total hepatitis C RNA tests performed 4,686
Positive hepatitis C RNA tests 712
Proportion of hepatitis C RNA tests that are positive 15%

Notes:

  • the total of all reactive HIV tests includes those both previously and newly diagnosed and require confirmatory tests
  • ‘blocking’ refers to not re-testing someone who has already had a recent HIV test in ED

This table describes the number of ED attendances, the number of tests undertaken for each virus, and the percentage of the uptake of each test, found by dividing the number of tests by the total possible tests if all hospitals tested everyone who was eligible all year.

By the end of year 1, the testing uptake as a proportion of ED attendees having blood tests was 64% for HIV, 37% for HBV and 48% for HCV. HIV testing uptake across the 33 sites in March 2023 ranges from 6% to 96%, with 20 sites reporting testing uptake of over 70% on at least one occasion in year 1. A major factor in this variation is whether trusts have automated the processing for the BBV test in their Electronic Patient Records (EPR) system. Other factors that increase uptake are the presence of active ED champions, dedicated learning and support offered by members of the HIV team to ED staff and communicating the results of testing so that ED colleagues can see the benefit of the testing. NHSE is working with ICS colleagues to increase testing across all sites, with particular emphasis on those with the lowest rates.

Preliminary results of testing and engagement to care

In the first year ED BBV opt out testing has identified about 2,000 new diagnoses of BBV:

  • 343 people living with HIV
  • 1,186 people living with HBV
  • 465 people living with HCV (see table A3 below)

Opt out testing has also identified many people who were previously diagnosed with a BBV but not known to be in care:

  • 209 people living with HIV
  • 156 people living with HBV
  • 108 people living with HCV

These figures are subject to UKHSA validation, and new is defined as new to clinic and not disclosing that they are under care elsewhere.

Table A3: preliminary results April 2022 to March 2023

Event 2022 to 2023 HIV Hepatitis B Hepatitis C
Total positive tests 4,981 2,610 775 (RNA+)
Of which are new diagnosis 343 1,186 465
Of which are previous diagnosis but not in care 209 156 108
Of which are previous diagnosis and in care 4,396 681 135
Of which are reinfection Not applicable Not applicable 15
Notified of positive ED BBV result 712 1,175 465
Linked to or re-engaged in care 338 329 286
Offered (and accepted) community support 166 (74) 36 (12) 64 (16)

People identified as living with HIV but not in care, including people newly diagnosed, are rapidly linked to care. Two hundred and sixty-seven new diagnoses had been linked to HIV care and 71 people who were previously diagnosed but not in care had been re-engaged in HIV care in year 1.

Community support was offered at the first appointment to 166 people who were living with HIV but not in care.

Based on year 1 results from the ED BBV project, the estimated ‘number needed to test’ to find one new HIV diagnosis is 2,487, and the number needed to test to find one person living with HIV but not in care (new diagnoses plus previously diagnosed not in care) is 1,545.

Lessons learnt from year 1 of implementation

Rapid mobilisation was successful, however it did underscore the complexity of taking a whole systems approach and the challenges that this entails. Mobilisation has required significant changes in pathology labs processes, including the need for additional capacity in pathology and in some clinical services, with labs requiring both additional staff and analysers. The variety of pathology lab arrangements and commissioning has meant that each pathology network has required different solutions, and this introduced some delays in implementation, of which 2 areas are still outstanding.

Results management workflow has been challenging in some areas, especially in HBV where the numbers of people newly identified have exceeded expectation, causing some aspects of the pathway to be adapted, and the need for additional hepatitis nurses to be recruited in some places.

The large majority of the £6.75 million 2022 to 2023 HIV spend has been on testing costs. Testing costs vary across the different pathology networks and are in part dependant on the existing contract arrangements. Moving to a test bundle has been effective in reducing testing costs in many pathology networks, although there remains further work to align testing costs within one pathology network with those of the others.

Other spend has included project management and a small amount of clinical or administrative support at some sites, which has focused on providing training and support to ED colleagues, coordination of results management and reporting.

The importance of community services providing peer and other support has been highlighted, vital to both improving health and wellbeing outcomes and increasing retention in care rates. Hospitals have reported that 166 people either newly diagnosed with HIV or previously diagnosed but not in care were offered community support at the first appointment. This is out of a potential 338 either linked to or reengaged in care, of which 74 engaged. Some caution is needed in interpretation since people may have been offered community support at a subsequent meeting, and there may be some difficulties for clinicians to know whether people took up community services. This will be investigated further in year 2.

NHS England - London recommended that 10% of all funding be allocated to community organisations, and the same principle was endorsed for other areas in the 100 days report. This equates to between £87,500 and £115,000 per London ICS. There are challenges in splitting these funds to cover up to 7 different hospitals within the ICS, and different ICSs have explored different ways of engaging with community organisations. One ICS channels funding through the local authorities’ existing contracts with the community sector, other ICSs fund trusts to increase existing community services support, and others explore direct funding. Other services have already been providing community support and have absorbed the additional people found through ED BBV testing within their existing service. There are plans to explore a more pan-London approach.

Funding allocations were based on ED attendance forecasts from 2019 attendances. However, year 1 results suggest that ED attendances are increasing, which may create a cost pressure for ICBs on testing costs, which will increase as testing uptake increases at each hospital.

Evaluation and dissemination

NHSE launched the ‘100 day report’ in December 2022 highlighting the learning and challenges, which gave many case studies showing how individual services had implemented the project. This followed a very successful learn and share event in September, where 130 people came together to share their experiences and lessons of implementation.

Data collection was initially via a monthly site-level reporting tool, which proved time-consuming for staff to use. NHSE has developed a new reporting mechanism using the NHS data collection framework which will populate a dashboard to make reporting easier and more accurate. This will be made available via NHS Futures to all NHS staff interested and other key stakeholders.

NHSE has commissioned UKHSA and the University of Bristol to undertake evaluation of the project. This will comprise evaluation reports at 12, 24 and 36 months, with the University of Bristol undertaking an implementation report and an economic report. NHSE looks forward to their first report later in 2023. This interim 12-month evaluation will describe the implementation and uptake of the project to date, including numbers and proportions of eligible patients having a BBV test, diagnoses made, and treatment initiations for those newly diagnosed, or previously diagnosed and not retained in care or not seen for specialist care. It will also assess the feasibility of the proposed indicators to inform the development of the final evaluation protocol. This will include some comparison to the HIV and AIDS Reporting System (HARS) and sentinel datasets, which will enable some understanding of the demographics of those that are being identified with a BBV through ED testing and the potential methods of transmission.

Recommendations for year 2

In the next 12 months the project will continue to explore ways to evolve, support quality improvement and drive efficiencies. This will include:

  • supporting ICSs to increase BBV testing uptake across all sites with a target of 95% uptake of all those attendees having blood tests. This will include encouraging hospitals to fully automate their BBV requests for all people attending EDs and having bloods taken
  • supporting the BHIVA working group on assumed consent to develop a rapid guidance statement on assumed consent for ED opt out testing
  • developing best practice guidance for labs who are implementing the analysis of samples from ED BBV testing
  • continuing to disseminate our findings and learning including at conferences, learn and share events and webinars
  • advising areas that wish to start ED BBV implementation but are not included in the current funding arrangements, including reviewing business cases
  • developing additional guidance on community support provision through commissioning existing providers to develop best practice guidance
  • reviewing community provision across each ICS, and work with ICSs and voluntary, community and social enterprises VCSEs to ensure all those found to be living with a BBV but not in care receive comprehensive community and peer support. This includes exploration with Fast-Track Cities London of the possibility of a pan London collaboration of VCSEs
  • further developing our data collection and dashboard to maximise NHSE understanding of the impact of ED BBV testing
  • continuing to explore avenues to reduce costs, particularly of combined BBV lab testing
  • collaborating with the operational delivery networks to explore changing pathways to accommodate additional people identified through ED BBV testing as living with hepatitis B
  • working with UKHSA and University of Bristol colleagues to support their evaluation of the project

Conclusion

ED BBV opt out testing is effective in finding people who are living with BBVs but who are not in care and linking or re-engaging them into care, finding over 2,000 people in year 1. Learning from the COVID-19 response, NHSE adopted a highly dynamic and collaborative approach to rapidly implement a complex, multispecialty initiative at scale across 33 EDs, which delivered implementation at speed. The success of this initiative demonstrates the power of partnerships, system-wide collaboration and empowered communities.