Established in 2023 to respond to some of the challenges experienced by the diverse communities living with HIV in the UK, HIV Outcomes UK is a coalition of HIV experts who work to secure policy, practice and evidence changes to improve the health-related quality of life (HRQoL) for people living with HIV in the UK. We are proud to serve as co-chairs, working alongside many cross-sectoral leaders in the UK’s HIV response, The National AIDS Trust and our sponsors ViiV Healthcare and Gilead Sciences.
We know that there are glaring disparities in progress on HIV prevention and treatment outcomes between different groups. Certain groups are more likely to be diagnosed late, to not be in HIV care, and to experience worse health outcomes.
HIV Outcomes UK has now completed its work programme for 2023-2024, the first full year of the project. Whilst barriers remain that prevent some communities of people living with HIV from having a good quality of life, we should also consider the progress that the UK has made before listing the work that is still left to be done.
Working together with our partners, we have focused on tackling stigma as a barrier to care, steering better HIV care engagement, highlighting the mental health needs of people living with HIV, and improving approaches to information, data, and confidentiality in the NHS.
We have focused on tackling stigma as a barrier to care; driving better HIV care engagement; better meeting the mental health needs of people living with HIV; and improving approaches to information, data and confidentiality in the NHS.
Highlights from the previous 12 months include:
- Publishing a report that has explored the synergies between the HIV response and the approach taken by the NHS in addressing health inequalities. We are pleased that key NHS stakeholders have supported our report. This has led to closer partnership with several NHS Integrated Care Boards, with some reviewing their local HIV services and commissioning initiatives in line with our recommendations.
- Organising a successful parliamentary event in partnership with the APPG on HIV and Sexual Health that explored ending inequalities, living well with HIV and the Positive Voices 2022 report. The panel brought together community leaders and key decision-makers for the HIV response, and it was very well-attended by parliamentarians.
- Organising two successful workshops in Wales and Scotland which brought together key stakeholders in the HIV responses in these devolved nations to explore issues around improving mental health services and living well with HIV. The workshops have informed the development of two policy reports which will be published in the autumn.
- Supporting the development of the ‘Breaking barriers in HIV care programme’ e-learning module and creative campaign to support HIV literacy among NHS Talking Therapies practitioners.
- Incorporating feedback from the National AIDS Trust and HIV Outcomes UK Steering Group members in the Department of Health and Social Care’s guidance on patient confidentiality on sharing information on STI and HIV.
What’s next for HIV Outcomes UK?
Whilst HIV Outcomes UK has made progress in pushing the UK Government, parliamentarians and health boards to improve the HRQoL of people living with HIV, significant barriers to living well with HIV remain. The growing inequalities in the HIV response are unacceptable, and we need the Governments of the UK to respond to what the data and experience of people living with HIV is telling us.
The next 12 months will present key opportunities for the UK to tackle HIV inequalities and ensure that communities can live well with HIV. The newly elected UK Government will be developing a new HIV Action Plan for England, the devolved nations of the UK will be advancing delivery of their HIV and sexual health strategies, and all NHS Integrated Care Boards in England will have delegated commissioning of HIV services from April 2025.
Whilst the devolution of HIV commissioning to Integrated Care Boards could introduce welcome changes that help to ensure that systems are more responsive to the HRQoL needs of local populations living with HIV, it is by no means a given. There is a risk that HIV services will not be prioritised, particularly in low-prevalence areas, and that variation in care across England will become entrenched. Responding to this, HIV Outcomes UK plans to develop resources to support Integrated Care Board’s commissioning, to organise a conference connecting NHS leaders, and to increase our engagement with Integrated Care Boards so they are responsive to our recommendations and priorities of local citizens living with HIV.
It is clear that HIV Voluntary, Community, and Social Enterprises (VCSEs) play an instrumental role in supporting people to live well with HIV and drive the delivery of the HIV strategies of the Governments of the UK. But with funding cuts, ill-planned changes to commissioning and VCSEs needing to respond to complex needs of some communities, the sector is under significant pressure. This year HIV Outcomes UK will conduct an inquiry and collate a report exploring the contribution of and the challenges facing HIV VCSEs. Our research will inform a campaign that will push decision-makers to show the necessary leadership to support communities to live well with HIV. In the coming weeks, HIV Outcomes UK will share more information on the research and how communities and organisations can get involved.
Get involved
As co-chairs of HIV Outcomes UK, we are incredibly grateful for all the support and partnerships that the UK HIV sector has provided us. With growing inequalities and barriers remaining to prevent people with HIV from having a good quality of life, HIV Outcomes UK looks forward to strengthening our partnerships with communities, clinicians, researchers and other key stakeholders in the year ahead. Please join our newsletter here and if you would like to discuss our planned projects and get involved, please write to [email protected].