HIV Engagement (HIVE) project

Supporting people to access effective treatment is one of the most important ways to reach our 2030 goal to end HIV transmissions in Wales, and to improve the health and wellbeing of people living with HIV.

Introduction:
The HIV Engagement (HIVE) project was launched in Cardiff and Vale in 2023 to focus on engagement with HIV care. Supporting people to access effective treatment is one of the most important ways to reach our 2030 goal to end HIV transmissions in Wales, and to improve the health and wellbeing of people living with HIV.

The HIVE project has been funded by Gilead and will run from March 2023 – December 2024. It is a collaboration between Cardiff and Vale University Health Board, Cardiff University and Fast Track Cardiff and Vale.

The main aims of the project are:

• To identify people who are not currently accessing HIV care in Cardiff and Vale, and to understand what proportion of our cohort have an undetectable HIV viral load (ie are virally suppressed).
• To pilot the new role of HIV Engagement Support Worker, to support people to engage, collecting data on patient characteristics, barriers to engagement as well as patient opinions on service delivery.
• To develop a multiagency local network of NHS and community partners, working innovatively and collaboratively to reengage patients and optimise outcomes.

Our team:
Jane Nicholls and Laura Cunningham – HIV Consultants and Project Leads; Jennifer Lewis – Project Co-ordinator; Matthew Macleod – HIV Engagement Support Worker; Adam Williams – Academic Lead; Kymberley Eltringham – HIV Engagement Admin Support/HIV Clinic Co-ordinator.

Progress to date:
Quarterly data collection is in progress and we already have a much better understanding of who might benefit from additional support to engage with care. Final data will be analysed and presented in January 2025. We have already seen a significant reduction in the number of people who are not in care, or who have barriers to attendance. Our HIV Engagement Support Worker has been in post since December 2023 and has been busy getting to know patients, colleagues and stakeholders. He has already developed relationships and pathways that have enabled a significant number of people to access HIV care, sometimes after many years of disengagement. See FTC Conference Poster.

Model of care:
We have conducted our HIVE Patient Survey to gather the views of our service users on the service and barriers to accessing care. The first phase was conducted in clinic and the second phase will survey those who are not currently in care. See HIVE Survey Report.

We have held 2 in-person HIVE Stakeholder engagement events in October 2023 and June 2024 with a total of over 80 individuals attending from a range of organisations across Cardiff and Vale and including Positive Speaker sessions from local people who are currently living with HIV. See HIVE Stakeholder reports; and also see FTC Conference Poster.

We are partnering with the new Living with It HIV support group to develop a co-production model for HIV services in Cardiff and we have an active group of committed service users who are kindly supporting the project.

We have presented interim findings at the South West and Wales HIV Association, and in October we will be presenting at the BASHH Cymru meeting and at the Fast Track Cities 2024 Conference in Paris.

Next steps: We hope to present our final data and evaluation at BHIVA/NHIVNA conferences in 2025, as well as to local stakeholders and decision-makers. This work forms part of local implementation of the Welsh HIV Action Plan 2023-2026 and in 2025 we intend to formalise a permanent engagement model within Cardiff and Vale, working in collaboration with NHS, statutory and community stakeholders, informed by the findings of this project.

Do you want to know more or get involved?

If you are interested in getting involved with the project or want more information, please get in touch:

• Laura.cunningham@wales.nhs.uk
• Kimberleyeltringham@wales.nhs.uk