The impact of HIV on people’s lives is changing. Advances in treatment mean that many people with HIV are now able to live long, healthy lives. At the same time, prevention continues to be important but is complex as the at-risk population groups are diverse and need different approaches.
Alongside the changing nature of HIV infection, reforms implemented by the Health and Social Care Act 2012 have made the arrangements for planning and overseeing HIV services complex, with responsibilities divided across many organisations. HIV services need to change, but the fragmented responsibilities mean that it is now harder to plan and agree change across local health systems.
What did we do?
We carried out a major independent assessment* of the state of HIV services in England, with the aim of making recommendations about how services need to change to meet the needs of more than 100,000 people living with HIV in the UK. This culminated in a report, launched at a major conference in April 2017 where more than 180 delegates discussed our findings and shared ideas for practical actions for planning HIV services in the future.
The report built on previous work to involve patients in our research. Involving people living with HIV in designing the research and shaping the recommendations gave us a real insight into the challenges of being at the centre of a very complex health and care system and how services could develop to ensure the best possible quality of life for people living with HIV.
What was the impact?
This project helped us to enhance our approach to involving patients in our work, by showcasing the value that they can add and ensuring that we have a rigorous framework of supporting policies and processes.
The conference helped raised the profile of HIV services:
The research itself made a significant impact in the understanding of HIV as a long-term condition that increasingly affects people living into older age, as well as younger people, and the need to engage primary care and social care in HIV services as well as specialists. Influenced by the report, NHS England is taking forward recommendations to trial new service models and to reduce stigma about HIV in the NHS – an area of continuing concern that had no clear lead responsibility. The report has been drawn on widely in local service development, especially in London, where we highlighted an exceptionally complex distribution of responsibilities, and in national initiatives, for example, in relation to workforce planning.
*This project was funded by a grant from the M·A·C AIDS Fund, a charity established to support people living with HIV/AIDS worldwide. The King’s Fund was entirely responsible for independent research, analysis and reporting of the project.