Alex Baylis on the quality of HIV care

Posted 03 May 2017

Date: 03 May 2017

Author: Alex Baylis

Alex has been leading a King’s Fund project on the future of HIV services in England, reviewing the current landscape of responsibilities and service models for HIV and looking at how services will need to adapt to meet future policy and funding developments and to reflect the changing needs of people living with HIV. In this month’s blog, Alex shares key findings from the project. He concludes that action is needed now to coordinate, plan and co-produce future services if the quality of HIV care is to be sustained and identifies system leadership at national and local level and strong relationships and joint processes between local stakeholders as critical factors in making this happen.

Photo of Alex Baylis for FSRH April 2017 Blog postThe quality of HIV care will be at risk if action is not taken to coordinate, plan and co-produce future services – that is the clear message from our new report, The Future of HIV Services in England (1).

The report, which reviews the current situation and makes recommendations for HIV services and national bodies, offers an insight into the impacts of the Health and Social Care Act 2012, three years after these reforms came into place.

We reviewed literature and data, and studied the HIV ‘pathway’ in depth from prevention to on-going care. We did this in three very different areas, and across London. People living with HIV had prominent roles in describing to us what they had experienced, and what they would like.

The good news is that standards of specialist care continue to be high, but we found that there are already clear signs of people being ‘passed from pillar to post’ where HIV services and treatment of other conditions are insufficiently coordinated. Given the demographics of many long-term conditions, this is a problem that will only increase as more people live into older age with HIV. There is the risk of information and treatment decisions that are not coordinated, leading to poor experiences of care.

All the areas we visited knew that HIV services needed to evolve to reflect long-term condition care through closer partnerships with primary care, social care and other services, and to promote overall quality of life beyond just clinical outcomes. But they were not sure who had authority to make changes happen or to coordinate them across the system … with the notable exception of one area, which was making more progress.

This area’s achievements suggested to us that the way forward was through better leadership, relationships and joint processes (such as governance and funding) across services, rather than more re-structuring or top-down solutions. In the others, there were separate, unconnected plans for different commissioners and providers, and there were not always sufficiently close relationships between organisations to join these up. In particular, uncoordinated commissioning plans had a negative impact on HIV support services, and there were examples of separate HIV and sexual health services.

It was clear that the 2012 reforms had made it harder for HIV services to evolve to reflect changing needs, and harder to manage a process of coordinated change. Responsibilities had been fragmented locally, and the importance of national bodies’ roles had been under-appreciated in setting overall strategy and ensuring accountability.

We found that these challenges were the same in London as in other areas. But they were magnified by the complexity of structures and the speed with which changes in need were becoming apparent.

Our recommendations focus on how services can come together around an overarching local plan and leadership, to develop new care models and work more closely with other services. Recommendations for national bodies focus on how they ensure a strategic direction, accountability, and support for local development. We address prevention, stigma reduction and meaningful involvement of people living with HIV as on-going priorities. We caution against looking for quick solutions, for example from STPs, pre-exposure prophylaxis (PrEP) on its own, or over-ambitious plans for shared care with GPs.

Does this add up to a cause for optimism? Or is England’s outstanding track record in HIV care now at risk?

Some of the issues that we identified included a lack of regular dialogue between stakeholders, boundaries of responsibility that were unclear or required time-consuming workarounds, and no overall plan across the different organisations in each area. It should be entirely possible to start addressing these issues.

Other matters – such as developing the relationships to make governance work across different organisations, or to design and co-produce future service models – clearly take longer. But three factors can help with this.

One is that HIV clinical treatment is funded centrally through the specialised commissioning process. Other research that we have done (2), suggests that this offers a degree of protection in times of financial pressure. It is a safety net, ensuring continuity of a core of good treatment.

Second, the challenges we highlight are already real and need addressing now, but they are visible and growing rather than a ‘big bang.’ The number of older people living with HIV is still sufficiently small (especially at the level of individual GP practices) for the current high levels of engagement of HIV specialists to continue, while work takes place to design more systemic approaches to involving the range of service providers.

Third, we found examples of committed individuals who were already making progress in designing future care models. This is not a case of starting from scratch, especially if national bodies can support and share learning from these innovators, and if learning is similarly sought from other long-term care services (e.g. many cancers) which offer parallels in how they have developed.

HIV services were originally super-specialised, providing a one-stop shop for individuals’ complete care. As people live longer with HIV, these specialist services have started to work more closely with other services and they need to go further down that route. It is a cultural shift for both professionals and patients. It requires a building-up of trust and understanding with GPs, social care staff and others, as much as a change in care processes, and it needs to develop locally rather than top-down.

Overall, our view was that if we are to sustain the quality of HIV care, we need to coordinate, plan and co-produce future services. That action is entirely feasible. It is primarily for local services to make it happen. Support from national bodies will be important, but the critical factors are system leadership and the relationships between local stakeholders.

(1) Baylis A, Buck D, Anderson J, Jabbal J, Ross S (2017) The future of HIV services in England. London: The King’s Fund.
(2) Robertson R, Wenzel L, Thompson J, Charles A (2017) Understanding NHS financial pressures. London: The King’s Fund


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