Stronger leadership needed if HIV services are to evolve to meet changing needs

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Part of The future of HIV services in England

This time last year, when we began our work on the future of HIV services in England, one of our initial thoughts was that we might discover that HIV services were the ‘canary in the coal mine’: an early warning sign of any systemic problems arising from the implementation of the Health and Social Care Act 2012.

We suspected this because responsibility for commissioning and providing HIV and sexual health services had been particularly fragmented across many organisations and structures. What would we find?

We found that the world is already moving on and the approach set out in the 2012 reforms is already being modified. The NHS five year forward view, new care model vanguards and sustainability and transformation plans (which are driving the future direction of services in the wider health and care system) promote integration, not fragmentation. And financial pressures, particularly in local authorities, have had a much greater impact than probably anyone had anticipated in shaping the 2012 reforms, creating ‘fortress mentalities’ rather than the partnership approach that is needed.

We saw this in a lack of co-ordination in commissioning decisions for sexual health services, HIV social support and pre-exposure prophylaxis (PrEP). The risk was that this fragmentation was making it harder for HIV services to evolve and change. They could be left behind, stuck in a 2012 view of the world while services and patients’ needs evolve.

In each of the four study areas we visited, we found a recognition that the needs of people living with HIV are changing, and that services need to adapt to reflect this. But in the complex web of responsibilities created by the 2012 reforms, there was little clarity about who had the responsibility – or the authority – to make change happen. This is particularly the case in London, where introducing co-ordinated change means involving 33 local authorities, 32 clinical commissioning groups, 30 HIV clinics, 18 NHS trusts, five sustainability and transformation plans (STPs), Public Health England’s London Centre, and NHS England.

Navigating this complexity can leave insufficient time and space to manage the evolution of HIV services to reflect changes in people’s needs. As more people live into older age with HIV, they will need their HIV care better co-ordinated with care for other long-term conditions, by joining it up with other hospital specialties, GPs and social care. This evolution needs careful and inclusive leadership, not least because we found anxiety among both staff and service users over whether future change will dilute the current gold standard of HIV care in England, which achieves 96 per cent patient satisfaction and outcomes that are among the best in the world.

The complexity also distracts attention away from the general absence of clear plans, at either local or national levels, around planning for HIV services that reflect these changing needs. This in turn raises questions about the role of the centre, and what the balance should be between local and national responsibilities. The current wide variations in rates of timely diagnosis, the continuing need to reduce stigma associated with HIV, a lack of momentum in introducing new models for HIV care and service providers’ descriptions of limited accountability for themselves, all suggest that balance is not right.

In our report, we have taken a pragmatic approach, making clear recommendations about how HIV services should develop and what support national bodies should provide. We’ve also encouraged HIV services to engage in STPs and to prioritise prevention, while cautioning them not to expect simple solutions.

In the end, it’s not as straightforward as HIV services being the canary in the coal mine. The effect of the 2012 reforms on these services does raise questions for other services to consider, but many of our findings highlight how HIV services could work more closely with other services, especially those for other long-term conditions.

One of our study areas was making significant progress in evolving services to meet people’s needs, even in aspects that others were finding challenging. Its achievements suggest that the single most important things for future HIV services are to invest in the quality of relationships – across services, patients and communities, local politicians and commissioners – and to support these through joint governance and clarity of both strategy and leadership.