HIV services: collaboration in a time of fragmentation

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Part of The future of HIV services in England

Years after the memorable ‘tombstone and iceberg’ public health campaigns of the 1980s, HIV is back making headlines – but why?

Over the summer, a judicial review ruled that NHS England has the legal power to fund the use of anti-retroviral drugs (pre-exposure prophylaxis or PrEP) for HIV prevention as well as for treatment.

This issue brought into focus the fact that, since the Health and Social Care Act 2012 was implemented, responsibility for sexual health and HIV services has been divided between local authorities and the NHS.

From 1 April 2013, local authorities, rather than the NHS, commission most sexual health services, HIV prevention and support services. HIV treatment is now commissioned by NHS England as a specialist service, even though most have been integrated with sexual health services. Confusing matters further, CCGs have a role in commissioning some sexual health and HIV-related services as well as responsibility for other clinical care that people with HIV may need. This separation of commissioning responsibilities has led to a highly fragmented approach to HIV care and prevention for the estimated 100,000 people living with HIV in England.

Reviewing the whole pathway

At The King’s Fund, we have been working on a project to understand how HIV services have been affected by these NHS reforms. We have been talking to key national and local stakeholders and to people experiencing HIV treatment and care. Our review covers the whole ‘pathway’ from prevention to diagnosis, treatment and ongoing care.

In order to understand how local systems have dealt with the new commissioning arrangements, we are studying four geographical case studies from across England. We want to explore how areas are developing their own frameworks and networks around HIV prevention, treatment and support services. By doing so we hope to help inform the development of HIV services in future and share our learning from the HIV sector with the wider health and care economy.

It is striking that no-one we have spoken to thinks the current system is a ‘good place to start’. The complexities about who commissions what, where and when are particularly challenging in a time of ‘austerity’ with the NHS and local authorities facing severe financial challenges. In some cases this has led to commissioners arguing amongst themselves over their respective responsibilities – arguments that have ended up in court.

Emerging findings

In spite of the challenges facing the sector, we have heard how HIV care and prevention services are working, and working relatively well, in a difficult environment. Our emerging findings are relevant outside the HIV sector, and can be used as a case study for some of the overarching impacts of the 2012 Act, as well as how local systems have had to adapt and respond to make things ‘work’.

In one case study site, the HIV sector has found effective new ways to come together. Organisations across the local system are putting the patient at the centre of care by moving towards a more joined-up, collaborative approach. A key enabler of this has been the development of a sexual health and HIV programme board. The board brings together commissioners from across the NHS and the local authority as well as all providers of prevention services and care/treatment services. Having everyone in the room and ‘at the table’ has enabled better collaboration across the system.

A voluntary support organisation involved with the board commented,

It’s about feeling that other providers and other people working in the city are colleagues and not competitors and that you’re all working to the same kind of agenda and certainly over the last few years since we’ve had this kind of structure with... the programme board, that has helped enormously. It, sort of, has given it a formal structure that has worked better that I think any of us anticipated.

This collaborative approach has been crucial to the local system finding innovative ways of working through the financial challenges facing the NHS and local authorities:

It feels really collaborative, it feels like we’re all, sort of, sharing ideas and best practice and supporting each other around identifying gaps and how we are going to tackle this problem and where we are going to find the resources, and so on, and obviously that’s all under the umbrella of financial constraint… and it’s getting tougher all the time.

This has enabled the voluntary sector, the specialist HIV clinic and the genito-urinary medicine clinic to develop a ‘triangular’ HIV screening programme. All three partners work together to deliver HIV testing in various settings and have put appropriate onward referral pathways in place.

However, it has not been an easy journey and commissioners, providers and patients continue to face the challenges of ongoing financial pressures.

Other emerging themes from our fieldwork include the failure to address prevention and a system too dependent on the goodwill of individuals to make it work. We have discussed these and other early findings with a range of stakeholders, including people living with HIV. We will continue to analyse the data from our study and will publish the findings in April 2017.


Paul Kirwan

Comment date
02 December 2016
This sounds good, but as a PLWH my experience is that it is quite difficult to engage with commissioners and voice opinions about the location, quality and delivery of support services when responsibilities are so fragmented.

Questions seem to be passed around, seemingly in the hope I'll give up and offers of input go mainly unanswered.

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