People living with HIV join outreach teams as re-engagement in care moves up the political agenda

Programmes to find people who have dropped out of HIV care in England and to re-engage them with medical care are beginning to harness the expertise of peer support workers, the joint conference of the British HIV Association (BHIVA) and the British Association of Sexual Health and HIV (BASHH) heard last week in Liverpool.

Find & Treat is an NHS outreach team that works with people with experience of homelessness, substance use, the criminal justice system, sex work or migration, and has played a key part in successful programmes to re-engage people with hepatitis C who had dropped out of care in London. While the current team includes many peer workers who have lived experience of hepatitis C and homelessness, as the unit expands its work to re-engage people with HIV, it will recruit more people living with HIV who have the appropriate life experience. It’s about having “the right peer for the right person,” John Gibbons of Find & Treat told the conference.

“If you have a service that caters towards the person, is holistic and inclusive, then you can engage the person,” he said. When they are contacted by an HIV clinic or emergency department with concerns about a patient that they have lost touch with, they use multiple databases to track them down. As well as the NHS Spine and the London Care Record, which may each have traces of the person’s interactions with other health services, they also scan databases of prisoners and rough sleepers.

For people who will find it difficult to re-engage with standard clinic-based services, a clinician and a peer can provide care out of a van or through home visits. They may focus as much on the social challenges that the person is facing as their medical needs.

Having a peer worker has also been crucial to Terrence Higgins Trust’s work in this area, especially in cases where disengagement has been shaped by stigma and inaccurate beliefs about HIV, rather than by financial pressures. The peer worker’s cultural awareness, empathy and personalised approach helped to build trust. It was also reported that offering contact outside of standard working hours, meeting clients in neutral settings and “maintaining persistent but respectful follow-up” were important.

Find & Treat and Terrence Higgins Trust are two of the organisations that are working together on new re-engagement initiatives in several parts of London. The funding comes from Fast Track Cities London, which is a partnership that brings together key players from across London’s fragmented health system – including NHS funders, hospital clinicians, public health officials in local government and the community sector – to coordinate activity and push through innovations such as this.

As there is often a cycle of disengagement and re-engagement, more money is being put into funding voluntary sector organisations to provide support that addresses some of the challenges clients face. For example, somebody who can’t get enough to eat will be referred to the Food Chain for food parcels, while a client whose engagement in chemsex has got out of hand could be put in touch with the drug service Antidote.

In addition to the Fast Track Cities funding, the HIV Action Plan – the government’s strategy for HIV in England, which was published late last year – committed £9 million over three years to a national retention and re-engagement initiative. These projects are expected to get started towards the end of the year.

BHIVA has also recently issued guidance outlining the basics of what clinics should be doing to address the problem. According to the guidance, all clinics should have a named lead for re-engagement and a dedicated contact point for others in the health sector to seek or provide information about people who are out of care. They should make systematic efforts to reach all patients who have not attended for 12 months, and when people do re-attend, they should assess the person’s reasons for disengaging. Moreover, they should be welcoming and encouraging to people who come back to care.

The model described by BHIVA is greatly informed by the work done in south-east London (previously reported by aidsmap here and here). Dr Kate Childs of King’s College Hospital told this year’s conference that of 333 people re-engaged in care over three years in the area, 55% had a viral load over 10,000 when they came back to care and 35% had a CD4 count below 200.

Sixty per cent of people re-engaging with care came from neighbourhoods which are among the 30% most deprived in the country. Just under half were unemployed, one in five reported drug use (most commonly, chemsex) and nearly half faced mental health challenges. People often faced multiple, overlapping pressures affecting their ability to remain in care.

Despite success in bringing people back to care, many drop out of care again. This was especially seen in women, people living in the most deprived neighbourhoods and people with mental health needs. Probably as a result, 35 people were hospitalised for HIV-related illnesses and three died from HIV-related causes. And people are constantly falling out of care even as others return to it – there are currently 299 people on the service’s list of people who haven’t attended for 12 months.

The figures are a reminder that re-engagement is not a one-off intervention and that funding for this work will need to be sustained.

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