The growing challenge: a strategic review of HIV social care, support and information services across the UK.

Weatherburn, Peter; Keogh, Peter; Dodds, Catherine; Hickson, Ford and Henderson, Laurie (2009). The growing challenge: a strategic review of HIV social care, support and information services across the UK. Sigma Research, London.



This report appears 10 years after the widespread introduction of anti-retroviral therapies. Availability of effective HIV treatment has transformed the UK epidemic, producing a dramatic reduction in mortality and, for many people living with HIV, an increase in health and well-being. Yet, in spite of medical advances, many services seem to continue to follow a historical pattern. Against this background we commissioned Sigma Research to review service commissioning in the
HIV sector in order to inform members’ future grant making strategies.

Results in the report indicate that commissioners and providers of services believe that people from ethnic minority backgrounds, migrants, children, carers and people from different age groups have unmet needs. Other findings in this research indicate that many more services have been commissioned recently for Africans, on the basis that Africans make up a significant part of the current UK epidemic. We believe this is a valid focus but are discouraged by the approach to these varied communities as one homogenous population. It seems timely to ask whether configuring services to follow broad epidemiological categories without any further refinement is sufficient. The report further suggests that commissioners and providers believe the needs of gay men are well met. This is a surprise and does not accord with the views and experiences of many gay men living with the virus.

A significant minority of HIV positive people are neither gay men nor Africans. Even within these two groups the experience of living with HIV varies by age, geographical location and length of infection. HIV positive individuals may look at their needs from another starting point – for example, as a woman or an injecting drug user. The picture appears to be, increasingly, one of fragmentation and isolation. This poses the question: do we have the service models to meet the needs of HIV positive people in the third decade of the epidemic?

The report further shows that many of the problems with access to services – including housing and welfare rights – are structural problems, present across health and social care, and are not unique to HIV. HIV support services are funded from budgets which must also contain the increasing costs of anti-retroviral drugs and other medical interventions, and which are therefore subject to continuous attrition and dissaggregation.

Also highlighted is the lack of needs-based planning, the diminishing levels of knowledge and expertise among commissioners and the lack of a national strategic vision. In view of the fact that the Government has established a cross-departmental task force to address the epidemic in developing countries this lack of a national strategic vision is lamentable and has the effect of keeping the issue off the political agenda and almost invisible within local funding priorities. This is a concern both to us as funders and to agencies working within the HIV voluntary sector.

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