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

Duration: April 2006 - March 2007

In order to inform future funding and planning priorities around social care, support and information services for people with diagnosed HIV in the UK, the AIDS Funders Forum funded Sigma Research to conduct a review of commissioning and service provision in the HIV sector. The AIDS Funders Forum includes Crusaid, The Derek Butler Trust, The Elton John AIDS Foundation, The MAC AIDS Fund, The Monument Trust, and The Peter Moores Foundation.

The research had two elements.

Epidemiological review: Using the most recent published epidemiological data to 01-12-2006, we conducted a critical overview of the HIV epidemic across the United Kingdom.

The key findings of the review of epidemiological data were:

  • Although there has been a recent decline in the rate of growth of numbers of people with diagnosed HIV, prevalence continues to increase by 10-15% every year.
  • With the introduction of anti-retroviral treatment, the number of people with HIV dying every year radically declined ten years ago and has remained stable ever since (at about 500 deaths per year).
  • Prevalence of diagnosed HIV infection is highest in England, then Scotland, Wales and Northern Ireland. Half of people with diagnosed HIV in the UK today live in London.
  • In the UK, HIV disproportionately affects men rather than women and adults rather than children.
  • There has been a recent decline in the number of new diagnoses among migrants with HIV, suggesting the number of people moving to the UK with HIV has stopped growing. In the UK overall, 52% of people living with diagnosed HIV are White, 43% are Black and 5% are of other ethnicities. Among the Black people with diagnosed HIV resident in the UK, 89% are African, 7% are Caribbean and 4% are from other Black groups.
  • There has been no decline among the number of domestic HIV infections, suggesting the number of people living in the UK who acquire HIV (sexually) continues to grow. About 80% of all domestically acquired HIV infections occur as a consequence of sex between men.

Stakeholder survey and interviews: 1111 unique email addresses (456 in charities, 492 in the NHS, and 163 in Local Authority) were targeted with an invitation to complete an online survey which was available for five weeks in April and May 2006. After exclusions, the sample consisted of 371 responses including workers/volunteers from 111 different charities serving people with HIV; commissioners of HIV services from 60 local Health Authorities; staff from 60 different NHS providers and commissioners / staff from 37 Local Authorities. 197 survey participants volunteered for follow-up telephone interview of whom 18 (eight commissioners and ten charitable providers) were interviewed. Respondents were selected to maximise variation between urban and non-urban, high and low prevalence areas.

The key findings of the survey and interviews were:

  • There are no government targets against which performance with respect to HIV prevention or care is measured.
  • There are no core competencies, skills or formal training for NHS HIV commissioners.
  • Constant NHS restructuring and shrinking budgets means that NHS deficits figure more prominently than need in commissioning decisions.
  • HIV social care, support and information services are seen as secondary to treatment and care budgets.
  • Retraction and mainstreaming of Local Authority services threatens to disrupt continuity of HIV social care.
  • Social services are increasingly unable to serve the acute needs of asylum seekers with HIV. This is putting undue pressure on charitable providers.
  • The majority of respondents did not think all people with HIV were equally well served by the current configuration of services. Migrants, asylum seekers and ethnic minorities were seen as particularly poorly served.

The research concluded that current service configuration in the UK is unlikely to meet the changing needs of all people with HIV because it is not needs-led. Services are funded due to historical precedent and funding tends to roll forward year-on-year. Change in population need to compete with other factors (NHS funding shortfalls, Local Authority mainstreaming and political pressures) in decisions to change service provision.

The final report was called A growing challenge: a strategic review of HIV social care, support and information services across the UK. An Executive summary is available to download.

Key contact: Peter Weatherburn