‘Neglect And Complacency’ In HIV Social Care Commissioning

A report launched by the AIDS Funders’ Forum reveals that neglect and complacency in the commissioning of HIV social care and support services has created a chaotic and fragmented system, which is failing people living with HIV in the UK.

{mosimage}The report, The growing challenge: A strategic review of HIV social care, support and information services across the UK, is based on the results of a survey of HIV services commissioners and service providers from across the UK. The report reveals frustrations amongst both commissioners and service providers at an inadequate system that fails to assess what is needed by people living with HIV in the UK both now and in the future.

Glenys Kinnock MEP comments: “This report highlights that HIV is one of the lowest priorities in the already neglected area of sexual health, with grave consequences for those living with HIV in the UK today. HIV is being overlooked, whereas it should be a priority both nationally and within local health services.”

One service provider commented in answering the survey: “…the support infrastructure for HIV services is crumbling very fast. There is unsaid complacency which you can almost feel, that people think that HIV is not a problem anymore. We know this is not the case, because people are still dying.” 

Whilst the UK Government has put in place an impressive strategy to address the HIV epidemic in developing countries, HIV in the UK is being kept off the political agenda. As this report reveals, HIV services are almost invisible in local funding priorities and no national strategic vision to tackle the HIV epidemic exists.

The report also indicates that HIV commissioners are not putting in place services to cope with the changing face of HIV in the UK.  The HIV epidemic has changed radically in the last ten years, following the widespread introduction of anti-retroviral therapies.  These effective HIV treatments have produced a dramatic reduction in mortality, and have meant that many people living with HIV can live long, healthy and active lives.

Yet what the survey shows is that neglect and complacency in the commissioning of HIV services has meant that HIV commissioners are not basing their services on the current or future needs of people living with HIV, but instead on historical precedent, reflecting a time when people living with HIV had a different prognosis and different needs.

Not investing in services for people at the point of diagnosis or who are living well with HIV, but who may still need support services, can have a detrimental effect on their health, as one respondent commented: “Often services only focus on people with high health needs and forget that investment in supportive services is a very effective way of preventing deterioration in terms of their health.”
Commissioners and service providers acknowledge that not enough services are in place for some of the most vulnerable groups living with HIV, including Africans, asylum seekers, children and young people.  Commissioners, many of whom lack knowledge and experience, have however failed to properly consider the needs of other key groups affected by HIV, including gay men and the over-50s.

Dr Chris Taylor, Consultant in HIV at King’s College Hospital, comments: “This report demonstrates that although the needs of people with HIV are changing, with a greater emphasis on training, employment, housing and legal services, there is still a need for social care and support.

“In my own practice, people with HIV comment that social care and support services are not available or accessible at their times of greatest need.  This needs to be taken on board by commissioners and providers of services to people with HIV.”
This report presents a grave outlook for HIV services in the UK. If HIV continues to be deprioritised, causing funding to be cut and essential services to be withdrawn, the already fragmented system will only continue to get worse. Only if HIV is put back on the public agenda and becomes a priority both nationally and within local health services will improvements be made, and people living with HIV receive the services that they need.