Since the National AIDS Trust was created 21 years ago, we have seen amazing developments in managing HIV and most people diagnosed with HIV in the UK can now look forward to a long life.

However people living with HIV still have significant health and social care needs that need to be met if they are going to be full, active and equal citizens.

People need support in managing HIV as a long-term condition, as many will experience side effects from medication and have health conditions relating to their HIV status. They also need support, especially from their peers, and information to help them come to terms with their diagnosis and manage their condition effectively.

This is especially important as HIV is affecting more people and different segments of the community. According to the latest prevalence figures, 73,000 people live with HIV - treble the 1997 number. HIV is no longer a disease that only affects men who have had sex with men. While this group remains disproportionately affected, along with black African and black Caribbean people, in 2006 over half of new diagnoses were among heterosexuals.

There has been a significant shift in the geographical distribution of HIV-infected people away from London. The east of England, for example, has seen a six-fold increase in the number of people living with HIV resident there since 1997.

Some of the most marginalised communities in the UK are also some of the most vulnerable to HIV infection. One-third of people diagnosed with HIV have experienced extreme poverty.

Also, research carried out by Ipsos-MORI shows that public attitudes to HIV continue to show prejudice and hostility and that ignorance about the virus and its transmission is actually increasing.

Tailoring care

Government social policy stresses the need for care services to be personalised to promote control, independence and choice. While some local council services are beginning to achieve this, many people tell the Commission for Social Care Inspection that their experiences of services do not match government policy aspirations.

One person living with HIV told the commission: "If you have anything else other than a bog standard lifestyle - just getting up and going to bed - social care services can't often deliver appropriate services. Services that fit you, your sexuality, lifestyle, fluctuating needs, likes and dislikes can easily become a casualty of 'conveyor belt care'."

In addition, we know from the commission's recent State of Social Care 2006-07 report, published in January, that the criteria used by councils to determine eligibility for publicly funded care are getting tighter. This means many people with "low" or "moderate" needs are left to find and fund their own care or depend on friends and family for support.

So what should people expect as they approach their social care services for assistance? The government has announced a green paper on the future provision of adult social care. This is welcome, as the Commission for Social Care Inspection has said for a long time there needs to be a new settlement between state, society and individual. People need to know clearly what they are entitled to and what their obligations are. As part of this new settlement, we believe there should be three basic entitlements:

  • People should have access to a proper assessment of their needs. The legislation already exists for this but many people do not know about it.

  • People should have access to good information and advice - someone to talk to about the right care.

  • People should have access to quality services that support their human rights and dignity. These services need to be fair and non-discriminatory, as one in three people with HIV say they experience some form of discrimination or prejudice.

More than 21 years ago when government and professionals first responded to the challenge of HIV, the emphasis was on social care because there were few medical therapies As therapies improved and progress was made in treatment, the focus moved to health. But supporting people living with HIV requires varied approaches - prejudice, discrimination and poverty cannot be fought through a research lab.

Good social care services are needed to help take on these challenges. If we can get it right for people living with HIV, then we can get right for many other people.

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