HIV is a complex condition that can cause a range of health problems. Taking HIV medication can also cause side effects that can be difficult to deal with.
Being able to manage HIV well can make a huge difference to a person’s wellbeing, allowing them to minimise health problems and maximise quality of life.
Supporting people to manage their health more effectively also makes sense as it can prevent people from needing more costly treatment and support further down the line, saving the NHS and Government money in the longer term.
We think that much more could be done to help people who are living with HIV to make the most of their health and wellbeing. We’ve come a long way in the last 20 years in improving HIV medications. It’s now time that we make sure that other support services, like social care and psychological support are up to scratch and available to everyone who needs them.
We’re working to try to convince the Government, the NHS and local authorities to do more to help people living with HIV manage their condition well and access the social support they need.
Social care
Prior to 2010 the Government ring-fenced the funding it gave to local authorities in England to provide HIV social care, meaning that they could only spend the money directly on those services. The ring-fence was removed in April 2010 and local authorities can now spend the money on more general social care services if they choose. Services tailored specifically to meet the needs of people living with HIV could now be at risk.
The Government does provide an ‘earmarked’ allocation for HIV social care based on how many people are living with HIV in an area. This doesn’t mean that local authorities have to spend it a certain way, but it does tell us how much the Government expect local authorities to spend on HIV services.
We joined forces with other HIV and sexual health charities to launch a campaign through our joint 'local influencing' project, Shout Loud. The campaign helps you write to your local authority in England to find out how much they are spending on HIV social care and lets you highlight how important services are.
Take part in the campaign.
Developing an HIV care pathway
There are various guidelines relating to the care and support people living with HIV get in hospitals and HIV clinics. However, there is no clear guidance that brings together medical care with the other areas of social and psychological support that help people live well with HIV. Comprehensive guidelines, or a national care pathway, would help to make the responsibilities of different service providers clear and would ensure that people across the country get a consistently high level of service.
In England we think that the National Institute for Health and Clinical Excellence (NICE) should develop a national standard for HIV health and social care.
We have made this one of our campaigning priorities in our document HIV and Sexual Health: 12 things Government can do.
Wales already have a National Care Pathway.