The story so far...

The Forum Link Project started as a lose association of HIV positive patient and service users groups across London in 2006. From the original four member groups the project now has fourteen member organisations covering most of London. We are very pleased to have members join us from Brighton and Eastbourne in the last year.

With the agreement of all its members The Forum Link is helping to co-ordinate a joint approach to several specific areas of concern to HIV positive patients. One major project is GPs and HIV, another is Ageing and HIV.

Kensington and Chelsea, Westminster and Camden PCTs are all in discussions with the Forum Link Project and its members over how best to provide GP cover for HIV positive patients. Both the Wharfside Patient's Forum at St Mary's Hospital, Paddington and FrontLine HIV Forum at Chelsea and Westminster Hospital have run patient surveys canvassing the views of patients regarding GP services and future detailed patient led research projects are in the pipeline.

Within ten years over 70% of people with HIV will be over 50. The FrontLine HIV Forum are in the process of gaining ethics approval for a major research project regarding how HIV impacts on the over 50s.

This is a patient led and run project, patients have raised all the funding for the project and joined forces with Stephen Karpiak and the Community Research Initiative on AIDS (ACRIA) in New York to build on the 'Research on Older Adults with HIV' (ROAH) study of 2006. We believe this will be the first UK based, international patient led research project of its kind.

Several member groups have produced solid, evidence based data to support the views and requirements of the patients they represent. Other patient groups are developing comprehensive research projects that will be invaluable in developing future services for positive people in the UK.