YOU ARE HERE:
Information: where to go
Getting the best care can involve not only finding good treatment providers but also gaining confidence in understanding and questioning medical treatment yourself. There are a number of treatment information sources available in the UK. Those mentioned here are some of the best-known. To find out more about anything listed in this Factsheet use the phone list at the end. NAM recommends readers to seek treatment advice from more than one source, and to discuss all your decisions with your doctor.
Information from NAM
NAM’s treatment education programme includes:
- These monthly treatment Factsheets,
- A monthly newsletter, AIDS Treatment Update
- A series of booklets, including Viral Load, Nutrition and Clinical Trials, and coming soon, A Pocket Guide to Anti-HIV Drugs
- A leaflet for African communities, Current Treat- ments for HIV, (with Health First and Vanguard)
- Regular Information Forums with an expert speaker held in and outside London
- Treatment Workshops for groups of HIV-positive people and for professionals which explore current issues in HIV treatment and care
- The HIV & AIDS Treatments Directory, a comprehen- sive guide to HIV treatments
- A website, http://www.aidsmap.com, (with the British HIV Association)
Leaflets
The Terrence Higgins Trust publish a number of leaflets offering basic information on treatments. These include Starting Combination Therapy, Treatment Issues (with NAM), A Guide to HIV Treatments for African People (with UAAF), Baby Matters (with ACIA), and a leaflet on treatment adherence called A Spoonful of Sugar (with NAM). AIDS Treatment Project produces two written guides, An Introduction to Combination Therapy and ATP Guide to Second-Line and Salvage Therapy.
Newsletters and magazines
All of the UK’s general HIV media (Axiom, Body Positive Newsletter, Positive Nation, Positive Times) include some coverage of treatments information. ATP’s Positive Treatment News and Doctor Fax, and EQ focus solely on treatments. Mainliners is a newsletter for people affected by drug use and HIV, and Vanguard is written for African communities. Most of these appear monthly.
Courses and workshops
Body Positive offer monthly introductory HIV Starter Sessions and their eight-week Recently Diagnosed Courses include several treatment-related modules.
Helplines and 1-2-1 advice
ATP run a treatments information line; the THT provides a general HIV helpline; and Body Positive run Positiveline, staffed by HIV-positive volunteers. A small number of HIV organisations (including Body Positive and the THT), offer 1-2-1 treatment advice and support sessions with a well-informed advisor. These provide time to talk through your treatment options.
Libraries
Many HIV organisations have information services which should stock most of the publications listed here. Others may also offer access to medical journals, treatment publications from overseas, and the internet. Some of the best-resourced libraries include those at Body Positive, the Information Exchange, Positively Women and the THT (all in London), the SOLAS Centre in Edinburgh and George House Trust in Manchester.
Internet
The internet provides access to an enormous amount of treatments information from online medical journals to mailing lists which act as global electronic discussion groups, for example on haemophilia, treatment activism or protease inhibitor side-effects. A number of organisations offer internet access, including Body Positive, the Information Exchange, THT and George House Trust). All the major ‘gateway sites’ are reached easily via the NAM/BHIVA site http://www.aidsmap.com.
Phone list
ATP 0207 407 0777 (Helpline: 0845 947 0047)
George House Trust 0161 274 4499
Information Exchange 0208 746 5929
Mainliners 0207 582 5434
NAM 0207 840 0050
Positively Women 0207 713 0444
Positive Nation 0207 564 2121
SOLAS 0131 661 0982
THT 0207 831 0330 (Helpline: 0207 242 1010)
Vanguard 0207 622 7516