Ground-breaking service becomes the largest online support network for people with HIV in its first year

A year today, Friday 27 January, after its launch, almost 3,000 people with HIV in the UK are part of myHIV, a groundbreaking online support system. This makes it the largest community of people with HIV in the UK, with people helping each other to manage their health and wellbeing.

MyHIV is part of Life Plus, a suite of integrated online, face-to-face and telephone support services for people living with HIV and supports individuals’ everyday, non-clinical needs. Created by HIV and sexual health charity, Terrence Higgins Trust, the Elton John AIDS Foundation and people living with HIV, myHIV is an interactive online service, www.myhiv.org.uk, where people can register to access one-on-one or group peer support through online community forums, videos and stories, tailored health monitoring tools and information; online counselling and advice and one to one health trainer sessions.

New developments, one year on from the launch of Life Plus services:

People are seeking confidential support from others living with HIV within hours of diagnosis, gaining information, advice and help with their emotions including how to live well with HIV, who to contact, how to manage medication and side effects and how to discuss HIV with partners. This reduces many of the anxieties and feelings of isolation that are often felt upon diagnosis and particularly in rural areas with little access to face-to-face support.

Face to face support with regional health trainers is improving people’s physical and emotional wellbeing. Support with better understanding the condition, including its treatments and psychological impact, helping individuals’ monitor and manage their virus levels and holding group sessions to explore issues such as how to manage HIV in relationships, pregnancy and HIV and living with HIV into old age is helping motivate people to look after their health and feel more connected to people with HIV and specialists within their local communities.

Online health trackers, medication and appointment reminders are helping people to effectively manage their treatment and healthcare and reduce their virus levels to improve their health.

Terrence Higgins Trust is developing a new iPhone app to enable patients to access information, community forums health trackers offline. People will be able to update their clinic reminders, medication and health trackers offline, anywhere they are, to help understand their progress or ask clinicians the questions they would normally forget.

David is using the myHIV services: “The best thing I have ever done is joining the forums here, talking to people, making friends, asking questions, sharing your bad moments and your good ones. Active members are available almost 24 hours a day which means that there is always some to talk to. It feels like a safety net, a safe house that you know you could go to anytime you feel low, unsure, worried and happy. Whether sharing moments of joy or fear you know that someone is there caring for you."

Amelia, 52, says: “There is so much support and great advice here and even though I have been living with HIV for 19 years I am finding it an enormous help."

Genevieve Edwards, Terrence Higgins Trust’s Executive Director of Health Improvement said: “MyHIV works alongside clinical support and face to face care to give people with HIV 24 hour access to support and information wherever they are in the UK. It’s a huge success story, but we want to give every person with HIV the same chance to take more control of their own health and find out how to make the most of what, for many, will now be a full length life with the new treatments.”

For more information visit www.myhiv.org.uk