Engagement: the 2013 PLWHIV Conference

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On Saturday, I went to the 2013 PLWHIV conference. The conference, which is in its second year and organised by Positively UK, was being held with the aim of informing, encouraging and developing individual and community engagement in HIV health and social care in the UK.

Empowerment and experience

There were over 100 delegates at the conference, and although I’ve been living with HIV for almost eleven years now, this was the first time I’ve met so many other people living with HIV. It was a moment that I found very empowering.



Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

Over the day, I heard lots of people speaking about their experiences of living with HIV and how activism had helped them to live well with HIV, to fight stigma, and to use their anger over inaction and inequality to help other people who were faced with a life of living with a long-term health condition that cannot be cured.

Lots of people told me that they had received so much support with living with HIV – from people blogging about their experiences, to charities providing information such as NAM and THT. People spoke about how this helped them get through their HIV diagnosis, or gave them advice and support when they were starting treatment. They all felt that they wanted to give something back, either by directly supporting others living with HIV, or by calling on public services to ensure that HIV health and social care remain a priority.   

Getting involved

Often, trying to work out how your experiences can help others can be daunting, and when people think of activists, it is easy to think of bright placards being held up high, or having your picture included as part of an awareness campaign. But activism is also about using your experience to help others and asking “How can I help?”, “This is what we need, how do we get it?” or “How can you help me to help you?”

You can start being an activist right now, and helping everyone affected by HIV, simply by signing this e-petition calling on the government to develop a national HIV strategy ensuring that there is effective funding for HIV services across the country: http://epetitions.direct.gov.uk/petitions/54009

There are also lots of ways you can get involved in your local area – contact your local HIV organisation to find out if they need your help, or consider becoming active in the local Healthwatch.

For more information

To find out more about the conference, visit: http://positivelyuk.org/conference/

NAT (the National AIDS Trust) runs an HIV Activists Network. To find out more and sign up, visit: http://www.lifewithhiv.org.uk/hiv-activists-network

THT (the Terrence Higgins Trust) also has an active campaigning arm, covering HIV and sexual health. Becoming a member of THT includes being kept up to date about latest campaigns. You can find out more about membership on the THT website. THT has also recently produced an online tool to show how your local authority is doing (compared to others in the country) on HIV and sexual health, called 'Know your needs'.

Our HIV, stigma and discrimination booklet gives information on tackling prejudice in many aspects of life. If you work in a UK clinic or organisation you can order free print copies through our free booklet scheme. Alternatively you can read it online or download it from here: http://www.aidsmap.com/stigma

You can also read about some of the changes to the NHS and the patient involvement bodies set up as a result in the article Overhauling health: NHS reform, HIV and patient power, which appeared in our newsletter HIV treatment update last year.