Hello, and welcome: Terrence Higgins Trust in Powys

A few weeks ago I found out that the Terrence Higgins Trust - the charity promoting a healthy and stigma-free life for people with HIV - had set up a Community Liaison and Participation Project in Powys.  People who have been diagnosed with HIV often experience stress, anxiety and depression, and can feel particularly isolated in a rural county like Powys. The Trust provides support and advice for them and also anybody affected by these issues, such as family members and partners. Andrea Taylor, Support Service Coordinator of the HIV and Hepatitis Action for Wales, kindly agreed to answer a few questions about her work for the Trust, and the support that is available.

Tell us more about the work you are doing

Our Community Liaison Project is a Wales-wide service which can help if you are living with HIV and/or viral hepatitis. We can help if you are feeling isolated or lonely by increasing your access to a wide range of services in the local area. We can also help with some of the day-to-day issues of living with HIV and/or viral hepatitis and how they impact on your life. We can also help if you would like to make your organisation more knowledgeable and welcoming people with these conditions.

What is HIV and Hepatitis Action Wales?

It is a Wales-wide service which can help with any aspect of living with HIV and/or viral hepatitis. If you have questions about your treatment, your test results or day-to-day issues such as employment, housing and welfare benefits we can help support you. We can also provide emotional support and counselling. All our services can be delivered on a face-face basis locally, by phone or via our online support services.

Why is there a need for your work?

Despite the huge progress in care and treatment for people living with HIV/HepC in the last three decades, reducing the stigma around HIV/HepC has taken longer and proven more difficult to address.

HIV is still a stigmatised illness and discrimination and prejudice remain issues of concern to people living with HIV. Fear of discrimination and actual experiences of injustice can have a profound effect on individuals mental health and self esteem, which in turn can have significant implications for society as a whole.

Stigma often prevents people being open about their condition and it inhibits the kind of open discussions that is needed to challenge society’s lack of knowledge and understanding about HIV/HepC.

How do you know about the ongoing stigma associated with HIV?

A 2010 survey found that 66 per cent of the public agree that there is still a great deal of stigma around HIV. A similar number also believe more needs to be done to prevent discrimination. However, general awareness and knowledge levels among the public can still be startlingly low. People living with HIV/HepC regularly report being treated badly, receiving poor service or being discriminated against because of their status. Sadly, a high level of discrimination still occurs within some organisations.

A 2008 survey of people with HIV in London found that one third of people encountered discrimination because of their HIV status. Of those reporting discrimination, half said it had come from a healthcare worker, one in four from a dentist, one in five from a GP and one in ten from hospital staff.

We have supported people who have been bullied, intimidated and even threatened with violence because of their condition. Stigma and prejudice can compromise people's personal relationships and fear of disclosure can prevent them getting the kind of basic support that other people living with long term conditions can expect from family and friends.

How does the stigma of HIV affect people’s emotional wellbeing?

The fear and isolation this creates can have a profound effect on a person’s physical and emotional health. In many instances, people living with HIV/HepC can require more support in dealing with the stress and anxiety caused by the stigma, than with the physical impact of the infection. Mental health and in particular depression is a common experience for people living with HIV and a 2012 study showed that one in four had a current depressive disorder. Despite these figures, depression is not an inevitable aspect of HIV infection, but it could be triggered if you feel anxious or uncertain about your future. It is possible that people living with HIV are suffering from depression without realising it.

What about discrimination against people with HIV seeking employment?

People living with HIV/HepC are often fearful of disclosing their status in employment or recruitment settings and many people face barriers to securing or remaining in employment as a result. Similarly, many people are reluctant to disclose in settings such as with their GP or dentist and this in turn compromises the level of support they can expect from public services.

The public sector is the UK’s largest employer, with the NHS the largest single employer, so it holds considerable potential to not only improve the delivery of services to people living with HIV/HepC, but to also increase HIV awareness and tackle discrimination.

What is happening in Powys and Ceredigion?

A great deal more could be done within the health service in particular in terms of training staff on HIV related stigma rather than focusing on simply HIV infection control. Our projects in Powys and Ceredigion involve working in partnership with people living with HIV and representative agencies. We will continue to fight to challenge HIV stigma and increase awareness in public services and within our community.

If you would like to speak to your local Terrence Higgins Trust support worker either to request training, arrange an appointment, or simply have a chat on how we might be able to support you, please contact:

Andrea Taylor, Support Service Coordinator - HIV and Hepatitis Action for Wales

 mobile: 07824 809 779 email: andrea.taylor@tht.org.uk

Joshua Hall, Community Liaison Project Manager - 
Community Liaison & Participation Project
tel: 02920 666 465  email: josh.hall@tht.org.uk