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www.thepositiveplace.org.uk

CARIBBEAN PEOPLE make up one of the largest-growing groups of people testing positive for HIV in the UK. Statistics also show that the number of people living with HIV in the Caribbean region is on the rise. Denial is not working, the situation needs to be addressed by the politicians and the media. Small signs of hope are starting in Jamaica with government adverts promoting condoms, but there is a long way to go. Music plays a big part in the local life and in setting the cultural agenda. Sadly some deejays continue to condemn people and make derogatory remarks about their health and sexuality. As there is so much cross over of culture to British based Caribbean people, until this can change confidentiality, disclosure and stigma will still play a big part in the lives of HIV+ Caribbean people.

In a recent consultation funded by Kings Fund, The Positive Place contacted HIV+ Caribbean people who were not accessing services. Most of the people spoken to said they did not attend groups as they were afraid that they may see someone they knew. This brought about continued fears of disclosure and stigma, with many people coming from small islands fearing that gossip would spread very quickly and get back home. They also found that if people had family or friends who were aware of their status, it was never discussed. Some people said that since diagnosis this consultation was the first time they had discussed their issues with anyone.

Most of the people spoken to said they did not attend groups as they were afraid that they may see someone they knew. This brought about continued fears of disclosure and stigma, with many people coming from small Islands they feared that gossip would spread very quickly and get back home.”

Many of the people contacted found it very difficult to talk about their HIV status. This is partly due to a culture where health and especially sexual health is not generally discussed. Additionally, HIV specific issues around confidentiality and stigma create a further isolating barrier. Once people felt they were in a safe environment, getting them to stop talking became the bigger issue!

The consultation allowed for some very positive outcomes and opportunities. Many women said they would attend groups if there were groups specifically designed for women. They were also willing to attend Living Well Courses (Expert Patient Programme) if they were also designed to specifically meet women’s needs. Most women felt that there were personal issues that they could not discuss while men were present.

Another part of the consultation concentrated on how people would feel more comfortable attending peer support groups. A large number of people said they would prefer to be a volunteer rather than service user. They felt it was acceptable to attend a group to offer support rather than to receive it. In one case we spoke with a HIV+ young woman who was a carer for her HIV+ mother, but was unaware that her daughter was providing the same support for her.

The future for HIV+ Caribbean people in Britain is likened to the situation in the Caribbean. Pressure needs to be brought on governments, community and cultural leaders to gain greater knowledge of HIV. Signs of hope are here. People are willing to take steps to improve their health and well-being. Most importantly, people are willing to help each other. Opportunities to help each other need to be created and supported. As these develop, the stigma and discrimination can subside. When this happens, then we will see an enriched inclusive culture on both sides of the Atlantic.