Talking at the STUC Congress 2011

Last week Marion Chatterley, Waverley Care’s Spiritual and Pastoral Care worker, spoke at the STUC Congress in Ayr. The Congress theme was ‘There is a better way’ and Marion addressed the stigma and discrimination faced by people living with HIV and Hepatitis C in Scotland today:

Waverley Care is Scotland’s largest charity working with people who live with HIV and Hepatitis C. You may well know about our work in Edinburgh and the Lothians, but we now have contracts for services in Greater Glasgow and Clyde, Lanarkshire, Highland, Argyll and Bute and Fife.

HIV is a chronic illness that can be treated but not cured. Treatment requires daily adherence to a drug regime. Hepatitis C is also a chronic illness. It can be cured in some people, but by no means all. Hepatitis C treatment is challenging to take and has a success rate of about 40%. Some people are co-infected with both HIV and Hepatitis C.

We’ve known about both of these viruses for a number of years now, but we still see significant numbers of new infections year on year. In the case of hepatitis C, this is due in part to better diagnosis of people who were infected some time ago, and in part to new sexually transmitted infections. With HIV, the picture is a bit more complicated. We’re seeing diagnoses in people who were infected abroad, often in Africa, who come here as asylum seekers or refugees, or to work; and we’re seeing continuing high levels of sexual transmission, especially among men who have sex with men. The result of this is that there is an increasing number of people who are living with HIV in Scotland – those who have been infected for a while are living longer and the total number of people diagnosed continues to increase.

Sadly, day-to-day living for the people I work with hasn’t changed much over the years. Stigma and discrimination is still a reality – people live their lives with a secret because it feels too risky tell. And living with secrets brings pressures of its own. For instance, a young person I know invited a new friend into her house. Mum had left her HIV medication on the coffee table and became very distressed at the thought that it would have been seen. Her anxiety was that people would then talk about her, would avoid her daughter, would make assumptions about who she was and how she had contracted the virus. It’s easy to forget that HIV is only a virus – not a nice virus or one that any one of us would choose to contract, but it is just a virus.

The challenges for HIV agencies come both from the stigma associated with the condition and from the fact that many of the people who are infected are from the most marginalised groups within our community. Gay men are disproportionately represented; Africans are disproportionately represented; people with mental health issues, people with dependency issues, and worldwide women are more likely to be affected than men. I think that this raises some interesting challenges for us here in Scotland. We perceive ourselves to be welcoming and open as a society, but we can be quick to blame and to seize on difference. Most people did not deliberately seek to become infected with a blood borne virus. The more vulnerable the client group, the less likely they are to be able to negotiate safer sex or to have equality within their sexual relationships. And so they are the most likely to become infected. Our responsibility is not to judge, it is to offer care and support.

Waverley Care is committed to offering the best range of services we can and to meeting the needs of as many people as possible. We need your support – Blood borne virus charities are not the most popular with people outwith the sector, but vulnerable people need support who ever they are whatever their personal challenges.