"When I remember I have this disease I feel lonely and stressed". This may be a sentiment many people with a long-term condition voice. However this quote has deeper resonance as it was voiced by someone living with HIV.
I was at a conference in Manchester earlier this year for the launch of the North West HIV Consortium. One gentleman who had being living with HIV for some years retold his experience of being in really poor health and being placed in a care home. In all fairness the care home was very good and he was well looked after. The problem arose around his HIV. He didn't feel able to tell other residents why he was there, the nature of his illness or explain the medications he was taking for fear of how they would react. It was then he received a cancer diagnosis which perversely was both devastating and a relief. He was now able to tell everyone that his reason for being in the care home, his ill health and his medication were down to the cancer. In telling people about his cancer he was also met with sympathy; a sympathy that he would never receive for his HIV diagnosis. As an endnote to this story I'm pleased to say the gentleman made a full recovery from his cancer, moved out of the care home and is now doing great work volunteering for an HIV charity in Liverpool.
What this story illustrates is that far too many people when diagnosed with HIV feel lonely, vulnerable and fearful of how people will react. The charity I run, Positively UK, provides peer-led support for people living with HIV. The single greatest issue that people need support with is isolation. Unable to tell anyone or talk to anyone about HIV leads to anxiety, depression and potentially serious mental health issues.
To understand more about this and raise the issue Positively UK, supported by Janssen, conducted a survey amongst the HIV community around emotional well-being. We already know people living with long-term conditions have higher experiences of poor mental health, but we wanted to hear from people with HIV, hear their voices and understand what could be done to address the issue. The results, published in the report States of Mind, were quite startling. Three quarters of those who responded said they'd experienced poor mental health, whether that be depression or emotional distress, in the last year. Worryingly, less than half of that group were accessing any kind of psychological support. "I think about HIV 24/7. It upsets me and I cannot talk to my family, GP or friends about it," one person told us. This isn't an isolated incident, with many people telling how they'd experienced discrimination and some of this in healthcare settings. Only 8 out of 10 people felt they could talk to their clinic about mental health, and less than half would tell a support worker. Some explained how they didn't want to burden anyone, or felt others wouldn't want to hear. The biggest factor however was that people stated support services just weren't available. This is a huge failure. A failure of commissioning in ensuring people have access to services; a failure of healthcare providers in identifying and being open to emotional ill-health within HIV patients; and a failure of our services in asking the right questions, sending out the right signals and letting people know we are here to support their physical, social and emotional well-being.
HIV is not like any other long-term condition. With HIV-related stigma still prevalent in society we need to ensure that people living with HIV have access to the right support. We need to continue investing in these services to enable people to manage their mental health, in turn manage their physical health and adhere to medications, and play a full role in the economic and social life of our society. Services are not the only answer. We need to raise more awareness of HIV, educate people, and tackle the stigma towards HIV.
The States of Mind report can be downloaded from our website http://www.positivelyuk.org/states-of-mind/