For people living with HIV, these are both major concerns and need to be addressed, says Positively UK’s Allan Anderson.

We know there is a strong link between mental ill health and long-term physical conditions, which can be a combination of lower quality of life resulting in depression and anxiety for the future. But for people living with HIV there is an added factor – stigma.

Positively UK supports more than 1,000 people living with HIV every year and almost every one of those state isolation and the need just to talk to someone about HIV as a major reason for coming to us. Attitudes towards HIV vary among the general public. Even today, some people still hold misconceptions such as that HIV can spread through activities like sharing cups or kissing. There also remain perceptions that people must have done something wrong and put themselves at risk to contract HIV. 

Recently, Positively UK conducted a survey in which many respondents spoke of HIV stigma being a major issue in their lives. Some respondents highlighted prejudice within the gay community. We also found that women reported higher incidences of mental ill health, with 7 out of 10 stating they had experienced issues in the past year compared to 5 out of 10 men. 

It is also worth remembering that it was 30 years ago this year that HIV was identified and named. HIV as a long-term condition is still in its infancy. Only now are we starting to see people living long-term with HIV and entering old age. These are uncertain times and there is anxiety among older people living with HIV about what the future holds.  Will their health be robust? Will care homes be welcoming or discriminating against them and care for them effectively if they are HIV positive? 

Addressing these issues is important if we are to improve the mental and physical health of people living with HIV. For example, a quarter of respondents said they missed taking medication due to mental health problems, potentially impacting on their adherence to those medications as well as their physical health.

Worryingly, we also found that while mental health issues were high the take-up of support services was low. HIV stigma can be a cause of mental ill health and a barrier to accessing support. Some respondents stated they wouldn’t talk to other healthcare professionals such as GPs about their HIV for fear of discrimination. This needs addressing as people living with HIV are increasingly being referred to their GP in managing their condition and for referral on to mental health services such as counselling and medications. 

Finally, only half of those who took part in the survey said they access support from the voluntary sector. This was partly due to not wanting to burden others, but for many it was because the services just did not exist. 

If we are to improve the mental wellbeing of people living with HIV healthcare services need to recognise the signs of mental ill health and offer effective services to them. Commissioning bodies, despite cuts, need to look at how to ensure the appropriate services are in place and recognise that savings in the short-term will result in poorer health outcomes in the longer-term. 

In addition, voluntary agencies, including Positively UK, need to ensure they are asking the right questions and reaching the people who are most isolated.

Finally, all of us need to work together better to improve the take up of services and level of care provided for people living with HIV to better manage their mental health.

Allan Anderson is chief executive of Positively UK –