Improving mental wellbeing in the HIV Community: State of Mind & I Am More Than One Thing

Improving mental wellbeing in the HIV Community:State of Mind&I Am More Than One Thing Silvia Petretti, Deputy CEO, Positively UK UKCAB 4 July 2014

Overview of the State of Mind Report • Findings from I Am More Than One Thing • Recommendations

Overview & objectives • About the States of Mind Report • A collaborative project between Positively UK and Janssen undertaken in 2013 • Survey based document providing insights on the mental health of people living with HIV in the UK today • Basis for recommendations and discussion around the provision of mental health care to people with HIV • We commissioned the report to learn about: • The prevalence of mental health issues among people living with HIV • The relationship between mental health and adherence to ART • The impact of stigma and discrimination on the mental health of people living with HIV • The services accessed by people living with HIV in relation to their mental health All content based on the States of Mind Report, 2013.

Methodology and reach • How we surveyed the HIV community • Survey open between April and July 2013 • Responses predominantly online, with some paper surveys completed • Respondents were recruited by patient advocacy groups from across the U • Who did we reach? • 192 people living with HIV: 63% male, 36% female, 1% transgender • 54% white British, 25% black African, 21% other • 48% homosexual, 40% heterosexual, 12% bisexual/other All content based on the States of Mind Report, 2013.

Three quarters of respondents had suffered from depression, anxiety or ongoing emotional distress in the previous 12 months. What we found… • However, only four in ten respondents had accessed counselling or psychology services in the same period. All content based on the States of Mind Report, 2013.

What we found… Mental health issues were more common among women than men of those who responded to the survey. All content based on the States of Mind Report, 2013.

Women living with HIV and Mental Health • Women in the general population have higher prevalence of anxiety and depression. (DH 2013:17), • People living with HIV have higher orevalence of mental health problems (WHO 2008). • Women living with HIV in the UK experience high levels of Gender Based Violence but little is known of how this impacts specifically on mental health and well-being. (Sophia 2013)

I Am More Than One Thing • Report commisioned by the Women and Health Equality Consortium and produced in collaboration between Positively UK, Imkaan, and Rape Crisis. • Looking at vulnerable women experiences with mental health and access to mental health services. • Focus on BME women, refugees, gay bisexual women, women victims of sexual violence and women living with HIV • Literary review and focus groups

Focus Group with Women Living with HIV • Attended by 9 women and peer lead. • Diversity of backgrounds: Black African, Black Caribbean, White European and White British • Years of diagnosis ranged from 3 to 21

Issuesidentified by women living with HIV • Mental health problems often pre-dated diagnosis • HIV exacerbated existing mental health issues • Mental health diagnosis and referral to appropriate services were inconsistent • Lack of awareness of mental health symptoms meant women didn’t seek support • Internalised stigma and self blame amplified negative feelings: setting obstacles to seeking support

Women living with HIV and Mental Health • All women in the group had experienced varied levels of violence • Cuts in the welfare system and changes in health provision impacted on levels of anxiety • Talking therapies, CBT, women only peer groups were helpful • Medications ( eg. anti depressants) were also useful in managing symptoms

Some respondents linked their mental health issues to their difficulties to adhere to ARV treatment. What we found… All content based on the States of Mind Report, 2013.

What we found… Discrimination and stigma persist and discourage people living with HIV from disclosing their status. Four in ten had not disclosed to colleagues. One in four had not disclosed to their dentist. All content based on the States of Mind Report, 2013.

Recommendations & the road ahead • Further research can shed light upon the complex relationship between the mental health of people living with HIV and their adherence to ART • Improved communication between HCPs and people living with HIV can help both sides towards an improved understanding of mental health • People living with HIV should be able to access psychological services and should be encouraged to do so by their HIV clinicians All content based on the States of Mind Report, 2013.

Women living with HIV Recommendations • More in depth research is needed on the intersection of gender, HIV, GBV and mental health • Mental health screening in healthcare needs to be on going and not a one off • Importance of women focused commissioning of HIV health and social services • Crucial role of peer lead groups for support and advocacy around women mental health issues

Multidisciplinary approach to care is more important than ever and closer collaboration between services is needed – including partnership between the NHS, people living with HIV and community based organisations. Recommendations & the road ahead All content based on the States of Mind Report, 2013.

THANK YOU!

Improving mental wellbeing in the HIV Community: State of Mind & I Am More Than One Thing