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Mental health services don’t have the necessary knowledge and understanding of HIV to support people living with HIV, 40 years after the first cases of HIV-related illnesses and deaths.

These are the findings of the new HIV and mental health report published today from the UK’s HIV rights charity National AIDS Trust[1].

National AIDS Trust investigated the suitability of Improving Access to Psychological Therapies (IAPT) services for people living with HIV and surveyed how people living with HIV had used the NHS talking therapy services in England.

The report reveals a lack of HIV knowledge and understanding within IAPT services, and IAPT services poor integration with wider HIV healthcare services stopped them from working effectively with some people living HIV.

Despite major progress in treating and preventing HIV, HIV stigma remains rife and contributes to poor mental health, isolation and loneliness. It often prevents people from getting the help they need.

People living with HIV are twice as likely to experience feelings of depression or anxiety than the general population, and more than 1 in 3 report being diagnosed with a mental health condition at some time [2].

HIV and mental health found:

• 2 in 5 respondents said their mental health did not change as a result of therapy, and 1 in 10 reported their mental health worsened
• four fifths said their mental health problems were related to living with HIV, and more than a third did not feel their therapist understood the ways in which HIV affected mental health
• a quarter said their HIV status negatively affected the way they were treated
• more than three quarters said their experience of IAPT services could have been improved
• less than half said they would be happy to use the same service again.

The report recommends:

• basic training on HIV and HIV stigma is added to the national IAPT curriculum so people living with HIV feel comfortable using IAPT services and IAPT service are better able to meet their needs
• IAPT services improve their connections with the wider physical and mental healthcare system so people living with HIV receive appropriate support
• all HIV clinics should include a psychologist or mental health professional on their multi-disciplinary teams
• the Government’s upcoming HIV Action Plan contains a commitment to improving mental health services for people living with HIV.

Deborah Gold, Chief Executive of National AIDS Trust, said:

“HIV remains a highly stigmatised and misunderstood heath condition 40 years since the HIV epidemic began. While there have been significant medical improvements to treating and preventing HIV, it’s disheartening our report shows mental health services and professionals are still not equipped to be able to adequately meet the mental health needs of people living with HIV.

“NHS talking therapy services must improve their training, understanding and awareness about HIV and how they work with HIV-specialist services. It’s important they provide culturally appropriate support for people living with HIV experiencing mental difficulties and not adopt a ‘one size fits all’ approach.

“We urge the Government to include improving mental health services for people living with HIV in its upcoming HIV Action Plan, as part of its goal to end cases of HIV by 2030.”

Dr Alexander Margetts, Clinical Psychologist at Central and North West London NHS Foundation Trust and a member of the report’s advisory group, said:

“While IAPT services are working for some people living with HIV, with examples of good experiences and care, we clearly have further to go. Thanks to the time, courage and honesty of the survey and interview respondents, we’ve learnt some have encountered challenges and stigma within our systems because they are living with HIV during a period when they felt most vulnerable and in need.

“The value of this report is not only that it alerts us to such crucial lived experiences, but it offers practical solutions to NHS England, IAPT services, local commissioning bodies, HIV clinics and clinicians, NHS Digital, and the Department of Health and Social Care to further improve them. If we collaboratively implement these recommendations, we will all work more effectively and compassionately to meet the needs of people living with HIV. We can and must start today.”

Eugene Lynch, who is living with HIV and contributed to the report, said: 

“After I was diagnosed in 2013, I tried to suppress my feelings about HIV. The self-stigma and shame I experienced eventually led to depression, anxiety, panic disorder, and drug and alcohol addiction issues. I lived in fear that people would find out about my HIV status. For me, it's important for NHS mental health services to understand the profound and compounding effect HIV stigma, particularly self-stigma, can have on mental health.

“When I accessed IAPT, the focus was on developing coping mechanisms rather than dealing with the underlying problems. Knowing that a therapist understands the burden of HIV stigma would help someone like me to be more open about its impacts and the shame I was experiencing. Better understanding of HIV more generally would also enable therapists to be more confident in conversations without fear of saying the wrong thing, making assumptions, or adding to stigma themselves."

Florence Eshalomi MP, Vice Chair of the All-Party Parliamentary Group on HIV & AIDS, said:

“Building on our The Missing Link: HIV and Mental Health report, National AIDS Trust’s report shows how effective mental health support for people living with HIV is vital if we are to reach the Government’s aim of ending HIV transmission in England by 2030. 

“We know the stigma about HIV can deeply affect the mental health of some people living with the condition and they need appropriate mental health support.

“The APPG firmly recommends improving mental health services for people living with HIV be a key part of the Government’s Action Plan to end HIV transmissions by 2030.”

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For more details, interviews and case studies please contact Anabel Unity Sale on anabelunity.sale@nat.org.uk or 07384 390 624.

Notes to editors

About National AIDS Trust

We’re the UK’s HIV rights charity. We work to stop HIV from standing in the way of health, dignity and equality, and to end new HIV transmissions. Our expertise, research and advocacy secure lasting change to the lives of people living with and at risk of HIV.

www.nat.org.uk