Our study revealed that a large proportion of people living with HIV do not have their diagnosis documented in their mental health records, highlighting a critical gap in communication between mental and physical healthcare. Awareness of a service user’s HIV diagnosis for mental health professionals is crucial to provide holistic care, support them in accessing HIV services, and combat stigma.
Dr Margaret Heslin, Senior Lecturer in Health Economics and Epidemiology at King’s IoPPN and lead author of the study
24 April 2025
New study finds HIV diagnosis often missing in mental health records
Research led by the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London and South London and Maudsley NHS Foundation Trust has found nearly a third of people living with HIV who access secondary mental health services in South London do not have their HIV diagnosis recorded in their mental health records.
HIV is a virus that damages the cells in your immune system and weakens your ability to fight everyday infections and disease. Whilst existing evidence shows prevalence of HIV and other bloodborne viruses is greater among mental health service users, the sexual health needs of people with severe mental illness (such as bipolar disorder, depressive psychosis, schizophrenia and related disorders) are often neglected.
Awareness of HIV status can help mental health professionals provide more comprehensive care. Despite this, new research published in PLOS One reveals that HIV diagnosis is often missing from mental health records.
Using the Clinical Record Interactive Search (CRIS) system – a secure computer system developed at the NIHR Maudsley Biomedical Research Foundation that allows researchers to carry out research using South London and Maudsley NHS Foundation Trust clinical records – the researchers analysed data from adults (age 16+) who had contact with secondary mental health services (for more complex or severe mental health needs) in The Trust between 2007 and 2018.
They compared this data with national HIV surveillance data held at the UK Health Security Agency to determine the presence of a HIV diagnosis, and check if it was recorded in individuals’ mental health records.
Of the 4,032 people living with HIV, 31.8 per cent did not have their diagnosis recorded in their mental health records. The researchers also identified factors associated with missing documentation included being of Asian ethnicity, being diagnosed with schizophrenia, longer engagement with mental health services, and living in less deprived areas.
People using mental health services are at a higher risk of HIV and other bloodborne viruses. Although there are current clinical practices to test for HIV among service users, such as bloodborne testing on admission to inpatient units, this is still relatively new and does not include those who are never admitted. Mental health professionals are in a unique position to increase patient engagement with treatment services which can ultimately improve the overall health and wellbeing of those living with severe mental illness and HIV.
Dr Shubulade Smith CBE, Consultant Psychiatrist at South London and Maudsley NHS Foundation Trust, Visiting Lecturer at King’s IoPPN and study co-author
Previous research led by Dr Heslin found the prevalence of HIV in people using mental health services in the UK is 2.5 times higher than the general population. While HIV is treatable, evidence suggests people with severe mental illness may find it difficult to adhere to HIV treatment, and people living with HIV are less likely to access other healthcare services due to stigma.
The team’s recent systematic review highlighted that there is currently very little research on the barriers people with severe mental illness face when accessing sexual health services.
The latest study further highlights the disconnect between mental and physical health care. The researchers call for mental health services to explore strategies to increase dialogue around HIV in mental health settings, including steps to create a supportive setting in which service users feel at ease disclosing their HIV status.
This study shows the importance of linking information from different sources – something which we have prioritised at the NIHR Maudsley Biomedical Research Centre for over 15 years. Bringing this information together allows us to find out more about the physical health of people who use mental health services and to try to find ways to improve what are large and persisting health inequalities.
Professor Robert Stewart, Professor of Psychiatric Epidemiology & Clinical Informatics at King’s IoPPN and senior author of the study
The researchers worked with the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre’s Young Person’s Mental Health Advisory Group and Service User Advisory Group.
‘Recording of HIV diagnosis in mental health records: a data linkage cohort study’ (Margaret Heslin, Olivia Hunt, Emma Tassie, Amelia Jewell, Helena King, Elana Covshoff, Lucy Campbell, Sara Croxford, Rudiger Pittrof, Ann Sullivan, Julie Williams, Michael Newson, Kylee Trevillion, Shubulade Smith, Elizabeth Hughes, Robert Stewart) was published in PLOS One. DOI: https://doi.org/10.1371/journal.pone.0320392.
For more information, please contact Milly Remmington (School of Mental Health & Psychological Sciences Communications Manager).
In this story
Senior Lecturer in Health Economics and Epidemiology
Visiting Senior Lecturer
Professor of Psychiatric Epidemiology & Clinical Informatics