Fast-Track Cities London commissioned this independent report from the Directory of Social Change to delve into the state of HIV voluntary and community organisations in London since the initial impact of the pandemic, examining the challenges faced both by people affected by HIV and organisations supporting them, and looking at the changes made in response to the pandemic. The Directory of Social Change’s researchers are experts in undertaking charity sector research to inform policy and practice. Their bespoke and commissioned research is led by the needs of clients, and their policy work supports the wider voluntary sector.
Report author, Chester Howarth, Directory of Social Change’s Senior Researcher said:
“The voluntary and community sector is an important source of support for people affected by HIV in London, helping to meet the varied needs of a diverse population. Following the onset of the COVID-19 pandemic, which has had wide-ranging effects on society, this new research addresses gaps in our knowledge about the changing needs of people affected by HIV in London – and helps us to understand the resilience and readiness of the voluntary and community sector to respond.”
Professor Jane Anderson and Professor Kevin Fenton, Co-Chairs of Fast-Track Cities London said of the research:
“The COVID-19 pandemic has profoundly impacted the state of HIV voluntary and community organisations in London. There is more demand for support than previously and less funds available. The situation is further aggravated by the increases in the cost of living that are affecting every organisation’s running costs and the ability to recruit and retain staff. However, through resilience, innovation and collaboration, HIV voluntary and community organisations have continued to provide essential support to people affected by HIV. As the world emerges from the pandemic, it is crucial to sustain and strengthen these organisations, ensuring that their vital work continues to positively impact the lives of those affected by HIV in London. Fast-Track Cities London Leadership Group welcome this research and the recommendations within it and will work with the HIV voluntary and community sector to ensure its sustainability in the future.”
Key findings
1. The needs of people affected by HIV in London
Changing, diverse and complex needs
◼ Needs around mental health and well-being had changed the most following the COVID-19 pandemic: 90% of the people surveyed said this area was more important because of the pandemic and, on average, 72% of voluntary and community sector organisations said
demand for support had increased since before the pandemic.
◼ The voluntary and community sector organisations said demand was typically increasing or staying the same across a wide range of topics: only 4 of the 36 different types of support in DSC’s survey showed decreased demand among 10% or more of respondents, suggesting
diverse and potentially increasingly complex needs.
Mental health and well-being
◼ As noted above, needs around mental health and well-being had risen in importance for the overwhelming majority of the people DSC surveyed. Support around social isolation and loneliness was most widely considered very important in this area (65%), followed by access
to counselling or therapy (56%).
◼ The voluntary and community sector organisations had seen widespread increased demand (reported by 88%) for support with social isolation and loneliness. Their representatives described how the COVID-19 pandemic had created and exacerbated problems such as
disconnection from social and health support networks.
Finances, poverty and social issues
◼ Needs around finances, poverty and social issues had risen in importance because of the COVID-19 pandemic for 78% of the people DSC surveyed. The respondents widely considered a number of issues to be very important, including support with fuel poverty (58%), poor quality housing (58%), accessing benefits (55%) and homelessness (55%).
◼ The voluntary and community sector organisations had seen widespread increases in demand for various types of support around finances and poverty, including accessing benefits (81%), accessing food (74%) and homelessness (71%).
Other areas of need
◼ Needs around migration and immigration had risen in importance because of the COVID-19 pandemic for just under half (47%) of the people DSC surveyed. The voluntary and community sector organisations had seen widespread increases in demand for support in areas such as accessing immigration-related legal aid (78%) and good-quality immigration advice (77%). They described how migration status can intersect with or compound needs such as isolation and loneliness, and create challenges for access to appropriate support services.
◼ For the people DSC surveyed, needs around living with HIV were more likely to have stayed about the same (62%) than to have risen in importance (35%) because of the COVID-19 pandemic. However, support around ageing well with HIV was widely considered very
important (66%), as was getting appropriate care from a GP (66%).
◼ Despite needs around living with HIV being less likely to have risen in perceived importance, voluntary and community sector organisations described how other increasingly important issues can still interact with aspects of living with HIV, such as financial or mental health difficulties taking priority over and interfering with adherence to treatment.
2. The resilience of voluntary and community sector organisations
Capacity to deliver support
◼ Overall, demand for support was reported to be higher than before the onset of the COVID-19 pandemic for most (60%) of the voluntary and community sector organisations surveyed. The average increase in demand for support was 25%.
◼ While the voluntary and community sector organisations were mostly meeting demand in each area of need, this was typically with no spare capacity (from 27% to 45% of respondents).
◼ A notable minority (upwards of 15%) of voluntary and community sector organisations were falling significantly short of meeting demand within each of the areas of need, particularly support around finances, poverty and social issues. This presents a potential barrier to
improving health, quality of life and well-being for people living with HIV.
Income, expenditure and financial security
◼ The voluntary and community sector organisations had overwhelmingly (88%) seen increased expenditure compared to before the onset of the COVID-19 pandemic – but only half (50%) had seen increased income.
◼ A clear majority (71%) of the voluntary and community sector organisations had used reserves to meet operating costs during the past three years, potentially reducing their financial resilience.
◼ Voluntary and community sector organisations were concerned about declining public interest in HIV as an issue – and income from public donations was more widely considered very important (62%) than income from local government (53%) or the NHS (48%).
◼ Concerningly, financial security had become significantly worse than it was before the onset of the COVID-19 pandemic for just over one-quarter (28%) of the voluntary and community sector organisations surveyed by DSC, but it had improved significantly for a notable minority (14%).