A step-change is needed in local authority health commissioning to fully involve and support Black African and Caribbean communities in their HIV care, a joint report from National AIDS Trust and One Voice Network, says.

The new Unheard Voices report gives key recommendations for best practice in order to ensure meaningful engagement with Black communities living with and affected by HIV. It also demonstrates the effectiveness of co-production, where community members are funded to make decisions on and contribute to the design of HIV services, while recommending further funding to fully realise these ambitions.

Black communities continue to experience health inequalities when it comes to HIV. While Black African people make up 2.4% of the UK population, they comprised 28% of new HIV diagnoses in 2022. In the same year, Black Caribbeans were one of the few groups who experienced a rise in late diagnosis rates, which can have detrimental effects on health outcomes. Despite these communities being disproportionately affected by HIV, the report finds that too often they are not meaningfully involved in commissioning practices.

This new Unheard Voices report aims to support local commissioners to involve Black communities into their service development and practices.

The report recommends that:

• The Government needs to invest in public health to save money overall.
• When planning services, commissioners should include Black African and Caribbean community members in all aspects of service design, and this should be done in a manner which is culturally sensitive and respectful.
• Local authority commissioners should involve community representatives who are living with HIV at all stages of projects and initiatives.
• Local authorities should empower community members and make the commissioning process accessible, in order to create an environment which supports co-production.
• Local authorities should recognise the value of community insight and pay for community members involvement. Commissioners need to engage with community organisations early and regularly, to ensure they are consulted during any tender processes.
• Local authorities should consider how they can help to upskill smaller voluntary sector organisations, by providing mentorship and training to those who have community expertise which would enhance commissioning practices.

The report follows in-depth consultation with London local authority commissioners to gain their perspectives on how practices can be improved. The survey to commissioners was built with insight from both voluntary sector stakeholders and local authorities. The survey asked questions around services, approaches to community involvement and barriers which exist in care access.

Oluwakemi Agunbiade, Policy and Campaigns Officer at National AIDS Trust, said: “There is a wealth of knowledge that commissioners can access from Black African and Caribbean communities by not just consulting them, but sharing the power to shape the services they use every day.

“Being aware of the health inequalities faced by Black communities can fuel disillusionment with healthcare systems in Black communities. The way to challenge that is by supporting the vision community members have for what their healthcare looks like. Messaging and services that don't align with the cultural experiences, attitudes and concerns of a community will never adequately meet the needs of Black African and Caribbean communities.”

Reverend Jide Macaulay, Chairperson of One Voice Network and Founder of House of Rainbow, said: "True progress in healthcare equity for Black African and Caribbean communities lies in empowering them to shape their own services, based on their unique cultural perspectives. By supporting their vision, commissioners play a vital role in facilitating this process by fostering co-production between healthcare systems and community stakeholders, ultimately bridging the gap and reducing health disparities."

The report includes forewords from Winnie Byanyima, Executive Director of UNAIDS, and Florence Eshalomi MP, MP for Vauxhall and Co-Chair of All Party Parliamentary Group for HIV, AIDS and Sexual Health. In her foreword, Winnie said: “Community leadership is not an idealistic dream, it is the proven route to impact. The message of this report could be summed up in this call to action: for the HIV response to succeed, let communities lead.”

In the foreword she provided for the report, Florence Eshalomi MP said: “The health inequalities Black people in the UK face will not be resolved without them in the room. Ending all new HIV transmissions in the UK by 2030 requires a comprehensive and inclusive approach. It is possible to achieve this – but only if we meaningfully work with communities and ensure no one is left behind.”

The Unheard Voices project was formed to end structural inequalities by ensuring Black communities can hold decision-makers to account, influence actions, and contribute to the services they access. It is a collaboration between HIV rights charity National AIDS Trust and One Voice Network, a coalition of 12 Black-led community organisations.

Read the full report on the National AIDS Trust website.

The Unheard Voices project is funded by City Bridge Foundation.