Terrence Higgins Trust group selfie in blue t-shirts

A new three-year project from HIV and sexual health charity Terrence Higgins Trust, funded by the National Lottery, will provide a blueprint for meaningful beneficiary involvement for the whole third sector. 

The £1.1 million investment from the Big Lottery Fund, the largest community funder in the UK, will allow the project to take ‘nothing about us without us’ to a whole new level and answer the question of how to genuinely involve beneficiaries and those with lived experience across an entire organisation. 

Drawing on advice from the public, private and voluntary sectors, the charity will bring together innovative new approaches to adapt how it works to ensure it’s delivering activities that reflect the changing needs of its beneficiaries. 

It is by putting people in the lead that charities can ensure their activities and priorities reflect the constantly changing needs of who they are there to serve. 

Crucially, the project will also have a direct impact on those using their voice and experience to make meaningful change for the future – and not just benefit the charity.

The new project has a strong digital focus and the first stage will be utilising social marketing techniques to reach people who wouldn’t ordinarily engage, with the project plan to be beneficiary-led.

This programme will drive forward Terrence Higgins Trust’s work to end new HIV transmissions, support people to live well with HIV and ensure good sexual health is a right and reality for all.

The charity was set up in 1982 following the death of its namesake Terry Higgins, who was one of the very first to die of an AIDS-related illness in the UK. It’s hoped this project will futureproof the charity and ensure it is always meeting the needs of people affected by HIV and poor sexual health. 

Women and HIV: Invisible no longer women

Ian Green, Chief Executive of Terrence Higgins Trust, said: ‘We’re thrilled to launch this new project to revolutionise beneficiary involvement across our charity and learn with the wider third sector.

‘Meaningful engagement across all areas of an organisation is never the easy option or the quick one, but it’s of vital importance in ensuring what you’re doing is what you should be doing. This is not something Terrence Higgins Trust has always got right. We know, however, it is crucial if we are to adapt and respond to the fast-paced changing needs of people now and in the future.

‘HIV has changed faster than almost any other health condition. In just over two decades, effective treatment means an HIV diagnosis has gone from a virtual death sentence to a manageable long-term condition when diagnosed early.

‘We look forward to learning with all sectors to innovate and test out new ways to properly involve our beneficiaries. It is only with them that we can ensure that what we do is fit for purpose and reflects what is needed in 2019 and beyond.’

James Harcourt, England Grant-Making Director at the Big Lottery Fund, said: ‘People understand what’s needed in their communities better than anyone else. That’s why we’re proud National Lottery funding is supporting Terrence Higgins Trust to put those they support in the lead.

‘It’s great that others in the sector will be able to learn from this project which puts people at the heart of an organisation’s development and delivery, and creates a culture of co-production.’