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How it all began

Terry Higgins

Terrence Higgins Trust is the UK’s leading HIV and sexual health charity, providing a wide range of services to more than 100,000 people a year. The charity also campaigns and lobbies for greater political and public understanding of the personal, social and medical impact of HIV and sexual ill health.

How did the charity get its name?

Terry Higgins was one of the first people in the UK to die with AIDS. He died aged 37, on 4 July 1982 in St Thomas' Hospital, London. By naming the Trust after Terry, the founder members – his partner and friends – hoped to personalise and humanise AIDS in a very public way.

When was the charity set up?

In 1982, after Terry’s death, his partner Rupert Whitaker and his friends Martyn Butler, Tony Calvert, Len Robinson and Chris Peel met to discuss what could be done. Terry Higgins Trust was subsequently set up by Martyn Butler and Rupert Whitaker with the intention of preventing others from having to suffer as Terry had. It focused on raising funds for research and awareness of the illness that was then called Gay-Related Immune Deficiency (GRID).

The following year, a public meeting about GRID was organised by London Lesbian and Gay Switchboard and the Terry Higgins Trust at which a small group of committed volunteers from a range of backgrounds came together. This included Tony Whitehead, who went on to become the Trust’s first chief executive.

In August 1983, the Trust was reborn as a formal organisation, Terrence Higgins Trust, with a constitution and a bank account. By November it was a limited company with a Board of Directors, and by January 1984 had gained charitable status. It provided direct services immediately, including buddying/home-help, counselling, drug- and sex-education.

Terrence Higgins Trust was the first charity in the UK to be set up in response to the HIV epidemic and has been at the forefront of the fight against HIV and AIDS ever since.

How the charity has developed

From its small beginnings in a flat in central London, Terrence Higgins Trust has grown to become the UK's leading HIV and sexual health charity, and one of the largest in Europe. It has always been at the forefront of the fight against HIV and AIDS, and since it was formed, the needs of people living with, and affected by, HIV have been fundamental to its development.

The charity's roots were in the gay community and, for many years, the HIV epidemic in the UK affected mainly gay men. Nonetheless, we've always worked in an equal way with gay men, haemophiliacs, sex-workers and drug users from the start.

As the shape of the epidemic here has changed, so has the charity. There are now nearly as many African people living in the UK diagnosed with HIV and in care as gay men now, though the majority of new infections continue to be among gay men. So existing services have been developed and new services introduced to meet ever-changing needs.

But the involvement of people with HIV has remained constant, and volunteers and staff who are living with HIV have, and always will be, central to the charity. Of the people who work with us, more than half are drawn from the communities we serve. More than 10 per cent of our employees are people living with HIV, 25 per cent are from black or minority ethnic communities and more than a fifth are gay men.

In more recent years, the charity has also developed sexual health services – firstly for people living with or at risk of HIV, and then more broadly for the general population, especially young people who are most at risk of sexual ill health. Again, the charity has grown and evolved in response to the needs of people using its services.

Partnerships and mergers

Terrence Higgins Trust has a strong record of collaboration with other agencies in both the voluntary and statutory sectors, and believes very firmly in the benefits of partnership working.

Since 1999 we have merged with a series of other organisations, both in London and further afield, and now has around 400 staff and more than 1,000 volunteers.

These mergers have brought with them a wealth of expertise and experience, enabled the charity to provide services across England, Scotland and Wales, and strengthened its response to HIV and other sexual health issues affecting the UK.

In 2010, Terrence Higgins Trust continued this strategy when we stepped in and quickly merged with the HIV charity Crusaid to ensure that its Hardship Fund remained available to help people living with HIV in greatest need.

During 2010 and 2011 we expanded our reach by working with the Elton John AIDS Foundation (EJAF) to launch LifePlus, the UK’s first national long term condition management programme for people living with HIV.



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