1982. The Terrence Higgins Trust
On July 4th, 1982, Terry Higgins died from AIDS – or GRID (Gay Related Immune Deficiency) as it was known at that time. As one of the first people to contract the illness in the UK, his experience – and that of those close to him – was an extremely harrowing one.
The cause, treatment and progression of the illness was still a complete mystery. That uncertainty in itself engendered immense levels of stress and fear on Terry, his partner and friends. The fear of contagion also meant that some health care workers were reluctant to get too close.
The fact that he was gay also created a number of other difficulties. His family knew, but disapproved of his lifestyle and weren’t keen to be involved. At the same time the person who did care about him – his partner, Rupert – was allowed only limited contact and excluded from all decisions on the grounds that he was not legally the next-of-kin.
Terry’s death left his partner and close friends devastated. Not only had they lost someone very close to them but they were appalled and angry at the way they had all been treated. They resolved that this should not be allowed to happen to anyone else and immediately set up the Terry Higgins Memorial Trust to achieve this.
Initially focused around a small group of friends, the Trust grew rapidly in the next couple of years.
As AIDS awareness grew, more and more people came on board to help. In 1983 the Gay Medical Association, London Lesbian and Gay Switchboard and the Trust organised a public meeting on the emerging health crisis. This produced a significant influx of new members with a broad range of skills. Within a matter of months the Trust developed a more formal structure. The name changed to the Terrence Higgins Trust, it became a limited company and established a Board of Directors. Charitable status quickly followed.
But, as with AIDS organisations around the world, it relied heavily on the contributions of volunteers. It was only in 1985 that it achieved funding to employ paid staff – a grant from the Greater London Council (and even then, Westminster Council mounted a High Court challenge to the awarding of this grant. Thankfully, it was unsuccessful.)
I worked as a full-time volunteer at the Trust from September 1984 to June 1985. Even in that short space of time I saw the organisation grow rapidly. When I first started there we had one small office and one telephone line. Within a matter of weeks the tabloids had taken up AIDS as daily front page news and our telephone was ringing off the hook. A second phone line was urgently installed just so that our volunteers could get through to the office.
By the time I left, a second office had been rented out (and a third shortly thereafter, if I remember correctly) and at least five phone lines installed. A few months later the first paid staff were employed – Janet Green and Nick Partridge. Whilst Janet subsequently moved on to other things, Nick stayed with the Trust and is now Chief Executive Officer (and has also been awarded a knighthood, to boot).
Twenty seven years on, the Trust has offices around the UK and employs some 400 staff and 1,000 volunteers. It’s an interesting state of affairs.
On the one hand, it’s sad to think that we’re still battling HIV three decades on. On the other, it’s testament that we’ve all come a long way since those terrible dark days of the early 80’s. In the UK at least, there’ll be no more Terry Higgins’.
where was the original Terrence Higgins Trust office?
It started in a small office in Panther House, 38 Mount Pleasant. By 1985 an additional office space was also taken on to accommodate the work and the staff and volunteers. Panther House was an interesting building: it was a large building that provided office space for various small enterprises. We came in one morning to find that the police had smasshed down the door of one of the offices down the corridor from us – turned out they were making gay porn videos in there!
Please know Terry’s family DID NOT reject him. He was from a large family on his mother’s side (Marjorie) my Aunt (my Mum’s) eldest sister from a family of 9!!! I have fond memories of him growing up ???
The family were never told of his illness..
Hard to believe it’s almost 40 years since he passed away ??
Thank you for this information Ann. I’m trying to amend the post as per your comments but would appreciate some clarification from yourself. If his family were never told about his illness, at what point did they find out? Was it after his death or did they get to see him before he died? (Alternatively, if you’d care to rewrite that section of the post I’d be happy add your words) Thanks. Colin