Amid a climate of fear and ignorance, some healthcare workers went out of their way to provide support and care for patients with HIV. One still living in Brighton tells their story to Jaq Bayles
An ambulance pulls up to a hospital, dispatching medics in full ‘space suits’ to drop a patient at the doors before fleeing the scene in the vehicle, which will now be out of commission for a full day while it’s fumigated.
It’s a scenario that has become a familiar sight on news bulletins in recent weeks, but this isn’t the potentially deadly airborne Coronavirus 2020 – this is the height of the HIV epidemic in the late 1980s.
At the time, non-specialist healthcare staff could be expected to walk out on their work should a patient wander onto the ‘wrong’ ward, such was the fear and stigma surrounding the disease. Of course, much more is known about the causes of transmission now, but back then it was considered a threat to the general population, a disease that might be contracted if you so much as looked at someone who was afflicted.
Yet at the forefront of patient care were people who dismissed these fears and went out of their way to preserve the welfare and dignity of their charges in the face of sometimes blinding ignorance.
One such person is Nicky Perry, now operational manager (Clinical Trials Unit), Brighton & Sussex Medical School, who recently finished a project that involved interviewing 61 healthcare workers who were involved in HIV care in those early times.
“I started nursing in 1988 in HIV at Chelsea & Westminster Hospital (previously St Stephens),” recounts Nicky. “I was doing agency work and they rang me one day and said they needed someone to go and do an early shift, but they had to warn me it was ‘on the Aids ward’ – they actually whispered it down the phone.”
Nicky was one of a close-knit team of healthcare professionals working on the specialist HIV Thomas Macaulay ward, and her story of that time is uplifting and depressing in equal measures.
“I had done cancer nursing so had worked with people who were dying and thought, how different can it be?” she says. “I went to do a shift on 17 June 1988 and didn’t leave. It was a bit of a revelation that nursing could be so holistic.
“Back then healthcare was medically driven – you did what the doctors told you. It was very hierarchical but HIV turned that on its head. For the first time you were on a ward and nobody knew what they were doing, everyone sought advice and support from each other. We actually asked patients what they wanted and they told us how they wanted to be cared for. We were all in it together, nobody had the answer.”
The doctors gave way to nurses when they realised how much better equipped they were to support the patients because they had more experience of talking to them about death and dying
“There would be top consultants saying: ‘Nicky I don’t know what to do – can you go and speak to someone. But we felt like family – it was fun, the people were just lovely. We all got on. We were caring for the patients but they really cared about us, so there was that lowering of boundaries. Patients became our friends, they were in the same age group and peer group. They were coming in repeatedly so we were getting to know them and their partners.”
Ignorance was a great driver of people’s fear, but it was also that which led others to say: “We have to make a difference and protect these people from the stigma and discrimination 
and make somewhere safe for them.”
Nicky continues: “There was stigma but it was born out of fear and uncertainty, even within our own healthcare profession. There was public fear and anxiety but we were also trying to make it better.
“Our job was to make people feel safe and cared for. We were dealing with patients’ families – it was so multi-layered. As well as this horrible disease people were dying from there was the family dynamic. People saying ‘I have not seen my parents for years, I told them I was gay and they threw me out’. Or ‘I haven’t told them and now I have to tell them I am gay and dying.’
The Thomas Macaulay ward’s patients were predominantly gay men and Nicky recalls how many families “were really horrible to their sons or didn’t acknowledge their partners. We were family counsellors too”.
But, paradoxically, the fact that many wanted to wash their hands of HIV worked in favour of those who were invested in helping their patients.
“Stigma was a barrier but we were allowed to get on and do what we wanted to do,” recalls Nicky. “Management said Thomas Macaulay is an Aids ward, we will let them get on with it. People were just glad someone was sorting it out and they didn’t have to bother. We could be somewhat maverick in the way we cared. If someone wanted to smoke a spliff because it was the last spliff they were ever going to have, it was like ‘fill your boots mate’, or ‘let your partner sleep over’. You could not have done that on a medical ward.”
And when the authorities finally stepped in, no matter how misguided the images of tombstones and icebergs accompanying the Don’t Die of Ignorance campaign may have been, “it was the first time the government came together” – with the exception of the Tories as Margaret Thatcher didn’t approve.
That collaborative work, which pulled together many organisations, led to everyone giving the same message and began to change the landscape for everyone involved in HIV and Aids work.
“We often didn’t tell our friends or families what we did for a living because we also faced that stigma of working with HIV,” says Nicky. “We were never quite sure what people’s reactions would be. That’s why we formed such strong relationships with each other, because we were in a safe bubble.”
It was a bubble that extended outside of work. “If I was out people would ask what I did and I’d say ‘I’m a nurse’ and they would be interested , then I would say I worked on an Aids ward and you’ve never seen them run so fast. A lot of us hung out at gay places because they understood. On a Saturday night in straight places. sometimes people were genuinely interested but I didn’t want to be giving them sex education lessons. I would rather go to Heaven than the Empire on Leicester Square.”
After two and a half years on the ward Nicky moved into HIV research, so how is the climate now?
“The stigma about having HIV still exists and that is probably the biggest killer. People don’t want to come for testing. You can tell your employer you have cancer but HIV is still seen as somehow you have done something bad and that’s why you have it.”
You can see a summary of Health Care Workers in HIV: An oral history in the UK Aids era and listen to some clips here:
Photos by Gideon Mendel, taken from The Ward, published by Trolley Press
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