There’s a moment Kieran* remembers well that sums up the stigma and fear of being a gay man living in the city branded the “Aids capital of Europe” at the peak of the HIV crisis.
Young at the time – barely in his 20s – and having already seen his desperately ill partner’s immune system crushed by the HIV virus, he was visiting one of the city’s hospitals when he noticed his cousin driving by.
Instead of waving and shouting hello, he ran in panic and hid with heart thumping behind the nearest car. He stayed until he was sure the coast was clear. “I didn’t want to have to explain to him why I was there,” he explains.
It could easily be a scene from It’s A Sin, the Channel 4 drama written and created by Russell T Davies which follows a decade in the lives of a group of gay men and their friends in London at the height of the HIV/Aids crisis.
The channel’s most binged series ever, it recounts in harrowing detail the dreadful toll the virus took on young lives and the prejudices they faced from others – including their own families, doctors and nurses.
For Kieran, the drama was horrifically real. His partner of five years would be among Edinburgh’s horrifying toll of young men and women lost to the virus; in his case, a slow, dreadful demise that left the 30-year-old with dementia.
Grieving alone, mentally and physically depleted from having given all the care he could to him, Kieran was now at risk of losing the home they had shared and facing coming to terms with his own HIV positive status.
He remembers stashing away some of his partner’s unused morphine – just in case he found himself facing the same agonies that he had.
“I thought I hadn’t much time left,” he recalls. “I thought I was going to die and I’d use the morphine if I had to.
“I was heartbroken, it was the first time in my life I’d been alone and everywhere I went they were telling me I was going to die.
“It was terrifying.”
Hope came in the form of a single-storey, purpose-built hospice, the first of its kind in the UK.
Milestone House opened its doors to its first patients 30 years ago this week, a ground-breaking moment in how people suffering from complications of HIV were cared for.
Having been shunned and stigmatised, suddenly there was compassion and comfort to carry them through life’s final journey.
While today HIV is no longer a death sentence, in late 1980s Edinburgh the prospects were grim, says Liz Marr, senior manager at Waverley Care, the charity which founded the hospice. No longer operating as a hospice, it continues to work with people affected by HIV and Hepatitis C and more recently with vulnerable homeless people affected by and at risk of Covid-19.
“Positive tests were coming in thick and fast and it was a young generation being diagnosed with this terminal condition,” she says. “They used to get quoted a five-year life expectancy.”
In Edinburgh, which at one point accounted for around 50% of HIV cases in Scotland, the virus spread rapidly through drug users sharing needles and gained a foothold in the city’s small gay community.
Caught up were women infected by drug-using partners. Subsequently, their babies were born showing signs of the virus, and would tragically become orphans to HIV.
While at national level, a public awareness campaign sparked fear and fuelled prejudices, warning of dying of ignorance and terrifying tombstone imagery.
For patients whose immune system was so battered by the virus that they developed Aids-related conditions such as Kaposi sarcoma – a cancer which forms in the blood leaving purple blotches on the skin – toxoplasmosis, pneumonia, CMV retinitis which affected their sight and HIV encephalopathy which led to dementia, help was sometimes hard to find.
“I think there was discrimination, but it was out of fear and ignorance” says Liz. “Milestone gave people a safe space to be open about their diagnosis and get the support they needed.”
The hospice plan was at least four years in the making. Initial efforts to build it in Torphichen, West Lothian, collapsed after a furious public meeting in the village ended with locals reportedly chasing officials and charity out the door.
Focus shifted to the grounds of the City Hospital in Colinton, where its planned arrival sparked protests, vandalism and thefts from the building site. It would be a campaign of support led by children from the nearby secondary school, Firrhill, that helped transform attitudes.
The £2 million 20-bed unit, funded by Lothian Health Board, Lothian Regional Council and the remainder raised by Waverley Care charity from donations, opened in mid-February 1991. Around 100 patients arrived for care in the first year; a third did not make it home again.
Liz arrived four years later after working in cancer palliative care, drawn to Milestone after losing a loved one to HIV in the early days of the crisis.
Her instinct then – naturally – had been to offer him her care and support. Instead, she was unable to see him. “I knew the impact,” she says.
“In my first three weeks at Milestone, seven people died. It was a very high death rate.
“It was hard seeing people so ill so young, everyone was young and very frail, it was striking to see but it never felt like a sad place.”
Instead, she describes a relaxed place of music, laughter and art, sometimes chaotic, and with children running through the corridors.
Patients were encouraged to explore art therapy; some even designed their own coffins. Sir Sean Connery visited and, in October 1991 the Princess of Wales sat with a mother and her two young children and helped shatter stigma.
“No matter what circles you mixed in whether it was gay community or drug community, everyone knew each other in Edinburgh,” Liz adds. “We were seeing parents who had lost three or four of their children, there were cousins coming in, people that used to use drugs together.
“The gay community was very small, everyone knew each other. Every loss was felt by these communities.
“And there were many people who hadn’t mentioned their HIV diagnosis to families, they were very isolated. “ For viewers of It’s a Sin, the apparent lack of compassion and care given to HIV patients by the health service at the time made shocking television.
Kieran, who 30 years on still worries about divulging his full name, recalls when he and his partner sought help. “We were being met with ‘Gays! You’re not allowed in!’.
“We were getting doors slammed in our faces at the dentist, the GP. People didn’t understand, there was a blind panic. So we just stopped going to those places.”
There were other problems, he adds.
“Because our relationship wasn’t recognised, it was difficult to access care as a couple, nothing was legally recognised, we weren’t married and we hit obstacles everywhere.
“Milestone gave me a place where I knew he was safe,” he continues. “He ended up with dementia, he was six months in Milestone by which time his cognitive function was almost non-existent.
“He was there, but the person I’d known for five or six years was not.”
Milestone House transformed care and brought hope, he adds.
“It was the first place where people could access peer support and meet others with the condition who could help them get through the trials and tribulations: how to tell you family, the kids, who is a good doctor… “You couldn’t talk about it at home or with your family or at work, they’d freak out. They’d slam doors and throw you out of your flat. You didn’t want that.
“But you could be free and open there.
“Everywhere else that I went they were telling me I was going to die,” he adds. “I think it was the place where I learned to live again.”
*Name has been changed by request.