Waverley Care's Milestone House transformed from a palliative care to a treatment centre in the mid-90s, amid an improvement in the treatment options offered to those affected by HIV.
This article was originally published in 'Discover' magazine, issue 48, summer 2023.
Words: Barbara Burke.
This story is told in our Collections in Focus display, curated in partnership with Waverley Care. Criz McCormick, who has spent his life advocating for improved healthcare for gay people and communities affected by HIV, told us about his experiences and involvement in Waverley Care…
"When I first came out, I realised that it was dangerous – very dangerous," Criz said. "By just going to a gay pub I could be beaten up, I could be attacked – I’ve been hospitalised a few times. So very quickly you start to feel as if you’re all in the same boat.
"I realised that there was no information. I was desperately trying to find some about HIV and there was nothing accurate."
Criz quickly realised that many of his friends his age were just as scared and as worried as he was.
"Then the first person we actually all knew died," he said. "We went to his funeral and at first the family told us that we couldn't come in. Then they said that if we did come in, we all had to sit at the back. Then they wouldn’t let us put any flowers out, and they ripped up the cards we had given.
"We started to realise … that was Frank. Then Billy, he was hospitalised. The nurses looked as if they were wearing hazmat suits. He deteriorated because of lack of human contact. He was a very tactile person. One of my friends became a nurse because of that, to try to educate from within. My response to it was, 'I have to change things. I can't do it, or be a part of this'.
"For evil to flourish, good people do nothing. I’ve been involved ever since."
To this day, people living with HIV still carry the burden of decades of discrimination and misinformation about the virus. Criz's own quest for facts about HIV led to him working at Milestone House.
As a teenager, he joined a youth group seeking information but they had none to share.
He then joined a gay switchboard, which existed to inform and support callers, but they were also light on facts. However, they were aware of an organisation in its infancy, Scottish AIDS Monitor, that was trying to combat misinformation about HIV and AIDS. Criz began advising them about young people’s experiences and perspectives.
He acknowledged that many people have differing accounts of how the organisation was established, saying: "Scottish AIDS Monitor was formed by Derek Ogg in his kitchen in the 80s with basically him saying, 'We've got to do something about this – there’s an awful lot of misinformation – we need to make sure the information we have is accurate, then we [gay men] need to tell each other through social diffusion, and we need to get other people on side'."
"Other people" meant those who knew how to navigate the system – people experienced in law, finance, healthcare, and people in positions of influence who could encourage the NHS to take the epidemic seriously – that it had the potential to wipe out significant numbers in Scotland. Collectively, they advised the NHS to provide free condoms and lubricants, as well as needle exchange services.
"We take these things for granted today – that it's perfectly reasonable," Criz said. "At the time people were genuinely horrified. They saw a needle exchange as encouraging people to inject. They saw free condoms being handed out as appalling, in encouraging this promiscuity."
Information was shared through leaflets, posters, activities and events. Then Waverley Care began planning for the development of a palliative centre. People living with HIV were consulted on the services they wanted.
This approach was decades ahead of its time – person-centred care was not always considered at the time.
"Again, you would think that’s a completely rational thing to do today," Criz said. "At that time, late 80s, it was considered extraordinary to do that – no one else was doing that.
"Milestone was doing it before Milestone was built. They asked about the design, the shape, the colour … everything. It was very much led in that way."
A creche, for example, was among the things that people asked for. It was difficult to manage HIV and a child. Milestone provided a space for people to place their child and know they would be safe among people who would not judge.
"If you were the child of someone who had HIV you were treated appallingly at school and nursery or wherever," Criz said. "You were given your own cutlery, a separate plate.
"The misinformation about how HIV was spread continued well into the 90s and beyond."
Through his work with Scottish AIDS Monitor, Criz started volunteering at Milestone House. "There was always a brilliant atmosphere," he said. "You wouldn’t think there would be because obviously people were dying. But there was a fantastic atmosphere, especially when we had fundraising events, or when somebody would come up with a new idea.
"There was a freedom and a support for how things were done. But there was this other thing – whether you were gay, lesbian, straight, transgender or whatever, the reality of the situation was we were all in the same cause. So it brought us together, whereas before we had maybe been a wee bit separate from each other."
Milestone House provided services such as massage and aromatherapy. Criz encouraged group activities with the residents – be that ukulele, candle making or workshops about making stained glass windows.
"Food became very important," he said. "Visits, activities. They [the residents] noticed very strange little things – children's laughter. The creche had its own benefits.
"Every room had a window out to the garden. Gardens became very important as well for walks, being able to make contact with nature. We had an open-door policy – anyone was allowed in at any time. I know that for people who were at the end of life, Milestone made a vast difference. The techniques we used were copied. Things like occupation, keeping people's minds and hands busy with activities, whether that would be creative or whatever.
"Sometimes it's the very small things – a clean sheet that's smooth without any creases on it. It might sound as if it was a very simplistic thing, but if your skin hurts, it becomes the world to you that somebody's conscious of that. And that they've actually made your bed properly so it's comfortable for you."
When medication arrived in the mid-90s, there followed a dramatic shift in the care offered to people with HIV.
Milestone House transformed from offering palliative care to a treatment centre.
"One guy was virtually skeletal – he took the medication and, I am not joking, within a matter of weeks, I actually walked past him because I didn't recognise him. He was so different. He's still alive today," said Criz.
Stigma and misinformation around HIV and AIDS remained, however. From the mid-00s, Criz delivered training to staff in bars – mostly gay bars – in Glasgow, Edinburgh and other areas as part of his job as a support worker for Gay Men’s Health. The idea was to give bar staff enough information to correct any derogatory remarks they overheard, or to point people to sources of accurate information and sexual health resources.
Over the years, medical advances in HIV treatment have meant people cannot pass it on through sex, often referred to as U=U (undetectable=untransmittable), and people diagnosed with HIV can live a long and healthy life.
HIV prevention has also developed, with a medication called PrEP available to people at risk of HIV which prevents infection. A medication called PEP is available to those who have been exposed to HIV which also stops HIV in its tracks.
"PrEP's been a game-changer," Criz said. "The figures have plummeted." Criz is one of the researchers who advised Waverley Care and the Library on this collaborative display, recording oral histories, ephemera and other material to tell the story of Waverley Care. At the heart of the display is a timeline – not only for Waverley Care but HIV.
"We're at a point now where people don’t really know the details of what was going on in the 80s," Criz said. "An awful lot of this stuff, I’m afraid, has become forgotten."
He describes the display as "very visual", with arts and crafts made at Milestone House – stained glass, mosaics, drawings and poetry. Also included is the 'Red Hot + Blue' songbook from the benefit at which Annie Lennox (pictured left) performed for AIDS charities, as well as oral histories from individuals who lived at Milestone House.
"There's a value to the information that people remember as eyewitnesses," Criz said. "It's easy to tell the story of HIV in Scotland because there is still a lot of information out there. It's difficult to give it a human face."
Criz McCormick is a Senior Support Worker at Mainstay Trust. The Collections in Focus display, ‘Blood, Sweat and Tears: Scotland’s HIV Story’, runs until December 2023 at our George IV Bridge building in Edinburgh. The collaboration is supported by the National Lottery Heritage Fund.
Read the full 'Discover' issue:
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'Discover' issue 48 pages 1 to 21 (PDF) (4.17 MB; 21 pages)
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'Discover' issue 48 pages 22 to 36 (PDF) (3.34 MB; 14 pages)