Reflects on what life was like as an HIV nurse during the Aids epidemic
The British Library has added an oral history of HIV health- care workers to its archives, to record the stories of those on the front line of the Aids crisis in the Eighties and Nineties. Contributor
Ricky Gellissen provided end- of- life care at London Lighthouse, a vital HIV/ Aids centre and hospice
Ijoined the Royal Army Medical
Corps when I was 17, with a view to becoming a nurse. I’d been informed that nursing had Crown exemption, so you didn’t have to wait until you were 18 as with other professions. But when I completed my military basic training and passed out, I learnt that wasn’t exactly the case: it only applied to women who started their training at 17 years and 10 months, so that by the time they finished they’d be 18.
At that point, I could either leave, without having to pay as you normally would, and rejoin at 18 to do my basic training all over again, or stay in the army with another trade.
I decided to do that, as going home wasn’t really an option for me — I wasn’t getting on well with my stepfather, who’d made me drop out of college as he didn’t want me pursuing further education. It was suggested I become a medic so that I could put some of that experience towards my nursing.
I had two older brothers in the army, so I knew that, despite all the regulations of being in the military, I’d have some freedom compared with staying at home, as well as accommodation and steady pay.
I was always interested in nursing, or doing something to care for people. As a child, I briefly flirted with the idea of becoming a doctor, but I thought against that because the expected level of interest in the sciences was too much. I could handle biology, but there was no chance of chemistry and physics, too. I did, however, have the qualifications for nursing, which still allowed me to be involved in looking after people.
I knew I was gay from a young age; I
remember having feelings towards men before I was even aware it was sexual. I’d also had sex with people prior to joining the army, before I was a teenager.
In the circles my brothers moved in, there was a lot of talk about who was a virgin, which in their eyes I was because I’d never had sex with a woman. In retrospect, I’d probably had more sex than them.
It was illegal to be openly gay in the army when I joined, but it was a crime to have gay sex under the age of 21 at that time, anyway. So, whether I was in the army or not, I was already a criminal in the eyes of the law — I was risking a penalty for having under- age sex in the first place, so did it really matter if I was doing that in a uniform?
I left the army in 1987 after realising that my efforts to transfer into nursing weren’t going anywhere. I had a friend who worked in the chief clerk’s offices and he had pulled out the confidential file and told me that a senior officer had written that I was never to be interviewed again for a nursing position.
Tied in with that, I was also wary of being caught out for being gay. There was one guy who had found a gay- porn magazine in my locker in Germany and he was going around telling people about it, but he never actually put it through as evidence.
When I was first posted to Germany, it was in the middle of a massive witch- hunt for gays, with a big court martial going on, so you went into that atmosphere on day one.
When I decided I was going to leave, I applied to various places in civvie street to do my nurse training and when I was offered a place, I gave my one year’s notice.
I did my nurse training with the Wigan Health Authority, and the later part under Tameside and Glossop Health Authority and took a job on the ward I was allocated to for my last placement.
During that time, I was living and working in Ashton- under- Lyne, Greater Manchester, and I was out about my sexuality — although one of my colleagues, a charge nurse, told me not to talk about it on the ward itself. He was petrified that patients would find out.
At that time, I was also doing a significant amount of volunteering work in my spare time, at Manchester Aids- Line ( which later
“When I was posted to Germany, there was a witch- hunt for gays”
became the George House Trust), the Lesbian and Gay Centre, and Body Positive North West, and I was also involved in the Village Charity, the founding organisation behind what is now Manchester Pride.
Once, I was asked to go on a panel debate programme to talk about Operation Spanner, which was where the government was looking at the legality of consenting S& M acts between homosexuals. I used to wear leather and hang around with others wearing leather, so there was an assumption I was into S& M.
I went on the show after I’d finished an early shift, and people at work knew about it. The charge nurse took away the television from the ward itself and closed the patients’ sitting room early, so that by the time the programme came on air, no one would be able to watch it.
That was the kind of reception I was getting, and that was the attitude around gay people in general — never mind HIV.
I went on a course called the ENB 934, which was all about the care of people with HIV and Aids- related conditions. I seemed to be the only person there who had actually volunteered for it rather than been sent, because some of the attitudes towards gay people and towards HIV were outrageous.
We were given a questionnaire that said things like, “When did you know you were heterosexual?” and “Who did you confide in?” — all those kinds of questions that gay people are asked. Some people were livid, they just couldn’t process it.
There was also homophobia when talking about risk factors, with people failing to understand the biomechanics of gay sex in terms of it not necessarily requiring an erection from all parties.
After three years, partly because of those kinds of attitudes, I began to look for positions in HIV nursing. I felt I had skills and values that could be used in caring for those with the virus.
I’d seen that there were only two areas in nursing where the level of care you were able to give to patients matched the level I felt should be given, due to restrictions on funding.
One was casualty, which I had a natural affinity for from being a medic, and the other was palliative care, to make the end of someone’s life as comfortable as possible.
The idea of working in HIV health care came through almost like a rallying cry.
It just made sense — why am I going to go into some other area, when there’s somewhere I can go and make a difference to my community? It’s one of those things where those who can, should.
I was aware of London Lighthouse, which had opened in 1988, because I’d had friends who were looked after there.
It was one of the world’s most famous HIV and Aids centres and hospices — Princess Diana used to visit it, and I also knew of it through a 40 Minutes documentary on the BBC, and an earlier coincidence where a cartoon illustrator friend of mine had contributed to a special edition comic called Strip Aids that was a fund- raiser for the centre, before it had finished being built.
What was different about London Lighthouse, and what made it such a beacon for HIV health care during those very difficult and dark years, is the model of care we provided to our patients.
In the NHS, patients would have to give the name of their next of kin, from whom they might be estranged due to having HIV, whereas at Lighthouse, we allowed people to choose their circle of care.
Their name would go in the middle of the form, with a circle around it, and you’d add as many spokes as necessary to it, with a person’s name, contact number and the nature of their relationship.
We would never confirm or deny whether someone was a patient at Lighthouse. We’d sometimes have people calling up, trying to find out, and if we weren’t aware of them being a known person for one of our patients, we refused to give any information because they might not be in what that person considered to be their logical family — to borrow a phrase from Armistead Maupin.
Some of the residents — as we called them — had large and supportive families coming to see them. I remember one, a gentleman from Ireland, hadn’t been out to his family but after he was admitted, they all came over to visit him.
We did our best to accommodate them where we could; one of the sitting rooms effectively became theirs. You’d have some of them in the room with him and the rest would be in the non- smoking day room, sometimes even sleeping overnight.
There were between 15 and 30 people at any one time involved with this one patient — that was the most unusual one we had.
On the other hand, I can remember another resident who had family literally fighting over them on his deathbed. We had to try to manage the conflicts as best as we could.
As well as palliative care, we also gave respite care, to give their carers a break or to alleviate their circumstances and conditions temporarily. From a staffing perspective, half were general nurses and half were mentalhealth nurses, which was good not only for the holistic nature of care for patients but also for the transference of skills between the staff members.
As the Aids crisis went on, and effective treatments were developed, the nature of the people who came to Lighthouse changed.
Over time, we noticed an increase in people
“Attitudes towards gay people and HIV were outrageous”
needing sub- acute care: for those not needing intensive care but who weren’t ready to live independently at home.
At the end of 1998, the residential unit at Lighthouse had to close, to allow the rest of the centre to stay open. I remember being with some of the residents at the time the decision was announced and we heard a big cheer from below as the news was delivered. We had to arrange transfers for some people to finish their palliative care elsewhere.
I distinctly remember one resident saying she wanted to die before Lighthouse closed because she’d made up her mind that this would be where she was going to pass away.
It wasn’t an easy phase, and it wasn’t because there was no need for it, but unfortunately the funding wasn’t there any more. I was made redundant, along with about 40 others.
After six months of agency work, I started a job on an HIV ward at St Mary’s [ in London], then became an HIV clinical nurse specialist there. I’m now a hepatitis nurse, but there’s still a cross- over with HIV patients needing treatment for hep C.
I wanted to take part in The Aids Era: an Oral History of UK Health- Care Workers because there’s value in preserving our stories, and I don’t think we recognise that enough.
Those years at Lighthouse were an acutecrisis period, and although we’ve moved significantly out of it, there’s nothing to say that we won’t get something similar in the future. People need to know what the challenges were and how they can be dealt with.
The issue of the stigma that surrounded, and still surrounds, to some extent, HIV is important — even if you look at some of the daft comments going around about coronavirus now.
I see it in my hepatitis work too, where people from the gay and HIV communities will proudly display their HIV status on dating apps but shun people with hepatitis.
I’m proud of my work at Lighthouse, of helping people to have a “good death”. I can’t think of a better way of putting it.
Health- care workers possess an internal need to help others, it feeds something in you, and it’s nice to know you’ve done a good job, to have made someone’s death as easy and comfortable as possible.
You can’t bring anyone back to life but in those moments where you talk about people and remember them, there is an essence of them being alive again, for a brief moment.
We suffered such loss during that period, of brilliant, valued people, and so many of them came through Lighthouse.
It’s the Museum of Brands now, and that’s fine: buildings change over time, but there’s little to mark it, to remember the people who passed through it, so this oral history archive is just one part of that.
As with any part of history, if it’s not recounted, it’s lost, and the chance to learn from it is lost, too.
The Aids Era: An Oral History of UK HealthCare Workers is a project funded by the National Lottery Heritage Fund, launched in November at an event supported by Gilead Sciences. Audio files and transcripts from the project are available at the British Library