When I began training to be a clinical psychologist with children at the Middlesex Hospital, everybody expected me to go on and work in paediatric psychiatry. Instead, I read about HIV and thought, I can do this. In 1987, in the six months before I qualified, I read everything I could, although I had no practical experience. I also didn’t know how gay men would accept me – as a straight woman.
I went to Broderip ward, which was full of men who were obviously terribly sick or dying, yet everybody was terribly pleasant. That first night I went home in shock but I went back the next day, and I stayed.

Our brief was to see anybody who would benefit from psychological support. Doctors were desperate because they weren’t used to treating young men who were very sick and who died. We saw people who were scared of being tested; those who’d had a positive test but were still physically well, and those who were sick on the ward, right up to the moment that they died. There were more people than there were hours in the day, and different people needed very different things.

A doctor would tell somebody their test results, then they were sent straight to a health advisor. If they were negative they could be given advice about how to stay that way. If they were positive, we could give them reassurance that they weren’t on their own, but when people are in shock you can’t do very much more. The most frequent reaction was a quivering lip and sadness. A few would sob uncontrollably for hours and the health advisor would look after them. More worrying was people who smiled, thanked the doctor and acted as if somebody had told them something really good. I’d try to see them the same day and postpone them going home. Those were the ones, in that state of denial, who could end it all before it became too late to stop them. We called them ‘smilers’. Everybody knew to be on alert. Someone would call and say, ‘We’ve got a smiler. We’ve just told him that he’s positive and we’re worried.’

By preventing somebody going off on their own, you could get them to a state of acceptance and ensure that they were safe. We knew that some people took their own lives. It was hard to gauge exact numbers because coroners don’t really like to give a suicide verdict, but I can think of instances where we heard that somebody drowned in the bath, or had a car accident. It was put down to ‘misadventure’. On the whole, that was people without any support. By providing good, integrated care, we kept those numbers down.

In the early days, people were often only diagnosed when they were quite sick, perhaps if they had their first PCP or Kaposi’s sarcoma. The time then between being sick and dying was pretty short and so they knew, we knew, everybody knew, that time was limited. Nevertheless, you can’t just go in and say, ‘Okay, let’s talk about the end.’ You had to help them to a position where they wanted to talk about mortality when they were ready.

The first stage was for a patient to actually come to terms with it. One told me, ‘I’ve started this new Bristol Diet for cancer. It’s going to help.’ A couple of days later he changed to another diet. Then he started taking a cocktail of vitamin pills. Finally, he said, ‘It’s not going to work, is it?’ In the space of a week he brought himself through thinking he could conquer it to knowing he couldn’t win.

I saw another patient, an actor, who kept being ill but then remarkably recovering and going off and doing something equally remarkable, like somehow getting into the States. If they’d known he was HIV positive he’d have been sent back. One day I walked in to find him reading a catalogue.

‘I’m just choosing my own coffin,’ he said.

We chose one. It was a signal to me that we could move on and talk about what would happen next. He died some months later, very peacefully. Knowing that somebody’s days were numbered and that I was part of helping them get the very best out of their life, however many weeks, months, or years, was worthwhile.

Initially, people wanted to talk about how to get on with their lives, and not discuss the end, or other problems at all. Often, they were covering up two secrets, not just one: their HIV status and their sexuality. For some, relationships became the main topic of conversation. Perhaps the relationship they were in was not necessarily one they’d banked on staying in for very long. If there was a practical problem, like money, we’d make a referral elsewhere. In those days THT had volunteers who were experts in finances or law. For a devout Christian, the hospital Chaplain might sit with them. We would deal with the emotional impact of what was happening. Anxiety was the major psychological problem; such anxiety that people couldn’t move forward. If you didn’t deal with the anxiety then people would suffer depression or decide that enough was enough.

Hospitals changed dramatically when HIV wards were set up. On the general ward there might be visiting from 2-3:30pm with a maximum of two at the bedside. But staff on HIV wards realised the importance of helping people all they could and so, on the whole, it was open visiting. If partners wanted to stay, somehow a mattress was provided. We learned a lot about integrating and looking after the patient as a person rather than as a medical condition. It was a very pleasant atmosphere to work in and never judgemental. I knew them as human beings, not as the person in Bed 8.

I saw a lot of partners, too, because the service agreed that if I could support a partner who could then support the initial patient then everybody won. Some did more than you could ever imagine for their sick partner. Others needed more support themselves than the index patient did. Sometimes both would be positive and you’d see them together.

Family and parents varied in their reaction, sometimes going from not knowing anything about gay men or HIV, or even very much about sex, to becoming great organisers of support for the people on the ward. Others could be nasty. There were a very few who disowned their children.  There was still a great deal of discrimination and stigma. Every so often somebody would arrive in an ambulance from another part of the country with people dressed in space suits to bring them in. Stigma was prevalent beyond the four walls of the ward.

If a politician, pop star or a well-known actor was sick, the doctor would arrange somewhere off site to see them to avoid the public glare. Doctors who were HIV positive themselves would go to a hospital where they thought that they weren’t known in order to be treated, but they had to be so careful about anybody finding out. There was such enormous stigma attached to medics who might be positive. The perception was that whatever they did to a patient would automatically infect them, even though all the doctors I knew were very clear on how to prevent infection. They had to register as positive to be allowed to practice, but there were guidelines that prevented them from performing any invasive procedures. There were some pretty uncomfortable incidents when the Press tried to hound medical professionals. A GP, whose partner had died of HIV, was assumed to also be positive and the press got hold of the story. We got in touch with THT and their lawyer managed to get the story stopped. I felt the stigma myself. Some acquaintances dropped me because I wasn’t ‘nice to know.’ The way I was treated was rather odd, as though I was the bearer of contamination.

I started a support group for doctors in 1989. We met in a back room of whichever hospital I was working in, after hours once a month. The group of them worked out ways to cope and support each other, and ran until 2002.

It was a special period. I think everybody who worked in the area would say that it was probably some of the most fulfilling work that they’ve ever done. We all worked long hours but somehow it didn’t really matter. Everybody helped everyone else and the patient was the priority. You enjoyed interacting with them and somehow, although there was sadness almost every day, it was a very rewarding job.

Today, without the immediacy of people dying all around, it’s easier to ignore and see it as ‘something that happens to other people, not to me.’  And, while being gay is more accepted, life expectancy is much better and more people are living with HIV openly, a different sort of stigma arises. With all the information around you can be ridiculed for getting HIV. 

We’ve also lost some of the lessons we gained on those wards. A good consultant in the eighties could assess the benefits of various professionals, consider how the team worked, and make a decision about what was really important. They had the power to enact change. The restraints now in the NHS would make that hard.

Working on those wards was probably the most uplifting job I’ve ever had because you were dealing with real people who got on with their lives, however short, and they appreciated you. I actually forgot sometimes, because I was seeing interesting, living people every day and talking about life. I remember somebody asking me how I dealt with the dying all the time, and I thought, me? I don’t deal with the dying. I deal with the living.