As a psychiatric nurse, the first person I looked after who was HIV positive was a young boy with psychosis in a psychiatric hospital in New Zealand and it was, to put it mildly, a disaster. We were scared of it and scared of him. I feel ashamed, looking back, of how we treated him, because he was just a frightened, ill kid whom we kept in an isolation room, and barrier-nursed, double-gloved, double-gowned. His cutlery was plastic, he ate off paper plates, and we burned his bedding. Even then, I realised that the way he was treated was unacceptable, but at the time we just didn’t know how to handle this terrifying illness. 

 

By the early 1990s I was a nurse on one of the acute psychiatric wards at UCH in London. A young gay man with advanced HIV was transferred to us, because the HIV ward at the Middlesex could no longer cope with him. He was psychotic and demented, with brain lesions caused by HIV, and he was dying. We couldn’t cope either, because we weren’t set up to deal with “Here I was again, trying to nurse someone in a completely inappropriate setting for their condition, because there was no appropriate place.” the physical side of his illness, such as uncontrollable diarrhoea. Here I was again, trying to nurse someone in a completely inappropriate setting for their condition, because there was no appropriate place. He couldn’t be at home safely, he couldn’t be on a medical ward safely, he couldn’t be in a psychiatric hospital safely, and he didn’t know where he was but he knew he didn’t want to be there. 

 

The upshot was that he was moved back to the Middlesex and I became a liaison nurse between the HIV ward there and the psychiatric ward at UCH, so that his psychological needs could be met as well as his physical ones. We were, if you like, writing the book as we went along, but it was about treating 

 

people with respect and dignity, seeing the person as the primary point of care. 

 

The fascinating aspect of HIV care for me is how much it was led by activism: gay men who were outraged by what was happening and how they were victimised and demonised, who shouted from the rooftops and demanded that the NHS and the drug companies took notice. Many of my nursing colleagues, male and female, were gay themselves, as am I, and this helped drive through change quickly. It was a remarkable milestone in health care, and it changed the way we conduct palliative care. I would argue that, funding cuts notwithstanding, the legacy of HIV is its revolutionary and lasting impact on our health service. 

 

I began working at the London Lighthouse in 1994. I loved the place, a sympathetic setting where both physical and mental needs could be met. I was a charge nurse on the residential unit, dealing with people who presented with a broad spectrum of psychological problems, from understandable anxiety or depression about their situation through to HIV-related dementia and other psychoses. Some came in for regular respite to give carers a break, some needed a period of convalescence after hospital, and some were there because they were dying and needed as good a death as possible. I feel privileged to have sat, at their request, with dozens as they died, helping them feel safe enough to let go. The thought of some of those people still makes me cry. 

 

Every time someone died, we would light a candle on the main reception desk, with a card by it with the person’s name. You would know when you came into work to start your shift whether someone you’d been caring for had died overnight. It’s a tradition I keep even now and, although I’m an atheist, I always open a window to let the person’s spirit out, because when you are with someone as they die you can feel that moment of transition. 

 

There was a mortuary at the Lighthouse so that families and friends could say last farewells, if they hadn’t been there at the end. Some were still reeling from only discovering their son or brother was gay when they learned his diagnosis, and then that he was dying. Some families were wonderful, at the “Some families were wonderful, at the bedside for week after week until the end. … though for some families, the rifts were irreconcilable.” bedside for week after week until the end. We would be invited to funerals, but I rarely went.There were just too many to go to. 

 

We encouraged people to make living wills, which would not only cover how they wanted to be treated in their last hours, but also whom to call. I vividly remember one young man who had been outed as a very young teenager and thrown out of the family home by homophobic parents. In order to survive he became a rent boy. He was still only in his early twenties when we sat down with him to make his living will. He told us that under no circumstances, even if he no longer understood what was happening to him, should we call his mother. 

 

Towards the end of his life, he developed dementia. As he lay dying, he began to cry for his mother, and begged us to call her. He had no recollection at all of the last fifteen years and the catastrophic row with his parents. He was terribly distressed, so we were faced with a dilemma. The living will was, to us, a morally binding document. He had been adamant before dementia set in that we should not call his mother, whatever happened, yet now he was a child again, desperate for her comfort. From everything he had told us, we were sure she wouldn’t come. We consulted his friends and decided we should try to find his mother. It turned out she was wracked with guilt and distress about how she’d treated him, and she came to see him and hold him one last time before he died. It had been the right thing to do – though for some families, the rifts were irreconcilable. 

 

When, a couple of years later, protease inhibitors like Ritonavir came on stream, I’m embarrassed to say I didn’t hold out much hope; the side effects were horrendous, and many people were already too sick to gain any benefit. Some, like Efavirenz, even added to their mental health problems because they caused sleep disturbance and horrific nightmares indistinguishable from reality. But over the next two years, we began seeing a real change. Suddenly people were living with HIV. There were still hospitalisations, but people weren’t dying in the numbers they had before. The residential unit at the Lighthouse closed because there was no longer a need for it, and I moved “But over the next two years, we began seeing a real change. Suddenly people were living with HIV. There were still hospitalisations, but people weren’t dying in the numbers they had before.” to a new job at the Kobler Clinic at the Chelsea and Westminster Hospital. 

 

Mental health care was as important as ever for HIV patients. Some had lived so long in the expectation they were going to die that they now couldn’t cope with surviving. They might feel guilt that antiretrovirals saved them, but had come too late to save a beloved friend or partner. Others got into trouble because they had incurred massive debts, in the expectation they would not be around when the bailiffs came to call, but now they had to pay it all back. Some couldn’t work out if they wanted to live or die, and began playing Russian roulette with their medication, stopping it for weeks at a time then frantically going back to it. The apocalypse that had decimated social networks for so many gay people took its toll. There were issues with alcohol and party drugs, and a growing crystal meth problem associated with the gay scene, where people got so out of their heads, they were incapable of practising safe sex regardless of their HIV status – not to mention the associated paranoia and psychosis. The club drugs clinic I was instrumental in setting up was geared to specifically address those issues around sexual behaviour, chem sex and the gay scene. 

 

I wish I could say everything is fine now, but people still die from AIDS – mostly those diagnosed late. There is still ignorance and prejudice about HIV. Not so long ago, I was chatting to a nurse who asked where I used to work. When I said I had looked after HIV patients for a large part of my working life, she was stunned. “Really? All that time? And you never caught it?” I thought back to how I’d tried to impress upon colleagues the importance of universal hygiene and precautions, whoever you look after. The person you know to be HIV positive is much less risk to you than the person who hasn’t told you, or who doesn’t know themselves. We need to tell these histories to a new generation, reminding them that although we have treatments, we still don’t have a cure for HIV and AIDS. 

 

We need to tell these histories to a new generation, reminding them that although we have treatments, we still don’t have a cure for HIV and AIDS.” “The apocalypse that had decimated social net- works for so many gay people took its toll. …The club drugs clinic I was instrumental in setting up was geared to specifically address those issues around sexual behaviour, chem sex and the gay scene.