It took a long time to realise my sexual orientation because I didn’t know there was such a thing as a gay woman. There was nothing in the press or on telly about gay women. But when a close male friend came out, because I’d seen the AIDS advert on TV in the late ‘80s, one of my first thoughts was that he might get HIV. I’d go to Gay’s The Word bookshop on Marchmont Street where there was quite a lot of literature about AIDS and HIV.

I’d wanted to be a nurse from the age of four, and I started my nursing training at the Middlesex and UCH in 1991, qualifying in 1994. My first job was on the acute admissions ward at UCH. I looked after a young man with HIV and was shocked by the stigma attached to his condition, and the associated lack of understanding. What was HIV? Could you catch it by touching someone’s urine bottle? No! But medical professionals were scared. They didn’t want to sit in the chair next to his bed, or touch his bodily fluids.

He was a young lad, only 19, and he felt embarrassed and ashamed. He was completely aware that people didn’t want to go near him.

And that made me really sad.

‘I’ll do it,’ I said, when other nurses didn’t want to look after him. It really didn’t worry me. I’d done the reading.

He was naïve because there was so little information out there.

‘Oh, don’t touch that! Don’t touch that! I’ve blown my nose on that.’

I had to reassure him. ‘It’s fine. I’m fine.’

I just wanted to take care of him. And it was then I knew I wanted to work in HIV. I’d been qualified a year or so when I applied to work on Broderip Ward at the Middlesex. It was June 1995. I was 22.

It was like no other ward I’d ever stepped foot into. A small nightingale ward with beds for ten or twelve patients. None of the staff wore uniform. The lighting was low; the strip lighting was off. It was more like being in someone’s living room. In a day room at the end of the ward, patients were able to smoke tobacco – and things that they probably shouldn’t have been smoking! Despite the very sick people on the ward, too young to be dying, there was a great atmosphere, and that came down to the leadership of Jane Bruton. People respected her. I remember immediately feeling like I was joining a family. We were always full.

I looked after a young man in his early twenties. Stephen, his name was. I remember all their names, even after all this time. He had a syringe driver and he was dying.

‘Is there anything that you want to do before you die?’ I asked.

‘Yeah, I want to go back on a motorbike.’

‘I can make that happen!’ I was a biker at the time.

‘Oh, crikey, he’s really sick, Ali!’ Jane said.

‘I’ll go really slowly.’

Jane and a porter lifted Stephen onto the back of my bike. He had pyjamas on, and a helmet. And the syringe driver in his pyjama pocket. He was very weak. ‘Hold on tight! Just hold on. Whatever you do, don’t let go.’

I drove round the block slowly, never going beyond ten miles an hour. Back at the front of the Middlesex he was lifted off, put in a wheelchair and taken back to the ward. He died a couple of hours later.

So what if I’d have got in trouble for it? It was the right thing to do for Stephen. It would never be allowed today. But it’s the best thing I’ve ever done.

Another guy, George, had an HIV-related brain tumour which meant that his hand was fixed in one, immovable position, his finger pointing to his nose. Getting him dressed and undressed was tricky because he had to manoeuvre his bad arm in first. He was also incontinent, and suffered profuse sweats. We changed his sheets an awful lot. He had a very strong Greek accent.
I was washing him one day, with another nurse, Jo, when he suddenly said, ‘I have small cock.’

We were quick to reassure him. ‘Oh, George! Don’t put yourself down. It’s not that bad! We’ve seen smaller.’

He was insistent. ‘No, no, I have small cock! I have small cock.’

Again, we tried to make light of it. ‘Trust us, it really isn’t that bad.’

It transpired that he was after a small Coke in the fridge next to his bed. There was a lot of laughter that day. But then we laughed a lot on the ward. We laughed along with our patients, even though they were in absolutely tragic circumstances. We loved them.

There was also anger. One very young lad, only 17, was really sick. He told me that he’d caught HIV by cutting his leg under a bridge. It was a very unlikely way to catch HIV. He said to me, ‘Don’t tell my mum and dad I’m gay.’

When his parents came, they were horrible. Their son was emaciated. Dying. But they didn’t believe his story, didn’t have it in them to accept him. They told him he deserved what he was getting because he was gay. He was devastated. That was heart-breaking. In his hour of need, he couldn’t get the support from his family. And so he had the support from us on the ward.

We were so close to our patients that we treated them like family. I took one patient down from the ward to have a CT scan. Even though the hospital was in central London, it was a reminder that when you work in HIV you work in a bubble. I was greeted by the radiographer, who said, ‘Is this the HIV brain?’

‘NO! This is…’ I said, and introduced the patient by name. I was mortified that somebody could be spoken about like that. I’ll never forget it.

I was on Broderip for four years. Trial drugs, some off-licence, were filtering through by then. There was an excitement and a kind of terror at the same time, because the new drugs were unknown. Was this going to make them sicker? Was it really a lifeline? Many people were delighted to take it. Others were scared. It was unknown territory. Some people were really sick on the antiretrovirals. Others had such horrendous thrush in their mouths that they couldn’t swallow. We’d treat that first and then try and get their medication into them. I’d be delighted to think that there were some who survived. Eventually there were some that stopped coming in because the triple therapy was working. But a lot died.

I moved to Thomas Macaulay Ward at the Chelsea and Westminster Hospital in 2000. It was very different. For starters, we wore a uniform. It was a much bigger ward in a bigger hospital. It felt far more formal, more rule-bound. I didn’t take anyone out from T-Mac on a motorbike!

The patients were also different. As time progressed, they became much more informed about the care they wanted. There was more hope and more light, because there was more medication, more triple therapy, new drugs. Still not everybody survived, but a lot more people went home.

One man had an HIV cancer and wanted to try alternative therapies. He tossed aside his HIV medication and said he was going down the homeopathic route. We pleaded with him to carry on taking his medication at the same time, but he was quite fixed. He’d done research and was convinced that there were lots of other ways to treat this cancer. We knew the newer drugs were helping. And we knew what the outcome would be if he stopped taking them. But there was no telling him.

Some people had real survivor guilt. Their friends had died and yet suddenly here were medications to keep them alive. ‘I lost my partner. I lost my friends. I don’t deserve this when they didn’t have the opportunity.’

I was on T-Mac for 18 months before I moved to Devon and became a ward manager on a respiratory ward. I immediately missed working in HIV. There was no dedicated HIV ward in Exeter because there wasn’t the need. For the patients I did see with HIV and PCP it was like stepping back in time in terms of attitude. The staff on the ward didn’t want to look after them. I did plenty of teaching sessions explaining that it wasn’t anything to be scared of. I remember one doctor double-gloving. I had to tell him that was actually creating more of a risk because now he couldn’t feel his fingers when he was taking blood.

‘You don’t need to wear gloves at all. You can have a needle stick from anyone.’

But I couldn’t get him to see sense.

I became a director of an HIV charity in Torquay, Pan Derrick, providing counselling and advice to people with HIV in the absence of support groups. Later I worked in mental health, and in palliative care. Latterly I was chief nurse within a community trust. The higher up you go in nursing, the less contact you have with patients. But I’ve never forgotten my time in HIV. We need to keep learning from what happened.

During the Ebola crisis, because of my experience in HIV, I was pulled into NHS England to provide the clinical leadership for our response. I saw the same fears in facing a communicable disease. There were also echoes from that time during the Covid pandemic. There are a lot of similarities to be drawn: the mask-wearing, the fear, the misunderstanding, the terror of patients dying in hospital. But I also recognise the nurses who stepped up and said, ‘I want to do this.’