My career began just as a quiet revolution in nursing care was getting underway in the NHS. Old-style nursing was task-orientated, bringing bedpans, changing sheets, but the new approach was based on looking after the person as a whole. It offered a huge opportunity to make a difference to the lives of patients with HIV, whom I felt had been poorly treated. The Ward Sister I took over from in the Infectious Diseases Unit was an old-school martinet – strict about visiting, not at all empathetic. I was determined to make a change. The first patient I nursed with HIV there was terribly isolated, frightened and sad, in his despair refusing to talk to anyone. He had a disfiguring fungal infection in his nails and no-one had made any effort to get close to him or give him an opportunity to open up. I went into his room and just sat with him, until eventually he began to talk.

 

Patients with HIV deserved to be treated as human beings, but instead they were met with prejudice and fear. One had been working in the shoe industry, and thought he should act responsibly and let his employers know that he was HIV positive, in case he ever cut himself on the machines. The next day, he’d lost his job. I had endless confrontations with ambulance staff. The drivers who brought patients to our ward had been ferrying infectious patients there for years without a qualm. But as soon as they had to transport an HIV patient, they would insist on wearing full protective gear, dressed like spacemen for fear of contamination. Some of my nursing staff threatened to walk out when I arranged for them to have gay awareness sessions with the Leicester AIDS Support Society, but the sessions did make a difference to how they nursed the patients.

 

Leicester had only a few patients with HIV, but my next job brought me into contact with people living with HIV every day, as a Health Advisor in the sexual health clinic at Chelsea and Westminster. My role was to support people through the process of being tested for HIV.It was important to discuss, before they tested, whether they were ready to receive an HIV diagnosis,which was at that time effectively a death sentence. One young woman fainted when I gave her the diagnosis. Some didn’t feel ready to go through with the test and, if they didn’t come back, we wouldn’t chase them. If they were diagnosed as HIV positive, we would refer them to the Kobler Clinic next door and continue to offer them support. We might even go with them when they broke the news to a partner or to family. All this gave me invaluable insights for working with AIDS patients in my next post. 

 

Broderip Ward at the Middlesex had been opened by Princess Diana in 1987, two years before I became Ward Sister there. The plaque on the wall that commemorated the opening was kept covered by a painting, to conceal this was an HIV ward, because some wanted to keep the nature of their illness secret. There were four single rooms, plus eight beds in the main Nightingale- style ward. It was full of people with pneumocystis pneumonia, lymphoma, cryptococcal meningitis, toxoplasmosis or any of the multiple opportunistic infections that AIDS patients might develop. But it was like no other ward I’d ever worked on. The first thing the consultants said to me when I arrived was: “Jane, the nurses kiss and hug the patients all the time – could you do something about it?” 

 

Even if I’d wanted to, I doubt I could have stopped the kissing and hugging. Close contact was what these young men needed, ostracised by so many outside who were afraid to touch them. The nursing staff were either young women, like myself, without children, or gay men, and naturally we felt empathy. There was a kind of siege mentality – us against the world – especially when hate mail arrived or the press tried to sneak in, disguised as visitors. After a patient was discharged, our nurses would often have to look after them at home too, finishing the day shift then taking groceries round or changing their dressings, because the district nurses wouldn’t help an AIDS patient. No wonder we grew close. 

 

On the other hand, boundaries did need to be looked at, to ensure staff didn’t burn out. It was easy to become too involved, and this was the toughest kind of nursing there is. When a new patient came onto the ward, you knew that within a few months or a year, you could be holding their hand as they died, although they were no older than yourself.

 

When there’s no cure, all you can do is care. We nursed in teams.Each team had its own group of patients to look after, and each nurse within the team would be given special responsibility for their patient from admission to discharge, and for any subsequent returns to the ward. Our patients were often anxious and fearful, and the continuity was soothing. They wouldn’t have to keep repeating their story to a new set of nurses every time. Some of the procedures we put them through were invasive and gruelling: bronchoscopy, lumbar puncture and the like. They might feel humiliated by the way AIDS took over their body, with uncontrollable diarrhoea, or the swelling and disfigurement of Kaposi’s sarcoma; it was reassuring to be looked after by someone familiar who became a friend. 

 

What was special on Broderip was the levelling of relationships between patients, nurses and doctors. The hierarchy was flattened to the extent that it might be hard to tell, when you arrived on the ward, who was who. We dispensed with uniforms. We always used to wear our own clothes at Christmas, so I thought, why don’t we do it all the time? We consulted the patients – a few wanted us in proper nurses’ uniforms with hat and frills and apron, but most were delighted to see us in mufti. It sparked no end of conversations about who was wearing what today, or what colour the staff nurse had dyed his hair and beard – once, green. Even the domestic cleaner on our ward was very much a part of the team. Jacinta would always be there if we had a party or a night out with patients. 

 

Apart from medical treatment, our job was to enable people to live their lives as fully as possible. I made sure we had decent china cups and plates for the patients to eat off,a fridge full of treats, subtle illumination from bedside lamps rather than the harsh glare of overhead lighting. There were a lot of parties and, if a patient couldn’t get out of bed, we’d wheel them over to join in. At Christmas, the nurses would cook Christmas dinner themselves and share it with the patients. It had to be special because, for many, it would be their last Christmas dinner. 

 

One man was a singer and a dancer in musical theatre. He’d been admitted with cryptococcal meningitis and had been very sick. His temperature was still sky-high on the day his agent rang about an audition “Apart from medical treatment, our job was to enable people to live their lives as fully as possible.” for a show he’d always wanted to perform in. He was desperate to audition, but we knew the consultant would almost certainly refuse to let him go in the state he was in. We dosed him up with paracetamol to get his temperature down, and when it came to the ward round, we steered the consultant smartly past the bed, as I said brightly: “Look how far his temperature has dropped!” So off he went to the audition and he got the part. It seemed to give him a new lease of life. The rest of the cast knew about his diagnosis and supported him through the production, and a bed was made up in the dressing room so he could rest between scenes. Towards the end of the show’s run, he became weaker and wasn’t up to all the singing and dancing, but they gave him a smaller part so he could continue appearing on stage. I went to his funeral, in the Actors’ Church in Covent Garden, where the cast sang numbers from the show. It was the most wonderful send off for this talented man. 

 

We wanted to give people the best death possible. Living wills, or patient directives, as they’re often known, came about because HIV patients wanted some control over their treatment as they became more ill. They enabled us to discuss how we should care for them if they became comatosed or their heart stopped – would they want to be revived or not? Who should we call? These frank conversations about end of life helped them cope with their fears around dying and, of course, they were very afraid, something that got to me more than anything else. I remember one patient who had always been very dapper, in beautiful Italian suits, who picked out the clothes he wanted to be dressed in after he died. Sadly, he’d lost a lot of weight, so the suit was huge on him. The mismatch between who he had been, and what he had become when he died, broke my heart. 

 

We learned to listen to patients and to provide what they needed. We learned to give them space to talk about their fears. Above all, we learned to see them as individuals, as people. What we learned from caring for those young men was a way of nursing that can’t always be replicated under today’s pressures in the NHS, but which has left a very real legacy in hospitals today. 

 

1981 marked the beginning of a pandemic that has seen 76 million infected with the HIV virus and 33 million die (WHO statistics). The COVID-19 pandemic is on a different scale and speed from HIV in the 1980s and 1990s, but while there are many differences, there are similarities too and lessons from HIV that can usefully be shared. During the first wave I read a post on a social media site from a nurse working with COVID-19 patients: she describes how the care team “had never felt so close and supportive” from the consultant to the cleaner. She described nurses working extra hours to support each other despite their worries. Finally, she talked about how, with scared patients and no family allowed, nurses had to be “more than healthcare workers” for the patient and the family. It felt like I was reading about my ward 30 years ago. 

 

There is, or rather should be, no going back once you have experienced a levelling of the team, valuing each and every role and person on the team, and developing those deeper relationships with patients and family. I say ‘should be’ because we lost some of those gains in the nursing model when new antiretroviral treatments presaged a more medical model approach. Despite this, nurses have continued to develop and promote patient-centred care and value team working.

 

It must be hard now for nurses on the front line of COVID-19 work to reflect on what’s happening. All they can do is get through each day, working extra hours, supporting each other, getting exhausted and yet not able to sleep. 

 

Right now, no-one knows when the right time will be to begin reflection. But from my experience in acute HIV, the wounds being inflicted today will run deep. For us, formal reflection, through recording oral histories from nurses and other healthcare workers, has been very important. That is the value of telling our stories now.