Posted 10 February 2017 - 16:25
Posted 10 February 2017 - 16:25
Features
‘Nursing in a war zone’: memories of AIDS wards in the 1980s
A film capturing the harrowing but inspiring experiences of nurses and doctors on the first AIDS wards has been made by sexual health clinic lead Leigh Chislett
A film capturing the harrowing but inspiring experiences of nurses and doctors on the first AIDS wards has been made by sexual health clinic lead Leigh Chislett
‘Nobody knew what the hell was going on. It was all young men, people who were starting out on their lives, their community decimated. We had never seen that before. It was such a cruel disease.’
Corrine Sullivan is recalling her time nursing in a sexual health clinic for patients with AIDS at Westminster Hospital in the early to mid-1980s, when the disease first hit London. She is one of the health professionals featured in the film AIDS: Doctors and Nurses Tell Their Stories, produced by Leigh Chislett, a nurse who also worked on an AIDS ward during the 1980s.
Exploration of HIV from the perspective of clinicians
‘There have been a lot of films about HIV but they have never shown the experience of the nurses and doctors,’ says Mr Chislett. ‘I know how it affected me and I wanted to tell the story from the clinicians’ perspective. This film was unfinished business for me.’
Mr Chislett started out as a hospital cleaner. Nurses noticed he had a way with patients and encouraged him to become a healthcare assistant. He went on to become an enrolled nurse before qualifying as a registered nurse.
He worked at St Mary’s Hospital in Paddington after moving to London in 1985. One experience there in particular ignited his lifelong commitment to sexual health and HIV prevention and care.
‘A man had been put in a single room with what we called then HTLV3, or gay-related immune deficiency (GRIDS). People kept peering through the window at him. I told the sister I was furious that he was being treated like something in a zoo. They asked me whether I would be happy to look after this man. Well, of course I was.
‘He would not make eye contact but I asked if he would like help to wash. He opened a package of food and, trying to connect, I asked what it was. He asked if I would like to try some, so I did. He got very emotional just because I accepted food from him. It had such an impact on me and I thought “I am going to do something about this”.’
‘The symptoms were terrible. The patients looked liked they had been in a concentration camp, skeletal with eyes bulging’
The film’s eye-witness accounts of the unfolding public health disaster are harrowing.
‘There were no treatments and people didn’t even know what it was to begin with,’ says Mr Chislett. ‘The symptoms were terrible. Many clinicians had post-traumatic stress from the experience of caring for patients. With cryptosporidiosis, patients were losing litres of diarrhoea. They looked liked they had been in a concentration camp, skeletal with eyes bulging.’
Fear and prejudice – the stigma exacerbated the stress staff felt
The stress of caring for patients in such an extreme situation was made worse by the prejudice and stigma that surrounded AIDS. ‘People’s attitudes made me really angry. These were human beings but people were saying let’s hope they find a cure – but not too quickly,’ says Mr Chislett.
By the time patients got to the ward they were already very sick. Almost nobody survived two years. ‘The partners of these young men were often watching these terrible deaths and thinking it was going to be them shortly,’ he adds.
It was a time of palpable fear. The clinicians in the film recall how it all started, with stories of a weird cancer that only affected gay men, coming from US cities already hit by AIDS.
Their recollections are interspersed with headlines and captions from the time, from ‘21-year-old Londoner with the mystery disease AIDS lying in a hospital bed’ to ‘“Exterminate gays” says newspaper’. The ward had to remain locked to stop the press sending in photographers.
Jane Bruton says her first six months on Broderick Ward at Middlesex Hospital were the hardest. ‘I can think of so many that died. I just cried a lot. I can’t tell you how awful the conditions were. Esophageal candidiasis was all over people's mouths. They couldn’t swallow or get any medicines down. And Kaposi’s sarcoma changed people’s appearance completely and they just blew up. You would also get people with pneumocystis pneumonia.’
Sometimes the patient’s bed would be dripping with sweat due to seroconversion illness. ‘It was as if they had thrown a jug of water over the bed,’ says Ms Bruton.
She adds that these young men often had not told anybody about their illness. One doctor tells of a young man dying, screaming ‘don’t tell my mum I died of AIDS’.
Harrowing memories of patients' ordeals
Mr Chislett saw a patient ‘crawling on all fours because he had lost the sensation in his feet’.
‘And I remember him looking up at me and saying please, please don’t look at me. And so I was just at the edge of his bed and he had his head on my chest and I was stroking his hair and he died. I was 21. And then I thought, “oh my God, this is going to be tough”.’
Theresa Burns was 26 when she started working on the ward at St Mary’s. ‘Nothing in my training prepared me for what I was facing. It was like a war zone.’
She remembers the undercurrent of fear at the time, with newspapers reporting who had it from week to week and speculating on how it could be caught. She also remembers the intensity of the nursing and the overwhelming emotions she felt.
‘There was a closeness between us and our patients. It was about being human with people and not just being the nurse. They let you into their lives.’
The distress of caring for patients who would die
The bond with the patients inevitably took its toll. Ms Burns was profoundly affected by a patient called Tim. ‘There was a goodness there. He was very angry at what had happened to him. We just connected. I remember going to his funeral – it was the worst day of my life. I knew my days were numbered on the ward. He was the reason I had stayed for so long but he was also the reason that I had to go.’
Ms Bruton says: ‘It was terrible losing them. All you could do was nurse them to a good death and that wasn’t always possible because sometimes they hadn’t accepted they were going to die.’
For Mr Chislett, one of the most difficult things was the way patients were treated even in death. ‘We had to wrap these boys, these human beings, in hazardous waste tape.’
‘All you could do was nurse them to a good death and that wasn’t always possible because sometimes they hadn’t accepted they were going to die’
The unique situation created a unique working environment, where the nurses would try anything to improve their patients’ quality of life. ‘We made the rules up as we went along,’ explains Ms Sullivan.
Ms Bruton recalls that they did ‘get into a bit of trouble’ when an indoor firework party set the smoke alarms off. ‘In those days, patients smoked in their rooms – and not just cigarettes. I would defend them to the hilt. If that was the last joint they were ever going to have, they could have that last joint.
‘And why wouldn’t you do that? Why wouldn’t you enable patients to live the life that they wanted to despite losing control of their body?’
The nurses took one patient for a ride on the back of a motorbike three days before he died. ‘He had always wanted to go on the back of a bike and we were able to facilitate that,’ says Ms Bruton.
Camaraderie of healthcare staff
Staff used black humour – and parties – to lighten the mood and help them come back into work for the next shift.
The film includes some moving photographs of patients on the ward. ‘There was a lot of love too,’ says Mr Chislett.
‘We used to laugh and laugh,’ says Ms Sullivan. She recalls one patient who joked he was going to buy her a bottle of Poison perfume because she used to take the mickey out of him. He bought her a different, very nice perfume – and she still has it years later. ‘I feel so privileged that I was nursing in those days,’ she says.
- RELATED: New approach needed to stop HIV
Ms Bruton says the experience had a profound effect on her practice. ‘I have very good memories. It taught me so much about what real nursing should be about.’
There was camaraderie between staff but no formal debriefing or outside support to help them cope with the stress. ‘That was a problem,’ says Mr Chislett. ‘We were all supporting each other but we were all going through the same thing.
‘I would go into our staff room, cry my eyes out then wipe my eyes and come out and look normal again. Then one day, three men died on my night shift, and a fourth died the next day. And I thought, I just can’t do this anymore. It was heartbreaking and inspiring at the same time.’
Picture: Tim George
Ongoing commitment
Today, Mr Chislett is clinic manager of the groundbreaking sexual health clinics 56 Dean Street and Dean Street Express in Soho, London. Corrine Sullivan and Theresa Burns work there with him.
‘The services are here because of that experience,’ says Mr Chislett. ‘It took a lot of blood, sweat and tears to get the clinic established. I am driven by the need to ensure that these people have the best care.’
His film, which was funded by St Stephen’s AIDS Trust, played to packed houses at the 20th Century Fox screening room in London last year. It was also shown at a short film festival in Delhi and will be part of the 2017 POUT festival in the UK.
Mr Chislett hopes everyone who sees it will benefit from the clinicians’ hard won lessons in compassion and humanity. ‘On that ward I learned how to really be a nurse – there was no medication, all we had was us and our nursing practice, human beings helping other human beings in desperate times.’
Further information
AIDS: Doctors and Nurses Tell Their Stories
Elaine Cole is managing editor at Nursing Standard