Love, Loss & Life: Real Stories from the AIDS Pandemic: Barbara von Barsewisch

Barbara von Barsewisch trained as a nurse in London in the early 1990s and worked on Broderip Ward, the HIV ward at the Middlesex Hospital, for ten years. She went on to work at the Chelsea and Westminster Hospital in the Kobler Day Care Unit, where she developed an expertise in caring for patients with AIDS-related cancers, especially lymphomas. Caring for patients with AIDS in the 1990s was a nursing experience unlike any other. It was a time when the rule book went out of the window and some extraordinary and moving interactions between nursing staff and patients helped to ease the passing of many of the people in Barbara’s care.

This podcast series features stories taken from our first book, a collection of essays, reflections, and testimonies also entitled ‘Love, Loss & Life’ which you can buy here.

An audiobook is also available here.

Visit the National HIV Story Trust website

Transcript

Elexi Walker: 0:07

'Love Loss and Life' - Real Stories from the AIDS pandemic. This is Barbara von Barsewisch's story, read by Elexi Walker, with an introduction by Anita Dobson.

Anita Dobson: 0:34

Barbara von Barsewisch trained as a nurse in London in the early 1990s and worked on Broderip Ward, the HIV ward at the Middlesex Hospital for 10 years. She went on to work at the Chelsea and Westminster Hospital in the Kobler Day Care Unit, where she developed an expertise in caring for patients with AIDS-related cancers, especially lymphomas. She now works as a clinical nurse specialist in haemato-oncology at the North Middlesex University Hospital NHS Trust. During the COVID 19 pandemic, she joined a bereavement support team reaching out to families who were not allowed to be with loved ones when they died in hospital. Caring for patients with AIDS in the 1990s was a nursing experience unlike any other. It was a time when the rulebook went out the window and some extraordinary and moving interactions between nursing staff and patients helped to ease the passing of many of the people in Barbara's care.

Barbara von Barsewisch (read by Elexi Walker): 1:42

Thinking back to the 1990s, my mind conjures up endless lives, numerous men and women who I still carry within. Being asked to look back, three images standout for me. These all happened on night shifts. Night was the time on most wards when the telephone rarely rang, there were fewer distractions, and everything seemed more intense.... One was of a tall, glamorous Italian man who came out of his room one night and a blue ballgown and six-inch heels before six-inch heels were commonplace. He looked so gorgeous as he sashayed towards the nursing station. Then he began to cough up lung tissue, dark bloody flecks staining that beautiful blue gown. Another is of a man close to the end of his life, who was afraid of dying alone, rocking himself on his bed in pain, because his back was covered with Kaposi's sarcoma. And he couldn't lie down comfortably, however tired he was. I sat with him gently rubbing his back to ease it. He was so thin. It felt as if I was touching a bird skeleton. A third was an African woman who was very religious. Every morning, she asked the nurses to read to her from the Bible and prayer book by her bed. Then one day, she stopped asking. She was not far from death, and thinking it would comfort her, I asked her one night, if she would like me to read from her Bible again. She said the illness was so terrible she had given up on God, since He had obviously given up on her. You can give someone pills for their pain, but how do you comfort someone who has lost their faith? I'm still troubled by that. All we wanted as nurses was to bring some sort of healing to our patients. We couldn't cure them. But we felt our job was to offer at least an inner healing. So we did things we would never be able to do as nurses today. We didn't like the idea of a patient being discharged to a cold empty flat. So for one patient, a colleague and I jumped on a bus and beat the ambulance to his home to put on the heating. We made him a hot water bottle and tucked it in his bed, then returned to work. Those were the things we could do that made a difference. Another was when the comet Hale-Bopp was in the sky in 1997. During one night shift, when there was a clear wintry sky, a nurse who was doing the shift with me and I put the patients into wheelchairs, wrapped them in blankets and took turns to take them out into Regent's Park to see the comet, a once-in-a-lifetime experience. We had such fun that night and the patients loved it. I could never do that now. And I would never again have the courage to be so carefree. But like our patients, we were young and brave then. There was an extraordinary amount of laughter on Broderip Ward, usually over the tiny things in life, because suddenly those tiny things really mattered. A cameo comes to mind from those days when I wasn't completely familiar with English idioms. So I remember giving a patient an intramuscular injection. And instead of saying, as nurses usually do,"you'll feel a sharp scratch", I said, "I'm sorry, I'm going to give you a small prick", and the entire ward erupted in laughter. I soon learned that wasn't the way to put it. HIV/AIDS did change medical care in some respects. It had been quite paternalistic. The doctor had the answers, and the patients did as they were told. But AIDS was new and totally different - nobody had the answers. Everyone was learning at the same time. And we all had to work in partnership, something that changed doctor-patient interactions for good. Patients have far more of a voice now than they did before HIV. It was also the advent of a real multidisciplinary approach to care. All of a sudden, dietitians, physios, social workers and others, all became part of the patients' inpatient stay and discharge planning. AIDS carried such a stigma that patients were often relieved when they received a cancer diagnosis. It meant they could admit they were ill, if they had cancer, people would pity them, but if they told the truth, that they had AIDS, they might be ostracised. The parents of one young man who died of an AIDS-related chest infection, didn't want the words HIV or AIDS on the death certificate, which caused no end of difficulty. In the end, we changed it to 'an antiretroviral complication', which fudged it enough for the parents, though anyone with an iota of medical knowledge would have understood what it meant. For that matter, my own parents would never admit to their neighbours I worked with HIV patients. They said I was on a cancer ward. So many of those young men had kept their London life secret from their parents. One patient asked us to contact his parents and invite them to the ward, but to say he had cancer - not entirely a lie, as he had an AIDS related cancer. But when they arrived, it was obvious to them it was an HIV ward. They were elderly and didn't understand anything about their son's lifestyle or the disease. The father didn't want to hold his son's hand, because he thought he could catch HIV from it. And if he showed any closeness to the boy, people watching might conclude he was a closeted homosexual himself. The mother sat at the bedside, apparently totally composed, clutching her handbag, and didn't say a word, didn't touch him, or speak to us. But she had the saddest eyes in the world. I will never forget her awful despair. Some patients came back so frequently we knew them well. Oscar Moore was a journalist who wrote a column called PWA - Person with AIDS - for the Guardian, a witty, handsome man in his 30s, who brought laughter and brightness to the ward. He was allowed onto the ward as a'social' admission, - something you would never find nowadays because the NHS is too stretched- admitted for a few nights for respite because he was finding it hard to cope at home. The next time he was with us, he asked if I had brought my bicycle onto the ward. I couldn't think what he meant until he pointed to the wheelchair by his bed. In just a few weeks, he had become so blind and confused. He could no longer identify a wheelchair, only a few feet away. His end was very quiet; he just slipped away on a whisper, breathed, then breathed no more. I kept a diary and noted every time a patient died. After three years, there were more than 150 names of men and women on the list. Almost one death a week. One memory that sums up our approach to nursing in those years for me is Billy. He was older than most of our patients, 54, a tiny Scotsman who arrived on the ward with all his belongings in black bin liners, bags and bags of stuff and a guitar. He loved music and played his guitar all the time. We had to negotiate with other patients to let him play it. He'd found God at some point in what had been a difficult life, and religion was important to him, but so was his music. As he became sicker, he played his guitar less than less. We moved him into a side room with all his bags and a radio, which another of the nurses, Lucy, would switch on for him. And he'd sit on his bed rocking and saying, "Jesus loves me. Jesus loves me", as if he needed to convince himself. One Sunday afternoon, I came onto the ward to find Lucy carting black bags out of his room, piling them up by the nurse's station. Next, she pushed the bed out into the corridor, emptying Billy's room completely. Then, she tuned the radio to a programme of dance music. She and Billy started to dance in his empty room, the waltz, the cha cha, the foxtrot, they were perfectly in harmony, completely at peace dancing together. That embodies for me what nursing could and should be. Meeting a patient's needs in the most unexpected ways. The way we nursed those patients while they were dying is the best nursing the NHS has ever done. And I wish we could still do it that way. Around 1996, the first antiretroviral drugs arrived, and slowly, the death rate began to fall. Soon, everything in HIV was pharmaceutically-driven. We more often saw people who were ill because of side-effects caused by their treatment, not because of AIDS. A large part of our job was to motivate patients to remain on their medication. Western people with HIV were generally open to trying the drugs, whereas many African patients were much more reluctant, fatalistic about letting AIDS kill them. Eventually, fewer beds were needed. So Broderip Ward closed, and we were moved to another part of the hospital. I used to go up to Broderip and look into the empty ward and remember the patients I'd met. One day, a man had beaten me to it, peering through the doors, the partner of a patient who died, there to remember too. Nurses are important to patients. But the reverse is also true. We remember patients and are shaped by them. I'm a different person and a better nurse because of all the people I've nursed into death. And I still feel the loss of those young men and women. And if I feel like this, all these years on, how must their family, friends and partners feel?

Elexi Walker: 13:08

Thank you for listening to this story from Love, Loss and Life. A collection of stories reflecting on 40 years of the AIDS pandemic in the 80s and 90s. To find out more about the National HIV Story Trust, visit nhst.org.uk. The moral rights of the author has been asserted. Text copyright NHST 2021 Production copyright NHST 2022