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More needs to be done to ensure nurses today are “skilled-up” in HIV and are able to see patients beyond the virus, according to two nurses who worked during the AIDS epidemic in the UK.
Nicky Perry and Geraldine Reilly have spoken to Nursing Times about the highs and lows of working on the wards and in the community during the crisis, and seeing the roll out of life-saving medication.
“You are trained to deliver high quality care and in HIV you were allowed to do that”
Their experiences are among those chronicled in an exhibition launched at the end of last year called The AIDS Era – an oral history of UK health workers, which consists of an audio archive of 61 stories from HIV health workers during the 1980s and 1990s.
From helping patients decide where they wanted to die and what arrangements they wanted for their funeral, to taking them out clubbing, facilitating ward shows and providing top quality care, Ms Perry and Ms Reilly said working in this era really “put nursing on the map”.
The pair have known each other for almost 30 years and first met as nurses on a HIV ward at the old Westminster Hospital in London in 1990.
Ms Perry, who after HIV nursing went into research nursing, is now an operational manager and honorary senior lecturer at Brighton and Sussex Medical School.
In an interview with Nursing Times she said HIV needed to be incorporated into nurse training and it needed to be “normalised”.
“It needs to be in there, just like you get training about your heart, liver and kidneys – train them about HIV,” said Ms Perry.
In addition, she stressed that stigma of HIV was still apparent – even in the healthcare setting – and that the way to address this was through education.
“I think whilst you can teach about HIV and the comorbidities and the treatment, training and awareness around stigma needs to be incorporated into everybody’s training as well,” she added.
Meanwhile, Ms Reilly, who is the executive director of medical affairs at pharmaceutical company Gilead Sciences, also flagged that nurses “may not be aware” of some of the medical and treatment advances that have happened.
“If you are diagnosed early and you take your medicines and your medicines are easy to take, you will live a really long life,” she told Nursing Times.
“You will have the same life prognosis as somebody who is not HIV positive, however that message is not known generally and is not known to our new nurses and doctors.”
However, the pair noted that one challenge that had emerged was that any “aches and pains” that HIV patients experienced as they aged were assumed to be down to the virus, rather than potentially a separate health issue.
Ms Perry explained that there was work to be done to ensure health professionals had “the right level of knowledge and skills to work with the HIV patients and not just say ‘it’s your HIV, go and see your HIV doctor’.”
“Because it’s probably not their HIV, their HIV is under control, it is just that they are living longer,” she said.
“There is a need for healthcare to be ready to meet that response and that is the next piece of work – to make sure that nurses are skilled-up to know something about HIV, and not just see the HIV but see patients beyond their HIV.”
During the late 80s and early 90s, before medications to manage HIV were available, a large part of Ms Perry and Ms Reilly’s roles as nurses was to talk to patients about dying.
Ms Reilly worked as a community liaison for people with HIV which meant her job was to find out if people wanted to die in the hospital or at home.
“That message is not known generally and is not known to our new nurses and doctors”
Looking back, Ms Reilly recalled of a time when a doctor became “so angry” with her for having this type of conversation with a patient because they “were in denial” that the patient was going to die.
“It was one of those moments when you just thought about how we don’t necessarily prepare healthcare professionals to deal with every aspect of life and death, and how difficult it is for people, particularly when you get attached to your patients.”
Echoing similar thoughts, Ms Perry said: “Healthcare is quite a medicalised model, and actually HIV turned that on its head because the doctors did not know what to do. They couldn’t do treatment because there wasn’t any. So, they looked upon us.
“The doctors [would] say ‘actually Nicky, I don’t quite know what to do now’ and I’d say, ‘no, don’t worry we’ll sort him out, I’ll have a chat with him’. It really put nursing on the map.”
She explained how they “let patients live as they wanted to live and allowed them to die as they wanted to die” and would also help patients make plans for their funerals.
“As nurses we were key in that role to ensure that they had the best life of what was left, but also the best death,” said Ms Perry.
“I think that’s where nursing for me changed, in that you could really do it all on your own terms with your patient, with the families and with their partners.”
Ms Perry said the job of a HIV nurse encompassed “all the elements of basic nursing care”, but “empowered” nurses to lead on that care.
“You are trained to deliver high quality care and in HIV you were allowed to do that,” she told Nursing Times.
“I think there’s so many pressures on nursing today that I don’t think nurses get to deliver the high standard of nursing care that they would like to be able to deliver.”
Meanwhile, for Ms Reilly, she said the “most important thing” about her role at the time was to help “celebrate what life people had left”.
She explained that the pair would take patients out clubbing, have Christmas parties and put on big shows on the unit. They would even have celebrity performances on the ward, she noted.
“It was quite an amazing time really,” said Ms Reilly.
Outside of her life as a nurse, Ms Perry noted that people would treat her differently when she told them she worked on a HIV ward because of stigmas around the condition.
At dinner parties people would shuffle and slide away from her, or if she offered people some of her drink they would make excuses not to take some of hers.
“I had to choose what groups I was in before I would say that I was an HIV nurse,” Ms Perry told Nursing Times.
Whereas for Ms Reilly, her family were health professionals and her mother was a midwife and so they were much more understanding.
When asked if the pair suffered from nursing shortages in HIV, they said it was not necessarily a matter of the nurses not being there, but that actually some nurses would refuse to work with patients with the virus.
Ms Reilly said it was difficult to find nurses in the community who would “accept people home” who were HIV positive.
She noted that whilst there were some areas with “fantastic” nurses and GPs across areas in London, Manchester and Brighton, outside of that it was a struggle.
“There [would be] excuses like ‘well, it’s not a good time at the moment because we’re decorating the GP surgery so we wouldn’t really want to take your patient on’.
“No one thought ‘I’m not going to work on a cancer ward in case I get it’, but HIV was different”
“I found I would have to find a different way of selling the patients to GPs and we’d have to do an awful lot of work going home, spending time with the GPs, training the district nurses, getting people to a point where they felt comfortable. People were very scared, very, very scared.”
Meanwhile, Ms Perry told of a time when an agency nurse had not realised what type of ward they had agreed to work on until they had arrived. The nurse only stayed for half an hour before refusing to work there.
“We’d have nurses that would say ‘I’m not working on that ward, it’s the AIDS ward’,” explained Ms Perry.
“Nobody refused to go and work on a cancer ward, no one thought ‘I’m not going to work on a cancer ward in case I get it’, but HIV was different.”
She said this was down to “a lot of uncertainty about how it was transmitted and fear of catching it”.
When life-saving medications were rolled out in 1994-96, the pair explained that the role of HIV nurses’ changes because the model of care changed from a palliative approach to a more “supporting people [through] treatment” type model.
In addition, there was in increase in the need for psychological support for patients who survived after being told they were going to die from the condition.
“For them it was like a survivor syndrome and they felt really guilty surviving when they had seen so many of their friends die,” said Ms Perry.
Nurses also gave support with management of the side-effects of the medication.
“We went from a palliative care role to a supportive ‘let’s try and get you on these treatments and keep you on these treatments’ – so, that’s how it switched,” said Ms Perry.
Ms Perry was the project manager for audio exhibition, which reflects on the dramatic impact that HIV and AIDS has had on health workers and services, told through real-life experiences of health workers.
“Anyone can go and listen to those stories and I think it is so important to capture that for research, for future generations – heaven forbid something like HIV or AIDs happens again and people want to find out ‘how did the doctors and nurses and everyone respond when HIV hit?’,” she said. “I think the stories are there for the future, but actually, also for the here and now.”
The full collection is available in the National Life Stories Archive at the British Library, London, and more information can be found on the website.