Were you one of the 18.9 million people who tuned in to It’s a Sin? This landmark series — which follows a group of friends living through the HIV/Aids crisis in the 1980s — attracted record audiences and is Channel 4’s most streamed programme to date.
40 years on from the UK’s first HIV related death, it captures the fear and miseducation surrounding the early stages of the epidemic. It also brings into sharp focus the devastating physical effects of a virus that caused serious illness and, ultimately, early death.
Since then, things have changed radically. Although there is no cure, the development of antiretroviral drugs means the virus can be suppressed. So with the right medication, people with HIV can lead long and healthy lives. If the amount of HIV in the blood is kept at an undetectable level, it also means the virus can’t be transmitted to others.
But there’s still work to do. Our research looks at improving HIV care, with a focus on nursing. We wanted to make sure that the 103,800 people living with HIV in the UK get the care and support they need to stay well.
What does good HIV care look like?
In 2012, the House of Lords Select Committee report No vaccine, no cure highlighted an urgent need to adapt HIV care to the changing health needs of those living with the virus.
Most people are on treatment and medically stable. This means those needs are increasingly about the prevention and management of age-related comorbidities, such as diabetes and heart disease.
There are also a small number of people, often with social and mental health difficulties, who struggle to stay engaged with HIV services. This makes them susceptible to infections, lengthy hospital admissions and poor health outcomes.
It’s clear then, that effective HIV care must address complex needs and help people stick with their treatment. We know that nurses have a part to play here, but how could their role be maximised?
The existing HIV care landscape
To find out how to improve HIV nursing care, we needed to understand the existing system.
Working with the HIV Service at Sheffield Teaching Hospitals NHS Foundation Trust, we undertook the first large-scale study of the HIV nursing workforce in England. This involved collecting data from 21 HIV services, followed by five in-depth case studies.
It showed that HIV nurses are vital in providing routine care to stable people — and helping them stay healthy as they age. It also demonstrated the value of community HIV nursing in keeping those with psychosocial problems engaged in treatment.
But there were issues with consistency. We found four care models operating across the UK. Some HIV services offered no community nursing provision, while others had a full-time HIV community specialist nursing team. As HIV affects people all over the UK, it was essential to make sure no one fell through the cracks.
Similarly concerning were the recruitment, retention and training challenges we found in HIV nursing. Rectifying them would be a key priority.