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LONG-TERM SURVIVOR Living with HIV from death to life. By Stephen Wrench ) “Yes, but you didn’t die.” It’s a familiar response when I try to explain what it is to be a longterm survivor of HIV and AIDS. I’ve yet to find an effective reply to this: to explain, particularly to people who weren’t there and can’t know, what it was like back then, a time that’s with me, mentally and physically, every day. I was an indestructible young man of 32 when I was diagnosed with HIV, riding high in my career as a journalist, living the life of a gay man out and about, taking every care – or so I thought – to protect myself. It turned out not to be enough and I have only myself to blame for that. “Even if it’s five years,” my best friend said on the line from New York that night in 1993 when I was diagnosed, “even five years wouldn’t be enough.” “I’ll live until I’m 40,” I’d say. No one would quite meet my eye. Because everyone knew that very few survived the eight years that that would require. My friend in New York had friends dying around him. In London, there was always news of someone else diagnosed, someone else dying. I almost died of PCP, a bacterial pneumonia that killed so many at the start of the HIV pandemic. I emerged from hospital frail and a little broken, no longer indestructible. But thankfully, a year later, what seemed, and still does seem like, the miracle of the right antiretrovirals saved my life. So I’m still here, way beyond my target age of 40. Now at 61 I’m a long-term survivor, defined as being diagnosed with HIV before 1996, on what I call “the other side”, a time when there were no effective drugs to treat us, when we were all certain to die unpleasantly and soon. But there are costs to this survival. There are the side effects of both medication and HIV itself, usually with long names: peripheral neuropathy, causing constant pins and needles in hands and feet; lipodystrophy, which means I’m a really weird shape; and pancreatic insufficiency, which requires a handful of pills to digest food. I feel guilty having written that. Why am I alive and not so many others? Talented, beautiful men who died horrible deaths? What about the fellow patient, always cheery whatever was happening – chest shunt, brain shunt, the works – who one week wasn’t in his usual seat at the clinic? And then there’s … and … and … I sometimes think I could fill Brighton seafront with the dead. My friendships with other long-term survivors take all of this experience for granted. There is room for conversation about lovers lost and side effects gained, for tears and laughter. So yes, I didn’t die. But in so many other ways I did.
HIV SERVICES DURING COVID: THE EXPERIENCE OF TWO TEAMS The Community Specialist Service ) This service delivers care to the most vulnerable and complex HIV patients here in Brighton & Hove and West Sussex. These are a group who often struggle to engage with services, and have many psychological and sociological issues to deal with. When Covid first hit hard and during the first lockdown, 75% of the nursing workforce was redeployed, leaving a depleted team, forcing those left behind to work in a different way. Prioritising workload became crucial and significantly reducing face-to-face visits and increasing virtual working was introduced. Over the past year the team has built back its capacity, ensuring highquality care is delivered to this complex and vulnerable group of patients in their homes. Covid has taken its toll and staff are tired and exhausted. This last year has also left its mark on our patients and we have seen an increase in mental health issues, drug and alcohol problems and deterioration in physical health. In terms of future approaches when dealing with patients with complex issues, virtual working cannot replace face-to-face visits, and the benefits and advantages of seeing our patients cannot be overstated. We gain so much more from a face-to-face visit as opposed to a phone call. Often our patients are isolated and lonely and we cannot underestimate the importance of human contact. Patients have described their community HIV specialist nurses as ‘lifelines’ throughout the pandemic.
The Lawson Unit ) In March 2020, the majority of staff in the Lawson Unit were redeployed to inpatient areas to support the Covid response at Brighton and Sussex University Hospitals. We were able to keep a core team in the Lawson Unit to deliver essential care to people living with HIV. We had two main goals during the initial and subsequent lockdowns – first, to ensure people with HIV had uninterrupted access to antiretroviral therapy and second, to be available for patients who needed urgent blood tests or who had pressing HIV medical problems. This meant that many face-to-face visits were replaced with telephone appointments and all joint/specialist clinics were postponed. We were concerned by the mixed messages that people with HIV were receiving about shielding and worked with national organisations to ensure the correct information was communicated where this was possible. Feedback from patients who contacted the clinic for advice on Covid was very positive. As a clinical team, we worked closely with our local NHS and voluntary sector partners to provide additional support for patients who were particularly vulnerable during Covid. The whole experience has taught us how quickly we can adapt services in a crisis. It has equally reinforced the need for the clinic to provide a menu of services, including face-to-face appointments alongside virtual options such as telephone, email and apps to respond to patients’ individual needs.
