By Tracey Buckingham, Clinical Services Manager, The Sussex Beacon
The Sussex Beacon officially opened as a registered hospice in 1994, built by the LGBTQ+ community in response to the AIDS crisis that had profoundly affected Sussex. In those early years, an HIV diagnosis carried fear, uncertainty and huge stigma and, for many, the expectation of an early death. Serious illness and the end of life were shaped not only by illness itself, but by discrimination, isolation and the loss of family connections. Partners, friends and chosen family often became the people who stayed, providing care, love and support when others could not. In the absence of family, staff from The Sussex Beacon also stepped in.
Over the past three decades, our specialist care model has evolved alongside the incredible changes in HIV treatment and care. HIV is now a manageable long-term condition and, with effective treatment, people living with HIV can expect to live long and healthy lives. For some people, our relationship with them has extended over many years. That continuity brings something important: an understanding of the person beyond their diagnosis, and of the experiences, relationships and circumstances that have shaped their life. It means that when someone becomes unwell, we are not meeting them for the first time; we often know what matters to them, who matters to them and how they want to be cared for. Palliative care is at the heart of this approach and has been central to the care and support we have offered for more than 30 years.
As people living with HIV now move into older age, their needs are changing too. Many are navigating the effects of long-term treatment alongside other complex age-related health conditions, changes in independence, isolation and mental health. Our approach to palliative care is not about waiting until someone is approaching the end of their life, and it is not the same as end-of-life care. Palliative care can begin at the point of diagnosis, or because of a serious or complex illness, and can sit alongside treatment at any stage. It is about helping people to live as well as possible, while addressing the physical, psychological, social and emotional impact of illness.
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