For more than 30 years, an East Sussex charity has provided specialist palliative care for people living with HIV.<\/p>\n
The Sussex Beacon opened at a time when many healthcare services were reluctant to treat those with the virus.<\/p>\n
Stephen, who was diagnosed with HIV in the early 90s, told the BBC the diagnosis “felt like a death sentence” in those days.<\/p>\n
Over the past three decades, the Brighton charity has supported him through serious physical illness and psychological trauma.<\/p>\n
“Without the care and commitment of the staff at the Sussex Beacon, I would have died,” he said.<\/p>\n
Stephen was later diagnosed with HIV-related dementia, for which there is still no specific treatment.<\/p>\n
He said the Beacon’s care had helped him through “some of the most difficult periods of his life”.<\/p>\n
He also keeps a handwritten record of friends who received support from the charity.<\/p>\n
“I’ve added 87 names,” he said. “They were people I met at the Sussex Beacon who the staff cared for right until they died.”<\/p>\n
‘Funding challenge remains’<\/p>\n
Tracey Buckingham, clinical services & CQC registered manager, says advances in HIV treatment have transformed many lives.<\/p>\n
However, she adds, some people are still diagnosed only after becoming seriously ill and continue to need specialist support.<\/p>\n
“There’s arguably a whole generation of people who don’t live so well, and are moving into frailty and older age, and they still need services like ours,” she says.<\/p>\n
The Sussex Beacon plans to reopen its 10-bed inpatient unit next March, providing palliative care for people with HIV and LGBTQ+ people with other end-of-life needs.<\/p>\n
The charity adds 25% of its funding comes from the NHS, with the rest raised through donations and fundraising.<\/p>\n
Chief executive Rachel Brett said reopening the ward had brought “a sense of relief” to the HIV community, but warned the financial challenge “remained significant”.<\/p>\n
“The gap now is immense,” she says. “It keeps us awake at night knowing whether we’re going to make it or not into the following year.”<\/p>\n
While the government has provided \u00a3125m for hospice buildings and equipment, hospice leaders say it does not cover rising day-to-day costs.<\/p>\n
Sussex Beacon staff say their mission remains the same; to provide specialist care, support and dignity for those who need it most.<\/p>\n
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