'I would have died without the care of HIV charity'

For more than 30 years, an East Sussex charity has provided specialist palliative care for people living with HIV.

The Sussex Beacon opened at a time when many healthcare services were reluctant to treat those with the virus.

Stephen, who was diagnosed with HIV in the early 90s, told the BBC the diagnosis "felt like a death sentence" in those days.

Over the past three decades, the Brighton charity has supported him through serious physical illness and psychological trauma.

"Without the care and commitment of the staff at the Sussex Beacon, I would have died," he said.

Stephen was later diagnosed with HIV-related dementia, for which there is still no specific treatment.

He said the Beacon's care had helped him through "some of the most difficult periods of his life".

He also keeps a handwritten record of friends who received support from the charity.

"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."

Tracey Buckingham, clinical services & CQC registered manager, says advances in HIV treatment have transformed many lives.

However, she adds, some people are still diagnosed only after becoming seriously ill and continue to need specialist support.

"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.

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.

The charity adds 25% of its funding comes from the NHS, with the rest raised through donations and fundraising.

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".

"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."

While the government has provided £125m for hospice buildings and equipment, hospice leaders say it does not cover rising day-to-day costs.

Sussex Beacon staff say their mission remains the same; to provide specialist care, support and dignity for those who need it most.

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