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Sussex Beacon Centre celebrates 21 years helping those with HIV
At the beginning, the future looked bleak.
The room nowused as an IT room in the basement of the centre was once a morgue, because only St John’s Ambulance would transport bodies known to have carried the once-lambasted disease.
The centre also has its own laundry room, not as an added bonus, but because laundrettes refused to touch the sheets from the centre.
That is the stigma HIV/AIDS once carried and although it is not handled with the same sympathy as cancer or even alcoholism, the general public are beginning to open their eyes to the illness.
John Cook, 54, who was diagnosed in 1984, uses the centre to escape the trials and tribulations of normal life and recharge his batteries about once every 13 weeks.
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The centre’s 10-bed Inpatient Unit helps people recovering from serious HIV-related illnesses, initiating new drug therapies or struggling with some of the extreme side effects of anti-retroviral drug regimes.
They also provide emotional, mental and health support along with physiotherapy and occupational therapy as well as end of life care.
He said: “Back in 1984 there were no services at all, it was horrendous.
“I vividly remember the day, it was a nice summer’s day and I went down and I used to have a six monthly check because I was a health care worker and they turned around and said you’ve got the virus.
“That was it – they just turned around and gave you your diagnosis and then you were outside with a death sentence.
“You were expected to go home and die in six months’ time and the attitude towards it was very cold.
“People used to treat me in white boiler suits for fear of contracting it, there was a lot of hostility and it really wasn’t a very nice place to be in.
“When I first came out of being diagnosed, I walked downto the Old Steine and part of mejust wanted to shout out that I’d got it but the other part wanted to digmyself into a hole and disappear.”
Although John believes there is still a lingering ignorance when it comes to HIV/AIDS, he has seen people become more accepting.
He added: “There is still a stigma and I think a chunk of that has to come down to the Government.
“They used to run ads, but they don’t anymore and people are forgetting about it.
“There’s still the perception that it’s a gay man’s disease, but that’s just not the case.”
The rise of The Sussex Beacon 21 years ago was a landmark moment for the illness. Nowit boasts Olivier award-winning actress Ann Mitchell, aka EastEnders’ Cora Cross, Doc Martin actress Louise Jameson and Casualty actress Martina Laird, aka Comfort Jones, among its celebrity patrons.
Now it is somewhere John said changed his life completely.
He added: “The first day I came here I was absolutely petrified because I didn’t knowhowanything worked so I just hid myself away, but now I know how everything works it’s absolutely wonderful.
“If this place wasn’t here, I probably wouldn’t be here myself.
Therapy “It charges my batteries up, it assists me with any problems that I’ve got from mental to physical – I know I can turn up here and get help.
“Alot of people I’ve met here over the years have passed away, but I’ve made new friends.
“I can interact with other people in the same position as me which isn’t something I get a chance to do away from here – I can feel very isolated.”
John visits the centre because of neuropathy caused by being overprescribed medication when he was diagnosed.
He receives massage therapy, pain control as well as emotional aid from resident chaplain Father John, who was appointed in 2000.
Father John said: “When I first arrived here, The Beacon was very different.
“The mortuary used to be downstairs and I’d come in every week and someone would have died so over the years I’ve seen that change.
“It’s a very happy place, the mortuary has gone and people are able to go back into the community.
“I deal with any or no faith at all and I’m just a listening ear.
“You see people that come in that have lost the confidence to be able to live in the community, but through this facility they feel they have the belief to do it.
“People feel very isolated after losing family or friends, but they come in here and find people in the same situation as them, and that makes such a difference.”
One resident who has visited the day care every Tuesday for 10 years is Peter Davis, 74, not his real name.
Mr Davis thought that the stigma attached to the disease is still enough to jeopardise his relationships with people and decided to talk to The Argus anonymously.
He said: “It’s just a brilliant place to be.
“It gets me out to be with likeminded souls and it gives you the opportunity to chat to people about what you’re going through.
“Also, if you’re changing medication, it’s often advised that you stay here and people don’t realise the side effects.
“I don’t have to shop, cook and wash up and you have the beautiful gardens, which are therapeutic in themselves.
“This place is a wonderful place, it really is, it’s in my will.”
Peter was diagnosed 13 years ago with seroconversion – the period of time when HIV antibodies develop and become detectable – and remembers the time well.
He added: “One minute I was fine and the next I had the most awful stomach cramps and I had a rash from head to toe.
“I was at work, and because I looked well and was able to do things and put HIV on the backburner, my benefits were cut.”
Although Peter agrees with John that people’s perceptions have changed, he still finds it a burden carrying the illness around with him.
He said: “It would be so nice to start the day without applying something somewhere and taking medication and having to deal with other illnesses brought on by HIV.
“I’ve fallen out with my family because I once said to my brother ‘You never ask me how I am’.
“In the big, wide world it might be slightly easier now but it’s definitely still tricky.
“It’s not something you broadcast and I’ve lost so many friends before the medication was prevalent – I look through my address book and they’re all dead and gone.
“In Brighton, being gay is seen as OK, but being HIV positive still isn’t accepted.
“For example, I’ve just been staying with friends who let me hug and kiss the baby – that would never have happened years ago.
“You’re living with a life-threatening illness, recently a friend of mine died and we all knowsomeone who has died because of it.
“That is something you carry around with you every day.
“There is a huge ignorance. I wouldn’t like to live outside of Brighton.
“A cure would be brilliant, but it would be nice if the stigma wasn’t there because people’s immediate reaction is ‘you brought that upon yourself, didn’t you’, which just isn’t the case with some people.”
The women and families service at the Beacon
It is the only dedicated service that supports women and their families affected by HIV in Sussex.
More than 100 women and their families have been supported over the past two years through the
Positive Health for Women project.
The aim of the service is to support women by providing one-to-one support with a caseworker, group
work, training and peer mentoring training to build skills for life.
To support, donate good quality, clean furniture and homeware to the Beacon’s charity shop in London Road, Brighton, or call 01273 680264 for furniture to be picked up free of charge.
Amazing support - Simon Dowe, CEO of the Sussex Beacon
“Through celebrating our 21st year we remember just how much everyone who has been part of The Sussex
Beacon has achieved – service users, dedicated supporters and caring staff. Our city has given vital and
amazing support to The Sussex Beacon.
“Twenty-one years ago people with HIV died. Now, with our specialist support, people can lead long and
fulfilled lives. With the continued support of people being moved to fundraise for us, we can make sure that men, women and families get the support and care they need.”
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