"With the loss of self-help organisations, there is more need for hospital-based support groups," says Garry.
The Kobler Clinic doesn't have patient reps but held focus meetings
in the early 1990s. But Simon Barton says: "These meetings were completely
unrepresentative. The same people tended to turn up each time and make
speeches about their own agendas."
The Kobler has facilities to be proud of and a superb in-house pharmacy.
Mortimer Market has a pair of dedicated patient advocates. PALS could
be the way forward for taking the heat out of problems and frustrations.
Put them all together and we could possibly even achieve Tony Blair's
dream of a joined-up Health Service.
page 3 of 5
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In November we ran a news story: 'Some HIV clinics are in the worst NHS
hospitals'. Many of these so-called 'failing' hospitals contain well-known
and well-respected HIV clinics and the patients' representative from Brighton
was particularly incensed.
Forty-seven-year-old former librarian Paul Clift has been HIV positive
himself for 13 years and has acted as the patients' representative at
the Brighton Lawson Unit and the Elton John Centre for over a year. He
deals with problems and is actively included in policy and planning in
a unique way.
"I sit on a committee with the senior doctors, nurses and the management
team," Paul explains, "My role is to represent nearly 800 local
HIV positive patients. Sometimes it's moans and complaints and I do a
regular surgery at the clinic every
Thursday morning. If people have a problem they know I'm there and can come and see me. I don't advocate about peoples' individual treatment but
