In the midst of a busy period – about ten weeks when everything seems to be happening at once – our HIV patient group celebrated its ten-year anniversary...
which is kind of amazing, really.
No offices, no paid staff – so there's no way we can be defunded, even in a time when the world seems filled with greedy rich people and government cutbacks. And some collisions and problems among other HIV charities in the area – we've kept as far away from those things as possible; I hope we can stay immune to it all (if I can use that term...). I've been the general manager for just under eight of the years – I took some breaks, then returned to it... two of the original six members have died (gentle, hard-working David, and also Steve, who now has a foundation named for him); and a couple of others – but not many.
We've done about 250+ hours of 'training' – which is where we have two or three PWAs talk to medical students, or psychology students, or sometimes nurses, doctors, even GPs, about our lives, experiences, problems... they're generally blown away. Fascinated, full of questions – even medical students who are normally focused on technical issues suddenly discover that we are – well – people.
And over the same ten years, probably about 150+ hours of peer counseling. And then there's sitting on NHS committees to represent a patient viewpoint, and keeping up a website (which needs retooling – the graphics, by Tony, are here).
A few of us are a bit fragile – as much with age as with any HIV-assignable condition; most are relatively healthy, looking for things to do. In fact, one of my biggest concerns now is that we have, for instance, ten or twelve people interested/trained in doing the peer counseling – and we only have about that many referrals in a year.
But people want to do things – go into prisons and talk to prisoners about AIDS, work out a patient self-care management program, as they do in Leeds...
It's good that we're almost too restless, that so many of us want to do more: we have the energy, the health, do do it all... we'll keep trying to find avenues for this energy. But the life it represents – that alone is pretty fantastic.
It is clear, by the way, that hardly any places around the UK (or perhaps elsewhere?) have a group like ours – at least not one that has been so steadily viable.
The group was originally created by Melinda, the head of Clinical Psychology here in Newcastle; the night before this celebration, there was an expensive and large-scale NHS dinner/awards ceremony, where she was up for an award for leadership. She remained a runner-up – we were a bit disappointed; but then one of the young women psychologists who works with her said, during a break, Let's go up on stage and take photographs. So we did: just like winners.
And so: we are continuing to do things, continuing to – frankly – leave the nurses and doctors and administrators continuously mildly surprised, that we're so active –
I guess I don't have a clever way of saying more about it: but this is a Good Thing. And I'm proud of it.
Comments