Disillusioned

[AlanBama]

My partner and I joined our clinic's Patient Advisory Board last fall....he was elected as an officer.   We meet the first Tuesday of each month.   It hasn't turned out to be at all what I anticipated....

I (stupidly) expected that we would be discussing things going on in the clinic, treatment-wise, and be more of a sounding board for patient feedback and acting as a "mediation group" between the patients and the providers....as it turns out, so far all I have gotten out of it is that we are a FEEDING committee.  Each month, the PAB sponsors a "Lunch and Learn" at the clinic, which is a great idea....they have guest speakers, etc.   But seems that drug reps aren't so quick to provide lunches anymore, and it seems to me that all we ever discuss is how we are going to feed the people/who is going to serve it/clean it up/ etc.   The majority of the attendees aren't patients, but staff (a University Hospital).   We had a fundraiser; now the talk is about using the money we raised for lunches.   I've gotten roped into serving food twice, and contributing towards the cost of it.   Somehow, this doesn't seem quite right to me, since many of the patients are poor/on disability like myself.....

Anyone else had a more positive experience on an Advisory Board?   I would stop going altogether if my partner wasn't an officer....and you wouldn't believe what all he has gotten roped into.

I probably am not in the best frame of mind to be on such a board anyway; I still work part-time, which has become more difficult and more hectic and stressful for me lately....so I'm not the best candidate as a "volunteer'.

Hugs,
Alan

[leatherman]

Sorry to hear that you've had a bad time, and I'm sorry to say that I hear the same tales about the clinic/ASO here in my area. A new friend of mine (well, everybody is my new friend since I just got to SC back in Sept ) used to be on the board here and refuses to ever do it again. It seems here they really didn't want to hear from patients and didn't want to plan for the future of the clinic. They too just wanted to plan eating events and figure out who could pick up and drive the dead-beats to these events free-of-charge.

Unfortunately, it seems a lot of the agencies have either gone big-business handing out the federal monies and are nothing like the organizations that started them out (actual doctors and patients trying to stay alive and get better services) or else they foundering and about to collapse under the burden of caring for too many patients without enough funds.

I've recently volunteered to man the clinic's pantry passing out taxables for a few hours each month, and have joined their Speakers Bureau (a group of poz people willing to share their story as a personal addendum at the ASO's HIV prevention events). Though asked to join the board, I declined after some of the tales I've heard.

mikie
(who was a Speaker for the first time last night! )

[Boo Radley]

Lordie, Alan, sounds like a scam!  The Chair of this group isn't named Eldon by any chance?  How dare they ask patients to pay for so much as soft drink?  They should be providing transportation cost assistance/reimbursement to members who need it.

The N.O. AIDS Task Force has a Board of Directors who are the ones responsible for fundraising and other onerous tasks.  Most of them are in the social register or whatever-ya-call-it & 1 or 2 "AIDS victims" [my words, not theirs] sit on the Board regardless of socio-economic status.  There is a patient advisory group (I think there still is, at any rate) but it requests funds for such activities as you describe.  

I haven't dealt much with the Task Force since Katrina so the situation here may be similar to yours but I don't think so.  With a smaller population New Orleans often seems like a small town in the middle of the sticks (not implying you live in such an area!) -- the city that used to run 24/7/365.25 now rolls up the sidewalks by 10PM at the latest.  Nonetheless the Task Force still holds several events annually to raise funds and apparently still gains enough for discretionary funds that don't have to pass Ryan White regulations or whatever.

For instance, even though my monthly SSD and LTD income exceeded (by about $3.57) the ADAP guidelines in 2006 I was able to get free Trizivir.  My monthly out-of-pocket would have consumed SSD and the LTD is 1/3 the SSD.   I know and am very thankful I'm in a financially more livable situation than many including several friends.  Luckily I'd worked 30+ years before becoming otherly-abled & the generous Jesuits paid the LTD premiums as well as a decent percentage to SSA for the 20 years I was under their employ.  I remember reading Louisiana and California (? or some parts of) having the highest monthly SSI payments of over $600 for an individual.  $600 doesn't pay rent for a roach motel in N.O. any longer.   I hope I imagined that and it's not true...

Next time you're asked to provide food bring a few cans of Walmart cat tuna, Walmart imitation Miracle Whip, and a few loaves of the crappiest 1/2 day old white bread available.  Present your padded receipt and ask to be reimbursed or for a letterhead 501(c)(3) acknowledgment of your gift.  

Seriously (for a change) if you know someone else on the board (or clinic) who might be a sounding board for your observations I might try that first.  It seems as clear as a cloudless blue sky the clinic is behaving callously with their clientele, ignoring the financial realities of far too many people with HIV (and tons of other expensive diseases/conditions for that matter).   You're not supposed to have to raise money for the clinic and certainly not coerced into spending your own money no matter the sum.  It's a simple principal and unprofessional for the clinic to ignore it.

If it's mostly staff from a hospital tell the hospital to foot the bill or make them brown-bag programs.  Bribing people with food doesn't necessarily conduce to educating them as well.  In fact we all know short post-prandial naps are a healthy practice so anything but a few cookies or possibly cucumber sandwiches and tea is a bad idea anyway.

[Theyer]

Hello

I would be disillusioned too.

Does the PAB meeting have any written aims and objectives? Before you make a decision it might be interesting to put on on the agenda a review off the meetings.

Good luck anyway

Theyer

[AlanBama]

Thanks guys;  at our last meeting one item of "new business" (besides food) was coming up with a new mission statement for the PAB.   My pal Em suggested that I review some other organizations mission statements, and come up with some suggestions of my own for our PAB.

1) help patients
2) don't harrass folks into feeling obligated to serve/bring FOOD every time someone decides to 'meet'.
3) see # 1

hugs,

Alan

[AndyArrow]

Alan,

I'm so sorry to hear they treat the meetings like a party.  I hope you and your partner can turn them around to your way of thinking.  It sounds like they need to cut back on staff participation and increase the patient part of the PAB.

Hugs,
AA

[aztecan]

Hey Alan,

I hear you regarding boards like this that do nothing but meet and eat.

I belong to a similar board for the organization that runs the public health clinic here.

They like to eat and laud their "good work."

But when I bring up a topic, like someone complained to me that they were turned away because their insurance was not accepted, then they say, "Oh, that is a problem," then take another bite.

Really frustrates me.

HUGS,

Mark

[poet]

Hi Alan.  It's the same story everywhere, I would assume, given what went well on Cape Cod and what is under stress here in Maine.  I would suggest that your partner try to break things down iinto the pieces which jointly contribute to a successful effort.  Food is, sadly, part of it, where it can come from, who will pay for it.  Sometimes it's just a question of getting to word out wider to what you are, why you meet and what your needs are, being very aware of the tight economy and how restaurants have to watch their bottom lines/what they can easily contribute.  If you can say that such and such a place is contributing, you would be more likely to nudge someone else.  The Hyannis office on the Cape had Panera Bread always willing to give food.  P-town had a lunch program in place, so food was already in place.  Then there is the speakers angle, whom you might want to talk about what.  Then there's the agenda piece, the importance of having someone creating an agenda, getting it out before the meetings and staying with what's on it.  Deviation would include one member enabled to bring up complaint after complaint, stalling a meeting's progress.  And let's not forget the board setting the example by showing up early to set things up with chairs and then staying back at the end to do clean up.  If the whole board sets that example, it's much more likely that non-board members will get the message.