Saturday, April 30, 2011

Those on HD don't have the strength to come for support. The rest don't need support.

The Hyderabad Kidney Foundation organized a patient support group meeting this evening at NephroPlus' East Marredpally branch. All of two people showed up. One of them was a transplant recipient. The only dialysis patient who came, came at 6 p.m., a full hour behind schedule and I suspect he came to get a missed Erythropoietin shot.

I honestly did not expect to get a huge a crowd. I expected around 10 - 15 people to come. So, I was way off. I probably misjudged the patients.

Here is how a hemodialysis patient probably thinks: "The three times that I need to go to a (expletive) hospital are the three worst times of my (expletive) week. And you want me to come on my day off to a (expletive) hospital!"

So, the patients are probably going to do everything they can to stay away from anything remotely resembling a hospital - let alone a standalone dialysis center! Hemodialysis also drains many of them out so completely that they barely have the energy to do anything. If they actually have energy left, why would they make an effort to go for a boring support group meeting?

We had informed a few PD folks too to come. The sole reason PD folks do PD are that they don't want anything to do with HD. Most PD patients are leading totally normal lives anyway. So they don't really need any support. So, why would they come for the meeting?

Where does that leave the support group initiative? Search me!

4 comments:

Thrinath J Chakravarthy said...

Kamal! Its just the first meeting. I hope the news hasn't reached to many who are in damn need of the support. Once the support needed people turns up, then automatically support vendors turn up. Though i'm not aware of the internal things in this area, again everything is business at EOD for most of the people.

Even the first football world championship held in 1930, only 13 teams participated. And now, countries wait in queue to get selected as a team...So, its all matter of time and publicity.

But kudos for your initiative. Keep going Kamal!!

Madras Hash said...

The question to ponder is "What is the support that CKD patients need?"

It is quite likely that the support they need - if you create a batting of order of it - has very little to do with the disease itself. From their perception that is. I have participated in a day long meeting with a number of PLHAs (People living with HIV/AIDS) and not once was the virus or the disease mentioned! They had issues of livelihood, property disputes, how they were treated by colleagues/family, etc. - issue quite common to the rest of the population.

Make the support group sessions more broad based - not just for providing advice from experts. Show them a movie, give them a bag of goodies, and give them a chance to be of help to each other.

Support could be for a care giver too.

In the early days of the Support Group, you may have to call people and remind them the day before and also the morning of the meeting. You can tell them that they are needed to GIVE support.

Leslie Fernandes said...

Never Give up my friend. All the best for future initiatives.

Kamal D Shah said...

Sure Leslie uncle. I am not giving up. But I will definitely need to tweak what we're doing to ensure more participation.