Hey people,
thought I share this with you… some of you may remember Brent Roberts from U.K. …he’s one of the first people who used Aksys and continues to use today.
Recently, I spoke with him and he stated that he started his own support group for patients…check it out…once you visit check the photo section…
http://carrington57.tripod.com/pacamaks/
If anyone is near Brent down there you might want to visit their gatherings!
Beth:
That’s why I think education/support groups with fewer than 20 people seems to be best. Sometimes the best groups are the toward the lower end of that. Our Missouri Kidney Program education classes usually have 10-20 people counting family members and the people feel free to ask questions and talk with the patient and professional speakers and with each other. It’s terrific to watch
Yeah, I agree 10-20 is plenty. I really miss our support group meetings. The education was really invigorating and it was great the way everyone participated. Patients and their family members came up with interesting questions and comments. And the professionals came out with all kinds of stuff they hadn’t spoken of in-center. At one of the meetings the medical director was the guest speaker. Oh my goodness, we were all anticipating his lecture and thought he would be terriffic as he had quite a reputation, but he was terrible as a speaker and put everyone to sleep! Then at another meeting, our other neph spoke and he turned out to be the most gifted speaker. He spoke on anemia and made the subject come alive by speaking of bodily systems and how they related to one another- it was amazing and brought the subject alive. The best meeting of all was when the SW spoke. She let loose and was telling us all this stuff about the system and how it worked and about patient rights. I couldn’t believe she was laying it all on the line but she did.
Hi
Right now I have too much to handle without going to a group meeting. I’ve have been looking into a group for my mom problem, but with all the things going on all I can do is go on that message board. This format ,for me works best. Even on this format you can see the different views. How much harder would it be to have a group meet with all the views, plus someone would have to make the call on what to do or not. And you may not have the time to really look into all the things brought up. So how often could you meet? Isn’t that a part of the problem . I may have a great idea , but if the person in charge wants things to stay the same , they stay the same. Why rock the boat, I would have to come up with so much data on the idea in order to get the idea on the table. And how would I get the needed data.
While in person meetings work, the exchange of ideas and thoughts on the message board is fast. And no feelings get hurt.
bobeleanor
Since we don’t have a support group at our unit, or for miles around, but do have a computer in the waiting area thought it would be a nice idea to add a few sites to the Favorites list. Well, Friday I sat down at the computer only to discover that section of the computer had apparently been disabled. I could only access the company’s site and Poker, downloaded by whoever controls what is seen on the computer. Lin.
Wow, you have a computer in your waiting room? None of my units have offered this. Too bad they are limiting it to the corp propaganda and gambling, but that is usually how it goes.
bobeleanor
This format ,for me works best. Even on this format you can see the different views. How much harder would it be to have a group meet with all the views, plus someone would have to make the call on what to do or not. And you may not have the time to really look into all the things brought up. So how often could you meet? Isn’t that a part of the problem . I may have a great idea , but if the person in charge wants things to stay the same , they stay the same. Why rock the boat, I would have to come up with so much data on the idea in order to get the idea on the table. And how would I get the needed data.
While in person meetings work, the exchange of ideas and thoughts on the message board is fast. And no feelings get hurt.
Our support group had a couple of patient leaders who did all the work of organizing the meetings. They put out a real nice little newsletter, too, giving a recap of the meetings, sharing some renal recipes and humor and giving details of the next monthly meeting. They told everyone to feel free to jump in and provide their suggestions for meetings and any input they desired, but no one participated much at that level.
The unit loaned a coffee pot and some napkins or something, but all was left up up to the patient leaders and they didn’t get much help from either the other patients or the professionals. We invited all the professionals and nursing staff to attend, but they didn’t show up either unless it was their turn to do the speaking. It’s too bad as those who did attend always learned something new and had a good time.
We bonded in a way that one can’t do on the internet. It was a very meaningful experience amongst the few regular attenders. We were being educated to a higher level that should be the norm and the medical professionals let their hair down and we related with them on a more human level. We got to know the other patients’ family members and were able to lend support to the spouces of the patients who passed away. This type of association brought a deeper dimension of education and support into our lives. We were among others who shared our struggles and understood where we were coming from.
I recall one meeting the neph and one nurse attended and we got all kinds of helpful info from them in the way we wish we did all the time in the unit. Another time, we had a special Christmas meeting and we had one of the nicest times with the son of one of the patients and a local church choir performing a very talented concert of Christmas songs following the nice buffet meal. it was a memorable occassion that I have never forgotten.
Meetings could of been even better if everyone pitched in and did what little bit they could, but most ppl in both groups were apathetic. Those who did attend all benefitted.
I work for an access surgeon in sc. I am interested in starting a support group for our dialysis patients. I honestly think they need it and would benefit from it. I am looking for suggestions from a patient and or family members perspective. What do you want and need out of a support group? I am open to suggestions at
mjbillings@srhs.com
thanks so much in advance for any help you can give!
[quote=gus;7473]hey people,
thought i share this with you… Some of you may remember brent roberts from u.k. …he’s one of the first people who used aksys and continues to use today.
Recently, i spoke with him and he stated that he started his own support group for patients…check it out…once you visit check the photo section…
http://carrington57.tripod.com/pacamaks/
if anyone is near brent down there you might want to visit their gatherings!
:d[/quote]