Patient Advisors/Counselors

[renalsw]

I recently had a patient come and ask about becoming a patient adviser/counselor for new patients.  I believe that this would be a positive addition to the unit.

What I am looking for from you all is your thought on this.  Do any of your units have patients who offer this to other patients?  She and I are looking for information that might help us make this a valuable venture.  Your input would be greatly appreciated.  I have done some research on the net but have not been very successful in finding out if it has worked in other settings.

Would appreciate suggestions from those who deal with dialysis on a daily basis.  What would help you adjust if you were just beginning.  I want to put this website in a newletter to my patients but would also like any other information you could share.

Thanks,
Renalsw

[Hawkeye]

I'm not entirely sure of the full function these advisers would be serving for the clinic, but I think it is a great idea.  Something similar was attempted at one of my clinics and it didn't last very long.  The setup at my clinic was more of a patient advocate than of new patient adviser / counselor.  What was done is everybody from all 3 shifts were approached and asked if they would be interested in the position.  Once all the names were put together each shift did a secret ballot on who they would want to represent them.  So each shift for M-W-F and each shift for T-Th-S had there own advocate.  These advocates would meet together and discuss the issues they had with clinic operations and then they would get together with the clinic manager and discuss these issues and make suggestions on how to improve things.  The problem came when none of the advocates could agree on times to get together with one another to have their meetings.  Then with all the staffing changes involving the manager and the social workers who were helping out with the process it was never picked back up again.

The only problem I have ever seen with trying the kind of thing you are talking about is you need to make sure that the patient is well informed about how the clinic works, the policies and procedures of the clinic, the reasoning behind those policies, and why certain things are considered better for you.  This patient after all would be representing the clinic and your company.  For example, we had a patient that dubbed himself a patient adviser and would go around talking to all the patients feeding them all sorts of missinformation.  He would tell them that catheters are better for you than fistulas, don't take heparin because it will make you bleed longer after treatment and you don't really need it they just want the money they get by giving it to you...stuff like that.  They really had no clue about what they were talking about.

[DeLana]

Hi,

I think it's a great idea!  The MSW at the clinic I used to work at once tried to get this started, and there were interested patient advocate volunteers, but it never got off the ground.  However, I don't see how you could go wrong with this concept.

I wish you the best of luck, and please keep us informed -

DeLana

[Chicken Little]

I think it's a great idea.

Dealing with the social workers I have so far has somewhat inspired me to go get my masters and do this myself someday.   They've been very nice and offer emotional support, but don't seem to have a clue otherwise.  They basically read from a script.  If you have questions that aren't on "the script" they are at a complete loss and seem to have no desire to research or offer suggestions on where to start looking. 

Maybe I'm alone in this, but I was required to actually hunt down information I didn't know when I was working.  That was part of the job.   Saying I didn't know and dropping it wouldn't have been acceptable, at all.  

[renalsw]

 

Thanks for the input.  One thing I am big on is research.  I may be a little out there but if a patient asks a question, I will do research on the internet if need be.  I often look for resources on the internet that might help my patients.

AS far as I am concerned, it is all about helping the patients.  I have no idea what it is like to be "tied" to a chair 3 times per week for at least 4 hours.  I need patients' input to help the other patients.  Not everything can be found in a classroom when it comes to being a decent social worker, especially in renal social work.

[Sluff]

Thanks for the input.  One thing I am big on is research.  I may be a little out there but if a patient asks a question, I will do research on the Internet if need be.  I often look for resources on the Internet that might help my patients.

AS far as I am concerned, it is all about helping the patients.  I have no idea what it is like to be "tied" to a chair 3 times per week for at least 4 hours.  I need patients' input to help the other patients.  Not everything can be found in a classroom when it comes to being a decent social worker, especially in renal social work.

There should be more like you out there.  Thanks for being you.

[Bajanne]

It seems like a great idea, taking into account the caution that Hawkeye signalled.  It would be a little like how it is here at IHD.

[Jamesw]

Hi, I am from Victoria, BC here we have volunteer positions through the Vancouver Island Kidney Patients Association. These patient volunteers write the news lettre and take part in introductory seminars performed for new kidney patients. The biggest thing is that it helps give those who are volunteering a sense of purpose.

[Aldente]

The term "adviser/counselor" immediately raises a red flag for me.  What will the person "advise," and to what degree will they offer "counseling?"  My first concern is the person qualified to offer advice and or counseling?  It's one thing to offer advice to a friend but when you represent a facility the help you give represents the position of the facility.   

Counseling generally requires that the caregiver knows something about the background of the person they are trying to help.  With current HIPAA regulations this information is highly restricted.  How will a volunteer be held accountable if they do learn some personal facts and divulge that information?  Will the facility be held liable?

Another concern I have is the relationship between the volunteer and the staff.  Does the volunteer have a responsibility or obligation to tell the staff things they learn about patients?  What if the patient says "Don't tell anybody but I...?" 

My whole point is that being an adviser/counselor caries a great deal of responsibility and training.  Is this a position that should be handed to a volunteer?

Perhaps the person could be called a greeter or a hospitality advocate.  They can greet people when they come into the center and they can offer friendly conversation.  This person needs to limit their discussion to non-clinical issues.  By this I mean they are not to give medical advice.  I even have a problem with this person sharing their personal dialysis experiences unless they make it perfectly clear that this is their experience and may not be applicable to someone else.  Some people will unfortunately interpret personal experiences as what they should be doing.

In our clinic we had a fellow who when his treatment was finished would go to each station and say good bye.  He was a jovial sort of person and most patients enjoyed his visit.

As always, this is simply my opinion, for whatever it is worth.

[livecam]

All points well taken Al.  With all the training in the world nobody knows what it is really like unless they've spent time in the chair and have been through the mill with the other aspects of the issue.  The social worker wonks used to come around periodically and ask their scripted questions.  It was a pain to have to deal with that stuff, especially the aspect of being addressed like a young child by an adult who knew far less about the issue than I did.

Good patient advisers can be seen as a blessing.  In one you would be talking to someone who has been there and understands the issues at hand like no other.  When this whole thing was a mystery and I had no idea of how to do something as basic as get on a transplant list it would have been nice to talk to someone who could have said "here's what I did", sort of like what we get on this site.

Maybe the answer is in having patient advisers available but only having them talk to patients who specifically request them.  Personally I would love to help out in that aspect if it were possible to do so.  Many of us feel a need to repay what we've been given and helping the patients who are stuck in the trenches now is a great way to do it.

[Ang]

in  my  unit  we  have/had  patient  reps  who  every  3  months  would  sit  down  with  the  unit  manager  and  say  these  are  our  concerns,how  do  we  find  a  happy  medium.
18  months  ago  i  started  in  this  unit,  on  day  1  i  was  asked  would  you  like  to  be a  patient  rep,18  months  later  nobody  has  still  got  back  to  me  about  it.
my  unit  is  run  by  the  nurses  for  the  nurses,as  95 %  are  mature/elderly  patients,  this  is  tolerated  behaviour
i cannot this  alone  so  i  watch  out  for  myself.







EDITED: Fixed smiley tag error- kitkatz,moderator