A list of less than desirable people and places- can we?

[sptcmom]

Is there anyways we can list all the rude unprofessional, money grabbing, manipulating, unethical, not returning calls, bad communication, insurance fraud experiences with people (docs, RNs, case managers etc)and places (IVIG centers, labs) that are less than honest, shady insurance dealings etc?

I have been reading many experiences that parents have had and have some of my own. Shouldn't there be something a parent can do? There should be a certain standard of care, best practice and ethics that each patient especially pediatrics is entitled to. We should be able to complain so no one else has to go thru that again but at the same time not have to worry about substandard care as retaliation for our children.

I once wanted to complain to JCAHO about very substandard care at a JCAHO accredited IVIG facility for my DS but they want names. Gone are the days of anonymous complaints that could be investigated.No one wants to be liable for their inefficacy or nasty attitude. PANDAS treatment seems to be the next goldrush for so many medical professionals.

Is there anyway we as a large group of parents forking out hundreds of thousands to dollars to line the pockets and secure early retirement and buying islands for these professionals- can't we do something? A little respect, timely communication, honesty with insurance dealings, fairness,respect for parents and children, valuing our time if expecting us to value theirs.

Can't we have a collective voice? I don't understand how the confidentiality thing would work or if there even needs to be one keeping in mind Freedom Of Speech etc. It would just be nice to know what pitfalls exist out there all in one thread just like the imp Pandas link thread. I wish......

[amy s]

I appreciate what you are saying but this is not the forum. We are trying to help our children...that's it. If you want to complain about providers...do it in a private forum or via email, please. Everyone has a bad day once in a while and it doesn't mean that they can't help someone else's child later on down the line. We are limited enough as it is.

[sptcmom]

I appreciate what you are saying but this is not the forum. We are trying to help our children...that's it. If you want to complain about providers...do it in a private forum or via email, please. Everyone has a bad day once in a while and it doesn't mean that they can't help someone else's child later on down the line. We are limited enough as it is.

 

Oh dear. I think I'm being misunderstood.

Ofcourse I understand what this forum is about. Its been a life saver for me and my son. I would never have been able to give DS the same care had it not been for all the wonderful wisdom here.

Its just that I read so many posts about parents being mistreated by providers. I do believe all information is good information. If I had known about specialists who don't believe in Pandas or just plain have no time for new patients I would have saved weeks and weeks of time trying to get care for DS when he was suffering at his worst. Its not complaining and whinning about providers, its more like valuable heads up that can save time and financial resources.

Anyways I'll just be quiet now.

Thank you for your reply.

Edited August 22, 2010 by sptcmom

[Chemar]

personally, I agree it is not a good idea to air these grievances on a public forum.

As was mentioned, it is already an uphill battle to get some things approved and covered etc etc.

I just dont think it wise to do this kind of expose`

 

I did notify Sheila as well to get her views re liability/confidentiality issues

[colleenrn]

I think in the interest of helping our children it would be a great benefit to know, to get a heads up, on who would be an utter waste of time taking your child to see, whether it be an MD/RN/NP/facility/specialist/etc.....

 

If we have had a teriible, useless experiences with a particular health care provider, is it not in the best interest of all of us and our children to know who these people are so we don't waste precious time with them?? If someone has seen a health care provider that doesn't even acknowledge the meer existence of PANDAS, should we not alert each other? I don't understand. I am not alking about slandering someone, just giving a fellow PANDAS parent a heads up.

 

SPTC Mom- I agree with you.

 

Colleen

[Chemar]

I understand where you are coming from Colleen and sptcmom

but again, please lets rather wait for Sheila to give a clear guideline on this before more names are posted

 

certainly there is absolutely nothing preventing anyone from sending a private message to someone else if they see them posting about a provider/insurance etc that they feel let them down

[nevergiveup]

I love the star system, and it could be like a survey. Things are getting a little weird out there now, neurologists are seeing the nimh Tom Insell article and saying to patients they are now considering using ivig. But still stringing parents along with pysch consults, rheum consults and infectious disease consults. Cuz they really do not still know how to differentiate the panda kids. It scary saying they will give ivig but stringing them along for a year until the study is done. (Of course very unknown to the parent) How do we inform these parents that the sames docs whom never believed in pandas and never have treated, still are not going to treat just delay the parents for another year. This delay could lead to less success of symptom resolution even with ivig finally. Now that pandas exists, we may have an even bigger battle on our hands to differentiate the good docs from those just trying to figure it out. Its frustrating to watch the spin continue! Even though this forum is no place for critism of specific docs, I agree we must find a way to still help our parents find the right treatment, and timely treatment.

I can see both sides here. Perhaps (Sheila?) We could list places a bad experience was had, but only list the ID of the person who had the experience so people could PM them offline to get details? That would save a frantic family from dire disappointment and at the same time not slander someone? Or how about just a star system? One star would be a bad rating, five stars would be great! That way if one person had a bad experience and one a good, both would be reflected, again allowing most opinions to occur in a PM, yet no actual comments?

 

Nancy

[Sheila]

Hi --I think Chemar called this one correctly. We can't do a negative system due to legal liability, and it is also against our ACN guidelines. On this site, you will have to resort to PMs to share your experiences.

 

I know firsthand the frustration of finding physicians who "get it" -- regardless of the condition. I didn't deal with PANDAS but have been through a number of other difficult situations with family health issues.

 

Just part of the problem with a scoring system or referral list: Doctors change their protocols when new research or best practices are shared, or based on personal experience. So someone who was closed to PANDAS a year ago may be open now. Different approaches work for different patients, so a doc who 1 family was very unhappy with could be just what someone else needs. Plus, the very nature of PANDAS makes it difficult -- a quick improvement resulting in a positive "report" can be followed by disappointment several months later causing the family to now doubt the treatment. Keeping something updated would be very tricky.

 

Perhaps someday another site will have a system similar to what the Defeat Autism Now group does -- offering a list of physicians who commit to using a particular protocol, and the list includes when they were trained through specific conferences/seminars. Then the user can decide if they think the person is qualified for their situation. This has taken years to develop by DAN and they have the benefit of regular conferences that promote certain approaches. At present, treatment protocols for PANDAS are in such a flux that it is difficult for doctors to know what should or should not be recommended in particular cases, and there needs to be a protocol overhaul. It's going to take a bit of time to sort things out and it is, unfortunately, a very difficult time for families.

 

As parents you are doing a great job of providing mutual support for positive findings and sharing your specific physician negative experiences by PM. I do wish we had easier answers for this issue. Sheila