Mayo Jacksonville gastro struggles

Posted by gastrogirl @gastrogirl, Feb 27 1:15pm

Is there any help for those of us who are transitioning from Mayo to our local docs? I was thrown to the wolves and am left on my own to get care now. There is not one doc in my area or close by that will follow Mayo care plan or required testing given by Mayo.
It has been a year and patient experience has not been able to help in any way. There ought to be some help to get patient established for care once leaving Mayo. Is there a social worker or anyone?
I begged the gastro team to take me back just to do the testing they wanted because I can not get it and am in serious condition now. They refused to take me back. Told me go to my local GI. I am in good hands. But the local GI refuses to listen to what Mayo said or do testing. I am stuck in this loop between Mayo not helping or seeing me again and every local doc who specializes in this not taking patients or not understanding what to do. I am quite upset that Mayo left me in this situation without help! Advice since patent experience tried and I was denied! I would love to transfer to Mayo in Minn. but was told I can not even do that! I am literally always in sever pain, lost over 15 pounds and unable to eat or drink. Can anyone advise if Mayo has help for patients and why Mayo is refusing to further help in any way? All I did was cancel one set of test because I could not afford to stay there the whole week so needed time to reschedule and then they refused to see me after that.

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Colleen Young, Connect Director | @colleenyoung | Feb 27 9:13pm

@gastrogirl, I'm sorry to hear that your struggles with healing and health continue. The goal at Mayo Clinic is to propose a long-term management plan that can be followed by your local primary care physician.

I remember you mentioning in a previous post that you were seeking a consult with a social worker at Mayo Clinic to help coordinate care and services, both at Mayo Clinic and locally. Were you able to connect with a social worker then? Can you contact them again to help secure local care?

gastrogirl | @gastrogirl | Feb 28 1:39pm

Thanks for the reply. I was seeking out a social worker at Mayo and was told one does not exist. Locally my social worker, through my insurance, can only suggest doctors in my area.
Mayo gastro last told me that everything is different now and something has changed and I needed a series of test, almost ten, to figure out what is going on.
They scheduled me for these, however something personal happened so I needed to cancel and reschedule for finance reasons.
In the meantime I went to six local GI. I need a neurogastro because of my condition. None really exist here.
Three of which were local hospital GI docs. I was told my all of them that they can not handle my condition and nobody can. I am "too complex" for them to take on. I need a terchiary *spelling level of care that only a place like Mayo can provide.
I understand Mayo can only diagnose and give you a care plan.
Where I fall between the cracks is getting these other test to get that "new" diagnisis, so that these doctors can understand what to treat and how to treat it.
These local gastro docs do not even have access to some of the test that need done. It is over their ability.
A few did not even know what an NJ tube was. And I can not get them to even look over Dr. Lacy care plan and notes. They do not have time to look over all that stuff with all the other patients they have. I am told go back there.
I begged Mayo to just take me back to do the testing only. I mean, it was once scheduled anyhow. So now that I can do it and no other doc will, why do they refuse me? They keep saying I am in good hands with local doctors and they must take over from here.
I explained that this is simply not true. I may have appointments but they refuse to see me. My next and only other appointment is almost a year out!
One gastro even told me that what Mayo said I have does not exist so the testing they want is idiotic! So of course I do not feel safe going back there!
I am caught between the two and not one person at mayo is trying to help me get what I need or set me up at home. I feel thrown away and hurt by the fact that not that long ago they had all this scheduled to be done there. But I canceled for financial reasons and tried to do it local. Found out I can not and then was told its too bad. They wont see me anymore? And I can not get them to even send me over to Minnesota just for testing and a new diagnosis? All I need is a current diagnosis because what I used to have is now completely different as far as every symptom. So no local docs have any idea what to do or why I am like this.
To be told locally that nobody is ever going to see you or be able to handle you so talk to Mayo. It makes a person just give up entirely! I must not be the only patient refused to be seen any more at Mayo and going home to be on their own and overwhelmed. At this point I have given up on all healthcare as a patient, I can not take it mentally anymore. I was told when first going to Mayo, that once it becomes cancer, there is no need to worry because I have great docs and excellent care with endoscopy from now on so I will be in great hands as they will find it right away. So how is it that now I am no longer able to even get test that were once OK for me to get there? At the very least, give me a new diagnosis and help with follow up at home.
Any advice? Does this seem right to you?

Colleen Young, Connect Director | @colleenyoung | Mar 5 3:14pm

I encourage you to contact the Office of Patient Experience:
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

gastrogirl | @gastrogirl | Mar 5 4:43pm

In reply to @colleenyoung "I encourage you to contact the Office of Patient Experience: https://www.mayoclinic.org/about-mayo-clinic/patient-experience Phone: 844-544-0036 (toll free) Email:..." + (show)

That is why I am so upset. I did so. They tried and said that the DR and department heads denied me. That is all they can do. So I am now left in limbo and feeling abandoned because I still have NO idea why suddenly I can not just go reschedule what was already scheduled at one point.
So that office will no longer help since they tried. I saw my local cancer doc yesterday and they are very concerned that I am not being followed or tested because of my weight loss and sudden change in condition that no local gastro will address.
I have fought like heck and went through patient experience twice now. I asked to see anyone at all or simply just get the tests and not go back. DENIED! Which leaves me in a bad bad way. I feel they could care less.

sjs1 | @sjs1 | Mar 6 12:37pm

There are other facilities like John Hopkins, Cleveland Clinic, Univ. of Michigan, Northwestern, etc that have speciality depts if Mayo wont take you back. But Mayo C. and these facilities are for consults usually not home maintenance and it may take more than one trip to diagnose a condition and then you mentioned the lack of follow up care with local doctors at home once you had a medical plan. There is a question of insurance and financial resources. I wish I could be of more help. When I went to the Mayo Clinic I met a patient who moved to Rochester to live because of her medical condition and need for continued care.