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Neurology dept. in MN - Conveying complexity of case on questionnaire
Hello, I have a young adult daughter with an extremely complex neuropsychiatric/neurological/developmental/medical history that would be incredibly challenging to sum up in the medical questionnaire where it asks "what is the main medical symptom"? This is a complex constellation of "symptoms" not just a "main symptom."
My daughter's neurologist has submitted a referral and they subsequently emailed the questionnaire.
I was told by Mayo they will not review any documentation or photos/videos until they have looked at the questionnaire to determine if my daughter would be a candidate as a patient and only at that point will they ask for documentation, etc.
Every doctor who has seen my daughter has concurred that without reviewing her documentation, especially a short video, that it is extremely difficult to sum up her complex history, which has led us to this juncture of being referred to Mayo.
She will be 27 in a few months. Time is just not on her side any more with getting to the bottom of what's going on and to get appropriate recommendations for diagnostics, treatments, etc.
If anyone can suggest how to best approach this I would greatly appreciate the guidance. Thanks!
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They are difficult , I called for a second opinion and they told me there was nothing available. I wonder why is advertise in the website.
@ellie2902
Understand your frustration with forms when your just trying to get your daughter help.
Would your daughter 's provider who did referral her be able to help with questionnaire? Or, at least give you the current medical diagnosis to put on form.
The questionnaire is trying to determine what dept should review her medical records. Even though you know it should be neurology, sometimes the form is generic. Is there a way to put into words what the video shows?
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8 ReactionsThanks, Laurie! The doctor is a neurologist and she did put the "possible" diagnosis on the referral she sent in so they would already know this is for Neurology, that wouldn't be a question given her referral. And no it is virtually impossible to describe the video in words. Yes I could write a description but again every single doctor/professional who has seen the video whether it is before or after looking at documentation has strongly concurred that there is no way one could possibly describe in words. It's a really short video (like 7 minutes) so it's not like I am requesting something that would take up time.
@ellie2902
Hopefully the referral will be most important info. Seeing you have to put something in form, do you have access to providers notes online? Maybe there are words in notes that you can copy.
If not, use your best judgement, most important is to put something and submit. If I was in your situation, I might enter something like:
Neurology - "enter diagnose" Complex history / diagnosis, can provide a 7 min video if requested to best show symptoms. Not possible to describe in words. "
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1 ReactionThanks! I was thinking of doing something like that. I know that the neurologist also emphasized on her referral the importance of watching the video but I'll just do my best on the questionnaire and hope for the best
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1 ReactionI don't know if the OP is still active here, but I am curious how things turned out. I have an adult daughter with extremely complex health problems and we were given an appointment in neurology three months out. I am curious about navigating medical care when your child is a legal adult who cannot always make good decisions for herself.
Hi @adoptivemother @ellie2902, the originator of this post, hasn’t been active on here for a few months. By tagging her, hopefully she’ll receive a notification and will respond to you.
I found a couple articles that might be helpful regarding having access to medical records for an adult children.
From National Law Review:
https://natlawreview.com/article/three-critical-legal-documents-every-parent-should-get-place-now-to-safeguard-their
From Focus:PHI
https://spanadvocacy.org/wp-content/uploads/2021/09/Understanding-HIPAA-What-Parents-Need-to-Know-About-Privacy-Their-Adult-Childs-Health-Information.pdf
Whenever your daughter has an appointment with a new physician, there should be a HIPPA form that she has to fill out. There are spaces where family members or friends can be listed with whom records may be shared.
Do you know if your name has been added to the list?
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2 Reactions@adoptivemother
If your daughter's neurology appointment is at Mayo, usually when check into your first appointment the desk attended will explain the form to allow release of information to another individual. She will need to fill out and sign the form for each person she wants to share medical records with. That form is then scanned into her medical records at Mayo.
Have you discussed with your daughter if she is willing to share her medical information?
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2 ReactionsI've completed Mayo questionnaires several times and been there many times. I thought you did a great job of describing your daughters issues in your post without getting into the weeds. Your doctor's referral should have all the details. If the Dr did not send all the relevant details, you need to get those records and send them with the questionnaire. Mayo uses your questionnaire and records to determine how many specialties will be involved in patient care. Then a committee of doctors from those specialties review everything to determine if Mayo is appropriate for the patient. Once accepted, the committee meets regularly during treatment to coordinate treatment regimens and keep each involved specialty informed.
Mayo is a great place, like no other. You can do this!
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