Hopkins reschedule

[strangeland]

So the other shoe dropped and I was notified by a chart message today that my June appointment with Dr. Braunstein was canceled and rescheduled to September with a non-MPN specialist. Not very helpful of them, was it? I've had to leave messages to try to reschedule, but no response yet. Feeling frustrated.

[Jschwab]

They could have given you a call. That's not right to cancel via an electronic message, and on top of it put you with a non-MPN specialist. Very frustrating...

[hunter5582]

Be sure to call his scheduler directly. She has a lot of rescheduling to do but will get back to you. I also sent Dr. Braunstein a message in the portal and copied it to the scheduler in email. I outlined the criteria upon which I would base finding a new MPN Specialist.

This is the list I sent.

Major Criteria

1. Active member of a MPN Center/Clinic team.

2. Focus on MPNs as a primary/major focus of clinical practice

3. Up to date on state of the art and emerging MPN treatments.

4. Active participation in MPN research.

5. Presents/attends MPN forums/trainings/conferences.

Minor Criteria

1. 100+ MPN patients.

2. Values a collaborative relationship with patients. Respects the patient’s ability to make decisions.

3. Focus on underlying mechanisms involved in MPNs (e.g. molecular pathogenesis, kinase pathways, proteomics, genetics).

We each have to set our own criteria for what we expect from a MPN Specialist. And we have to advocate for the provider of our choice. It is not acceptable to just be reassigned without input. We do need to take action to ensure this happens.

Even if good healthcare systems, assertive patients receive higher quality care. Passive patients do not. It is up to us to be out own best advocates.

[Lalasings in reply to hunter5582]

I’m presently trying to get a consult set up with my hematologist & JH. Do they have too many patients? What’s the “why?”

[Lalasings in reply to hunter5582]

Thank you Hunter for the list!

[havashan]

I'm in the same situation. I saw Dr. Braunstein for the last time last week. The two MPN specialists left at JH are not available (Dr. Spivak is not seeing patients and Dr. Moliterno is not seeing any new patients). So, it looks like we are on our own to find a new MPN specialist if we don't want to go to one of the doctors they are offering. The only option I can see is to go to New York where there are a number of MPN specialists. This is terribly upsetting. It took me a long time to find Dr. Braunstein and I felt secure having him care for me. Now I have to start all over again.

[hunter5582 in reply to havashan]

See the list at the bottom of this page. Johns Hopkins does have a number of other docs with this sub specialty. hopkinsmedicine.org/kimmel_...

[strangeland]

I just got off the phone with Dr. Braunstein's office. He "handpicked" the hemotologist I was scheduled with, but I can't find any information that she has any specific qualifications to treat MPNs. Has anyone seen Dr. Rapazzo?

Also, Dr. Spivak is retired and Dr. Moliterno is also leaving Hopkins, so they will have NO doctors currently on the MPN recommended list. Guess I'll be traveling a lot further. Still frustrated, and disappointed.

I will be sending Dr. Braunstein a message about my concerns. I'd appreciate knowing how he responds to others.

[hunter5582]

See the list at the bottom of this page. Johns Hopkins does have a number of other docs with this sub specialty.

hopkinsmedicine.org/kimmel_...

[strangeland]

Dr. Braunstein responded to my message saying the hemotologist he referred me to did have experience with MPNs. But she is not on the list hunter posted.