Level of care to expect???

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Senior member
Aug 22, 2022
Lost a loved one
I will write in abbreviated style. The purpose of the post is to understand if my expectations for care are unrealistic.
  • Tom diagnosed with bulbar onset ALS 8/16/22 with symptoms since March 2022. Big Hospital in NYC with ALS Clinic....BigH.
  • Meet with the ALS Team Sept 8, 2022. Lead physician, Nurse Practitioner(pushed for Peg tube), Pulmonologist, Nutritionist (asked questions, but gave no advice), Liaison with ALSA (not there), Physical Therapist (very knowledgeable but did not help us).
  • Physician will give 2 RX (we already have Riluzole). 2 RX never arrive at CVS. I follow up. Two weeks later physician emails with apology and 2 rx are submitted to CVS.
  • I call ALSA to connect. The rep very nicely informs me that the connection needs to come from BIGH . ALSA calls BIGH and then calls me back and is very helpful.
  • I send message on portal to request EMG #2 so we have the results b4 next Physcian meeting. No response. I then get a message from BIGH weeks later thanking me for scheduling the EMG on x date.
  • I send message on portal to physician and Nurse that Tom is ready for PEG tube. No response.
  • I follow up after 5 days and Physician gives me Nurse email and tells me to email her. I email Nurse and she says "the team" has been trying to reach me all day and that I need to make sure I gave them the correct #, or answer my phone. And...don't email her, only use the portal.
  • I explain to nurse why I emailed. And that no one on "the team" had called my cell phone.
  • We get pre-op meeting for tube scheduled for 10/24. I get a call a few hours later same day from BIGH and I am informed that Nurse has covid-19 and can meet with us 10/30. I ask if someone else can do the pre-op and I am told, only the Nurse can and that is the only Nurse for the ALS clinic.
  • We planned a short vacation for Tom (that I am not cancelling since he can still walk very slowly) and so now pre-op is 11/14. I do not have a date for tube procedure, and I have no hope that it will be scheduled without my prodding.
I had been very hopeful and thankful that we live close enough to BIGH to drive there (about 1.5 hours). I had thought since BIGH is a leader in ALS that we would have very good care. I am beginning to realize that the care is not there. Perhaps the "team" is only to look good on the website? Perhaps some of the issues are due to the labor shortage? Most important, our Physician is a leader in the field and often out of the office. So, I wonder how closely the Physician will be following Tom's progress. I know there are PALS on this forum that don't even have these resources (like BIGH) available and I am grateful that we live in the NY Metro area. It's just been scary and disappointing. Thanks for reading...Kathleen (Tom's Wife).
Communication definitely seems lacking. If you continue there the next visit I would definitely ask each team member how they should be contacted and what is a reasonable timeframe for reply. Also who is responsible for the portal messages? I message my doctor on the portal but I know it is really her nurse and it is the nurse who answers ( and she does answer).

only one person able to do preop sounds weird but is this the ALS clinic or the department that does the procedure ( interventional radiology probably)?

my clinic operates on a need to see principle so I have a provider appointment and only see others if a need. It sounds like on your first visit everyone was information gathering. If you did not express a need not offering advice may be normal though an attitude of let me know of xyz would have helped I think

it sounds like you need to go forward at least for the tube but if you are not happy maybe a different clinic you could go for a second opinion and if you like them better switch
I am sorry you are going through all this. Our big city hospital in Atlanta communicates well through the portal. They respond within 48 hours. They say on their web-site they have 500 patients but seem to have the staffing for this. We only met with the full ALS team once. Since then we have met with a dietician a couple of times, but have not needed anyone else. My husband has limb onset however which is a little different than your situation. We generally alternate meeting with the nurse practitioner and the doctor. We have been doing everything by telehealth so we don't even commute the 2 hours to the hospital. Again, I am sorry you are going through all this. We don't ever meet with the head of the department who does research and heads the clinical trials.
Thanks Nikki and Mary. There is only one nurse for the als clinic and she must do the tube preop discussion.
I did reach out to another well regarded hospital in NJ today for a consult but they are not making any new appointments. Zero. Even though they tout neurology and als on their website.
We will stick for now with the BigH since we have no other options.
The PT person on the ALS team said she could not suggest any resources. I spent days calling PT providers and none called me back. I found a good PT provider walking to dog by talking to a neighbor.
There is something "wrong" with the healthcare system in the NY metro area. Perhaps it is a labor shortage.
I dont have high hopes any more for very good care/support. Therefore, i am even more grateful for this forum.
Are you in contact with the Joan Dancy foundation? I have a friend in NJ who has found them helpful though she hasn’t had your issues. She travels for clinic
I wouldn't settle for a program that's as flaky as you've described without checking out the options.

Since you're in north NJ, you have all the NYC clinics and I would contact them all-- Mt. Sinai, Beth Israel, NYP, NYU, HSS. Maybe Rutgers is the one in NJ that is not making appts, but from you there is also Hackensack University <1h away and even the Jersey Shore location that is a pretty straight shot from you on the GSP.

The "best" clinic is the one that's best for you. No clinic has a monopoly on some advanced therapy that others don't have. It's not like cancer or vascular surgery.

It's OK to mention hospital names here if you are so moved, and it can help others. No one takes a single experience as more than one data point. We are all here to help each other.

New York Presbyterian.
Seems like a lot of additional stress for both of you. Maybe another site would be a better fit. My husband has been a patient at Mass General for 4 years and we have been treated extremely well. I hope the same for you and your husband in the future.
I always regret not taking that one last vacation. 😢
I am still learning how to work with BigH Clinic. It is not easy.
I had requested Emg #2 to be done b4 #2 clinic meeting. That took some time for me to communicate with doctor/nurse to have it scheduled. The EMG test went fine; Doctors were caring and skilled. Emg doctor asked me to have EMG #1 sent to doctor.
I send EMG #1 to doctor. But I did not realize i needed to wrap the email with lots of context - who are we and why are we sending.
Doctor does not realize/remember that Tom is patient of clinic. Responds that we should follow up in one year!!!! I explain. Oh. Okay will review.
I speak to nurse practioner on phone about peg tube meeting Monday. She says we never met. I say yes we did. She....Maybe i popped head in door. Me..no you met with us. She says something about a full moon and everyone needing her. I try to be kind and thank her for everything she is doing. She says the clinic has 500 patients. And that they lose $500 per visit with each.
I did not need to know the cost of our care, and how the lunar cycles effect patient care!

I asked if Tom has urgent Peg issues, can we go to our local hospital (which is a NJ BigH). She states she does not think a doctor will work on someone else's Peg placement. I said nothing. But....people dont move? Have a peg placed in arizona and move to new mexico? Gee whiz.

Our peg meeting is monday nov 7. Do i need to check the lunar cycle?
I am really sorry. do you really want to stay there long term? My clinic has 500 plus patients. They know me. It is true that clinic lose money on visits but it isn’t your issue and it was utterly unprofessional to say it to you. Since you are in process with the tube guess I would follow through but in your place I would be calling elsewhere Monday morning. They are making this lots harder than it should be
We will be staying with BigH through jan. Then switch to Robert Wood Johnson St Barnabas. That way if Tom is in hospital, our daughter can more easily visit. We have Feb appt with Rwjsb.
I am also really sorry she lost her sh*t and dumped on you like that. She must be stressed, but wow not as stressed as a CALS is.

I would suggest with the peg that you plan to get it placed early so that you avoid an urgent situation.
While it could be done elsewhere, you really want this procedure done while Tom is at his best physically, and with a team who are experienced. The peg, or rig may be the choice, is a simple procedure in itself. However ALS can make every simple thing anything but.
Tomswife, just a side note... " I try to be kind and thank her for everything she is doing. She says the clinic has 500 patients. And that they lose $500 per visit with each. "

Lying has become the new normal. They have 500 ALS patients? They lose $500 dollars per each visit.
I highly highly doubt that.

Hope things all come together for you.

Nikki, your clinic has 500 ALS patients too? That'll be 1000 for just two cities of the 100s of other
cities across the United States (Miami, Seattle, Chicago Dallas, Atlanta Los Angeles, New York City
Buffalo, Cleveland, Phoenix for a few. Those adds up to 10,000 alone.) All more could add up to
30,000 ++ ALS'ers more. And... the new trend is to not go to clinic after the first or second visit.

Has there been a new count of people with ALS I've missed? Maybe we can move out of being
a rare disease if I have.

Someone explain to me how ALS clinic is a money loser.
Mass General has patients from all over the world though many are pulled from New England I think. Still my first visit two people asked with great interest where are you from and were disappointed at my boring answer of down the street. Yes they have 500 plus. There are currently 11 doctors and three nurse practitioners in clinic though 4 of the doctors are part time due to other commitments and all are heavily involved in research so no one is seeing patients 5 days a week in clinic. It is also true that some PALS have more than one clinic. My sister did for a while - one in her home state plus mgh.
it is not a lie that clinics lose money on the average visit. MGH is supported by provate philanthropy and also by the MDA I believe as I used to sign a paper release so I could be counted and reported to the MDA. now we do echeckin so I don’t know how it works. I don’t remember the exact numbers but I heard the clinic costs at a conference once. The presenter was comparing in person and televisit costs and in person was in excess of 1000 dollars for mgh
my last visit insurance paid 145 dollars I saw in person a medical assitant vitals/ med review,a research coordinator frs and svc, a PT for assessment, the RN for discussion on med side effects and the doctor ( also the fellow and resident). There are obviously behind the scenes secretaries and such, the facilities to maintain, equipment to buy and maintain and costs of beefits for everyone on top of salart including licensing continuing ed malpractice insurance for all the professionals. I think the cost of those things divided up exceeds 145 dollars which is the medicare allowed amount for an established patient with a level 3 visit ( moderate level). And I am comparatively easy. I have never met the respiratory therapist occupational therapist or social worker.

the lifetime risk of ALS is 1 in 300-400. Not that rare
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