Basic question about who organizes your care

[melalthia]

Hi guys

So this a basic question, but I'm a little confused with the practical side of managing care. Who manages your care? The neurologist? Or a primary physician and then, you assemble a team? I've seen people post about hospice and ALS clinics and Occupational Therapists and social workers... and i can't help but wonder who is the ultimate "decider" on who you go to and when you go to. And how often?

I ask because so far my mom is in the beginning stages of all this and she has seen her local Neurologist who sent her to university where they have neurologists who are specialists.. but they are 2.5 hours away. She will be moving to my house in a few months.. and we'll have to start over again in terms of assembling a team. How does it work? Who organizes it all?

thanks!
-mel

 

[BarryG]

Mel, the way it worked for me is I had some issues with slurred speech so I went to my family doctor and he sent me for an MRI and referred me to a neurologist who comes to our town once a month. He examined me and in turn referred me to another neuro who did the first emg and ncv tests. After that I went to a university hospital ALS clinic in Edmonton which is a three hour drive away. The clinic has everyone that I need to see, neurologists, speech language pathologists, dietitians, OT and PT, respiratory technologists, social workers and ALS Assoc representatives and I go in every three months. While I do still have a family doctor he is who I go to for things other than my ALS.

Anyway to answer your question, it is the ALS clinic and me that organizes my care.

 

[indigosd]

Mel, our initial journey was exactly like Barry's. The Neuro and the ALS Clinic is a 2 1/2 hr drive one way. We consulted with our family Dr. and he agreed to manage Web's care. We no longer go to the Neurologist or the ALS Clinic. It wasn't like they could actually do anything to cure him and we felt that we did not need someone to tell us how it is progressing with additional testing. WE ARE VERY HAPPY with our local family DR. ! As long as you have an idea of what she will need so you can suggest it you will be fine. Honestly, YOU will manage her care. I have a plastic expandable folder that I keep copies of all of Web's tests, copies of medical records etc.

 

[DgtofTNfan]

I was thinking the same as Kay Marie when I read your post. Your Mom/You will essentially be the ultimate decision makers.

Although working with the ALS clinic/specialists is ideal, they are few and far between. If you don't live in the same area as a clinic then you may need to rely on a trusted physician who is invested in her care with intermittent access to the ALS clinic/specialists as needed.

My Dad's GP managed his care however having been through the ALS clinic, I had contact information for each of the disciplines Barry mentioned and each staff member was a great resource when I had questions, even outside the clinic appointment.

 

[tajmom]

I've thought about this many times because when my dad was dying (cancer), one of his doctors said to him, "Frank, you have 10 different doctors -- but who is in charge?!?" Was important for making decisions about his care, esp. towards the end.

I consider my local neurologist (who diagnosed me) as my "primary" doc for ALS. He's nearby, caring, nice guy and has enough knowledge of ALS for my comfort level. (Also he had a family member with ALS so he understands.) He knows all the local specialists when I need them. If I were hospitalized he could be there.

That said, the ALS clinic (about 1.5-2 hour drive), which my neuro referred me to, is fabulous and well worth the trip. They know their stuff, they work together, they hook me up with all the equipment I need, keep us up on the latest research and as a bonus they are lovely people. It saves SO much trouble and time when you can take one day and have everyone--PT, OT, social worker, speech therapist, equipment rep, etc. come to you without your even having to change rooms. My local neuro keeps in close touch with them so I feel like we are all on the same page.

 

[abbas child]

I'm glad you asked this question, Mel. My first ALS Clinic was canceled due to weather about a week ago... to be rescheduled. In the last few years I've lost the person who was "in charge" more than once. My first neuro, who is both caring and smart, left the field to start a musculo-skeletal clinic, and he was my back doctor at the time when walking became a problem. So, he did the original diagnosis and then sent me NOT to his previous partner, but to Hopkins. Then my primary care doctor lost her husband--a stay at home husband--to a stroke last January, when he was 52. That seriously disrupted her practice since they have two young children at home. I don't ask her for much, knowing how difficult her schedule and life are. Which leads me to Neuro #2, the partner who wasn't recommended. He's mine, and does NOT communicate or try to be helpful. I'm hoping the clinic will do it all for me, once we get started. In the interim, the forums have been my source of information and support.... so a big "Thanks!" to everyone.

 

[Katie C]

Glen's neurologist is our primary "organizer"... He's very good at getting around red tape, and very protective of his ALS families. But he was the third neurologist we'd seen... took some fighting with Kaiser to get to the right guy, but when we did, it was amazing and well worth the fight.

 

[melalthia]

Thanks for all the comments so far. It's really helping me get a general picture of how to look at the web of care.

Katie.. i'm curious who your neurologist is and what clinic do you go to...if you don't mind me asking? I live in Boulder Creek (which is in the mountains half way between Santa Cruz and Saratoga..) but I work over the hill in Redwood City. We've only been to UCSF so far but i've heard real good things about the Cal Pacific ALS clinic. My mom didn't like the staff at UCSF... but then again. My mom doesn't trust doctors in general. Since you are kind of local i figure I'd ask your opinion

Thanks so much!
-m

 

[Blubear]

Which ever way you go, make SURE the primary care doc has all the records on all the meds and tests etc being done. Be sure to get all your prescriptions at the same place to avoid bad interactions with anything. The primary doc will be able to get a better picture of what all needs to be done, and what you have already had done. Things can be hard with so many specialists and one hand not talking to the other. Just my 2 cents.....
Hugs, Kari

 

[CRF8]

I seem to be my wifes medical organizer. Her GP refuses to make any decisions on anything at all related to ALS. The pulmonary Dr. is the majority of our Dr. visits. We found him and a gastro on our own, locally. Her ALS clinic is too far away, we rarely go.

 

[Just J]

We rely on our Neuro and us. Neuro keeps GP in copy. In some cases it will depend on type of insurance. Our insurance is pretty good and we do not need a referral. We are now being referred to an ALS clinic but have not had first appointment yet. Sometimes it feels like a fulltime job just keeping appointments straight, meds, and where we are with everything. I have begun writing a medical journal to keep everything straight.

 

[Katie C]

Mel... we have Kaiser so the bad news is we are stuck within the Kaiser system.. the good news is with a little creativity Glen is getting superb care at minimal cost. ($100 a month for meds including Rilutek and all his psych meds more than makes the cost of Kaiser worthwhile!) We did a 2nd opinion appointment at UCSF and they were all wonderful. My sister-in-law works in the research department and speaks very highly of everyone there. Our neurologist (Dr North in Hayward) speaks very highly of both clinics. Hope this helps a little.