A question for you about Primary Care Physicians in Ont.

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Al

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Joined
May 25, 2004
Messages
8,083
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Al



How are you? I need your opinion on something and also wanted to brag a little bit about my soon to be grand c hild so I atta c hed a pi c ture.



I have a question for you or maybe something you might want to ask in your forum of other c lients. On c e again we are working on attaining the SEED grant from ALS Canada and the Support Servi c es Committee has identified a need to provide edu c ation to family Physi c ians. There are many c lients who have expressed a need for their own family do c tor’s to familiarize themselves with ALS. We re c ently c ondu c ted a survey of c ommunity health professionals and asked them what the role of family do c tor’s might be in managing and we got an array of answers and c omments. A few were, |the family do c tor should be doing home visits”. Family do c tors should be more involved in c oordinating c are and referring to spe c ialists’ i.e. respiratory assessment if a c lient has no a c c ess to an ALS c lini c . Many c lients who either don’t want to go to a c lini c or are unable to get there never re c eive any kind of respiratory assessment or treatment. Family do c tor’s should be “kept up to date by other servi c e providers i.e. the c ommunity c ase manager or the c lini c to help the flow of servi c es and fa c ilitate de c ision making su c h as G-tubes and respiratory fun c tion’. “Could a family do c tor help a c lient a c c ess spee c h language servi c es. In Sudbury c lients wait months if not years for SLP servi c es and some are no willing to go to Toronto for servi c es and assessments.



These statements I have quoted from our survey Al. Can you c omment on what your thoughts around what the family do c tor’s role should be and what you feel is the type of edu c ation we should be providing for them. I am c onsulting with Dr Joy Wee and Dr Melanson from Kingston and they would like a c lient’s perspe c tive on where the gaps on in c are from a family physi c ian. Maybe you c ould put this to your forum for dis c ussion. What do you think?



Thanks AL

Anyone have any opinions you'd like to share? Even though this comes from ALS Ontario I'm sure anyone''s input would be good.

AL.
PS. For some rason, Suzanne's computer chops words on her.
 
Re: A question for you about Primary Care Physicians

Come on guys don't be shy. Opinions needed.

AL
 
Re: A question for you about Primary Care Physicians

I think it's a great idea.

But finding a GP that would be willing to do this would probably be difficult.

It would take alot of time and effort on their part.

I am hoping that my Dad's GP is willing to do this for him.


If my Dad's GP had been more informed on the symptoms of ALS he might have been able to get him a diagnosis sooner, also.
 
Re: A question for you about Primary Care Physicians

The GP should be the first point of call who SHOULD be familiar with all the aids and tests that are necessary and should be ready and able to share that info. He/she is probably too busy to set things in motion but should at least have all the necessary info in ONE place, on one piece of paper with telephone numbers, email addresses, websites, etc. Just so we are not left flapping around all over the place. Just one piece of paper or one website with your country's or county's contacts and available aids for this malady.

That is my immediate gut reaction
Irismarie, feeling sure she is far from the only one who has had to scrabble left right and centre for information and help
 
Re: A question for you about Primary Care Physicians

I think you guys are right on track. The GP should know more and be able to provide the question to everyday(ALS) issues. I would have to agree w/ andy2020, getting a GP to do this will take a lot of effort on their parts. The home visits would be hard for them.
 
Re: A question for you about Primary Care Physicians

Living in the US, things are a bit different here but since your asking my opinion, I think the GP (or his office nurse/staff) should be the gatekeeper of information/coordination of care for the PALS.

The GP is typically a doc that a person has a relationship with and trusts. The GP should have a good idea of how the person responds to the delivery of complex information. Thus if there are questions about a medication or plan of treatment that was ordered by a specialist, the GP/nurse/office should follow up with the Neuro or Pulmo and then reinforce/advise the patient rather than the individual having to track down the specialist for questions. This would facilitate compliance exponentially.

When you see specialists they are suppose to yet do not consistently keep track of what the other guy is doing. The Neuro or GI doc may order a medicine that the Pulmo doc does not want him to be on, etc. The specialists here are so difficult to speak with - the GP is much more accessible. Thus if one regimen contradicts another, the GP (or office staff) should be making calls to ascertain the best plan of action - not the patient.

The GP may have been managing or will manage medical issues not related to ALS specifically. The specialists tend to focus solely on the problem they specialize in and not the body system as a whole. The patient has ALS but also needs treatment for hypertension, peripheral vascular disease, gout, arthritis, etc. The treatment for these illnesses may impact the treatment plan for ALS and will require some tweaking. The GP is more likely to do the tweaking.

There are more GPs than specialists. It is more likely that if you are having a problem that needs immediate attention you can call/and or see your GP in a day or two where as a specialists typically has appts scheduled 3-4 months out.

My Dad's GP was very responsive to his needs often not having him come to the office if he could answer questions via phone or call in scripts to the pharmacy to help manage symptoms. When we called the ALS Neuro for advice we got advice and consoling but not much action. The ALS Neuro was located about 1 1/2 away and the GP was close.

I could probably go on but accessibility, established relationship and coordination of care are 3 areas that I see in an ideal situation that advocate for the GP role as gatekeeper.
 
Re: A question for you about Primary Care Physicians

This reinforces with me what I already knew, i.e. we have a great family MD!

He was very on-the-ball when we first started with symptoms; in fact looking back on what he said & did, he suspected ALS without saying it, so as not to stress us prematurely. Gave us a neuro consult and ordered the first battery of bloodwork & scans.

When Jim had his physical & his cholesterol was elevated, he knew about the studies of statins & ALS! He is up on a lot of studies; turns out he has 3 other ALS patients right now, and he has had 15 ALS patients in his 35 years of practice! Considering some MDs never see 1 PALS, that is amazing. (also, maybe a little troubling?!? enviromental?)

He is aware of ALSA & all their programs; one of the office nurses has a SIL that works at our local chapter! So they get lots of info.

Now, I'm not sure how home visits would fly. Not sure about other regions in US, but in our area I haven't heard of a home visit by the family doc since "Marcus Welby" (and, not even sure HE did them!) Just out of curiosity, I think I'll ask next visit!

Between him & our ALS clinic which is wonderful, I am feeling very fortunate and very grateful!
(see, doing the New Year resolution thing!)
 
Re: A question for you about Primary Care Physicians

i would like to find a list of pcp who are familiar with als ... separated by state ...saw one like it in about.com thyroid section called find a doctor and the doctor were nominated by the patients... as i am trying to help my son find a new pcp
 
Re: A question for you about Primary Care Physicians

The first thing you need to do when you get a diagnosed of ALS is to get all of your doctors (GP, specialists etc) to talk with each other.

I have a GP that makes house calls for me when the local hospital is overrun with flu cases, as her office is in the hospital. I was lucky enough to find that my GP has had experience with ALS on a personal nature. She does not know everything, admittedly, and we get into some pretty good conversations. This is the person to keep up to date on what is working for you and what does not.

The ALS Rehab Center in Ottawa , is also great as they see you as a team. You get to see many specialists individually, and the team meetings are when they all review what is happening in different areas. Again, you need to keep them up-to-date with what is going on with your GP, as well as asking them to send info back to your GP.

Then there is the community care professionals that are assigned to help you in the home. Though I wish I could get more of their time , I am grateful for the time I do get during the week. They have local nurses that visit, OT's , Case Managers etc. It is good to find these people as soon as you get a diagnosed, to get your name in the system, for them to be ready when the time comes that you need them.

Last but not least are the angels that work for the ALS Society. These are the equipment gawds that do what they can to provide you with loaned equipment.

Living in a small town like Alexandria, I know the pharmacists at Jean Cotu. They are the people that will be dispensing your meds, so its best to keep them updated. My pharmacist took a prescription for the Resource 2.0 and checked my insurance. My insurance did not cover those drinks. She then approached the Community Care and asked them for my card number (I didnt know it existed) which she received, and now Community Care is covering the cost of the drinks I will be PEGGING in the future.

It pays off to be the facilitator of the flow of information between organizations and doctors. Its worth the effort. You need to expect that all doctors will not always know about ALS. So , you teach them. A good doctor is always ready to learn.

I have to exclude the neurologists and surgeons from this group. They do their job , follow up , and then they are done. My neurologist Dr Bourque in Ottawa , was very personable, professional and took the time to make sure I understood everything. At the follow up he told me his job is done and that probably would not need to see him again. My surgeon for the PEG said the same thing. The only time I will see her is when I need to replace the PEG.

So, now I know all the participants in my future, and try to keep them all up to date. Its my future, and want to keep going as long as possible. If your GP isn't helping, make it personal , or even find a GP that is willing to help.

Glen Brittle
 
Re: A question for you about Primary Care Physicians

Think that'll do fine Glen. Now if more Ontarians could comment.

AL.
 
Re: A question for you about Primary Care Physicians

Once my dad received his diagnosed from a neurologist, he was referred to the Stan Cassidy Centre for Rehabilitation in Fredericton . We attented an initial consult with his physiatrist ( a Dr who specialized in motor neuron disease)who cooridnated everything, from the respiratory testing to having dad assessed by OT, PT, Speech, and dietary through the extramural services. He coordinated the repeat MRI and he completed further EMG's. On his initail visist , he was assessed by OT who also communiticated with the extramural OT. The extramural staff visist the client in the home so dad didn't have go out. Dad has regular( every 4 months) follow ups with his physiatrist and the staff are always just a phone call away and have been very good at answering any questions that have arisen. Since dad has moved into a veteran's facility, he longer accesses the extramural services as the facilty has OT and PT on staff , as well as dietary. His respirtory needs are coverered by an outside agency. We have been very fortuante with the available services and the coordination of dad's care. In terms of his GP, he really didn't particpate much, as once the diagnosed was made, the physiatrist was dad's main contact, which is actually a good thing. as he is the one who knows this diease and understands its amazing challneges.
 
Re: A question for you about Primary Care Physicians

Surely someone in Ont. has an opinion.

AL.
 
Al, I am not from Ontario but in a very similar situation. :) I am certain that you will recall that Web and I decided after our first ALS Care Team meeting [actually was I DON'T CARE TEAM] to not attend that clinic that was a 2 1/2 hour drive one way. We made a appt with our Family Doctor and asked him if he would be comfortable managing Web's care. He was the first person that we saw and he initiated the MRI and blood work. He and I both suspected that it was ALS. Web was diagnosed in less than 2 weeks from the time that we had our initial visit with our family Dr. It helped that I had worked with him in our local itty bitty hospital and he has been our Dr. for the last decade. He is the "Gatekeeper" and is available to us 24/7 and less than 3 minutes to the clinic. :-D He is very OPEN to doing anything that we want to try. I can phone the clinic and either speak to him or his Nurse with any issues. When it becomes difficult to get Web out of the house, he will come to the house if I need him to come! Personally, I think that having a ALS CARE Clinic is a waste of time and money-a true cash cow. We have PT/OT at our hospital and availabity to Gastro and Pulmonary less than an hour away which is where we have gone for all of those tests, procedures, peg surgery and follow ups. Web's appt with the ALS Care Clinic cost $1800 and was paid by MDA! Our Dr. only charges $65/visit and is covered by Medicare. MDA WILL NOT pay anything towards office visits unless it is at a ALS Clinic. It would be different if the ALS Clinic in Fargo was offering any treatment or availabilty of research studies...We don't need the Neurologist to tell us that he is losing strength. We are blissfully happy to have our local Family Dr. on our team. Web is the first PALS that our Dr. has actually managed but what is to manage really-just the normal issues with decreased mobility, digestion and respiratory. We are HAPPY with our decision!
 
Seriously, GP's need more info...Our GP had never had a patient with ALS, but was at least familiar with some of the stuff. (no better than the internet will provide in a 20 minute read). He tossed my husband off to Pallitive(sp) care doctor within 8 months of diagnosed. (That was emotional.) He's not much better, but has had enough ALS patients to at least be of some assistance. He does Home visits as needed. Prescribes meds as needed. But we are kinda lucky that way. we have an als clinic. we have everyone on our side, to help and be available when we call. I don't know how in other communities people are handling their health care. like i said we are lucky, in comparison.
 
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