Old 11-05-2018, 02:23 PM #1 (permalink)
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Default Question about ALS clinics outside the US and Canada

Hi all,

Iím writing a book on living with ALS. Iím curious if countries besides the US and Canada have a similar clinic set-up to what we have. We have ďALS clinicsĒ which are held approximately every 3 months and are staffed by the attending neurologist and a team of therapists who all see the PALS during that clinic session.

I realize not everyone chooses to attend this sort of clinic. Some just see a neurologist or primary care physician and assemble their own team of therapists.

But whatís the standard outside the US and Canada?

Thanks in advance for your input.
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frankb (11-07-2018)
Old 11-05-2018, 02:30 PM #2 (permalink)
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Default Re: Question about ALS clinics outside the US and Canada

We do in Australia.

In fact, I'm so excited they have just founded one in my local town. All the health professionals who looked after Chris are involved, but it's early days and they hope to expand the number of health professionals involved. They only run the clinic once every 2 months at this point.

For me in the rural area I am in, we had to travel about 250 km into the heart of Brisbane (capital city of QLD), which is another state. They could not coordinate services for us, and we didn't end up being able to see all the specialities on a single day so we only went twice. The first time was diagnosis, then we went back 3 months later. The timing meant we had to leave in peak hour traffic and it took 5 hours to drive home.

Most of the clinics here are in major hospitals in major cities so they are not always available. It seems it can vary from one to another how they are run and how large a range is in the team you see. These are all covered under our public health system.
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Old 11-05-2018, 06:01 PM #3 (permalink)
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Default Re: Question about ALS clinics outside the US and Canada

Not all US clinic follow the see everyone during your visit model. MGH does not. I have an appointment with my doctor or np and see them ( often with a fellow or student as well). Everyone else is on an as needed basis. The request can come from me or be decided by them. So far I have only seen pt a couple of times and the research coordinators

It makes the visits quicker and less tiring but it does mean you don’t meet the other providers before you have an identified need
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Old 11-05-2018, 06:41 PM #4 (permalink)
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Default Re: Question about ALS clinics outside the US and Canada

Same as Nikki. Not sure how other Canadian clinics are run, but mine (Vancouver, GF Strong) is on an as needed (or asked for) basis. The only two people I am guaranteed to see during a visit is the clinic coordinator/nurse practitioner and the neurologist. The other therapists are not exclusive to the clinic and are shared with the spine/brain injury rehabilitation centre- in which the ALS clinic resides in a very small corner of the basement of.
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Old 11-06-2018, 04:25 AM #5 (permalink)
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Default Re: Question about ALS clinics outside the US and Canada

Hi everyone
Here in France the system goes like this : when you are diagnosed after your family doctor has refered you to a neurologist that did the emg and all, you are directed to the regional center for Als. There is one in each region but that means for some people it can be far away. There they see you every 6 or 3 months, depending. I guess that is like what you guys call clinic day. On that day you get tests and you see a swirl of professionals and eventually the top gun comes to tell you what they have concluded and what can be done to make your life easier. They also give the necessary prescriptions and advice.
The rest of the time you are taken care of by your usual doctor, nurses, physiotherapist etc. They are in touch with the neurologist at the hospital.
All the medical expenses, including wheelchair, special bed etc are paid by social security. If you want extra things, then your private insurance might cover them. For instance, we paid for the motor on the wheelchair.
Expenses linked with non medical helpers can be partly covered, depending on your income.
There is also an als volunteer based association that helps but they are not numerous enough. They mainly raise funds.
Also, ambulance service to and from health professionals are covered.
The paper work is overwhelming but it works.
I hope that gives you an idea of how things work here. We are all very greatfull to those who created social security : the national resistance committee just after the war.
have a good day
ML
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