Sunnybrook, Sunnybrook thou dost waste my time

[Tom's Support]

This is a letter I composed to send to our Durham Region Support Group leader, and our ex leader who is now working with the equipment library.
The letter pretty much says it all...

I waited patiently for Dec 13 to come, with great expectations. This was Tom's appointment day at Sunnybrook.
Tom, ever stubborn and ready to make a point, decided he would NOT go early to have the breathing test done before 10 (appointment time) because they have waisted enough of his life making him late for work, and making him wait all day to see noone.

Well, after much arguement we left and arrived at Olive's desk at 10:30
She quickly prepared the paperwork needed to go to the breathing test on the 6th floor and we went along.
The test was done and I read as much as I could understand on our way back down to the circle of insanity. (This is what I call the centre room with exam rooms all around it.)
the first line said 42%

We were deposited in a room in the circle around 11:30 and waited, and waited.
It was around 1 when we visited with two people we did not need to see.

At 2 I decided I needed to find Myrna. We had yet to speak with the respiratory doctor, get fitted for equipment, AND I wanted to talk about communication devices.
I announced that I have someone else I am also caregiver for and had to take them to an appointment IN UXBRIDGE at 4:30! I said we either see someone right now, or we will have to leave without accomplishing ANYTHING today.

At 2:15 Frances (Communications) came in chewing a cookie from her lunch -- what a concept, remember WE have not eaten.......
This visit was a bit of a waste of time. For 400 to 800 dollars we can lease for a year a device to allow Tom to type his commentary in and have the machine SAY it.
NOPE!

We never did see the doctor to talk about respiration, but DID get to see Larry the salesman who was also chewing a cookie from his lunch. He fitted tom with a mask for a bipap machine, we paid the man approximately 250 and literally flew out of the building at 3:10.

Yes, we were late for the 4:30 appointment in Uxbridge.


You know, wasting 3 hours of our time in the middle of the day so the practitioners can eat lunch, looking at the board rooms full of happy relaxed people doing absolutely nothing and ending up, after 5 hours, doing little more than getting signatures on papers to provide equipment as soon as we are willing to pay for it leaves both Tom and I very frustrated.
All of this could have been done over the phone, and/or by fax. Don't forget, we also had to pay $23 to park.

I really don't think we will be going back to Sunnybrook again. Oh, they are all very sweet and kind, sympathetic even. But the complete lack of respect for the value of time of cals and pals is disgusting.

The good news?
In six weeks there should be two bipap machines and a battery unit arriving on our doorstep.
I just hope we make it.
Or maybe not. Who cares?

There is no real need for this job to be so hard.
You guys are all saints because this is your every day world, I respect your ability to survive it.

That's all for now,

Juliette

 

[sadiemae]

YUP, we came away with the same impression of our local ALS Clinic. Sales people trying to make a buck!

 

[susanf]

I thought it was just me who thought that.

 

[BeckyW]

Our clinic here in VT is wonderful. Yes it's a long day but we have learned how to deal with the changes and been given priceless caring and support. We know can call or mail them and they will do their best to give us answers or connect us with someone who can. I know it's not a just a job for them...they show great respect and compassion.

 

[Al]

Guess I've been lucky. I've been going to Sunnybrook for almost 8 years and never got treated like that. I go Jan. 10.

AL.

 

[Okie2]

That must really be a mess for you both to go thru. I would be very upset to just sit and wait, I feel sorry for you. I also have a very good clinic that just gets things done no hassles.

 

[HelenL]

Wow, the incredible lack of respect for you is astounding to me. Next time you go in, I would say to them ok, where's MY lunch?

When I go to the ALS clinic, I see the nurse pratictioner for the paperwork, vitals, breathing test, etc.; then to the Pulmonary doc, where I luckily just waste his time at the moment, so we chat for a few minutes, do a bit of breathing for the stethoscope; then I wait about 5 minutes or so, the Neuro comes in, he apologizes for keeping me waiting(!), and we go over what we need to do. No salespeople... questions are generally answered promptly, I get any paperwork I request, and I'm out the door with free valet parking. Total time in? Two hours of appointments, little more than a 1/2 hour added each side for travel/parking. I don't even do blood tests there most of the time as I usually have my Dex trial appointment a few days before this one. Oh, and the most astounding thing: some months ago, my Neuro sent me for followup EMG testing (that I should have had done more than 6 months earlier but didn't want), and he evidently was out of town to an ALS conference. He felt badly that I had to wait for my results, and so after working at Mass General in Boston (I go to the clinic at UMass in Worcester), he came out to my home at 8:30 at night to sit down with me and go over the results (which showed more progression). He lives in the same town as me, but I never knew him before last year.

Is there anyone you can call to talk to about this? Sounds like the right arm doesn't have a clue what the left arm is doing. I hope it gets better for you guys...

 

[Felica]

You tell them. Juliette. I agree with Helen. Although I have not been to my first clinic appointment. I pray it is not like that So far the patient coordinator. From my. ALS clinic. Has already been to my home. She brought me a wheelchair. Told me about the pwc they have when I need. And went. Straight from my home to my primary doctors office to get my paperwork released and. Order my cough assist machine. Which I received a week later. I an
M blessed I guess in the fact. That most of the team at Huntsville has been touched by ALS in some way and they are very understanding of what we ( my cals and I ) are experiencing . Maybe your letter will get n the right hands and they will clean house at sunnybrook
Hugs
Felica

 

[susanf]

I do have to say when I go they offer to buy me lunch. Don't get me wrong, they are sweet and kind. I really do like all of the staff. In general it is to make money for the center.

 

[Tom's Support]

Well, Al I wish you all the best -- good karma too because too much can hurt. Tom will be the first to admit that he is not a good patient. I used to be better at waiting, always polite. These days tho I am much concerned to admit that I have very little in the patience department left. (But do grace myself with the fact that 5 hours waiting is a lot to ask)
Tom is my greatest source of frustration because as my mother most aptly described us "Juliette walks through the chores of the world with a grindstone named Tom around her neck."

So, Al don't forget to take a lunch. Maybe a picnic for two if you take your Cal. At least each Pal is in their own room, so you can have a private picnic and eat without gawkers.

The appointment went pretty much as it did the last time we were there except I had expectations. I had hoped that since I had a couple of specific things to accomplish that the visit would be more organized but no, the same haphazard chaos was in effect.
I do remember that when in the hospital if you have a complaint you must simply and sweetly request. Those that demand find that the doctors and nurses move even s-l-o-w-e-r.
Tom is a pretty cranky guy. He got what I believe he deserves, but what about me?
sigh.......

 

[rcharlton]

I always thought that the clinic usually shut down around 2pm - so it sounds like you were forgotten. Sorry to hear about that. It is an awful feeling. You should contact Myrna and tell her what happened. She should get you back in to see the doctors ASAP.

I have had the occasional long wait at Sunnybrook, but usually it is not too bad.

They are swamped on clinic days.

Some days quite a few PALs on ventilators are brought in by ambulance for their appointments. As they are given top priority, the wait is always longer on those days.

When we get stuck over lunch, my wife will run up to the cafeteria to bring some food back while I wait in the room. I am pretty sure that the doctors don't get to eat lunch - or if they do it is on the go. I can guarantee you that no one is having a long leisurely lunch. I don't see how you can begrudge Frances or Larry scarfing down a cookie at 2 or 3pm. These guys are working non-stop.

Equipment leasing rates are high, but over a couple of years it is a lot cheaper than dishing out the $2000 to $4000 to buy the stuff outright. And the money does not go to Sunnybrook itself.

The parking rates at Sunnybrook are criminal. There is no justification for the price. It is not as if it is located downtown where parking is a premium - it is in the,middle of a residential area with nothing else around.

I hope you have better luck next time.

If you are fed up with Sunnybrook, there is a great ALS clinic in London. I went there for a while but the drive was too much. I think you are a bit closer. It is much more structured than Sunnybrook. When you arrive you are given a schedule with times when you to meet with the various people (RT, PT, OT, DR) and they are pretty good at keeping on schedule. Plus they give you a lunch break. Just tell Sunnybrook that London is better for you and I am sure they will give you a referral.

 

[Al]

Dr. Zinman and Myrna I believe have seen this thread and are discussing it.

AL.