CFS Discovery Clinic

[Quid]

@lafarfelue @Murph Yep, just arrange to rock up with a USB and they'll pop your records on for you. It costs $10. For $20 they'll send it direct to another doctor of your choice by snail mail, but considering how busy they were I felt safer with the first option. The receptionist did the handover, so Edwina being on leave shouldn't be an issue.

When I went in the staff were super busy, I only spoke to the receptionist and nurse but it seems they were as blindsided by the announcement as the patients. My GP is not willing to continue treatment using the information on Dr. Lewis' notes (quite reasonably in my opinion, it's not her area of expertise and she can't afford to dedicate heaps of her time to learn for just a single patient) so that whole area of my treatment is just getting dropped unfortunately. It's not viable to go up to Sydney or wherever, which I'm sure is the case for most of us.

 

[Quid]

That being said, I'm definitely keeping the Grove Pymble Centre in mind in case it becomes possible for me to get up there in the future - thanks @Mel9 for bringing it up.

 

[lafarfelue]

However what is promised and what is achievable might be very different in the chaos of the place closing! She sent that email on April 12 and then apparenty went on several months leave on April 25. It's not even clear if anyone will be behind the counter.

Oh geez, that’s gotta be some wild times in that office. Yikes. I’ll see what I can do re: getting to the office. Unsure who to alert as no one is answering phones or email Would you mind letting me/us know how you go once you’ve been, please?

Is that AMcD? He certainly didn't seem like the sharpest unit I ever met, either.

Hah, yep that’s the one!

Lewis obviously had great difficulty recruiting good staff.

It’s amazing to me... while sorta understandable for many reasons, including those you listed, it’s just so bizarre how few Drs there are who are geared for this kind of work. It’s a damn shame. There’s definitely an opportunity there, agree 110%!

 

[lafarfelue]

@lafarfelue @Murph Yep, just arrange to rock up with a USB and they'll pop your records on for you. It costs $10. For $20 they'll send it direct to another doctor of your choice by snail mail, but considering how busy they were I felt safer with the first option. The receptionist did the handover, so Edwina being on leave shouldn't be an issue.

I didn’t see your post/s before while I was drafting mine.. thanks for the info! Hopefully it’s ok that I just appear with a USB, but it doesn’t sound like it’s too difficult a process which is great.

My GP is not willing to continue treatment using the information on Dr. Lewis' notes (quite reasonably in my opinion, it's not her area of expertise and she can't afford to dedicate heaps of her time to learn for just a single patient) so that whole area of my treatment is just getting dropped unfortunately.

Ah dear, sorry to hear this. I haven’t even made it to see my GP yet. Really hoping I don’t need to drop what I’m already taking as it’s helped so much.


We need a young gun ME/CFS specialising dr to come sweeping through any time now! Come and save the day and I’ll give you a lot of my money!

 

[Quid]

I didn’t see your post/s before while I was drafting mine.. thanks for the info!

My posts were hidden until approved by a moderator - I think it's because I only recently registered for the forum. So don't worry about missing them, they literally were not visible at the time : )

Really hoping I don’t need to drop what I’m already taking as it’s helped so much.

I don't see why you wouldn't be able to continue getting scripts for stuff you're already taking - they were prescribed by a specialist in the first place and you very well know they'll help. My issue's more to with the fact that I had barely started going to CFS Discovery, so my record is pretty much just initial pathology. I hadn't gotten to the stage of getting prescribed anything more complex than a probiotic.

I did however get a diagnosis at my last visit, so it wasn't all for nothing. It's just a piece of paper, but it'll make it a lot easier to explain what's going on to people like any new doctors, my university when I get back to study and so on.

 

[Murph]

Did anyone get their records by post? I was planning to go there today to get my records but it looks like they might be shut already. Hopefully someone is still reading the email address!!

 

[Quid]

Unfortunately the email said the last two docs were 'concluding on 15th May 2019' - I took that to mean the clinic was closing then... Is the phone line still working?

 

[Quid]

Just did some asking around... medical records have to be held onto for seven years so they're still around, don't worry! The CFS Discovery website has been changed to just have a records transfer request form and an email address, looks like this is the avenue you'll have to use to get your files. Doctors are legally required to have some way for patients to access their files, so the email address will still be checked, but it might not be as prompt as it was when the clinic was open.

 

[muso94]

crud, well there goes that option out the window...

 

[Cath]

I heard today that Dr Lewis passed away a few days ago. I cried when I heard the news.... He was such a wonderful man, always kind and considerate.
His family released this notice...

A few months ago I was talking with my current Dr about Dr Lewis and he said, "To us Drs he is a hero".
He was my hero too!