"Lack of communication, no treatment plan discussed."

I recently experienced a medical episode (stroke or seizure-like) at Saint John of God Murdoch, that could not be diagnosed by the doctors at this hospital. 

I was told an on-call Neurologist will need to see me. Unfortunately this never happened, and so I was transferred to Fiona Stanley Hospital where I was told they have Neurologists on site. 

I had to go through the Emergency Department before being transferred to my pre-planned bed in the Acute Medicine Ward. While in Emergency I asked if I was going to be seen by a Neurologist as SJOG Murdoch Doctors told me would happen? The Doctors in Emergency said SJOG Murdoch have not sent through my notes, so they are waiting on them. They never came. 

I was eventually moved to the Acute Ward where Doctors and nurses said again, SJOG Murdoch have not sent through my notes. And when I asked if they have any idea what happened to me? (Referring to the undiagnosed stroke-seizure-like episode) they said we need to see your results from SJOG Murdoch, and you need to be seen by a Neurologist. 

I was in the Acute Ward for a couple of days, and still no notes had been sent over from SJOG Murdoch, still I had not been seen by a Neurologist, and I hadn't even been seen by a physio or an OT!? (I lost the ability to move my left leg, and fine motor skills in my left hand).

I was eventually seen by a Neurologist in training briefly, who, at the end of our conversation said I will be seen by their boss tomorrow. This never happened. 

I was moved to the State Rehabilitation Service at Fiona Stanley Hospital later that night, with no explanation from any doctor? It seemed no nurses knew why? An on-call doctor was called by my nurse on the Acute Ward to discuss with me my treatment plan, and even they didn't know why I was being transferred? 

The next day at the SRS Ward I was seen by a group of doctors again, where they again said they do not have access to my notes/scans/results from SJOG Murdoch, and they asked me if the Neurologist has seen me yet? To which I said no. Then they said hopefully the Neurologist will see me today or tomorrow. 

The next day the doctors came around again, they said they finally gained access to my scans/results from SJOG Murdoch. They said the results suggest we need to look into rare genetic disorders, but I still need to be seen by a Neurologist. Again. This didn't happen. 

Blood tests and a urine sample continue to be done each day, I assume to investigate genetic diseases, as I had not been seen by the Neurologist they keep speaking about? 

I finally work up the confidence to question the doctors and ask why no investigations/scans were done (since the episode) to rule out a stroke, or vascular issues in general? They said I need to be seen by a Neurologist.. 

The next day I asked the same question, this time I recall they said there's no need for extra scans because they know it wasn't a stroke. I asked how do you know that? How do you know it wasn't any other vascular issue? They said I need to speak with the Neurologist about that. 

They continued to tell me I need more blood tests done to investigate genetic diseases, to which I agreed, and I am grateful that they were investigating something! 

But again I had to ask "so are you confident in telling me that I definitively did not have a stroke, or a vascular issue?" 

To which the doctor said no.

The next day when the doctor visited I recall they started off saying, in a condescending manner, since you're convinced that you had a stroke, I have organised for you to get an MRI, but it won't be until next week. I told them I'm not "convinced" of anything!? I'm purely a patient in a vulnerable position, who experienced an incredibly scary stroke or seizure-like event, that has left me with severe weakness in the left side of my body, unable to walk.. and so yes, I would like some kind of investigation/scans done into causes of these types of episodes! 

I recall they then said unfortunately the Neurologist will not be seeing me at all, as they all agree to look into rare genetic disorders.

At this point I just gave up trying to advocate for myself, and asked if I could please go home :( 

Due to the apparent lack of communication between SJOG Murdoch and FSH, and between the departments at FSH (due to the promise each day that the Neurologist will see me, and never did), and between the doctors, Neurologist, nurses and physio. I did not feel heard, understood, or supported at any stage throughout my admission :( 

The doctor said yes I can go home, and they will tell the nurses. 

My nurse eventually came to my room and gave me a form to sign, consenting to the fact that I am "discharging against medical advice". I broke down crying as I was not aware I was doing anything "against medical advice" as my doctor said yes to me going home! 

I told my nurse that my doctor agreed to me going home, but my nurse said "even if the doctor agrees to it, you still need to be signed off by the nursing team and the physio, to which neither have signed off. And by this time (4pm) the physio had gone home.

Keep in mind I had been asking the physio to see me for 2 days (needing any info/direction at all for my rehab at home), and they never saw me :(  

I was then discharged, with no discharge summary given to me, no idea what I need to do going forward, nothing :( 

Such a horrible, confusing experience :(