"Lack of knowledge"

Prior to my presentation to the Emergency Department (ED) at Liverpool Hospital in the last three years, with the inability to even take one step without falling, I contacted Campbelltown Hospital Rheumatology Department (I was attending the Outpatient's Clinic there) to discuss my symptoms. When the Registrar called me I explained that my symptoms of weakness and impaired cognition etc. have returned and I think I am having problems with Myositis and Steroid-Responsive Encephalopathy (SRE), they just laughed and said they were sure I was not having any of these problems. 

Although I can only praise the ED and the nurses in the Neurology Department of Liverpool Hospital, my short-term stay at Neurology was a nightmare which was also full of humiliation. I believe it also placed my life and well being at risk.

I told my medical history to the attending doctor. As I had previously been diagnosed with three co-existing very rare diseases in 2002: Addison's disease, Polymyositis and Steroid-Responsive Encephalopathy (SRE), I stated that my Endocrinologist and GP have all the relevant paperwork regarding my diagnosis.

However, they did not check with my doctors as, I believe, they accessed an old Royal Prince Alfred database where a Neurologist, prior to my 2002 diagnosis, wrote that I was making up my symptoms. I feel that to prove that they were right, this Neurologist did not carry out neurological tests as per standards and which I felt was also unethical. i.e., I often fell due to weakness and could not get up by myself. However, I believe the doctor instructed staff to leave me lying on the floor for hours in the hope that I would get up by myself because I was just making it all up.

I believe it was because of this old report that I had to fight for treatment, and instead of resting, I spent time on the Internet looking for published scientific papers about SRE and how my symptoms and test results fit in. Lucky I am well versed in scientific and medical language. Also, as I was not believed, I was told by the OTs that I should not use a walker but just walk normally. At this point, I barely could make a few steps with a walker.

Even my regular replacement Cortisone was not written up and was given at irregular times, although timing is critical. I was given a bit more Cortisone (about 30mg/day) as that may not hurt. As it was clear that at Neurology the doctors did not check with my Endocrinologist and GP, I asked my family to bring in supporting documents. 

Finally, after three days the Registrar stated that they should have listened to me. 

Had I been listened to from the start and increased the oral cortisone dose, I could have avoided the side effects of long-term high dose steroids, humiliation and risk of injury in and out of the hospital. It would have saved the health care system a large sum of money as well.

The attending doctors' lack of knowledge and resistance to accept that rare diseases occur, could put lives at risk. I feel the head Neurologist should have been able to diagnose SRE, especially as Liverpool is supposed to be a large Centre with experience. 

I feel the problem initially arose because of the Royal Prince Alfred Hospital Neurologist's lack of knowledge and the ability of medical personnel accessing and using outdated medical records. Not honouring a written agreement with the General Manager at Campbelltown Hospital in 2014 to place alerts on my record to alert to the fact that I have these very rare conditions (also Bronchiolitis) and that I am not a psychosomatic patient also contributed, and will continue to contribute, to this problem. They have not even put an alert on that I have Addison's disease and require extra steroids in an emergency.

I feel very scared to use the health system and when I broke three ribs in a fall, I was too scared to go to the ED for fear of humiliation.

My child also got disrespectful treatment a few years ago as Campbelltown Hospital accessed my record instead of theirs and some of my health conditions were copied into my child's record.