"Coordination of care"

Exhausted and frustrated.

My friend has been unwell for over ten months including frightening symptoms such as loss of sight in an eye and numbness spreading up various limbs. They were admitted last year to our regional hospital and discharged a few days later without a resolution or a plan.

Symptoms worsened and I took them back to the emergency department less than a week after discharge. Then my friend was seen by the hospital avoidance program. They got a lot of assistance from them including a biopsy the next month at FSH which appears not to have been done properly. They were then transferred to care of visiting specialist from FSH, having to travel for biopsies and scans.

There is such a wait between appointments and communication and there seems to be no coordination. Each month and test goes by without any diagnosis or treatment and meanwhile my friend struggles to work and earn a living. They were eventually told that they needed another biopsy. Then they received a letter for a phone appointment. Can’t do a biopsy over the phone? After calling about biopsy was advised need phone appointment before booking the biopsy.

A few months ago, they had a diagnosis and commenced medication. After a month with medication not being effective and continued decline they were told they were referred to another doctor. Now it is the end of May and my friend still has not heard anything about an appointment with the next doctor. It is bad enough being sick but it seems like at least half of the last ten months has just been lost time. How can 5 weeks pass without even hearing when this next appointment will be?