"Spare a thought"

I am a well-educated, health literate mother who has a child with chronic pain of unknown cause.

The neurosurgery department saw us promptly and offered thorough assessment and care. It was the most worried I have ever been in my life as horrible things were being checked for on MRI. Can I offer a suggestion that it is unacceptable, as a parent, to wait for 72hrs to hear back from the hospital after the scan, that it was all clear. I had rung and been told that it was not back yet, which as I found out was a lie because our paediatrician was cc'd the results and the report informed us of the good news within 3hrs of the procedure. I would hate to think that other parents were in the situation of waiting longer than necessary to hear good news.

Follow-up clinic appointment - a plan was formulated going forward which was not actioned. When I did not hear back from the clinic regarding an appointment for the 2 referrals that were decided, I rang outpatients reception who told me we are not booked for any appointments and have no referrals pending. She said she'd follow this up and get back to me - she didn’t.

I got less than 24hrs notice via text message for an allied health appointment who received an unhelpful background and referral from a doctor we have never seen and doesn’t know my child, suggesting that the referral was essentially to appease the parent rather than the clinical indications decided by our treating team.

Please, please, spare a thought for the families who don’t choose to be in this situation, who would do anything to ease the pain and distress of their child. Yours is the skill and expertise we crave and hope we will find at the states tertiary teaching facility. We are not a number, we are people ... at our most vulnerable. Please handle with care and compassion.