"Emergency Department lack of care"

My relative presented to Rockingham emergency Department, Perth WA with a HAE attack mid-morning recently, a rare blood disorder. They are not yet an adult. They are well aware of this disease, they know when it’s an attack and when it’s not. The swelling caused by HAE was in the Larynx, they have an action plan and a medic alert on their file. I understand that laryngeal attacks are the most severe and unfortunately my relative gets them mostly in this area. They waited in the waiting room for 3hrs, never has a family member with HAE in the larynx has ever had to wait in a waiting room.

 I kept informing them of how my relative felt like the swelling was travelling (classic sign of HAE). They checked my relative's obs which were ok but as the action plan states, the quicker the medication is administered the better. I went to the triage 3hrs from arriving to ask how soon will my relative be seen and if it’s not soon I will take them to another hospital. I recall the staff member gave me what I felt was an annoyed/b****y look (I’m not exaggerating) and I recall they said, hmmm. it may not be HAE, but if I want to go to another hospital then that is my choice. I believe that comment right there showed me they weren’t taking this serious. I stood up and stated, ‘you guys have no idea’ and I took my relative to another hospital emergency department immediately.

I recall that not once did they say, let me find out when your relative will be seen, or let me talk to the Dr. I felt they were so disrespectful and there was seemingly no care what so ever. It was like I was annoying them. I recall their attitude was something I’ve never seen.

The other hospital took my relative straight through, followed their plan, and the Dr called their immunologist. My relative was put in the resuss bay from the get go. Medication was administered within an hour of arriving (has to be prepared as it’s a blood product).

At the time of writing this, they are now in over night as there was a delay in their treatment their larynx is still swollen, another dose will more than likely be needed. Their voice had changed, they started having little coughs and one side of their face started to swell (all classic sign things are worsening) at Rockingham hospital yet I believe my concerns were completely ignored.

I felt so helpless sitting there and seemingly no one took my concerns serious. Everytime I stood up and asked a question or informed them of my relative's medical history, I felt I was treated like I was annoying and exaggerating and didn’t know what I was talking about. I was completely dismissed.

We have had family members pass away from HAE in their air ways very suddenly. If not treated with Berinert on early onset as their action plan states it can be fatal. My relative isn’t out of the woods yet, tonight this hospital will keep a close eye on them and I’m thankful they’ve been amazing and actually followed my relative's action plan perfectly. I can’t fault them.

Our experience was an disgrace and absolutely disgusting the way I believe I and more importantly my relative was treated or should I say, ‘lack of’ is beyond comprehension. The other hospital's pharmacist stated it was one of the best Action plans, so clear and organised they've ever seen, extremely detailed and straight forward.

Now, why couldn’t Rockingham emergency department, especially that clinician we saw, follow the action plan, also stamped ‘Medic Alert’ instead of us being treated seemingly so casually in a life and death situation and told it might not be HAE. This is a child’s life we’re talking about!

I would have picked up that Aishwarya call care phone (my thought prior to leaving) but I needed to get my relative to proper care urgently and thank god I did walk out and take them to the other hospital's emergency department. 

My relative is still being treated at the time of writing this, and we will see what tonight and tomorrow brings. 

In the future we will be bypassing Rockingham emergency department and going straight to another hospital.