"Chronic pain sufferer"

I am a chronic pain sufferer (endometriosis, adhesions, pelvic congestion syndrome)

I was having a severe pain flare up, had maxed out all my meds at home for days and still in 8/10 pain so I attended Joondalup Health Campus Emergency Department for help.

It was an absolute last resort as I knew I would be in for a long wait but I couldn’t suffer any longer on my own without help!

The triage nurse noted down my 8/10 pain, higher blood pressure (symptom of pain), then told me it will be a long wait. I asked for further pain relief and was told I had to wait.

I ended up waiting for 15 hours in ED, multiple times I asked wait room nurses for help as I was still in severe pain despite having Panadol, Celebrex and buprornorphine before attending hospital. I was occasionally giving 1 stronger pain relief but then kept being told I can’t have anything else in the wait room

Despite seeing them giving stronger pain relief to other patients around me. I was crying, curled up in pain, at one point flagged down a nurse begging for help,

Was told this is not my area anymore, you just have to wait! They walked off leaving me crying to the point of panic attack where other patients were consoling me and giving me tissues.

Eventually after 15 hours of waiting I was taken through to an ED Bed, saw a doctor who immediately saw how bad I was and wrote up stronger meds for me, but it then took them 45 mins to find a nurse to get the meds for me, in the meantime I was moved out of the bay into a corridor, in no sight of any clinical staff, no access to a call bell, 30 mins later the same doctor happened to walk past me crying and apologised over and over saying they still couldn’t find a nurse to administer the meds for me.

I eventually got moved to short stay and things got better, then admitted into the ward where I ended up staying for another 3 nights because the gyno team was having an argument with the pain team on who should prescribe me my discharge meds and discharge me, I refused to leave without prescriptions but nobody would do it because they were having an ego clash.

The amazing nurses on the ward were appalled and advocating for me but getting nowhere. During all this I also got injured by a table falling on me! At the time because I was on so many meds I didn’t feel how bad it was, after leaving hospital the pain was horrible and I ended up with a bruise covering half my thigh!

There is so much more but this is just a brief description of my stay, but after complaining it gets worse!!

I wrote a complaint to the liaison officer at the hospital, at first I got an immediate acknowledgement of my complaint, told I would get a response in 30 days.

I got no response so I followed it up, 2 months later I finally got a response that was very basic, not compassionate and was just a brief rundown of what happened. No accountability taken, barely an apology for being injured by their hospital equipment, instead they chose to talk about how good a job their team did of reporting the incident and removing the table immediately 🙄

But the absolute worst part of the response is they said my medical charts noted 2 pain scores over the 15 hours in ED, one being 3/10, another being 5/10!

I believe this is absolute not true!

As a chronic pain sufferer I live daily with a 5/10, there is no way I would go to hospital for a 3/10!

I questioned this and asked for accountability on the mental health implications of what this ED visit did to me, asked for a copy of my medical records to see if this was true. 

No response apart from them sending the medical records through which did indeed have those incorrect pain scores noted!

I strongly believe that the wait room nurse was biased against endometriosis/chronic pain sufferers and didn’t believe my pain, whether they accidentally or purposely wrote the incorrect pain score I will never know, but regardless I feel it is a serious mistake that had serious implications on the clinical care recieved.

I sent another email explaining this, asking for some acknowledgment/compassion/ anything and no response, I have now sent another email because I am appalled at the lack of compassion, acknowledgement, and honestly just don’t understand why they can’t validate the mistakes they made!

I know I should just get over it but this experience has really affected my mental health, I am petrified of having to ever attend a hospital for help again as I just don’t think they will believe my pain. 

Since this happened I have had another flare up, I refused to go to hospital and spent days in bed writhing in 9/10 pain because I was too scared to go to hospital and that is just really not ok!

Still waiting for a reply to my further emails, I have contacted HADSCO who have also not replied so not sure where to go from here but wanted to share my story for people to be more aware and advocate for themselves.

I wish I had the confidence and energy to use the CARE CALL facility whilst I was in ED, (like my partner calling from home and other patients in the wait room suggested)

I was scared I wouldn’t be taken seriously because of how I was already being treated but realise now this is exactly what that is for.