"Lack of advice and poor communication from hospitals"

SCGH is only the latest in a string of stressful events that have occurred in the past 6 months. A few months ago, I had a hysteroscopy at Rockingham Hospital who referred me to KEMH without informing me. I found out about it when KEMH rang me about my referral. My follow up appointment with Rockingham wasn’t until the following week. Told them that I was not happy about being referred without being told about it. Following referral and appointment at KEMH, there were a number of phone calls telling me that I need this test and that test. A different doctor each time. The operation was to be done at SCGH due to heart issues. Subsequently, I was referred to Rockingham hospital for a colonoscopy. Without telling me. I wasn’t being told until I had my next appointment with KEMH because I believe they don’t inform patients over the phone.

Appointment at Rockingham was the day after KEMH appointment. After colonoscopy, I was told that I needed a chest ct and referral to Fiona Stanley hospital. Doctor was informed that I had recently had a full body scan and that I was referred by KEMH. I felt they decided that I didn’t know what I was talking about and told me that I had only had an abdominal ct and why did I have the procedure done at Rockingham instead of SCGH. I told them that Rockingham was closer to home. I believe the doctor was getting a little hot under the collar at this stage. They were the one doing all the arguing. I stayed quite calm. They eventually stormed off to make a phone call. When they returned they admitted that I was correct. I had had a full ct and the referral had come from KEMH. It was the closest thing to an apology.

The next couple of months were filled with appointments, tests and phone calls from KEMH and SCGH. When I was requested to have a PET scan I asked what a PET scan was. It seemed the doctor didn’t want to tell me, but eventually did. I didn’t give them a choice. At that stage, I had not queried any of the tests that they wanted me to have. I knew and understood why I was having them. I had heard of PET scans but didn’t know how they differed from a normal ct scan. I just wanted clarification. During this time, I informed both hospitals that, as I live alone, I would need some home help when I was discharged. They were told at each appointment as I knew it would take time to organise. The cancer was the least of the stress. Dealing with the hospitals was worse in my opinion. I felt like I wasn’t a person, I was a football. I felt there was no respect or compassion, but lots of lip service and lots of bullying. The anaesthetist I saw at SCGH was, in my opinion, being a bully and said that they didn’t agree and would ignore the advice from my cardiologist and the KEMH physician.

Fast forward to what was now a double operation. I felt the anaesthesiologist did nothing but complain. The cannula wasn’t right (it was extremely painful) and they had to try a number of times to get an injection into my spine (they kept hitting bone). Their constant complaining didn’t instil much confidence for me. Maybe they thought I would refuse to have the operation if they complained enough. I know the anaesthetists weren’t keen on doing the operation. They were the only ones who had a problem. Everyone else, including myself, knew I wouldn’t have any problems with the anaesthetic. I didn’t. My hospital stay was uneventful, apart from doctors not telling me who they were (I only knew one). The food was excellent, especially as I have many food intolerances.

After discharge, I returned home to absolutely no help. Referral was only sent 2 days after the operation which means I wouldn’t get any help for at least 6 weeks. That’s another story in itself.

Follow up appointment with SCGH. I arrived on time and was logged in but not noted as being there. I didn’t find this out until more than 2 hours later. I was informed that I would be seen next. Not a chance. I ended up being seen by a registrar who could not answer my questions. As I had travelled by public transport from 90kms away this ended up being a very long and stressful day which I was not really well enough to handle. This was my first complaint to SCGH.

KEMH didn’t even follow up until after I made 2 phone calls. I was not given guidelines for after hysterectomy and told to use guidelines for colorectal surgery. Not the same at all. No follow up and too much passing the buck in my opinion. Complaint to KEMH was acknowledged within time and followed up. They have acknowledged the problems and are attempting to resolve/deal with them.

SCGH, on the other hand, have not acknowledged complaint sent a few months ago. They have sent a test request “with compliments” and no other information. I had to ring them to find out what is going on. No explanation given. Had to leave a message with reception. Second complaint was sent for failing to acknowledge 1st complaint and lack of communication from doctors.  I feel they can’t talk to each other why do I think they will talk to me. I know. I am just the patient. I don’t count. I just have to do what I am told. Still have not been told reason for new test. As per hospital guidelines, I believe complaint should have been acknowledged within 5 working days and follow up letter sent within 30 working days. No sign of either.

As someone who suffers from CPTSD and has heart problems, the stress has been horrendous and is continuing.