"Patient rights"

We entered into a formal written dispute with FSH (Fiona Stanley Hospital) after two visits to the hospital left us feeling incredibly concerned and frightened at how we had been treated by a CNC (Clinical Nurse Consultant), two doctors and an executive staff member.

I have a permanent Hickman line that administers lifesaving medication to me every minute due to my serious medical condition. There are many rules around this line and medication. To date the protocol for when your line becomes compromised and you need to have a new or temporary PICC (Peripherally Inserted Central Catheter) line was to double pump to change over from one to the other. On this day we were admitted as a priority one emergency due to my line expelling itself from my body after a long period of infection.

The CNC informed us that she had implemented a new protocol that now primed into the patient directly instead. There is no published literature on this protocol, nor could she explain the procedure or how she had come to the decision to do it this way. In the entire world all the literature that has been published strongly advises against priming directly into the patient as it can overdose and lead to death, no matter how experienced the nurse is. Also the CADD (Continuous Ambulatory Delivery Device) pump model we have is not designed to carry out this protocol and we pointed this out to everyone, not once, but twice and then again verbally to one of the doctors and in writing to the hospital.

To date we still have no answers about this protocol other than what this doctor told us in writing that it is an unpublished protocol, used in other hospitals around Australia by experienced nurses in the same treating field. We contacted the pump company directly and were informed that our current model of pump should never be used for this protocol and that it was actually phased out more than a year ago. The new pumps however, are made to accommodate this protocol. We were told the CNC knew this and yet we believe she has played Russian roulette with my life twice now and has been endorsed by 3 senior staff members, which includes a consultant. This was our major point of complaint and we are still unsatisfied with the outcome.

There were several other minor issues that have been ongoing for which there was suddenly a resolution once we put it in writing. The apathy we feel towards us and our treatment and the likeliness of future issues arising has left us with a feeling of no confidence in the clinic. It's a great shame as all the treatment we received from the multiple areas in the hospital on the two occasions we were admitted (privately), were outstanding. Once again it's my clinic that I feel drops the ball.

This has been an ongoing issue experienced at another hospital with this CNC. It seemed she stormed out of the room when asked to explain herself and had to be talked back in. The doctor at the time had it brought to his attention and was even shown the written evidence and warnings and his comment was, nothing happened last time. It seemed that he was more interested in preventing my carer from being present and ignoring my patient rights.

I am living with a progressively terminal disease and I fight like hell to stay alive, so I do not appreciate, what is in my opinion, an ignorant approach that wasn't even up for discussion. I gave consent the first time, which was uninformed, but the second time I told the doctor at that time that they were not to go ahead with the procedure until it had been explained in full to my carer who is an expert at taking care of me and the use of my CADD pump.

There is more to this story than I can write here, but instead of being heard and given a chance to discuss this and have some positive outcomes we've been told that we received a thorough review and that our care was of the highest calibre. It is completely unacceptable and I am considering going to the media and APRA to have this investigated.

It has caused great distress for both me and my carer, my health has suffered as a result. I informed the clinic of this and no one bothered to follow up with me. My test results at my clinic appointment recently showed that I desperately needed iron, which has had a very bad effect on my already very damaged heart. This would have been missed if I hadn't asked my GP to add it to the blood form. Another ongoing issue that should not be happening. Where is the person centred approach? Where is the patient experience approach? This is supposed to be a centre for excellence in my particular medical condition and I can tell you now from my experience they have a long way to go to claim that title!