"Patient rights"

About: Fiona Stanley Hospital

(as the patient),

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To date we still have no answers about this protocol other than what this doctor told us in writing that it is an unpublished protocol, used in other hospitals around Australia by experienced nurses in the same treating field.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!

Responses

Response from Paul Forden, Chief Executive, South Metropolitan Health Service

picture of Paul Forden

Dear Breathless not helpless,

Thank you for sharing your story on Patient Opinion. I am very sorry to hear of your health concerns and the challenges you face. We pride ourselves at Fiona Stanley Hospital on providing excellent care, and your feedback is valuable as it helps us continually improve our care.

I would like to reassure you that the new protocol for the CADD pump that you refer to in your story has been two years in the making and involved a panel of national experts in its development. These experts advise that this new method is quicker, more efficient and safer for patients than the old method. This practice is common in other similar highly regarded centres in Australia and is awaiting publication.

However, in discussing this with staff from the clinic we believe we should have offered you the option of continuing with the current protocol you are on or moving to the new protocol. This is the approach we will now take with you and ensure for our other patients in a similar situation.

At your next clinic visit we will, with your agreement, refer you back to the previous protocol. I will also arrange for the Service Director of the area to meet with you to talk through the other concerns you have expressed.

Kind Regards

Paul Forden

Chief Executive

South Metropolitan Health Service

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Update posted by Breathless not Helpless (the patient)

Dear Mr Forden

Thank you for your response, however you still haven't addressed my concerns.

Legacy 1 Operators Manual for CADD-Legacy 1 Ambulatory Infusion Pump Model 6400 continuous delivery. On discussion with the WA representative from Smiths Medical International my Carer was told that the manual and its warning are still valid with the pump I am currently using, and priming directly into the patient should not be done. I have shared this information with you previously, and in my opinion, you have still not answered me adequately.

I would like to draw your attention to point 6 (14th March 2018) correspondence written to me from one of your doctors. They quote:

The new protocol for changing Epoprostenol between different venous access lines is now used by other expert PAH centres including the Alfred Hospital (Melbourne), and St Vincent's Hospital (Sydney). It has not yet been published, but is believed to be simpler and equally safe as the "double pumping" technique. Either of these methods are safe when used by expert staff highly familiar with CADD pumps and venous access devices. A group of Australian nurses are currently developing a national nursing practice standard.

My question is and always has been from day one which model CADD pump is this protocol designed for (priming directly into the patient)?

This is an urgent matter for me as I was informed by the WA representative from Smiths Medical CADD Pump Company that the new protocol was to be used with the new model of CADD pump that currently Fiona Stanley Hospital does not have.

CADD 1 Legacy 1 - Operators Manual - Caution Warnings Section vi

I would like to quote part of this section:

Do not prime the fluid path with the tubing connected to a patient as this could result in over delivery of medication or air embolism.

I await your reply.

Response from Paul Forden, Chief Executive, South Metropolitan Health Service

picture of Paul Forden

Dear Breathless not Helpless,

I am sorry that the explanation provided has not resolved this issue for you and that you have continued concerns about the procedures used with regard to your CADD pump at our hospital.

The staff who oversee your clinical care think it would be best to arrange a time to meet with you to discuss the details that you refer to about the technical use of your pump and how this relates to the procedure in question.

If you contact our Service Director for Service 1 on 6152 2222 with your details, we will arrange a meeting with you as a priority to attempt to resolve this issue and any other outstanding concerns you still have.

Yours sincerely,

Paul Forden

Chief Executive

South Metropolitan Health Service

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