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"How an independent patient advocate made a huge difference to my health outcome."

About: Patient Advocates in Australia

(as the patient),

I was a client of Patient Advocate Sydney in late 2014. I have developed a need to be more informed about my health management. My advocate assisted me during a recent admission for a total hip replacement at a major Sydney teaching hospital (somewhere that you would expect state-of-the-art care.) as I am a single 70+ year old with no family living in Sydney. I’m in pretty decent health but some problems, not great medical language ability and often a bit intimidated by doctors. A friend of mine had used the advocate before.

I would give the hospital 6/10. The anaesthetist did a pre-operation visit, gave me a good deal of detail about the anaesthetic and post operation pain management and departed. My advocate hurried after them, alerted them to my extensive previous spinal surgery (seemingly missed by the anaesthetist in my notes) and back they came to examine me (for the first time). The anaesthetist changed their planned anaesthetic strategy and post operation pain plan and apologised.

Two days after the surgery my blood pressure was very low. I had a long standing heart rhythm problem and was on tablets. When the BP stayed low the intern stopped the rhythm tablets. No cardiac specialist, no cardiograph. Just cancel tablets I had taken for 4 years. The BP stayed low and I could not stand to do my physio. I was told by the staff not to be too much of a princess and to just get on with it. Standing up, feeling faint and no ability to rehab persisted. I contacted my advocate and she asked for a review of my management. The very high dose of pain relief and dehydration were identified as probable culprits and were sorted and I was OK.

I was transferred to another hospital the next day for ongoing rehab where my advocate arranged a cardiac doctor to check me out and they immediately put me back on the cardiac tablets. The surgery at the first hospital was good but my care before and after was just not good enough and stopping the cardiac tablets and not restarting my blood clot tablets was apparently very dangerous. When I said this to the cardiac doctor they laughed and said "Bone boys. I would be surprised if they knew how to take an ECG, much less interpret one". Can that be an acceptable joke?

If you know enough and how to be an assertive patient then you need to be like that. You need someone to look out for you. Question, speak up, stand up for yourself and you will be OK. Best to be proactive and not let problems with poor care happen in the first place.

I would give the advocate 9. 5/10. They were alert, assertive, had really good communication skills and never made decisions for me, rather, they got me to the level of understanding where I was confident to make decisions. The hospital staff really respected them. The advocate cost me about the same as a weekend getaway but they saved me stress, time wasted in hospital, and I now feel much better able to be my own advocate next time.

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Response from Care Opinion Australia 9 years ago
Submitted on 16/02/2015 at 3:28 PM
Published on Care Opinion at 3:30 PM

This response has been posted by Patient Opinion on behalf of Patient Advocate Sydney.

Dear POJAN01,

Many thanks for the kind words. Your very successful outcome owes a lot to your own efforts; your progress despite the pain and the hypotension eventually convinced the staff you were no princess! Yours was a case that absolutely shows how a resourceful patient can recruit the assistance of a patient advocate BEFORE any issues arise and head off trouble early. The more clients I have, the more I am finding how important this is. Collaborating with a patient's healthcare team (when appropriate) can be vital and understanding their language and work culture is invaluable. So far my healthcare training has been warmly accepted by the medical and nursing staff. In Sydney there are now a few public and private hospitals where patient advocacy is welcomed and where staff are initiating referrals. It's a new allied health profession and successful outcomes and stories such as yours are why I have set up our service.. Stay well.

Dorothy Kamaker

Patient Advocate Sydney

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