EnableMe | enableme - stroke recovery and support

I am up to my 4th neurologist at the Gold Coast University Hospital. My 3rd, who has just moved to Princess Alexandra Hospital (Dr Andrew Swayne) was amazing. I felt as though we created a bond, he knew me and my family well and would pick up the slightest changes in my reflexes etc. He gave excellent advice and I actually looked forward to seeing him for clinics. Upon attending my last appointment at GCUH (first appointment after a PFO closure, which Andrew knew all about), I walked in to the room to see a new neurologist. I'm not a fussy person so it didn't really bother me... until she started Googling my questions. I had to explain what a PFO was, a PFO closure, an Amplatzer and what it was made of. I spent 2 hours waiting for an appointment where the "Doctor" either read me answers off Google or said "I don't know". I realise she is a neurologist and not a cardiologist, but I would have thought she would have a general idea about PFO's and their closure (like Andrew!)... My last question was "I can barely remember anything anymore. My memory is extremely bad" to which she told me it was because I don't work (clearly she doesn't consider parenting a job). How do others deal with ever changing health professionals in the public system?

Hi Rosie

I will be really interested to hear if survivors and carers have ideas about this - this is a very common experience in our health care system and is very difficult to manage. I wrote a blog about working the healthcare system after a family member's long hospitalisation - link is below.

But the most important thing I would say after working in a hospital is that hospitals do actually want feedback about their care. They can't act if they don't know. I'd suggest contacting the hospital's Patient Advocate or Consumer Liaison Officer to provide feedback, and for advice and advocacy. These people work within the system and are a good resource to help you work through issues or concerns.

Kind regards Jude

https://www.strokefoundation.com.au/blog/2015/05/19/how-to-get-the-health-care-you-need

Hi Rosie,

I’m so sorry to hear about your lack of consistency and experience of the public health care system. I agree with Jude in that contacting the hospital’s Patient Liaison Officer would be one avenue to express your concerns and investigate potential solutions. Here are the details for the hospital patient liaison and consumer feedback service: https://www.health.qld.gov.au/goldcoasthealth/html/about/patientliaison.asp

As an alternative, depending on your financial situation and how frequently you need to be reviewed, you could request a referral to a private neurologist via your local GP. There will be a gap to pay but it would ensure consistency of the neurologist. For many this isn’t an option but it may be another avenue for you to consider.

If you wish to discuss further don’t hesitate to call us on StrokeLine on 1800 787 653.

Best wishes,

Simone – Occupational Therapist for StrokeLine

Hi Rosie,

My stroke was at 34 almost 10 years ago and I'm going to be a patient in one form or another (neuro, cardio, physio, ot etc etc etc) for a long time. I hope. I have told my current, 2nd, Neuro that I intend to go to her retirement party as I want to keep her. She is about the same age as me so I should have a relationship with her for another 25 years.

That would be lovely, she's a fantastic Doctor and in terms of continuity of care I would love to have one relationship with one Doctor for 30+ years. All of that is completely out of my control and I have to accept that. It isn't realistic to expect always getting the same person but it would be nice.What is realistic is that in the public health system you may not see the same person twice. Like you I have had unpleasant experiences where I have had to explain things to people who are supposed to be treating me.

So how do I deal with the ever changing person I meet on the other side of the desk? I make myself a "nice" person and an engaging and informed patient. I load the system in my favour. I once attended an appointment where I met someone new who asked what I was there for and I told him exactly what I was there for to which he replied "you know what you want." I see it as my "job" as a patient to be as informed about me as I can so that when I meet someone new on the other side of the desk I don't get dicked around. I know why I'm there and I communicate that.

And I'm always friendly and engaging as a patient. Are you going to enjoy a meal where the waiter is friendly and chatty and makes menu suggestions or throws a menu in your lap and says "fish or chicken?" Who is going to get a tip? I want the best for me so I want the Doctor/physio/ot to like me. It might sound manipulative but if it gets you good care is it a bad thing?

All the best,

Adrian.

Thank you for all of your replies and suggestions. I think this day was a "bad day" for me during my stroke recovery and I have since moved forward with a more positive attitude.

I spoke to my public cardiologist as suggested by this neurologist and his answers were also disappointing and he refused to further investigate, so I made an appointment with my private cardiologist, who decided he wanted to do an echo straight away and upon receiving the results has decided I need to have a TOE which I will be doing tomorrow.

As it is still the first year of my recovery, I think I will go to a private neurologist as suggested, as I am still have a little bit of trouble with my speech and memory (I have a "real job" now and my memory is still not the same).

Thanks again,

Rosie

Hi Rosie,

I'm glad you've received a better outcome from your private cardiologist. Good on you for persevering. As Adrian has stated, the relationship is really important particularly if it is to be an ongoing one. Don't hesitate to call us on StrokeLine if you're having a challenging day. We are here to support you.

Best wishes,

Simone - StrokeLine 1800 787 653

Ever Changing Health Professionals

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