By What You Give

 

What would you give for good health?  For good health care?

So many patients I have spoken to in Australia and the United States and in more regional parts of New Zealand, struggle in a system that requires them to give more than they have. Good care in some places, depends on your income. I’ve always been a huge supporter of the public health system in this country.  Our hospitals are free for citizens and often the doctors who work in the private sector are also in public. Expertise is shared.  Our local hospital has supported us through my many admissions, surgeries, my husband’s open heart surgery and a few paediatric visits with the kids, for a broken arm and a gastro bug.  We like to think our tax dollar has been well used.  I always send in my feedback, praising the nurses, thanking the hospital for all the many things they do well.  But our system isn’t always fair. See, I live near one of our best hospitals.  If you don’t, life is much much harder.  And given that the catchment area for Auckland Hospital encompasses some of Auckland’s wealthier suburbs, it isn’t exactly equal treatment for all.

In addition, if your health crisis isn’t always acute, your case will be managed by your local GP, or in my case, General Medicine.  I am one of the ‘lucky’ ones to be overseen by the hospital in this way.  Some other local Dysautonomia patients have had their GP’s referrals to General Medicine ignored.  In fact, my cardiologist’s first referral to General Medicine was ignored too.  I have friends from different catchment areas in New Zealand who have been abandoned by their hospital system, simply because the hospital specialists don’t have answers.  It’s been on my mind a lot lately.  There is a little group of patients here in NZ who need better advocacy, better help.  Our situations are acute sometimes and we will head into hospital for a short, or a long stay.  But mostly, our chronic illness is not well managed by our public system.  We are relatively young, we are aberrations, we are outside the norm.

What would I give to change that?  I’d give my time, my energy, my mind and my efforts. And I do.  That is so much, even though it doesn’t look like much, because all of those things are in short supply.   Surviving each day takes a lot of grit.  Making a stand for better care can be overwhelming.  Why is it that sick people must advocate for themselves?  There are so few of us able to speak out, our voice is tiny. It seems like diagnoses need to be intellectually sexy to get attention. Or at least afflict enough people to make them easy to study and treat.  But we are so few, especially in New Zealand.  We don’t have any of those advantages.  Yet somehow, even a small bit of human kindness can’t be offered up with the latest half-hearted-tick-the-box consultation.  If we can’t have doctors who know, or question, can we not have doctors who are kind?

I saw this pithy quote, framed in a poster once on a doctor’s surgery wall a few years ago. It struck hope into my heart.  Despite the fact that his version was text over a picture of a yacht, which made it slightly distasteful (most people don’t ‘get’ enough to buy yachts from their earnings, Doctor).  Despite the fact that I was about to give him hundreds of dollars in exchange for the hope that he might listen to me, the last part of the quote made me think that he understood things.  Important things about the vulnerability of patients and his responsibility to give his medical brain to the case at hand.  I hoped he might want to give of his listening ears, to apply his scientific brain to my situation.

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Apparently, Winston Churchill never said this.  It’s the kind of thing he might have said, but the closest verifiable quote from him that relates to this is the following:

“What is the use of living, if it be not to strive for noble causes and to make this muddled world a better place for those who will live in it after we are gone? How else can we put ourselves in harmonious relation with the great verities and consolations of the infinite and the eternal? And I avow my faith that we are marching towards better days. Humanity will not be cast down. We are going on swinging bravely forward along the grand high road and already behind the distant mountains is the promise of the sun.”  Winston Churchill

That particular doctor did not in fact, know how to give.  He was much like the bogus quote.  Fake.  He nodded and kept his ears shut.  He said ‘yes, yes…’ while he meant ‘no, no’.  He pressed his groin up against me while I was being examined and was offended when I reacted badly. I paid over all those dollars and left the surgery.  Nobody ever bothered to call me back.

I’ve had so many experiences with doctors who earn their living by what they get, yet have forgotten how to give.

And I have had some outstanding doctors.  Who have listened and talked with me, not to me.  I love doctors who don’t assume me to be stupid just because I can’t remember every detail from years of complex medical history.  Who are prepared for the possibility that a non-doctor might have a few brain cells, too. Doctors who write more in their notes while I rifle through my paperwork to find the exact answer they seek.  Doctors who ask good, open ended, probing questions and who are open to exploring suggestions.

But until recently, it had been a few years since I have been in the rooms of one of them.  After the initial flush and flurry of my dramatic Tilt Table, I was a bit of an exotic patient.  Doctors liked to see what my body could do.  I welcomed the interest, it was a chance to talk and raise awareness.  The pacemaker insertion underlined my cardiac issue and if I happened to be at the GP’s office to discuss, say, my cold, I would see the latest rotation-doctor’s eyebrow raise as he read my notes.  And then, another examination, standing obs, sitting obs, explaining.  Then cardiology successfully transferred me to the General Medicine service of our hospital, so that they could coordinate my care between various specialists.  This is because the Autonomic Nervous System overlaps into many medical disciplines and my problems were progressing into a range of areas.  My new General Physician was exceptional.  His name was Dr David Spriggs.

What makes a doctor exceptional? They have to be smart.  But actually, that is a ‘given’ with all doctors.  So what else?  They have to be the other kinds of smart. Intuitive.  Good listeners.  Engaging.  Thorough. Curious. Open minded. They have to be able to hold eye contact, so you know they ‘see’ you.  These things matter.  Dr Spriggs was all of those things.  He had an amplified stethoscope to assist his hearing.  And I often thought, he may have trouble hearing, but it never impedes his listening.  When we came to a hiatus with my treatment, he worked with a talented Registrar to prepare a presentation about me for the Grand Round.  He wanted to canvas his colleagues for ideas.
And some of his colleagues did have ideas.

But then, the hospital moved Dr Spriggs elsewhere and my care was in the hands of the ‘new doctor’.  He summarily dismissed the ideas offered in the Grand Round and said the approach he had decided on with me was, to simply “watch your progression”.  We’ve been with him for nearly two years.  And my illness has progressed.  It hasn’t been much fun for my family to deal with the progression.  It’s been very distressing for me to watch functions deteriorate and disappear, knowing that it is a result of nerve damage that probably won’t be reversible.

We tried to be good about it.  Who are we to judge the approach of the new doctor, any doctor?  We don’t have years of medical training.  I might have read widely on the subject of Dysautonomia, but that doesn’t mean my arts-brain can make good enough sense of everything I read.  We have been diligent and respectful.  Even in the midst of my last conversation with him, I was quiet and respectful.  Determined.  Angry, even.  But still respectful.  I even thanked him at the end of our conversation for the time he had spent talking to me.  Through gritted teeth, but still…!

Then we decided to bite the financial bullet and seek help privately.   And that is how I met my new, new doctor.  Last night.  He doesn’t work in my speciality, but he wants to help me coordinate my care.  He isn’t familiar with Dysautonomia, but he cares enough to read my notes and respond with compassion.  For our first meeting, he cared enough to actually do prior reading,then he made clinical notes about me and devised an action plan.  Almost everything on that plan was to be actioned by him. My hubster’s warm hand, squeezing mine, told me it wasn’t just me that was amazed.  I am not sure if my hubster breathed during that consultation, just in case it was a dream.  Dr Brandon Orr Walker is an endocrinologist.  And he is also a decent, kind person.  He embodies exactly what good doctors should be.

It did cost money to go and see him.  A lot of money.  But I don’t begrudge him one cent.

He might be making a living by what he gets.  But he is making my life matter, by what he gives.
Our system may not be working, but some doctors still do.

10 thoughts on “By What You Give”

  1. Rachel, I live for stories like these from my online friends who finally have positive experiences with Doctors and Specialists. Thank goodness this happened to you, as it’s more far reaching than just you – it affects your whole little family and brings what we all crave – hope.

    1. Thanks Lisa. It’s amazing how very simple it is. Give someone the time of day. Give them your expertise. Give them something to aim for. 🙂 I wish patients like us could go and talk to med students. I would give anything for the chance to make a difference to even one of them about patient interactions. It is such an important thing! Thanks so much for your comment Lisa. Arohanui!

  2. Rachel, it must be something about the specialty. One of my favourites is Professor Ian Holdaway, also an endocrinologist. Thoughtful, thorough, kind, willing to help, treats you like an equal. I’m so pleased for you, I could burst!!!

    1. 🙂 Thanks Lesley! It’s the loveliest thing, to feel cared about! Glad you have a lovely endo! I think we should name all the great doctors, right here on a public forum. They deserve good feedback for all they give.

  3. Thank you yet again Rachel for expressing so eloquently just what so many of us experience. I am one of those denied accessed to General Medicine, I live in the catchment areas of what seems to be one of the worst DHBs, their response to my referral was that I had seen enough Specialists & ‘anymore time spent on me was unjustified’, it would probably take me my very own blog to express just how those words made me feel! I still live in hope of finding that exceptional doctor in my part of NZ & your story shows that it can happen.

    1. Oh Kirsty, that breaks my heart. Of course you have seen lots of specialists! Dysautonomia affects so many different parts of the body! Sometimes the ignorance of people who are supposed to be helpful is more frustrating than anything else. I’ll be sending out good juju to you Kirsty. Maybe we can turn this thing around for Dysautonomia patients in New Zealand. If we keep plugging away at it! I know my voice is not going to be made quiet anytime soon. 🙂

  4. I’ll be watching every step of your journey with this new doc – he sounds fantastic and I can’t wait to see what he can do to make your life easier:)

  5. Oh wow. That is fabulous! I really hope he can make a huge difference in your quality of life.

    I am very inspired by your courage and ability to advocate for yourself. So many of us struggle to do so – that Dr = God Himself mentality is so strong and ingrained even when the Dr is an absolute plonker.

    x

  6. This is so similar to my story. So so many doctors have dismissed me. Only last year did one suggest Lyme Disease and only because I had already done the research and found a doctor who knew about it. I now have my osteopath help me coordinate my care because he is the most compassionate person I’ve seen. It’s so hard and draining to have the medical community fail you. I’m glad you have found someone willing to help you 🙂

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