The Lessons A Chronic Patient Learns

“What have you learnt through the process of accessing your medical files, keeping a detailed symptom journal and collating your own medical history?”

This was the question posed to me by a Rheumatologist during 2018.

At the time I was asked this question I was in a consultation room with the senior doctor who asked me the question, the doctor I had been allocated to initially within that specific clinic, two medical students and my husband, Daniel.

Now, for me personally, this scenario was pretty much one of those insecure dream sequences of standing naked in front of hundreds of people to give a speech. Being an introvert who can’t even speak loudly enough for my husband to hear while shopping or give my own order at a restaurant loudly enough for staff to hear, this was public speaking!

As a result I found it very difficult to answer any of the number of questions this doctor put to me with the clarity that each one deserved during my consultation, however the one question that played over in mind for the remainder and subsequent to that consultation was, “What have you learnt?”

I also had one question of my own, “Did he really want my honest answer to this question?” … Because the truth is, no doctor will ever be prepared to hear my honest answer to this particular question in it’s entirety.

Aside from the thoughts I am about to air in relation to the medical community, the biggest lesson I have learnt is that it is vital for each person to know their own medical history. From a personal sand point we should all take note of illnesses and injuries, know our family medical history, along with understanding that in Australia every patient does have access to documented records if needed.

Unfortunately, the sad truth is that patient history, patterns of symptoms and patient records mean almost nothing at a time when doctors simply don’t have the time for their patients. Vital tools within medicine that have been relegated to a status of near on zero importance! … Nonetheless, I still believe everyone should have at least a basic understanding of their own medical history regardless, in particular in the case of chronic illness or significant injury.

On that note, let me digress for just one moment before I go any further so I can give you this piece of information.

Patient Access to Records – Your Rights
In Australia, under the Freedom of Information Act, patients have every right to not only access but also make changes to their medical records, records which are held by hospitals and medical clinics, both public and private.

Private clinics will fight tooth and nail to prevent patients accessing their medical records and charge exorbitant fees to dissuade patients from obtaining those records. Regardless, they are bound by the Freedom of Information Act in Australia and must comply by granting access.

The only time there are grounds to withhold access from a patient regarding their own  medical record is if the content of that record has the potential to have a detrimental effect upon the patient, such as information that may result in suicidal ideation.

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My answer to the question of, “What have I learnt?”, is very much twofold.

First, and very briefly, what have I learnt about myself.

Second, I will express what I have learnt about the medical community and how it functions from the perspective of a patient involved in multiple significant car accidents, chronic illness and through accessing my records.

What I Learnt From My Medical Records

  • There is a definitive timeline of events.
  • Numerous issues do play off of each another.
  • Various issues had existed longer than realised.
  • Discovery of relevant undisclosed radiology findings.
  • Records of treatment and consultations were omitted.
  • Records where deliberately embellished.
  • Based upon my own research there are many avenues that could be explored in my case but never will be.

Above all what I learnt about myself throughout this process is that I am a complete and utter doormat to those within the medical community. But, at the same time I have learnt that I am an extremely strong woman for all I have had to endured, both medically and banging my head against the brick wall that is the medical community in South Australia.

What I Have Learnt About The Medical Community!

  • Good General Practitioners (GPs) are very hard to find. A good GP, once found, has their hands tied by colleagues, protocol, administrative systems and government.
  • A good many medical professionals, across the board of medicine and health services, will not listen to their patients / clients to hear past their preconceived ideas based upon age, appearance, gender, size, family connections and so on … This includes both conventional and alternative medicine.
  • The majority of doctors disregard the expertise that patients with chronic illness or long term injury gain through daily management of their conditions and thorough research undertaken when forced to advocate for themselves and others.
  • Doctors withhold information from patients and omit information from written records.
  • Doctors embellish and at times outright lie, both to patients face to face and in written records about the patient, treatments and observations.
  • Specialists will at times say one thing to a patient verbally during a consultation and something very different in written form to the GP who referred the patient … Next point….
  • Doctors and health care providers are more concerned with avoiding litigation than patient care.
  • A good many male doctors (and at least one female I had the misfortune of a consultation with) disrespect and dismiss female patients in a manner they would NEVER allow any doctor to disrespect and dismiss their own wives, daughters, mothers, sisters or any other female they hold dear. Far less would they stand for such arrogant disrespect and dismissal toward themselves for that matter.
  • Doctors are irritated by patients who refuse to accept psychosomatic pseudoscientific claptrap or psychological illness as diagnosis when clearly physical manifestations associated with injury and/or illness have not been investigated to any reasonable degree…. **Again, NO doctor would allow this form of dismissal for their loved ones, much less themselves.**
  • Doctors are also especially irritated by patients, who out of sheer necessity through their desperation to regain quality of life, embark on their own form of medical education, as well as asking in depth questions that do not allow for dismissal.
  • And Finally … Doctors, for all their supposed superior intelligence in society give voice to ill thought out statements and say the most stupid of things. (That is an entire topic on its own to come!)

Overall what I have learnt is that good medical care in South Australia is extremely hard to come by … Sadly, a statement I am far from alone in expressing.

The reality is that good, empathetic, patient focused General Practitioners with a genuine desire to heal, rather than simply treat symptomatically to keep raking in the money are extremely rare. What concerns me even more however, is that over all GPs are too time poor to answer valid and worthwhile questions, explore patient history in depth or engage in conversation of any great length.

Unfortunately too, we also live in a day and age where the majority of medical professionals are reticent to give full disclosure of a patient’s circumstances to the patients themselves. Added to which, is the choosing to withhold full overview of test and imaging results.

More often than not I believe doctors, specialists in particular, value their misguided belief of superiority over patients and prefer to think of patients as unable to comprehend the complexities relating to their own health. In fact, even within their own community there is a structure of superiority that dictates specific fields be given a higher level of respect with an air of infallibility that means they are never to be called upon or questioned by colleagues within fields of a perceived lower standing.

For example, a GP should never question a colleague of a specialised field without recognising the superior standing of that specialist, either through carefully crafting correspondence to exhibit a humble demeanour or refraining from asking questions that could be interpreted as challenging diagnosis … Even if they are and there is a valid reason for questioning diagnosis.

Another valid point to be made is that medical professionals, right across the board of conventional and alternative medicine, also do make poor decisions for their patients at times, based upon….

  • What is occurring in their own personal lives.
  • The personal beliefs each one of them hold.
  • The personal prejudices each one has acquired throughout their lives.

As we all acquire prejudices throughout our lives, hold our own personal beliefs and can be distracted by our personal lives.

When looking at that fact regarding doctors, the simple truth is that doctors are human! They are not the gods of society to be treated with the undeserved respect that many of my generation were brought up believing them to be based upon their career choice, years of study and self elevated esteem in society alone.

Like all of us, no medical professional in any field is infallible, they do make mistakes, have character flaws and have their off  days … No matter how lofty their position in the medical community, how many years of study they completed or how much money that was poured into their education … They are still only human!

The sheer arrogance of some doctors and the extent of the damage they do to their patients with a blatant disregard for sensitivity toward dignity, all due to their severely overinflated egos, really is worthy of losing their right to practice medicine entirely.

While I can forgive the human failings of doctors to a certain degree, what I can not abide in any form is the deliberate omission of information in a patient’s written medical record held by hospitals and medical clinics. Moreover, what I find utterly reprehensible to the absolute nth degree is the embellishing of written record and any medical practitioner who sees fit to outright lie when making an entry in a patient’s medical record.

Omission, embellishment and outright lies that would be carried out in an unfathomable number of patient medical records all over Australia by doctors and other medical staff, either through human error or to save their own backsides from litigation at the expense of their patient’s well being.

When I acquired my own medical records throughout 2015 to 2016 I was astounded, not only by what I learnt about my own body and health that had been withheld from me, but even more so by the information that had been omitted, embellished and outright lied about in my documented history.

No doubt a good many medical professionals, if they ever read this answer to the question that was put to me, would dismiss much of what I have written as the rantings of a neurotic, attention seeking middle aged woman who is in denial of depression and hypochondria.

However, what I would suggest to both conventional and alternative medical professionals  who want to challenge me on the above mentioned facts, is this … Start listening to what is being said even by your own colleagues and community about the lack of care given to patients by empathy void, arrogantly dismissive medical professionals and the appalling state of decline within South Australian medical services.

More to the point, ask any medical professional who has had the misfortune of becoming a patient within the current medical system as a result of a complex or life threatening condition, especially one that includes pain or supposedly undiagnosable symptoms … And you might just get a rude awakening when one of your own shares their own experience.

I’ve had many interesting conversations with nurses throughout my years of dismissal after multiple car accidents and chronic illness that has spanned almost three decades. I’ve also had conversations with medical professionals who have become patients and their eye opening experience to the damaging nature of the system they were once proud to work within.

Am I a bitterly resentful, frustrated, angry woman who feels like she has an axe to grind?

You bet I am!

However, beyond that bitter resentful woman I am someone who has learnt a great deal more through the acquisition of my medical records, observation and experience throughout almost three decades than anyone within the medical community would care to acknowledge.

To that end I am no longer a woman who has simply learnt along the way through an extremely painful journey in which I lost far too much of my life…. I am now a woman who has found her voice, is breaking her silence and will where ever possible use what I have learnt to prevent anyone I can from experiencing what I have throughout almost thirty years of my life.