There is Nothing Right About This System
We believe PROFESSIONAL BIAS is the basis for patient advocacy.
Patient advocacy, because patients don’t get a fair say because of professional bias.
As the receiver of service; as the person feeling the pain; as the person waiting in ED admissions for 8hrs;
as the person with 30 admissions in one year – FOR THE SAME CONDITION.
We have first hand experience and a list of others having the same experience.
Chronically ill patients are very often misunderstood. The definition of 'Chronic' doesn't adequately describe what a person goes through. "Persisting for a long time or constantly recurring". It's is a weak description for what most would experience; debilitating pain, malnourishment, dehydration to name a few, and not to under estimate the impact of mental well-being. PSTD oftens follows the anxiety from the repeat admissions, the effect of not being understood or believed, and multiple invasive proceedures.
We celebrate the medical model and all the gifts it brings to us and the healing.
Patients want to be treated as individuals , as hurting and emotional, and be able to do their own research and offer their own VOICE into their consultations. To be respected as having a wealth of knowledge due to living long term with their conditions, and to be able to talk about their research.
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One of Ruby’s examples is about research/use around cannabis for pain relief. She had a pain team try to kick her out of hospital for using cannabis, when its recognized around the world for pain relief. To have some person who wants to stop my daughters treatment because she uses an alternative for pain relief because no one will listen to her adverse reaction to Panadol. ADVERSE REACTION TO PANADOL, that simple. She takes Panadol and it turns her stomach, brings her pain, her whole body screams with it and she’s told she’s difficult. She’s told its all in her head. Ruby had done her research, sourced cannabis illegally, taken some and her pain and her symptoms alleviate. She goes back to the medical model, wants to introduce it, want’s to see if any adverse affects and the team won’t engage, try stop her having medical treatment. Even when she was eventually prescribed medicinal CBD by her DHB medical doctor, they are referring her to an alcohol and drug addiction Psychiatrist. Fortunately he was astounded.
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This is where the healthcare model is broken. Health professionals are so set in their scope of understanding and what they will allow into the system. Anything outside what they have been taught or personally understand becomes a grey area which they aren’t’ prepared to explore. That there is no openness to that an alternative may be available, that can work in alignment with their care and can save a patient.
It is often dismissed and often to the point of bullying the patient because of the patients desire to have a different choice.
Another example, which we see in a lot similar situations, is a patient having a medical diagnosis, made conclusively by a labyrinth of tests, but this is ignored and the patient continues to get treated as all in their head or eating disorder.
In Ruby’s case this omission had devasting consequences.
Ruby was with NDHB for two years, seeking treatment for the same illness, Gastroparesis, and the raft of comorbidities as her condition deteriorated. Yet right up to her discharge home to die, SOME clinicians were still saying all in her head. That she was choosing to die.
At what point did ;
a. the evidence of conclusive tests not get taken into consideration
b. her condition , Gastroparesis, not be known about by key team members
c. they did not question this opinion with the evidence of Ruby's actions - struggling through admission after admission.
Her determination to live and her determination to still live life well.
c. If it all psychological, where was a skilled treatment pathway there?
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What Ruby wanted out of life
With a bucket list as extensive as Ruby's you can easily see what she wanted out of life!
Which is why I could never comprehend how clinicians, who were part of her core team repeatedly held the ignorant belief that it was all in her head and she was anorexic.
At no time did she give reason for this belief, unless not conceding to do something that she had either tried before and had an adverse reaction to or knew to be detrimental to her physical wellbeing.
Her symptoms of vomiting and weight loss could have led to this assumption but that would mean her notes hadn't been read and subsequent note taking had a professional bias that was then influencing her care.
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This list was done a year prior to her loosing her battle. She had just been in hospital for a month admission and ended up on TPN
Ruby didn't give up. Ever. Defeated and exhausted but would wake up to face a new day and new challenge with tenacity and strength.
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I would encourage health practitioners to recall this example when dealing with a complex condition. To SEE their patient firstly and then HEAR their patient.
Their story is relevant. Who they are is relevant.
The person you may be just looking at is more than likely unwell, exhausted, anxious, and dealing with all manner of emotions. The person you SEE is the person you should be treating.
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