Patient Advocacy
It is essential that the medical model in New Zealand shifts from a delivery of service to an invested and emotional interest in the wellbeing of the patient. Every day we are seeing in main stream media failures in the delivery of that service.
It's that simple!
And that doesn’t mean an overtly intimate interest, but by being invested, the patient becomes the core of their healthcare. It means better care for the patient, less time with admissions and ultimately more cost effective for DHBs as patients are not returning for the same condition time and again.
In todays world model there are many medical advancements in treatment, growth and expansion, in both traditional and holistic therapies. Globally, information is accessible through the internet. Doctors no longer hold the moral high ground around medicine, in fact you can google medical conditions and doctors answers.
Following Ruby's medical misadventure, the experiences she had were founded on not being listened to;
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Ruby knew more about her condition than most of the doctors did.
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Ruby did more research than the doctors and medical/ mental health teams- they could have done it, but didn’t. Even when directed to reputable specialist information.
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Ruby could talk into her condition and emotional well-being and yet was not listened to and in fact labelled in many different ways.
This is RUBY’S VOICE speaking up for those who get lost in the system. Its not changing the system, it’s more about changing the beliefs that support the system.
We have done our research, and its recognized around the world as it is well known as PROFESSIONAL BIAS.
The FIRST SET OF NOTES carries the patients story. The story that the first clinical health engagement decides, whether they play a main care role or minor . Whether based on an opinion formed in a five minute consultation , or based on fact.
The story that never changes for the patient.
The patient can’t get the notes;
Can’t change the notes;
Can’t challenge the notes;
We, and many others, have experienced this.
Every doctor/health professional thereafter reads those notes and this influences their delivery of care.
Rarely is the first set of notes questioned.
Even when a patient has a diagnosis, has supporting documents to disprove , and has done everything within their power to change that opinion.
And remembering these people are “patients” because they are unwell. The process for them to be heard is beyond what most can manage while they are coping with their symptoms. Pa
RUBY’S VOICE is about shifting the belief that what is noted at the beginning must be right and cannot be altered. The global medical fraternity even use the term ‘ professional bias”.
Patient advocacy will be about looking at the current healthcare model and how it needs to be changed, with solutions offered.
Main stream media is reporting weekly of patients despair at not being listened to and failures to be treated. Ruby experienced this, as do most of the Gastroparesis and chronic illness patients.
Empowering patients to have their voice and expanding health professionals experience, for them to be able to accept this more readily and have the patient at the forefront of their own care.
There are obviously wonderful people within the system who provide optimum care, but unfortunately there are many times when the holes line up and patients slip all the way through, with devastating consequences.
Patient advocacy is a multi-faceted area.
The Patients Advocate: Who is this? Who will be the patients voice in the hospital. The person who can see the frustrations and be the one who questions why the patient is not being listened to.
Patient Advocacy: Providing solutions to the current broken model which is continuously proving that there are major gaps in care management.
Ruby had 30 admissions in one year. How can this not show there are problems? If you went to a mechanic to have your car fixed , but returned as there were issues to be told there’s nothing wrong and it continued to have problems, would you accept this?
Ruby wasn’t listened to. Many patients are not listened to.
Ruby’s story will form a key part of patient advocacy. It will be able to be used by patients to open conversations with their health professionals about what their care and treatments needs are. They will be able to refer their healthcare team to it.
Patients we are currently involved with have commented that using Ruby’s journey as a reference has already made a difference with some of their engagements in appointments. On some occasions the health professionals had voiced that they had read published articles by Ruby and it profoundly changed their understanding of Gastroparesis. There are many others putting their voices to raise awareness for Gastroparesis - together we hope for change.
It is intended that the model of patient care will be that the patient will be the centre of their care and will their concerns will be heard.
Support of patients will form another arm. This will be in a role of directing patients to information available, specialists within the Gastroparesis field, and links with other Gastroparesis patients.
Gastroparesis is an isolating and frightening disease and patients can feel very alone on their journey. And often are lacking a support network.
Stacey's passion is patient advocacy.She has fantastic energy and as the Trust gets it's feet on the ground, we will be able to update you on her ideas. In particular she is interested in the support for families of Chronically Ill people. Having her own experiences and being young she is perfect for this role and we are so please to have her on board.
